Monday, 5 November 2012
Sunday, 15 April 2012
Where is the love?
Its the middle of the night and I am awake again. Watching Listening to this, watch listen enjoy and you will have shared something which will help me not to feel so alone.
Thank you Oh & I mean right to the end.....
Oh & dance as well.
Sunday, 1 April 2012
Pretending
I had better start by saying I haven't been anywhere on the Internet much for ages. In fact I haven't been anywhere for ages. Ehlers Danlos right now is kicking me hard.
edited to say, I have been around on twitter, occasionally now I even get a reply to a tweet but I am perplexed by the amount of people I have to trawl through to read the tweets I want to, Twitter still confuses me.
edited to say, I have been around on twitter, occasionally now I even get a reply to a tweet but I am perplexed by the amount of people I have to trawl through to read the tweets I want to, Twitter still confuses me.
GP said to Wheelchair services that I need an electric wheelchair, wheelchair services, say I do but have to write to GP to make sure he thinks I do! Bureaucracy eh. The Occupational Therapist who assessed me (OT) was so nice it made me burst into tears. I hate it when I do that, hate it. I am not used to kind. Theoretically if one can answer the door one is not entitled to an electric wheelchair, but I am no liar, I answered the door to her in my own inimitable style. However, she used her very nice brain and decided that EDS is very like MS and because she allows MS patients an electric wheelchair then I may have one also. She also said that perhaps I should have done this some time ago, the whole wheelchair thing. So despite my getting to 47 and not using one it appears I am to. The whole thing about not using one has been fear and denial. Fear that should I plant my butt in a wheelchair my already compromised muscles would atrophy and die, fear also if I am being honest that I will get fat as it is true that no output of any kind means no loss of calories, also because I thought that the use of one would make me a failure. Because in our family, we were taught to battle on and on and on....... regardless of the pain. So I did.
Now, I find I am all but housebound, I go nowhere because I simply cannot walk anywhere. I have to face this, deal with it and move on. I have listened to my Internet friends because as you know outside the Internet I have allowed friends to fall by the wayside. Its not all my fault I know, but someone like me can easily slip into staying in because its easier that way. So I have had the assessment for the wheelchair. The OT says, I am exhausted, (is it so obvious or is she just really good at her job) that I should look at the wheelchair as a pacing tool. Those of you who have studied pain management will know that pacing is an important tool for managing chronic conditions. And that by using the wheelchair, I may find more energy just to be. So now if my GP signs me fit for the use of one. I go to take the wheelchair test to see if I am competent enough to use one. If I am not very good, they will set it at 2 mph? & if I whizz about and show them I am not going to injure anyone in its use, they will set it at 4mph. I hate being tested always have. I have a driving licence so maybe soon I will get a 'she can drive a wheelchair licence certificate'. I am so lucky. Surely you must sense the deep irony in that. Lucky lucky me,
I don't normally talk about my personal relationships much here but this time I shall a little. Why because I can't hold this stuff inside anymore. Husband has let me down big time as he will not push me in a manual wheelchair and I am having trouble forgiving him for this. Perhaps its a denial thing, perhaps.... (I am unable to self propel due to the EDS). Anyway not prone to discussing my marital upsets here that is my only comment on that.
Other things on the marital front are afoot but I don't think its blog etiquette to discuss too much? Married now for over twenty years I know there are ups and there are downs. ....... Its just where did the laughter go? Where did 'us' go? Has it been stolen by the EDS? I worry that living with me and the demon that is EDS has become to much. But then I am prone to blaming myself for 'stuff'. There are other influencing factors and those are not me but to discuss all of them here would really be putting it out there.
Right now, if I could, if I had money, I would run (ha ha fat chance) but I am sure you whoever 'you' are know what I mean, I would run away. Then if I could I would hold a magic mirror, to see what happened without me there. Would a smile return, a burden be lifted, a life lived with fervour, I am not talking about me. Would the man that I love, whom I think somedays wants rid of me, find happiness without me or would the demons that I don't want to talk of here, still be there with him.
My children are grown, whilst they would not like it, they would cope. But I don't have a magic mirror, I don't have money. If I stayed and he went, then they would have to give towards the rent of this house which they cannot afford. I would get little to contribute to that rent on benefits. Their father works it would be fairer to them if I went. But I can't and don't know if I want to. I just want the 'us' to return. In all probability, we will grow older together, I sound embittered, I am not, I am a realist, my expectations are that of an adult not a Mills & Boon scenario, it is only the very few who really do have a knight in shining armour, I doubt that any marriage, relationship is truly perfect. I need to say all of this I know you are probably thinking, they just need to talk. Its hard to talk if one is not listened to or the subject is changed should there be the faintest hint of serious. So I am here dear Internet, telling you. That is sad. The saddest thing of all is we do love each other, its just got all lost in our life.
(edited to say the following, I wrote all of the above last night, despairing. I mention optimism later in this post and was right to do so. Out of nowhere, husband announced he was taking me out to lunch & I don't mean Pizza Hut, I am talking posh favourite all time haute cuisine restaurant!!!! Perhaps his ears were burning. This gives me hope, hope is good right? I know its there we just have to find it all. I am not saying everything in life is fixed by taking a gal out to lunch but its a good starting point.....) I am keeping all the relationship stuff in because these thoughts happen I just felt I should include the edit so that you don't think my life is total crap, there is just a lot of 'complicated' in it. I guess thats the problem with talking about relationships as where love is involved its not always simple is it).
Other things on the marital front are afoot but I don't think its blog etiquette to discuss too much? Married now for over twenty years I know there are ups and there are downs. ....... Its just where did the laughter go? Where did 'us' go? Has it been stolen by the EDS? I worry that living with me and the demon that is EDS has become to much. But then I am prone to blaming myself for 'stuff'. There are other influencing factors and those are not me but to discuss all of them here would really be putting it out there.
Right now, if I could, if I had money, I would run (ha ha fat chance) but I am sure you whoever 'you' are know what I mean, I would run away. Then if I could I would hold a magic mirror, to see what happened without me there. Would a smile return, a burden be lifted, a life lived with fervour, I am not talking about me. Would the man that I love, whom I think somedays wants rid of me, find happiness without me or would the demons that I don't want to talk of here, still be there with him.
My children are grown, whilst they would not like it, they would cope. But I don't have a magic mirror, I don't have money. If I stayed and he went, then they would have to give towards the rent of this house which they cannot afford. I would get little to contribute to that rent on benefits. Their father works it would be fairer to them if I went. But I can't and don't know if I want to. I just want the 'us' to return. In all probability, we will grow older together, I sound embittered, I am not, I am a realist, my expectations are that of an adult not a Mills & Boon scenario, it is only the very few who really do have a knight in shining armour, I doubt that any marriage, relationship is truly perfect. I need to say all of this I know you are probably thinking, they just need to talk. Its hard to talk if one is not listened to or the subject is changed should there be the faintest hint of serious. So I am here dear Internet, telling you. That is sad. The saddest thing of all is we do love each other, its just got all lost in our life.
(edited to say the following, I wrote all of the above last night, despairing. I mention optimism later in this post and was right to do so. Out of nowhere, husband announced he was taking me out to lunch & I don't mean Pizza Hut, I am talking posh favourite all time haute cuisine restaurant!!!! Perhaps his ears were burning. This gives me hope, hope is good right? I know its there we just have to find it all. I am not saying everything in life is fixed by taking a gal out to lunch but its a good starting point.....) I am keeping all the relationship stuff in because these thoughts happen I just felt I should include the edit so that you don't think my life is total crap, there is just a lot of 'complicated' in it. I guess thats the problem with talking about relationships as where love is involved its not always simple is it).
I dream sometimes of a log cabin, a view, silence, I crave silence. Where recession, world chaos, DLA indefinite soon to turn to PIP which will invade my dignity, fear that the small amount of money that helps me cope will be taken, my condition again misunderstood.I digress, I want to go where nature is my constant companion. Where harsh words don't exist. In my cabin I want my cat that slumbers content on an old cushion, on a veranda in the sun.Utopia would be provisions magically deposited on my doorstep. Don't misunderstand me, I like my home comforts, so to include those would be fantastic. My mother used to say I want doesn't get, its true. But a bit of me still believes that dreams do come true otherwise whats the point in dreaming. There for a reason.
I know there will always be pain, physical pain I think now is entwined in my soul. I wonder sometimes whether it would have been kinder to have turned off that incubator that was the womb where I should have been for three months. That 2lb 2oz baby forty years ago was me. I can virtually hear sharp intakes of breath as I typed the 'turning off' or the taking away of the tubes up my nose that kept me alive. A harsh reality which may make some never come here again, thinking that I should not think let alone say 'that', I know I am lucky, to have two beautiful children, I know I am lucky to have my life. And don't worry I am not suicidal. To explain, for as long as I can remember pain mind blowing pain has been my experience. I only say the thoughts that run through my mind by way of explanation. I cannot help my thought patterns.
Why now when I have coped with it for all these years do I find myself, drowning in pain, slowly sinking as though in quicksand, looking out at the world, a spectator. Screaming silently inside as I try hard not to wake in the morning, hanging on to non restorative sleep, because waking is the beginning of the torture that has become me. Perhaps that's why I have not been blogging what am I supposed to say. All of the this that is not sweet music to anyones ears.
To those of you who may think, oh its because she is unhappy that her pain has spiralled out of control. You are wrong. I understand the psychology of pain. That stress and pain do not go hand in hand. But I have had years of experience coping with the two. In all lives unless one is very blessed, then stress pops up from time to time, external influences and internal combined. So I can intellectualise my state of mind. Clear in my mind. At times of great joy, pain has been my constant companion, I have a deep furrow between my eyes to prove that it is there. Pain holds no prisoners, It does not care if one is happy or sad. I have talked before about finding joy in small things, ie a robin that visits each day, its head on one side, nodding good morning. I am talking of the pain that is me, the one that is part of the essence of me now.
I learnt on a pain management course that pain cannot kill, I knew this anyhow but it is polite to listen. What they failed to say is that pain, steals, it steals choice, robs independence, abducts lives. I can look back now and know without doubt that this is true. For how many who live in pain whatever their condition, live without choices, on the lowest of incomes. I worked, I contributed to society. Now I have run out of give. The few friends I have say I am a good listener. Listening, does not pay bills. I am you may be surprised to read an eternal optimist, I got that from my mother, my father the pessimist, would say goodnight but not before he stated that, he may not be there in the morning. When one is brought up by a pessimist, negativity would be easy to catch (that being a small example of his) ringing in my ears would be my mother's eternal optimism, along with an energy that was like a miracle before ones eyes. In her 70's this optimism still thrives, she jollies my father along, whose pessimism now is his main preoccupation. So for all this time my optimism has prevailed. Shone in fact. Harsh words at me, would not stay in my mind for more than a few moments, forgiving so much, always always seeing through that. So by tomorrow I will drag the optimistic me into life, smiling me, through the pain, pretending. At night when all sleep I don't have to pretend, no one is awake to see the carnage that pain creates.
Well on that note. I will finish this post. Perhaps it is one of those I should not have written and will in time delete. Wracked with indecisiveness, did I say too much, was there clarity, it won't help others with EDS to read it how it is for me, will people understand that for some reason those with EDS often don't respond to pain relief, if they even know how much I take, will I be judged.
Oh bollocks to it all, I am hitting publish.
If you want to click on this link to see the type of view I crave
Scroll down to see the log cabin and interior. To state the obvious I couldn't clamber onto the bar stools at the counter, so my ideal cabin probably wouldn't have that. On the bedding etc, mine would be different. Obviously the outside space would not be compatible with a wheelchair but we can gloss over that for the moment. Its not necessarily the location I would choose but I wanted you to be able to share my dream and this was the only way I could think of sharing. I hope the people that own it don't mind you popping in. I think my ideal location would be Tuscany, Italy but am not sure a log cabin would be entirely in keeping.So you may see a post soon with my Tuscan dream abode! The thing is with the log cabin thing is I could play JJ Cale a lot. Alternatively, I would like one near Kim from frogpondsrock, especially Michelle from Living with Bob and lastly but by no means least Sherry from Word Salads the demylinisation of me (is that right Sherry I hope so) anyway you will find them in my I love to read blog list to the right. Obviously this is a dream so don't worry girls I am not on my way. I do understand this is the internet and all that Jazz.
Thank you if you have read this far it is a long and troubled post, I feel better for the writing f it.
To Kim - for some reason all of your comments go into spam, it pisses me off and I don't know why it happens.
If you want to click on this link to see the type of view I crave
Scroll down to see the log cabin and interior. To state the obvious I couldn't clamber onto the bar stools at the counter, so my ideal cabin probably wouldn't have that. On the bedding etc, mine would be different. Obviously the outside space would not be compatible with a wheelchair but we can gloss over that for the moment. Its not necessarily the location I would choose but I wanted you to be able to share my dream and this was the only way I could think of sharing. I hope the people that own it don't mind you popping in. I think my ideal location would be Tuscany, Italy but am not sure a log cabin would be entirely in keeping.So you may see a post soon with my Tuscan dream abode! The thing is with the log cabin thing is I could play JJ Cale a lot. Alternatively, I would like one near Kim from frogpondsrock, especially Michelle from Living with Bob and lastly but by no means least Sherry from Word Salads the demylinisation of me (is that right Sherry I hope so) anyway you will find them in my I love to read blog list to the right. Obviously this is a dream so don't worry girls I am not on my way. I do understand this is the internet and all that Jazz.
Thank you if you have read this far it is a long and troubled post, I feel better for the writing f it.
To Kim - for some reason all of your comments go into spam, it pisses me off and I don't know why it happens.
Saturday, 4 February 2012
A post for the sake of it...
Thank you all for your comments on previous post. I really really appreciate them. It surely will spur me on to write another garbled post! So here I go. Except I have to read through the last post again to remind what I have written. Hating the spelling errors - 'were' instead of 'where' etc eek.
To Dad who writes - I really have no idea of what blog you are talking about no idea at all! All shuttered up, are you sure you are not getting me confused with someone else? Are you spam in disguise I ask myself.
Thank you commenter's, new and my special people, you know who you are. By the way I haven't deleted any blogs from my reader yet.
xoxoxox
Up late again when I should be asleep. Watching crap on PickTV, wish we could afford Sky then I could watch even more crap. I am really really thirsty and no one is up to help out. Years ago the OT said I need a stair lift. A stranger in my messy house oh lordy no no no..... A while ago I thought I should get OH to fill a flask for me, good idea in theory until the bloody flask rolled under the bed and laid there... enough said. Getting the stair lift will mean that old feeling will arrive in my mind again. Knowing this condition is getting the better of me, when in reality it did that years ago. I won't bore with how I get up and down the stairs at present. So stair lift I do need.
Shorter this post but am determined to keep the blog up in 2012.
I can't write anymore as pain levels a little out of control, So I shall have to keep my thoughts to myself and promise to write more another day. You lucky lucky people .....
Take care all.
ps - please don't waste your energy saying how sorry you are about the whole pain thing. I am not writing for sympathy just distraction. Off to read although not to comment tonight, all those blogs in my reader.....
To Dad who writes - I really have no idea of what blog you are talking about no idea at all! All shuttered up, are you sure you are not getting me confused with someone else? Are you spam in disguise I ask myself.
Thank you commenter's, new and my special people, you know who you are. By the way I haven't deleted any blogs from my reader yet.
xoxoxox
Up late again when I should be asleep. Watching crap on PickTV, wish we could afford Sky then I could watch even more crap. I am really really thirsty and no one is up to help out. Years ago the OT said I need a stair lift. A stranger in my messy house oh lordy no no no..... A while ago I thought I should get OH to fill a flask for me, good idea in theory until the bloody flask rolled under the bed and laid there... enough said. Getting the stair lift will mean that old feeling will arrive in my mind again. Knowing this condition is getting the better of me, when in reality it did that years ago. I won't bore with how I get up and down the stairs at present. So stair lift I do need.
Shorter this post but am determined to keep the blog up in 2012.
I can't write anymore as pain levels a little out of control, So I shall have to keep my thoughts to myself and promise to write more another day. You lucky lucky people .....
Take care all.
ps - please don't waste your energy saying how sorry you are about the whole pain thing. I am not writing for sympathy just distraction. Off to read although not to comment tonight, all those blogs in my reader.....
Tuesday, 31 January 2012
Its all about The Title and other random crap....
To Coffeecup - I hope you are reading this. I don't want to make my email public so wondering how I can contact you - then thought I know if you are on Twitter - go to my twitter name @bramblycat (where you will see I am really inactive and don't really understand how to work the whole campaigning thing) hash in my day was something entirely different - I do have a new phone and am now finally able to connect to all social networks via twitter, but am now OCD worrying away about my phone being associated with so much on line stuff, probably completely unwarranted but until I have some assurance that the thought police will not start following me about if all of my on line and off line, mobile phone life is all intertwined I remain ignorant and a little paranoid? About the whole, link all accounts and be damned policy but the fact is its all probably of such insignificance that it doesn't matter anyhow. All this worsened by hearing on Radio 4 that webpages have been able to collect mobile phone numbers of those who have visited. In the long run does this really matter, are they going to sell the number on and if they do does that matter either. If I start getting calls from people whom I don't know with a strange accent and obviously from a call centre it would be a bother but it is not life threatening. Big brother is watching anyhow, google knows my every click, my every thought at least the ones I have on line. I have nothing to hide in essence I am no criminal. Anyway Coffeecup I digress, find me on twitter follow me then send me a private message letting me know it is you and I can send you my email that way, so sorry your blog had to go private! So sorry but I really understand. Somedays I wonder if it would help if it would be better if mine were and I wrote to myself perhaps I would be able to bare my soul better that way.
I guess thats why I started off annonymous here on this blog, but a lot of what is going on in my life right now is to do with family members health not just mine and how I am dealing with it all or not as the case may be. Although on the surface I look to family as though I am coping inside I am not, so not! Its hard as a lot of what is going on with them is very personal stuff and I don't think its fair to put that 'out there'. But not explaining what is causing me to not cope with some of it would require the detail so I am stuck between a rock and a hard place on that one. I could speak hypothetically I suppose but it would lead I think to a lot of misunderstanding! I am trying to think of a way to do it.....
To dear sherry - thank you.
To dad.... who posted and the rest of the blog name I am so sorry I can't remember. In answer to your query I don't mind either way.
On life - its still here. I am still here. Not quite ready to put into words that which is stuck in my head.
Here is a link to a moving piece of footage - http://www.guardian.co.uk/uk/video/2012/jan/28/welfare-reforms-protest-oxford-circus
Shame it didn't make the front page of All of the papers, it should have done. Just to prove I am not entirely lost in my own world and I am in touch with the welfare reforms, I am just selfishly struggling to cope with the impact the EDS and associated conditions are having on me on a daily basis. There is a woman in the link who mentions that just to do what she did, which I applaud, she had had to take so much pain relief, I expect she is still paying for it now. I feel guilty as am now on such strong pain relief daily and yet rarely get out at all, mine is to get me out of bed in the first place or to just stop me crying with pain, or wracked with spasms.If I took more I would be at risk of comatose and thats no place to go. Let alone find the resources to campaign tirelessly as these wonderful people do.
I loved the inaction of the Police in the footage, my feeling is that they pretty much felt like chaining themselves along with everyone else for two hours. The only thing I would say and this may not be popular but it still gives the message to the public that disability is about the image of the disabled person in a wheelchair. I do understand that this was for the purpose of raising welfare reform issues profile and was for overall representation on behalf of the disabled population as a whole. A job well done and I hate to be negative but it also reinforces the image. Not helping those like coffecup whose blog has had to go private, suffering with terrible agorophobia for example, The cuts affecting her equally, although in her last comment on my last post, she at least is active on twitter with the hash tag spartacus thingy whatsit which I don't understand how to do. Perhaps when I get round to it I will do a post with a easy question and answer thing in it, proving just how dreadful I am at understanding how twitter really works on the campaigning front. And in the doing so I will be able to understand the whole hashtag thingy whatsits and all things twitter, I know there is a guidebook or whatever the terminolgy is for this medium of communication but it seems to assume that I understand a whole lot more than I actually do.
The nuns at the convent I attended would be appalled at how many times I resort to the use of the word 'thingy' on this blog. It used to bother me now its better to write something and include lots of thingies than write nothing at all.
This post is about this and that so please note I listened to your comment, sherry, I am just writing whats on my mind, keeping it real.
So when does one make the decision to remove a blog from ones reader, Not after one irritating post I don't think, but when the author keeps on irritating..... perhaps its time to have a springclean but then comes the nagging thought that I might miss something. I know its the world wide web and I don't have to read a post or return to a blog if I find it irritating but to remove it from ones reader is a whole other matter. I have some blogs in my reader that I actually quite enjoy, have even commented on but the author has never acknowleged a comment and never commented on mine when it was more active. Do they go out with the springclean. I have more blogs in my reader by the way than appear in the sidebar here. I admit that I often don't visit a blog to read the content of a post based entirely on The Title. So if someone has written something like oooh baby had first crap in the title I probably won't go there, whereas if they had written Oh Crap I probably would. I have a hunch that those sites who have a lot of passers popping in to have a look see, are possibly pretty talented on writing witty, appealing titles.
I wouldn't mind a couple of new blogs in my reader. But tend to stay within my comfort zone. I am absolutely sure that there are some riveting reads out there but where to find them I ask myself and do I really want to spend hours trawling the net to find them. Due to pain I can only spend a short time at the laptop so need to spend that time well. I am not expecting anyone to tell me exactly what to do with regard to blogs removal or not or indeed find me the perfect blog, a perfect blend of wit, reality, honesty! I am not lazy and am prepared to do some legwork but I need to feel I am open to new information, a widening perhaps of my horizons, a need maybe to step out of my blogging comfort zone. I will be honest and say I tend to steer clear of blogs were there is a heavy christian emphasis. Not because I am anti-religion, it has probably got more to do with attending a convent school and in truth feel I have done my time. I am reading a few more blogs now, where the author is male and having gotten over a slight feeling of guilt that I occassionally converse with a male my husband knows nothing of, realising that its a bloody blog, not a dating site. The content is often suprising and a much more emotional journey than my perhaps preconceived, misplaced ideas of the male blogger. Because of the whole welfare reform situation here in the UK and the recession I have now more politically based blogs in my reader and find them both stimulating and depressing at the same time. I also have one which I visit simply to know that for some life is a dream, where the blogger lives a life that seems so perfect its almost too good to be true. Living in a vast farmhouse, with wonderful children, a crafting, organic experience. Somedays I can't go there as the contrast to my messy house is too much to bear but I take a peak once every couple of weeks to see how things are going and it is so reassuring that there are more handmade beautifully crafted 'stuff' adorning a lovely family homestead. On the whole I stick to my favourites, finding comfort in that.
I know there are already studies on the increase and impact of internet friendships which are longlasting and provide mutually satisfying interaction and whether this means real life friendships are waning or acts as a compliment etc. I know my condition really really limits my social life so I am now in the position where some blogging friends appear to care more than real time friends whose lives have rushed on ahead of mine.
I still though can't quite cross the divide and have my bloggy friends on my facebook although lately I have popped one in there and felt quite bold in the doing of it. Feeling though that she will be disappointed as there is no picture of me there at all, just a dodo by way of me.I thought the other day that I should find a recent photo of me but it seems it is I who takes the photos of people at family gatherings and the odd one there is of me is certainly not what I think I look like! Perhaps to get me going I will put a photo up of me as a child. My facebook is so locked down that it may as well not exist either, can you tell I have a fear of me going viral ha ha. fat chance. So me the private person indeedy to be here at all is a little miracle. Then now it looks like google will blow my need to keep myself to myself what with my mini social phobia n all, and everything I ever have done will be out there linked to this blog. Have I understood their new privacy policy or not. I don't know much do I and am losing my fear gradually the more I write of showing just how ignorant I really am about a whole lot of stuff,
So I have done well, I have moaned although not much about EDS and me today, shall I, no, I will save that up for another day. I have talked of more than one thing. Admitted my crapness as campaigning either in real time or online on welfare reform. Managed to admit also that despite having a fine mind, oh yes dear reader I do, although hide it well. I am struggling to keep up, particulary with twitter and facebook. I have about ten plus facebook friends most of which are family and a couple of friends who live a very long way away. I don't aspire to have my feed or whatever its called filled with other peoples lives whom I don't really know and on past form never will as keeping people at arms length is my forte afterall. My cloak of steel only really slips here. Which is ridiculous really as anyone could be reading this, if they have got this far they deserve a medal.
So to finally end this vast post. Please note that I wrote it having taking slow release morphine, top up of oramoph as breakthrough pain broke right through like a battering ram, lyrica and a small amount of valium. So to have written anything at all I think is an accomplishment for which I will reward myself with a horlicks.
ps - I find it quite interesting that when one has been out of the blogosphere for a while, not really able to comment either due to health taking a tumble that those who comment mean a lot, a whole lot and then there is a suprise thoughtful comment from a lurker too. Those who one thinks may say something are nowhere. I don't mind though not being a stats person but if sherry didn't comment, after my long period of abscence I admit it, a little tear would stain my cheek for she out of the whole bloggy world is a loyal and respected fellow blogger of whom I do admit to being fond of,
Coffeecup - as I started with you I shall finish. I will miss your blog so very much. I hope we can find a way of staying in contact.
I am one of those people by the way who tend not to comment rather than rant on someones blog if I don't agree with the content, I certainly don't do that awful annonymous comment behaviour which I find so abhorrent.
What makes you just click unfollow?
I guess thats why I started off annonymous here on this blog, but a lot of what is going on in my life right now is to do with family members health not just mine and how I am dealing with it all or not as the case may be. Although on the surface I look to family as though I am coping inside I am not, so not! Its hard as a lot of what is going on with them is very personal stuff and I don't think its fair to put that 'out there'. But not explaining what is causing me to not cope with some of it would require the detail so I am stuck between a rock and a hard place on that one. I could speak hypothetically I suppose but it would lead I think to a lot of misunderstanding! I am trying to think of a way to do it.....
To dear sherry - thank you.
To dad.... who posted and the rest of the blog name I am so sorry I can't remember. In answer to your query I don't mind either way.
On life - its still here. I am still here. Not quite ready to put into words that which is stuck in my head.
Here is a link to a moving piece of footage - http://www.guardian.co.uk/uk/video/2012/jan/28/welfare-reforms-protest-oxford-circus
Shame it didn't make the front page of All of the papers, it should have done. Just to prove I am not entirely lost in my own world and I am in touch with the welfare reforms, I am just selfishly struggling to cope with the impact the EDS and associated conditions are having on me on a daily basis. There is a woman in the link who mentions that just to do what she did, which I applaud, she had had to take so much pain relief, I expect she is still paying for it now. I feel guilty as am now on such strong pain relief daily and yet rarely get out at all, mine is to get me out of bed in the first place or to just stop me crying with pain, or wracked with spasms.If I took more I would be at risk of comatose and thats no place to go. Let alone find the resources to campaign tirelessly as these wonderful people do.
I loved the inaction of the Police in the footage, my feeling is that they pretty much felt like chaining themselves along with everyone else for two hours. The only thing I would say and this may not be popular but it still gives the message to the public that disability is about the image of the disabled person in a wheelchair. I do understand that this was for the purpose of raising welfare reform issues profile and was for overall representation on behalf of the disabled population as a whole. A job well done and I hate to be negative but it also reinforces the image. Not helping those like coffecup whose blog has had to go private, suffering with terrible agorophobia for example, The cuts affecting her equally, although in her last comment on my last post, she at least is active on twitter with the hash tag spartacus thingy whatsit which I don't understand how to do. Perhaps when I get round to it I will do a post with a easy question and answer thing in it, proving just how dreadful I am at understanding how twitter really works on the campaigning front. And in the doing so I will be able to understand the whole hashtag thingy whatsits and all things twitter, I know there is a guidebook or whatever the terminolgy is for this medium of communication but it seems to assume that I understand a whole lot more than I actually do.
The nuns at the convent I attended would be appalled at how many times I resort to the use of the word 'thingy' on this blog. It used to bother me now its better to write something and include lots of thingies than write nothing at all.
This post is about this and that so please note I listened to your comment, sherry, I am just writing whats on my mind, keeping it real.
So when does one make the decision to remove a blog from ones reader, Not after one irritating post I don't think, but when the author keeps on irritating..... perhaps its time to have a springclean but then comes the nagging thought that I might miss something. I know its the world wide web and I don't have to read a post or return to a blog if I find it irritating but to remove it from ones reader is a whole other matter. I have some blogs in my reader that I actually quite enjoy, have even commented on but the author has never acknowleged a comment and never commented on mine when it was more active. Do they go out with the springclean. I have more blogs in my reader by the way than appear in the sidebar here. I admit that I often don't visit a blog to read the content of a post based entirely on The Title. So if someone has written something like oooh baby had first crap in the title I probably won't go there, whereas if they had written Oh Crap I probably would. I have a hunch that those sites who have a lot of passers popping in to have a look see, are possibly pretty talented on writing witty, appealing titles.
I wouldn't mind a couple of new blogs in my reader. But tend to stay within my comfort zone. I am absolutely sure that there are some riveting reads out there but where to find them I ask myself and do I really want to spend hours trawling the net to find them. Due to pain I can only spend a short time at the laptop so need to spend that time well. I am not expecting anyone to tell me exactly what to do with regard to blogs removal or not or indeed find me the perfect blog, a perfect blend of wit, reality, honesty! I am not lazy and am prepared to do some legwork but I need to feel I am open to new information, a widening perhaps of my horizons, a need maybe to step out of my blogging comfort zone. I will be honest and say I tend to steer clear of blogs were there is a heavy christian emphasis. Not because I am anti-religion, it has probably got more to do with attending a convent school and in truth feel I have done my time. I am reading a few more blogs now, where the author is male and having gotten over a slight feeling of guilt that I occassionally converse with a male my husband knows nothing of, realising that its a bloody blog, not a dating site. The content is often suprising and a much more emotional journey than my perhaps preconceived, misplaced ideas of the male blogger. Because of the whole welfare reform situation here in the UK and the recession I have now more politically based blogs in my reader and find them both stimulating and depressing at the same time. I also have one which I visit simply to know that for some life is a dream, where the blogger lives a life that seems so perfect its almost too good to be true. Living in a vast farmhouse, with wonderful children, a crafting, organic experience. Somedays I can't go there as the contrast to my messy house is too much to bear but I take a peak once every couple of weeks to see how things are going and it is so reassuring that there are more handmade beautifully crafted 'stuff' adorning a lovely family homestead. On the whole I stick to my favourites, finding comfort in that.
I know there are already studies on the increase and impact of internet friendships which are longlasting and provide mutually satisfying interaction and whether this means real life friendships are waning or acts as a compliment etc. I know my condition really really limits my social life so I am now in the position where some blogging friends appear to care more than real time friends whose lives have rushed on ahead of mine.
I still though can't quite cross the divide and have my bloggy friends on my facebook although lately I have popped one in there and felt quite bold in the doing of it. Feeling though that she will be disappointed as there is no picture of me there at all, just a dodo by way of me.I thought the other day that I should find a recent photo of me but it seems it is I who takes the photos of people at family gatherings and the odd one there is of me is certainly not what I think I look like! Perhaps to get me going I will put a photo up of me as a child. My facebook is so locked down that it may as well not exist either, can you tell I have a fear of me going viral ha ha. fat chance. So me the private person indeedy to be here at all is a little miracle. Then now it looks like google will blow my need to keep myself to myself what with my mini social phobia n all, and everything I ever have done will be out there linked to this blog. Have I understood their new privacy policy or not. I don't know much do I and am losing my fear gradually the more I write of showing just how ignorant I really am about a whole lot of stuff,
So I have done well, I have moaned although not much about EDS and me today, shall I, no, I will save that up for another day. I have talked of more than one thing. Admitted my crapness as campaigning either in real time or online on welfare reform. Managed to admit also that despite having a fine mind, oh yes dear reader I do, although hide it well. I am struggling to keep up, particulary with twitter and facebook. I have about ten plus facebook friends most of which are family and a couple of friends who live a very long way away. I don't aspire to have my feed or whatever its called filled with other peoples lives whom I don't really know and on past form never will as keeping people at arms length is my forte afterall. My cloak of steel only really slips here. Which is ridiculous really as anyone could be reading this, if they have got this far they deserve a medal.
So to finally end this vast post. Please note that I wrote it having taking slow release morphine, top up of oramoph as breakthrough pain broke right through like a battering ram, lyrica and a small amount of valium. So to have written anything at all I think is an accomplishment for which I will reward myself with a horlicks.
ps - I find it quite interesting that when one has been out of the blogosphere for a while, not really able to comment either due to health taking a tumble that those who comment mean a lot, a whole lot and then there is a suprise thoughtful comment from a lurker too. Those who one thinks may say something are nowhere. I don't mind though not being a stats person but if sherry didn't comment, after my long period of abscence I admit it, a little tear would stain my cheek for she out of the whole bloggy world is a loyal and respected fellow blogger of whom I do admit to being fond of,
Coffeecup - as I started with you I shall finish. I will miss your blog so very much. I hope we can find a way of staying in contact.
I am one of those people by the way who tend not to comment rather than rant on someones blog if I don't agree with the content, I certainly don't do that awful annonymous comment behaviour which I find so abhorrent.
What makes you just click unfollow?
Saturday, 14 January 2012
Hello is there anybody out there? Welfare Cuts, thankyou's & stuff
I know I haven't posted in a very long time. No Christmas Wishes, No Happy New Years..... Although I did sit in front of the laptop thinking I should nothing appeared on my blog. This did not mean I didn't think it all, I just wrote nothing. We had a lovely family Christmas at home. New Year Celebrations are not really my thing and this year even though I meant to see it in, I fell very soundly asleep around 9pm and woke the following morning. Apparently there were fireworks ..... Happy New Year to one and all.
I have been ill, of which I may write, I haven't decided yet. Daughter has also been really ill.
A long silence. Much has passed.
I am popping here to give this link, to show that I do really appreciate all the hard work that has been done. By Kali, from www.benefitscroungingscum.blogspot.com and Sue Marsh see the link to her site via Kali's blog. Apologies for lack of detail you may have guessed already I am tired, very tired. Both of these women have campaigned tirelessly and are I hope managing to rest and recuperate as their work has affected their already very poor health. I admire, respect and thank them both.
This link may help to explain all that has been going on - I haven't the resources to explain myself.
http://www.guardian.co.uk/commentisfree/2012/jan/12/welfare-cuts-cameron
The links within the article are also worth following.
and this http://benefitscroungingscum.blogspot.com/ If you are tired read the second link first as its shorter but still explains.
I am off now. I have been reading all the blogs I follow regularly up until about a week ago. So need to catch up. I hope to blog again far more regularly in 2012. Please be patient as I am rusty and out of practice. So expect waffling, disjointed mumblings about this and that, random thoughts and poor spelling. Oh yes and I will be moaning here again about the reality of living with EDS because I refuse to feel guilty about doing that anymore. So I will moan if I feel like it...... I hope though not too much!
Wednesday, 23 November 2011
Take Action Now
I know I know its all about campaigns again but I need to put this up. If just one person (I am afraid I think one must be from the UK) but nevertheless if just one person could sign the petition having read the link below it would make a difference.
Please click on the link and Take Action - Thank you.
http://thehardesthit.wordpress.com/protest-online/
Please click on the link and Take Action - Thank you.
http://thehardesthit.wordpress.com/protest-online/
Thursday, 17 November 2011
Speak Out - Domestic Violence
(Post edited for clarity I hope on 18/11/11)
Reminded by Glen over at Glens Life jogged my memory to the Speak Out Campaign. Please see further down this post to read his post via the list which I believe if you click on any given title will redirect you to the authors post. (I think he is number 18 listed as Glen) which describes well his reasons for posting about Domestic Violence. I haven't had time to read yet all of the others listed, I am sorry and I will but I wanted to do this post before I went to sleep.I am rusty on blogging so daren't try and be too clever for fear of losing all the links. (edited 18/11/11) Ooops came back today and I realise clicking on the picture to re-direct to the details of the Speak Out Campaign on Wanderlusts blog does not work! So for the Speak Out page on her blog, please click on this link rather than the picture for details. sincere red faced embarrasment for sloppy blogging.
I originally read of the originator of this campaigns experience I believe some time back when she guest posted on Sleepless Night's blog (see sidebar for Veronica's blog at Sleepless Nights) It was a bizarre coincidence when I found a link to Wanderlusts blog by clicking on a link a little while back on Glens blog and realised it was the same blog I already read via Veronica's!
The blogosphere pulling together to back this worthwhile cause. I am supporting for lots of reasons. I don't think you need to hear my reasons, right here right now but I would be grateful if you supported the campaign. It explains how to in full if you click on the picture (please see edit above picture and click on link rather than picture as stated) the details in the link above explaining so much better than I ever could. There are full details of helplines and support organisation worldwide in the last part of the explanatory post found by clicking the above link for anyone needing immediate support. My only comment right now on domestic violence because the campaign is self explanatory and Wanderlusts story an emotional rollercoaster of the reality of domestic violence is that if you are the victim of domestic abuse right now, please please take that first step towards freedom from abuse and seek help now, don't wait until another day because another day could in the worst case scenario be a day too late. Both men & women have died because they have remained silent locked down through fear of violence and/or emotional abuse both equally as torrid to live with. I urge anyone from the bottom of my heart to just take one small step toward a better life, free from the torture of domestic violence. I understand it may seem a step too far but one small phone call/email could be the beginnings of abrighter, happier future.
The link below gives Wanderlusts story on her blog.
Click this text to read see Wanderlusts post From Violence-to-healing
Reminded by Glen over at Glens Life jogged my memory to the Speak Out Campaign. Please see further down this post to read his post via the list which I believe if you click on any given title will redirect you to the authors post. (I think he is number 18 listed as Glen) which describes well his reasons for posting about Domestic Violence. I haven't had time to read yet all of the others listed, I am sorry and I will but I wanted to do this post before I went to sleep.I am rusty on blogging so daren't try and be too clever for fear of losing all the links. (edited 18/11/11) Ooops came back today and I realise clicking on the picture to re-direct to the details of the Speak Out Campaign on Wanderlusts blog does not work! So for the Speak Out page on her blog, please click on this link rather than the picture for details. sincere red faced embarrasment for sloppy blogging.
The blogosphere pulling together to back this worthwhile cause. I am supporting for lots of reasons. I don't think you need to hear my reasons, right here right now but I would be grateful if you supported the campaign. It explains how to in full if you click on the picture (please see edit above picture and click on link rather than picture as stated) the details in the link above explaining so much better than I ever could. There are full details of helplines and support organisation worldwide in the last part of the explanatory post found by clicking the above link for anyone needing immediate support. My only comment right now on domestic violence because the campaign is self explanatory and Wanderlusts story an emotional rollercoaster of the reality of domestic violence is that if you are the victim of domestic abuse right now, please please take that first step towards freedom from abuse and seek help now, don't wait until another day because another day could in the worst case scenario be a day too late. Both men & women have died because they have remained silent locked down through fear of violence and/or emotional abuse both equally as torrid to live with. I urge anyone from the bottom of my heart to just take one small step toward a better life, free from the torture of domestic violence. I understand it may seem a step too far but one small phone call/email could be the beginnings of abrighter, happier future.
The link below gives Wanderlusts story on her blog.
Click this text to read see Wanderlusts post From Violence-to-healing
Sunday, 16 October 2011
Holiday pics.....
OH and I went away for a week. We didn't much care about the weather.
We drank in some silence, peace and enjoyed doing nothing in
particular. As I don't manage much at the best of times the change of scenery was fantastic. Its not that I am a fan of warships if that is what they are! Its that we were near, well not so near that I was uncomfortable, but in the vicinity a Naval port, so they kept appearing by stealth, along with helicopters and I am sure submarines eek. Anyway that is why they are in the pictures. My preference as you can see is for rocks. I don't think its represented well here but those rocks were beautiful to me. The colour variations just beautiful to my untrained eye. Although many were taken on zoom ooooooom on my tiny snappy camera, as EDS and accessing beaches such as these are not compatible. We enjoyed our time together. The dog came too as being rescued he rather felt to be left at home would rather miss the point of being rescued. Husband enjoyed walking him. We stayed as you can see near an old naval lookout point, accounting for the cube like concrete objects in some of the pictures. From my vantage point comfortably ensconced in the living room on a huge sofa I was able to watch some panoramic sunsets. I wish the little cottage which was ours for a week was ours forever. We went in the first week of September, shows how often I blog! They may seem boring to some but for me they represent a week that I wish had been a lifetime.... serenity.
Wednesday, 12 October 2011
It doesn't look as bad as it was
This is a picture taken a few moments after I got OH to remove wedding ring rapidly, much as I love firefighters, I didn't particularly want to bother them to ask them to cut off my wedding ring. Looking at the picture now it doesn't look as bad as it was. I am going through a bout where by evening my hands are swelling anyhow, so my normally skinny fingers look very unatractive to me indeed, EDS hands have a habit of looking older than they are. All I did was open the kitchen door, which has a handle a two year old child could open with ease. Husband and I were sharing a rare moment of peace together. Then it happened. AGAIN. This time on my ring finger. Often I dislocate/sublucate randomly and there is no swelling. This one was dramatic. No pictures of how large it grew as I was too busy, bemoaning my lot. Life is never boring with me around. Since I broke my hand a few years ago, I have favoured my left hand for most tasks and most tasks are painful at the best of times. Fortunately I am blessed with the good old EDS sense of humour and actually I am brave, even if I do say so myself. Bearing in mind, practically all of me hurts a lot most of the time, a dislocation like this one provides enough drama in a kitchen of an evening I think for a weekday night for most. I wonder if a medical professional looking at this would say, can't see much going on there myself, had the picture been taken a few moments previously I imagine they would not have believed I was able to relocate said joint myself. Just a snippet from a day in the life of me, Just to get me going after a bout of bloggers block. Comments disabled on this one. I think it speaks for itself.
Tuesday, 19 July 2011
Photos that actually published from me surely not!
 |
| I know they are not of the best quality and one you will have to lift the computer upside down probably as its come out sideways which it wasnt originally but hey ho I did it, I uploaded them without them doing a disappearing act. I am not known for my photography skills and these haven't been edited otherwise I will be here all night. But I was so fed up that the others disappeared from last post I just thought stop worrying, just try and get them here. My favourite were the Flamenco dancers. The chocolaty chorro's were simply delicious as I explained in last post as normally I am a savoury type of gal. The belly dancers I think were good but as I have nothing to compare them to I couldn't really say. The amount of men transfixed by them was hilarious and their wives and girlfriends stony expressions even more hilarious. We had a mini version of the dance of the seven veils which was my favourite. I would have liked to have sat nearer but I needed a chair and they were further away and even though my little digital camera does zoom I cannot expect it to perform miracles. The weather as you can see was good unlike the torrential rain we are now experiencing. So thats enough from me, I have to practise this photo bloggy thing and the only way I can do it is to just do it! Please don't feel obliged to comment as afterall I have spoken already in last post about the Med Fest. I was just cross as Sherry would say! because something went wrong and they were not in the post they should have been. As Veronica said in a recent post when she was commenting on blogging and looking back at previous posts she had made some time back, she felt like cringing. I wonder when I look back at these if I am still blogging in a years time whether I will just cringe big time at the amateur layout and quality of photos. But this is only a personal blog and I am not out to impress just sharing a little bit of me with those of you that so kindly come here to read. Thank you for your patience. |
Saturday, 16 July 2011
mmm tasty
Just popped in really to make sure the old place is still here.
I am currently trawling the net looking a holidays we can't afford. Trying to look at the ones we can and look at it as quality time together. Now that we are not bound by school holidays we can go when times are quieter which I like. I have a husband who likes things to stay on schedule, everything the same, he says he needs something to look forward to, so its my job to find the something to look forward to which is a much like home as possible. Whereas I would love to travel abroad. He will win on this one otherwise we wouldn't get to go together. I quite like the idea of a cottage somewhere but then think its all a lot of money to stay somewhere where its all someone elses stuff everywhere. I am not sure on a hotel experience as the ones I like the look of are inordinately expensive. I know we did enjoy the 'glamping' experience last year as it was accessible for me and out doory enough for the other half. I think then to myself humph perhaps its just easier to go on virtual holidays, tonight its been a tiny Greek Island. This is probably because daughter is in Greece at the moment. She will return no doubt bronzed and I hope relaxed. The last time I went to Greece I was about the same age as she is now but that was in another life......
So now you know what I am dreaming about.
On the health front, I am three days into HRT and feel a little nervous about it all and not sure why. I am changing from Oramorph to slow release morphine which apparently will be better as one doesn't need to take as much for efficacy. I have no idea if this is true or not as the doctor is going to work out how much I should take and it is going to take a while. I am sure the pharmacist would be able to make the calculation much more quickly but hey ho. He says I may need oramorph for a while for breakthrough pain so I guess it can take a while to get it all organised on appropriate levels. I hate changing meds on principle really as I just hate change full stop.
Tomorrow is a family function day, and I have that feeling when one doesn't want to go. There will be loads there, and its going to be outside and the weather is rain rain rain, so no doubt we will huddle under all manner of tarps and huddle in the garage, and in the house too, although its small. I know its all for a good reason a special birthday. Its OH's side of the family and boy can they drink. I probably sound all scrooge and doom, but as I feel completely exhausted already, the thought of going and watching everyone else get drunk is not filling me with joy. I am crap at small talk, utter crap at it. Dreadful at remembering distant relatives by marriage names and dread the 'and what do you do' questions. But I will put on my happy smiley relative face and answer three million times why I wear braces on various parts of me. As soon as the word Ehlers Danlos pops out of my mouth, eyes glaze over and I see people looking around wildly for more interesting people to talk to. So I shall find a seat, let them all clamber around me getting to the wine and see how it goes. You never go I might enjoy myself.
As you may have gathered I am in a bit of a grump. No particular reason, Although I am mega pissed off that one of our cats has not been seen for nearly a week. I think he overheard the conversation on the phone to the vet arranging the castration and thought, hell I am def not staying around for that scene, I'm moving on. Still hoping that he will come back ..... The other cat appears not to have noticed that he is not here. I love that about animals, if I had a half brother I would surely notice if he disappeared but this appears not to have registered at all. Odd then that Our other elderly cat was distraught last year when her son passed away. Perhaps because there still is another cat about its ok in cat world and they are just crap at counting.
Last Saturday I went with my goddaughter to a local food fayre which was extortionately expensive, the time spent with her was brillant and the Flamenco dancing was good, so will leave now with a photo. Which I really like apart from the bloody date on it, which for some reason was on all the photo's I took that day and totally spoilt most of them. But I must look on the bright side, it didn't rain and there were no drunk relatives there (at least not any of mine). Whilst the fayre was really very good and set in a beautiful location, I would prefer if truth be told to be at a Feria in Spain on my hols! The theme being The Med, so there was a lot of very delicious olive oil, chorro's? which is a delicious dunky pastry thingy dipped into chocolate, not good for the heart but so good for the soul. I have a picture of that too somewhere. I'll go and see if I can find it, if I do I shall pop that into too. I am normally a savoury type of girl but that day this was just the best thing.
I am currently trawling the net looking a holidays we can't afford. Trying to look at the ones we can and look at it as quality time together. Now that we are not bound by school holidays we can go when times are quieter which I like. I have a husband who likes things to stay on schedule, everything the same, he says he needs something to look forward to, so its my job to find the something to look forward to which is a much like home as possible. Whereas I would love to travel abroad. He will win on this one otherwise we wouldn't get to go together. I quite like the idea of a cottage somewhere but then think its all a lot of money to stay somewhere where its all someone elses stuff everywhere. I am not sure on a hotel experience as the ones I like the look of are inordinately expensive. I know we did enjoy the 'glamping' experience last year as it was accessible for me and out doory enough for the other half. I think then to myself humph perhaps its just easier to go on virtual holidays, tonight its been a tiny Greek Island. This is probably because daughter is in Greece at the moment. She will return no doubt bronzed and I hope relaxed. The last time I went to Greece I was about the same age as she is now but that was in another life......
So now you know what I am dreaming about.
On the health front, I am three days into HRT and feel a little nervous about it all and not sure why. I am changing from Oramorph to slow release morphine which apparently will be better as one doesn't need to take as much for efficacy. I have no idea if this is true or not as the doctor is going to work out how much I should take and it is going to take a while. I am sure the pharmacist would be able to make the calculation much more quickly but hey ho. He says I may need oramorph for a while for breakthrough pain so I guess it can take a while to get it all organised on appropriate levels. I hate changing meds on principle really as I just hate change full stop.
Tomorrow is a family function day, and I have that feeling when one doesn't want to go. There will be loads there, and its going to be outside and the weather is rain rain rain, so no doubt we will huddle under all manner of tarps and huddle in the garage, and in the house too, although its small. I know its all for a good reason a special birthday. Its OH's side of the family and boy can they drink. I probably sound all scrooge and doom, but as I feel completely exhausted already, the thought of going and watching everyone else get drunk is not filling me with joy. I am crap at small talk, utter crap at it. Dreadful at remembering distant relatives by marriage names and dread the 'and what do you do' questions. But I will put on my happy smiley relative face and answer three million times why I wear braces on various parts of me. As soon as the word Ehlers Danlos pops out of my mouth, eyes glaze over and I see people looking around wildly for more interesting people to talk to. So I shall find a seat, let them all clamber around me getting to the wine and see how it goes. You never go I might enjoy myself.
As you may have gathered I am in a bit of a grump. No particular reason, Although I am mega pissed off that one of our cats has not been seen for nearly a week. I think he overheard the conversation on the phone to the vet arranging the castration and thought, hell I am def not staying around for that scene, I'm moving on. Still hoping that he will come back ..... The other cat appears not to have noticed that he is not here. I love that about animals, if I had a half brother I would surely notice if he disappeared but this appears not to have registered at all. Odd then that Our other elderly cat was distraught last year when her son passed away. Perhaps because there still is another cat about its ok in cat world and they are just crap at counting.
Last Saturday I went with my goddaughter to a local food fayre which was extortionately expensive, the time spent with her was brillant and the Flamenco dancing was good, so will leave now with a photo. Which I really like apart from the bloody date on it, which for some reason was on all the photo's I took that day and totally spoilt most of them. But I must look on the bright side, it didn't rain and there were no drunk relatives there (at least not any of mine). Whilst the fayre was really very good and set in a beautiful location, I would prefer if truth be told to be at a Feria in Spain on my hols! The theme being The Med, so there was a lot of very delicious olive oil, chorro's? which is a delicious dunky pastry thingy dipped into chocolate, not good for the heart but so good for the soul. I have a picture of that too somewhere. I'll go and see if I can find it, if I do I shall pop that into too. I am normally a savoury type of girl but that day this was just the best thing.
Thursday, 16 June 2011
Truth, Compassion, Tolerance - Human Rights Art
nb, I have not been posting much of late. In part because when I read it back its all me me me, crap grammar and limited vocabularly. Anyway this one has been sitting in draft for a while. Its all a bit garbled but I hope somehow I manage to get across that this Art had a profound effect on me. Even writing this note to the post, gives me that same feeling, I think its in my heart. It fills it with a hope. I will never forget that day ever. I haven't been posting because my health is frankly shit and until it improves a little I just can't keep posting. I can't stand the fucking pain. Because in truth I can. I just think I can't.
The other day, feeling a little sorry for myself. I had intended to go to our local town to shop for some new pj's. (I spend a lot of time in them after all). I parked in the disabled bay. Sat in the car I wanted to cry. An attack of I am in so much pain, why did I think I could do this alone came over me. Along with the usual, for god's sake woman, get over yourself and just do it. So I slowly got out of the car, walked tortuously around the corner and realised I just could not cope. Town was busy and people kept banging into me, albeit not deliberately but nevertheless, with a braced leg and absolutely no balance available, once again I found myself knowing I should be in a wheelchair. Pain so severe in so many places, bearing in mind before I even got out of bed I had tried to avoid waking up because of the pain, I should really have known better than to venture out alone.
I sat on a bench feeling so very sorry for myself. My car around the corner would have been visible were there not a massive Marks and Spencer's delivery lorry in the way. It may as well have been on Mars. The same story rewound itself through my mind. You stupid woman, your self limiting behaviour is getting stupid. The story where the Peugeot 107 automatic, which is tiny, only a year or so old, a present from my parents, which I won't drive on motorways, dual carriageways, large roundabouts, my fucking driving phobia. No obligation to read about 'that' at all obviously, the post is long enough but here is the link if you have nothing better to do! the post where I talked (a bit) about driving, just skip the other stuff, its just stuff as ever )
Well the car is great, it does it job, its an automatic and gets me to where I will go. That's a positive, but I am informed by Wheelchair Assessment People that it is entirely unsuitable for a power wheelchair. So I have my lovely little car, then when I get to where I want to go. I can't fucking walk. When OH is with me, braces on, I hang onto him and we slowly make our way. He is my stability. Without all the boring details, alone I just cannot do it. I can't open doors, if a stranger accidentally so much as walks in my path, I lose my ability to stand up and just fall over, without someone there to help me up there I stay. . I can't afford to change the car.So by now I guess you get the picture, me sitting on a bench, with a troubled worried mind, in pain, feeling oh so very sorry for myself.
For a moment, my eye was drawn to a small billboard with an arrow, pointing to a narrow alley a short distance at the end an Art Gallery. I had not been to this gallery for many years. Its free. Deciding to take on board pain management strategies by way of distraction. Slowly, I made my way down the short alley, conveniently narrow enough to be of benefit to a bendie like me. As I could lean on either side of a wall depending on which way I wobbled.
A kind Chinese man, explained to me, in a quiet calming voice, that each picture came with a story. (I can't remember if there were 47 less or more, but there were a lot). I sat on a chair in front of each picture my own angst forgotten whilst I read the individual story linked to each picture. The pictures were harrowing, some gory, including torture, each however had an image(s) within the scenes which I just cannot describe, beautiful signs of hope. Truth, Compassion, Tolerance, included in each.
It took me over an hour to work my way round the gallery room. Stunned, shocked, overwhelmed, emotional, learning of oppression, torture. But out of all of this, the resounding theme was of hope.
I learnt so much. Please go to the link below and look for yourself. I have linked to the story behind the art. As it explains it all so much better than I ever could. After that please click on the home button to view a slide of the art itself.
Apart from the Human Rights Art, I found myself humbled. An hour before I had been lost within my own troubles, focusing only on 'my' pain. Climbing into a pit of self pity. But I am lucky, had I not sat on that bench, had I not been in so much pain. I would have rushed along with the crowd, rushed, hurried, no time to notice the invitation to view the art. I must therefore be lucky that I can't rush.
Human Rights Art
The other day, feeling a little sorry for myself. I had intended to go to our local town to shop for some new pj's. (I spend a lot of time in them after all). I parked in the disabled bay. Sat in the car I wanted to cry. An attack of I am in so much pain, why did I think I could do this alone came over me. Along with the usual, for god's sake woman, get over yourself and just do it. So I slowly got out of the car, walked tortuously around the corner and realised I just could not cope. Town was busy and people kept banging into me, albeit not deliberately but nevertheless, with a braced leg and absolutely no balance available, once again I found myself knowing I should be in a wheelchair. Pain so severe in so many places, bearing in mind before I even got out of bed I had tried to avoid waking up because of the pain, I should really have known better than to venture out alone.
I sat on a bench feeling so very sorry for myself. My car around the corner would have been visible were there not a massive Marks and Spencer's delivery lorry in the way. It may as well have been on Mars. The same story rewound itself through my mind. You stupid woman, your self limiting behaviour is getting stupid. The story where the Peugeot 107 automatic, which is tiny, only a year or so old, a present from my parents, which I won't drive on motorways, dual carriageways, large roundabouts, my fucking driving phobia. No obligation to read about 'that' at all obviously, the post is long enough but here is the link if you have nothing better to do! the post where I talked (a bit) about driving, just skip the other stuff, its just stuff as ever )
Well the car is great, it does it job, its an automatic and gets me to where I will go. That's a positive, but I am informed by Wheelchair Assessment People that it is entirely unsuitable for a power wheelchair. So I have my lovely little car, then when I get to where I want to go. I can't fucking walk. When OH is with me, braces on, I hang onto him and we slowly make our way. He is my stability. Without all the boring details, alone I just cannot do it. I can't open doors, if a stranger accidentally so much as walks in my path, I lose my ability to stand up and just fall over, without someone there to help me up there I stay. . I can't afford to change the car.So by now I guess you get the picture, me sitting on a bench, with a troubled worried mind, in pain, feeling oh so very sorry for myself.
For a moment, my eye was drawn to a small billboard with an arrow, pointing to a narrow alley a short distance at the end an Art Gallery. I had not been to this gallery for many years. Its free. Deciding to take on board pain management strategies by way of distraction. Slowly, I made my way down the short alley, conveniently narrow enough to be of benefit to a bendie like me. As I could lean on either side of a wall depending on which way I wobbled.
A kind Chinese man, explained to me, in a quiet calming voice, that each picture came with a story. (I can't remember if there were 47 less or more, but there were a lot). I sat on a chair in front of each picture my own angst forgotten whilst I read the individual story linked to each picture. The pictures were harrowing, some gory, including torture, each however had an image(s) within the scenes which I just cannot describe, beautiful signs of hope. Truth, Compassion, Tolerance, included in each.
It took me over an hour to work my way round the gallery room. Stunned, shocked, overwhelmed, emotional, learning of oppression, torture. But out of all of this, the resounding theme was of hope.
I learnt so much. Please go to the link below and look for yourself. I have linked to the story behind the art. As it explains it all so much better than I ever could. After that please click on the home button to view a slide of the art itself.
Apart from the Human Rights Art, I found myself humbled. An hour before I had been lost within my own troubles, focusing only on 'my' pain. Climbing into a pit of self pity. But I am lucky, had I not sat on that bench, had I not been in so much pain. I would have rushed along with the crowd, rushed, hurried, no time to notice the invitation to view the art. I must therefore be lucky that I can't rush.
Human Rights Art
Saturday, 14 May 2011
Whats wrong with blogger... short but not very sweet
Ok I don't mind 'sorry we are unable to complete your request' on blogger occassionally. But for the past twenty four hours I have tried to comment on some of my very favourite blogs. Blogger will just not let me. So I am interested in sustainability and wrote as usual a long comment last night and then again tonight and I blogger is unable again to complete my request. Others have also nearly got me and my comments littering the blogosphere. There seems to be no reason for this and I have checked. So for tonight I am off to watch a DVD because I am getting cross now.
Just thought I'd say.
Just thought I'd say.
Tuesday, 10 May 2011
BendyGirl on the radio.... plus my rant....
Just here for a moment I know I haven't been blogging - its boring but I am ill.
Just popped in to say - proud to hear bendy girl on Radio 4 You & Yours this lunchtime just saddened that she didn't get more air time.
If you go to the link below you will be able to listen. However, be very aware that an individual named Mark Littlewood may upset you a great deal with his views on what the disabled should do with their lives.
Oh and I could write a really long ranty post about how he upset me personally - Insurance agaisnt my disability. I am 46 should my mother have insured in pregnancy that I was not born disabled.
I know I shouldn't be shocked but I was astounded of the bigotry that exists in this country still. Some of the callers were profoundly shocking in their views on the disabled. We should not go out, we should not socialise? I beg your pardon. Suprised they were given air time, why are people like this given so much airtime when actually I think they could possibly be breaking the law under the DDA, if these remarks were made at other minorities it would be a criminal offence.
But it seems its OK to suggest that disabled people should not go out, have friends, etc.... shocked and saddened.
Oh and by the way to the callers who think I shouldn't go out etc. much of the time I cannot because I am in too much ^&*(*&^%$ pain, plus other disabling 'afflictions' as Mark Littlewood describes a disability.
Far too angry to write anymore, probably a good job too.
http://benefitscroungingscum.blogspot.com/2011/05/radio-4-you-yours.html
Just popped in to say - proud to hear bendy girl on Radio 4 You & Yours this lunchtime just saddened that she didn't get more air time.
If you go to the link below you will be able to listen. However, be very aware that an individual named Mark Littlewood may upset you a great deal with his views on what the disabled should do with their lives.
Oh and I could write a really long ranty post about how he upset me personally - Insurance agaisnt my disability. I am 46 should my mother have insured in pregnancy that I was not born disabled.
I know I shouldn't be shocked but I was astounded of the bigotry that exists in this country still. Some of the callers were profoundly shocking in their views on the disabled. We should not go out, we should not socialise? I beg your pardon. Suprised they were given air time, why are people like this given so much airtime when actually I think they could possibly be breaking the law under the DDA, if these remarks were made at other minorities it would be a criminal offence.
But it seems its OK to suggest that disabled people should not go out, have friends, etc.... shocked and saddened.
Oh and by the way to the callers who think I shouldn't go out etc. much of the time I cannot because I am in too much ^&*(*&^%$ pain, plus other disabling 'afflictions' as Mark Littlewood describes a disability.
Far too angry to write anymore, probably a good job too.
http://benefitscroungingscum.blogspot.com/2011/05/radio-4-you-yours.html
Tuesday, 5 April 2011
Happy.....
I mucked around with my design and it all went wrong. I need to address this as all my lovely bloggy people are miles away at the bottom of the blog. Please bear with me.
This weekend we stayed here newick park country house hotel Oh my word, we did posh with a capital P. A family do from OH's side. The reason, was that my mother in law, lived nearby as child her father, was a farmer. She would play here as a relative was housekeeper (I think) and would run through the rooms filling this wonderful place with innocent laughter. Her father, had one arm shot off in the war, he had terrible mustard burns and was often in pain. He designed and made the only pheasant plucking machine designed for someone with one arm. He continued to farm despite his terrible injuries. We all met up from various parts of the UK to celebrate life.
Without I think letting the blogosphere know too much personal information without permission. This event was supposed to take place in three years time. When sisters were to be respectively 80, 70 and 60. Due to secondary bowel cancer taking hold of the eldest the party was brought forward. Boy did we party in style. For once in my life I put on a dress, co-ordinated my accessories and looked like a proper grown up. I cannot wear heels but will take a picture of the purple ballet type shoes I wore when I can. I was nervous before I went the whole anticipatory anxiety filling my mind.
However, the experience was simply fantastic. The food sublime. Admittedly I did not drink in the vast amounts that others did. I indulged however toward the end of the evening in my very favourite drink, for a special occasion (apart from champagne obviously) Amaretto. My senses exploded. The velvet caress of the amber liquid mixed with ice better dare I say than sex. Not that I don't enjoy sex but Amaretto put simply provides the pleasure without any effort involved at all. I sipped, because I didn't want to miss a moment. Perhaps I went to places in my mind brought on by a memory from childhood.
As a child we were popped into the family car in the summer holidays, and taken to Europe. One time, as usual I was sleeping on the back seat. (I am so old now that seat belts really weren't required) So sleeping soundly prostrate across the back seat of our Citroen estate, a small child who would lie happily for hours with my feet against my sister who would be shoved into the corner with a scowl whilst I would wriggle a little to get more comfy. In this position travelling by night, we would power through Europe to reach Tuscany. One such night, chaos erupted. A car in front, slammed on its brakes and we hit it. Multiple items flew from the rear of the vast boot of the car and flew around the car. I was knocked out by a missile it seemed which turned out to be a bottle of Amaretto.
No one was hurt enough fortunately for ambulances. I was taken gently by a random, French farmers wife. Into a kitchen where amongst much making of strong coffee and the most delicious olives, ever I was administered by way of treatment for shock. Sips of said Amaretto. An hour or so later, when my mother who speaks fluent french had indulged her penchant for interaction with random foreign strangers and my father had re-packed the boot of the car. Ensuring all items that could fly in a crash were placed carefully amongst beach towels. We continued our journey. As a nine year old I was placed back in the car. My thumping head no problem. I remember gazing at stars as we continued our journey, wondering perhaps if I was in heaven. The reality was I was a drunk, concussed, nine year old. Sipping on Amaretto which I do do, about once a year takes me back to heaven.
Staying in a Country House Hotel, when ones everyday life in direct comparison is the opposite experience. Is a treat. A taster of how the rich live. In our room in the afternoon, I was thankful. Reminded that life generally for me is very much the same each day. I lounged in a soft robe, lit expensive candles as I bathed in complimentary products which are generally in Department stores that I cannot afford to frequent. I played make believe I am rich. In the lounge bar for pre-dinner drinks, the feeling of being part of a loving family was incredible. We laughed and were waited on by supremely understated polite staff. I cannot bear the type of place that turns 'can I get you a drink Madam' into an ingratiating form of sarcasm. There was a family feeling amongst the staff also which meant I genuinely felt that they cared that our experience was as perfect as it could be.
We went into dinner where we ate food that melted into the mouth. Presentation of which, was like a thoughtful lover (I wish) tantalising subtle. A visual foreplay. The graciously subtle lighting played on faces making men look better looking and women beautiful. All was wonderful. I did have a moment when I thought perhaps the paramedics should be called as I need to concentrate when eating to avoid choking. (EDS always lurks somewhere) Whilst savouring my last but one mouthful of rhubarb compote? I felt that familiar feeling of impending choke. Stuck in the back of my throat was a shard of wafer thin toffee? *There is a culinary term for this tasty morsel which has slipped my mind. I began to panic. My eyes scanning the room for my husband who had he not been engrossed in conversation with an elderly aunt would immediately have come to my aid. Still I could not take a breath, knowing that should I do so, choking big time would have ensued. Other diners would have had their sublime dining experience rudely interuppted by the choking ehlers danlos woman.
After what seemed like hours which in fact were seconds in retrospect, a waiter appeared at my side, and gently whispered in my ear. 'Madam. an ice cube' On a small subtle bone china dishlet, was a single ice cube. He gestured by way of a nod that I should pop the ice cube into my mouth. I instantly forgot that ice cubes and my sensitive teeth are not an option the alternative would have been a public demise. I took his advice and popped the ice cube into my mouth, a little bit of me worrying that I would choke also on that. As the ice met the fire in my throat, the incident passed as fast as it started. I thanked the waiter who smiled gently and nodded by way of affirmation that he acknowledged my plight and understood the potential embarrassment.
Moving on we retired, to the lounge bar. Unrushed. Where we all sat together, listening to the elder members reminiscing, privileged to share lives soon to be pasts forgotten in time.
I woke, in the tidiest bedroom ever, brought defac coffee by my OH. I lay in bed, savouring the moment.
On returning home, we opened the door. The animals rushing to us as though we had been gone, for a year. It was 2pm. The lounge was littered with cold takeaway, my 'adult' children had taken full advantage of our absence and chilled out. Both were asleep upstairs. Oblivious to us and our return. I wanted to be angry I really really did but I couldn't be. Wanting the calm to continue in my mind, husband and I turned tail and fled. To the local pub where I drank fresh apple juice and ate simply super watercress soup. We languished a while sharing the silence together whilst reading the weekend papers. The thing I love about having been with the same man for so many many years is that our silence together in moments like these is comfortable.
We returned home, husband of mine recognised my spoons had turned to forks and I needed to rest. I went to my bed. Admittedly not so opulent from whence we had come but as I slipped under the duvet nearly asleep already. I realised it is good to go away but it is so much better coming home. Waking four hours later, kitchen clean, lounge normal cluttered space but no more takeaway evidence. I felt so happy. Yes I had to take optimum pain relief because with Ehlers Danlos pleasure is naturally entwined with pain. I looked around my home and my heart was happy.
I hope today, your heart is happy too.
nb I would like to say, that there were many moments this weekend where I felt humbled. Humbled that my mother in law who is riddled with cancer, was so very gracious. Some women have a complex relationship with their mother-in-laws, but I am blessed to have been welcomed into a family that have only ever shown me compassion, love and fun. I know this blog is annonymous but to let you bloggy people that I have participated this weekend in a family event that embraced the very essence of which if it could be turned into a perfume would adorne women around the world. A treasured scent.
I popped this post into drafts whilst I had a bit of a battle with the old EDS. How very dare I go and have fun. But I did EDS and do you know what I intend to do it again and bugger the consequences. I shall just have to plan the time in bed afterward by way efficient multi disciplinary approach to pain management. So bah hoo to you EDS.
Tuesday, 29 March 2011
Self
Now I have worked out I can just post about this, that and the cat I feel less afraid. I can just come here write stuff, hit publish and off I go again. I knew this already really but I have a tendency to self limiting behaviours.
Anyone who has been hanging around here for a while will know, I have quite a few self-limiting behaviours, I use this termininology because my sister is a hypnotherapist. She taught me the phrase. I like it. Although I don't much like the self-limiting behaviours. Me being me I can't remember the whole conversation but I just thought I had lots of phobias. No I am not neurotic honestly I am not, in fact I am pretty level headed. This comes from having had a very very misspent youth. The only thing is I am not very conventional. I sometimes look at other women my age and think, is that what I am supposed to wear?
Anyway back to self-limiting behaviours, which I just used to call phobias. This is the bit of the conversation I cannot remember. Although it may have gone like this. If you are afraid of spiders for example, that is a phobia. A simple phobia. But if like me you have a driving phobia that is a self-limiting behaviour not a simple phobia. Please feel free to correct me. I will drive. But I am very very specific about the whys and the wherefores.
I will drive locally, but only on back roads. I won't drive on dual carriageways, motorways, large roundabouts. I no longer care what people think about this I spent too many years worrying about that. My sister thinks lots of small things related to being in cars and stuff happening and a couple of very big things that happened in cars have contributed to my self-limiting behaviours.
One day I may feel up to explaining the big thing that happened in the car but right now I don't feel compelled to do so. Perhaps mentioning 'The Big Thing' here, which for me is a big thing in itself may help me to overcome this self limiting behaviour?
Now if this were me reading this I would be thinking - so if your sister is a hypnotherapist surely she could just hypnotize you out of your 'phobias. I write phobias because frankly continually typing self limiting behaviours is tiresome. The thing is despite the fact that she is a successful hynotherapist. (I would really appreciate it if you have read this post and just want to comment I think all that hypnotherapy stuff is a load of shite, because actually I will take it personally, I don't mind anyone having a pop at me but to my kith and kin, be very very aware I go crazy. I am a Leo and Leo's are profoundly protective of their loved one's) Anyhow back on topic. Because she is my sister when she has tried to hynotize me it just does not work. Because I can't stop laughing. She is my older sister and as such has always bossed me about. Somewhere in the back of my mind the minute she tries I just rebel and laugh and laugh and laugh.
So she gets really annoyed and I still can't stop laughing. I cannot afford to see another hypnotherapist and so am left with my 'self limiting behaviour'.
On the whole my driving phobia has little impact on my life. I potter about in places that are familiar and if we need to go further afield OH drives. Daughter and son drive also now so when I can stop bossing them about and telling what to do in the car I am sure they will drive me further afield. Son has devised a very good coping tactic for when we approach large roundabouts, he insists I wear a hat and says 'mum, time to pull your hat over your eyes'. So if you ever see a very short, dark haired woman in a car sat beside an exasperated good looking 18year old male with her hat pulled over her eyes it will be me. You can say to your OH 'hey I have just seen Achelois from The Tensile Times!'
nb - It is actual fact that Ehlers Danlos Syndrome shares the same gene as the phobia gene. So there you go, aren't I lucky. I think I got that fact right but google it for proper citation.
So thats me and my self limiting behaviour. There are more but I rather feel that is enough to be going on with.
Anyone who has been hanging around here for a while will know, I have quite a few self-limiting behaviours, I use this termininology because my sister is a hypnotherapist. She taught me the phrase. I like it. Although I don't much like the self-limiting behaviours. Me being me I can't remember the whole conversation but I just thought I had lots of phobias. No I am not neurotic honestly I am not, in fact I am pretty level headed. This comes from having had a very very misspent youth. The only thing is I am not very conventional. I sometimes look at other women my age and think, is that what I am supposed to wear?
Anyway back to self-limiting behaviours, which I just used to call phobias. This is the bit of the conversation I cannot remember. Although it may have gone like this. If you are afraid of spiders for example, that is a phobia. A simple phobia. But if like me you have a driving phobia that is a self-limiting behaviour not a simple phobia. Please feel free to correct me. I will drive. But I am very very specific about the whys and the wherefores.
I will drive locally, but only on back roads. I won't drive on dual carriageways, motorways, large roundabouts. I no longer care what people think about this I spent too many years worrying about that. My sister thinks lots of small things related to being in cars and stuff happening and a couple of very big things that happened in cars have contributed to my self-limiting behaviours.
One day I may feel up to explaining the big thing that happened in the car but right now I don't feel compelled to do so. Perhaps mentioning 'The Big Thing' here, which for me is a big thing in itself may help me to overcome this self limiting behaviour?
Now if this were me reading this I would be thinking - so if your sister is a hypnotherapist surely she could just hypnotize you out of your 'phobias. I write phobias because frankly continually typing self limiting behaviours is tiresome. The thing is despite the fact that she is a successful hynotherapist. (I would really appreciate it if you have read this post and just want to comment I think all that hypnotherapy stuff is a load of shite, because actually I will take it personally, I don't mind anyone having a pop at me but to my kith and kin, be very very aware I go crazy. I am a Leo and Leo's are profoundly protective of their loved one's) Anyhow back on topic. Because she is my sister when she has tried to hynotize me it just does not work. Because I can't stop laughing. She is my older sister and as such has always bossed me about. Somewhere in the back of my mind the minute she tries I just rebel and laugh and laugh and laugh.
So she gets really annoyed and I still can't stop laughing. I cannot afford to see another hypnotherapist and so am left with my 'self limiting behaviour'.
On the whole my driving phobia has little impact on my life. I potter about in places that are familiar and if we need to go further afield OH drives. Daughter and son drive also now so when I can stop bossing them about and telling what to do in the car I am sure they will drive me further afield. Son has devised a very good coping tactic for when we approach large roundabouts, he insists I wear a hat and says 'mum, time to pull your hat over your eyes'. So if you ever see a very short, dark haired woman in a car sat beside an exasperated good looking 18year old male with her hat pulled over her eyes it will be me. You can say to your OH 'hey I have just seen Achelois from The Tensile Times!'
nb - It is actual fact that Ehlers Danlos Syndrome shares the same gene as the phobia gene. So there you go, aren't I lucky. I think I got that fact right but google it for proper citation.
So thats me and my self limiting behaviour. There are more but I rather feel that is enough to be going on with.
Saturday, 19 March 2011
I wonder....
I have been up to not a lot. My latest favourite place is Pets at Home - how sad is that. The access is good. Everything needed for the animals is there. OH pays for it all if we go there which is a bonus. Our new rescued staffie has his boots under the table now and all his lovely idiosyncrasies are popping up daily. Umm chewing boots and shoes being one of them. Its great that he is finding his personality I think!!
I am 46 and have the biggest spot in the world on my chin, what the heck is all that about. New laptop*a present, means I have the luxury of lying in bed to blog which is great, unfortunately OH's snoring is not. Why do men snore so bloody loudly.
I am suffering from chronic sulking as all those attending the Australian Blogging Conference are having a fantastic time. Don't get me wrong I am pleased they are having a great time, just wish I was also.
Having upgraded Internet thingy whatsit am getting really very pissed off that I simply cannot maintain connectivity to even post this. So will contact them on Monday to patiently ask why. I say patiently because I don't feel very patient about it. At all. So I will have to pretend to be patient because I don't want to take out my frustration on someone who probably earns not a lot and I doubt its their fault. We can't get clever packages around these parts due to our location. I suppose if we lived in a big city I would get better. Sometimes I wonder whether we should move in fact. I have always lived rurally but wonder latterly if in fact my life would be easier if we didn't. Imagine I could get a mobility scooter, open the door and off I could go. I don't like crowds and such so would have to get used to that but I do wonder about it.
I wonder about a lot of things these days.
(Please excuse my poor grammar, lack of interesting content, sparse vocabulary, lack of wit, the lot, no excuse really just please put this down as a post of little interest).
Wednesday, 9 March 2011
You know you want to.....
or alternatively help her via link below to save her blushes (A link to Veronica's mum, grandmother to Veronica's two beautiful children)
I have been reading Veronica's blog for quite a little while now. She is a young woman who struggles daily to battle severe Ehlers Danlos. She is a wonderful mother to two beautiful children both of whom she is in the middle of obtaining a diagnosis on the Autistic Spectrum. I know it will have been really really hard for her to ask for help. But she is the type of young woman who once she has made a comitment would never dream of letting anyone down. Because she has comitted herself to helping organise the Australian Blogger's Conference, she will be determined not to let all those other bloggers down. Fate, in the form of a vicious unexpected frost, destroyed her crops and nasty nasty people who stole her ducklings mean she is left with head in hands, struggling. Not knowing which way to turn.
I felt bad because I could only help her out a tiny embarrasingly small amount that I almost didn't because it was so small. But I got to thinking that if as many bloggers as possible could help out a tiny bit then all those tiny bits might add up to a bigger bit.
So if you have a tiny bit to spare, please help her out, so that all the other bloggers (some of whom will be like me and find the blogosphere a place where I have found friends when I really needed them) to meet up. Then perhaps we can dispel the myth that the only thing the Internet is good for is shopping and porn.
I know I don't have many followers but you may have more so please if you can, pass this one on, via Twitter, blogging or any other means you see fit.
Even if you cannot afford a tinsy bit passing on may mean someone else may have a little to help out a young woman who is at the end of her tether.
Thank you.
Saturday, 5 March 2011
Slithering....
The latter part of this week I have had posts in my head.
Distracted by Twitter.
I rarely properly take to my bed. Don't get me wrong I spend a lot of time in bed. Interrupted sleep. Pain, dislocations, subluxations are normal. The cats at all times understanding. The dog so new to our house, rescued to our home, understands already. We adore each other.
I nearly called the doctor. How does one explain, I feel so ill. Without any sign of flu or virus. Can't eat too nauseous. Arms, legs, brain turned to jelly. Made it to surgery to get repeat prescriptions, without the required 48 hours notice. Receptionist who has known me for many years said S..... you really look unwell. Please see a doctor. A silent tear slid down my cheek... I don't know why this happens I just know that it means something is up. Silent tears mean I feel too ill to explain I need to go home to get back in my bed. Whenever something is wrong I know because this tear thing happens. It means I am sick. How can one explain to a kindly receptionist, I just feel too ill, I need to go. I smile a little, kindness means the tear slid in a solitary drop from my chin to form a damp mark on my scarf. I promise her that if I don't feel better I will see the doctor next next week, prescriptions in hand, I slip away. Feeling as though I am disappearing from myself.
Arrive at pharmacy, where I am also known well. Ushered to seat, scripts rushed through. No blood in my cheeks aware that the pallor, causes concern. Normally I attempt small talk, not that day. Which I think was yesterday. No one noticed that my soft clothes under my coat, hat despite the sunshine were not day clothes. If they did they were too polite to say, get dressed. Nearly a sad bag lady.
Get home, slither to bed, wishing someone would change the sheets, the duvet cover... my grandmother would have done this. Understanding that I need the cool touch of a freshly laundered bed set. I feel close to her, perhaps this is dying. Laptop at end of bed. Do not search, I think I am dying. Not in a dramatic way more a sliding away. No matter, I'll sleep again. Family drift in and out.
My heart flutters more, when i wake it does this thing that feels like its moving. thumply, thumply, shudder, My blood pressure low.
I berate myself for not addressing medical stuff that needs to be looked at. For putting my family through this shit. A person this week who has become a bed, moulded into a thing so floppy its not me. But it is me.
Forcing myself to drink slimfast drinks, not for dieting reasons. Chewing, is not an option against the forces of nausea. I swallow as husbands looks on, concerned. Took me over two hours today to muster up enough energy to get up. Husband seemed relieved. She is up. I have that thing again where my arms won't work. Hang limply by my sides. Bend my head sitting at kitchen table, waiting for tea to cool so much its beyond tepid, knowing that hands won't hold the contents. Its good that I am short. Tipping mug into mouth I wonder how he still loves me. Wives like me don't give much back. I know I am giving less and less of myself. Myself lost somewhere in pain and this affliction.
I won, I did not google mitral valve, or I think I am fading into somewhere else, my eyes are too tired to read anyhow, apart from Twitter and blogs I am familiar with. I am not a hypochondriac. This is ehlers danlos. This is autonomic dysfunction. This is me.
I will come out the other side with promises to myself to get referrals to the City. Or will I just do what I normally do and accept that this is how it is. In reality, I take the right medications, drink liquids, more salt, climb back to reality. It won't be normal because normal is pretty abnormal. But the not normal is better than sliding into oblivion, losing days of my life.
I wrote this post because I read Michelle's last post on processing over at bob's place (see last post to link to her blog). I was brave I told the truth. My mind is mush so this post is that. The mush in my mind caused by an autonomic crises? Perhaps when this happens I am supposed to be in hospital, on IV fluids, then leave all fixed. I read in blogs from the US that this is quite normal for EDS bendies like me. But here in the UK it seems there are no guidelines. It went well in the end. Because I lived. I just lived in my bed. Sweating cold sweat, that to me smelt funny. OH said it didn't but I think he was being kind. Body temperature too low. I rarely register a temperature as just above normal is high for me. What caused this crash. I hated myself for giving in. Texting husband who was downstairs that I needed the loo but arms and legs weren't working. Its nearly over. I got dressed, in soft clothes. Nothing over the head, arms still won't raise. Soft clothes help the transition from bed to life. Soft because the pressure of clothes on skin, too soon for that.
I couldn't play the pretend game this week. You know the one. I'm fine, fixed smile, pinpoint pupils, very well thank you.
So I made it downstairs. Yippee. Lucky me. But now I have told the truth, I'll log off from this laptop and go to bed. Listen to OH snore gently. Then switch on new laptop, waiting at the bottom of the bed. My new friend. My comfort. My link to the outside world. Real time friends, are sliding away, their lives are busy. I understand EDS is boring. I will want to see how Veronica is doing @sleepless nights, (see blogroll) to find out how she is, someone stole her ducklings - bastards. Twitter people who do not know me welcome me. A world where EDS is understood - the blogosphere. Without this contact with the outside world EDS would swallow me up and I could disappear. I'll read that others do complete proper things, art, crotchet, knitting, campaigning for dla, mother's dreams...... It really really helps. Because this summer, I will achieve something. The inspiration is there, a world of other people's lives. Enriching mine. I lost my intellect somewhere in Ehlers Danlos land. But little by little, this week that felt as though it were a lifetime I learn again that I have inner strength to fight some more.
Looking to small things and not dwelling on the week where I slithered into Ehlers Danlos land. I am thankful for the love of my husband and children (to me they will always be that) my animals who surround me. My life. I lost myself last week, not to self pity, I learnt a long time ago that to dig the self pity hole is futile. I just got lost in Ehlers Danlos land.
Tomorrow is another day and I will persevere. I told the truth. Its a start.
Distracted by Twitter.
I rarely properly take to my bed. Don't get me wrong I spend a lot of time in bed. Interrupted sleep. Pain, dislocations, subluxations are normal. The cats at all times understanding. The dog so new to our house, rescued to our home, understands already. We adore each other.
I nearly called the doctor. How does one explain, I feel so ill. Without any sign of flu or virus. Can't eat too nauseous. Arms, legs, brain turned to jelly. Made it to surgery to get repeat prescriptions, without the required 48 hours notice. Receptionist who has known me for many years said S..... you really look unwell. Please see a doctor. A silent tear slid down my cheek... I don't know why this happens I just know that it means something is up. Silent tears mean I feel too ill to explain I need to go home to get back in my bed. Whenever something is wrong I know because this tear thing happens. It means I am sick. How can one explain to a kindly receptionist, I just feel too ill, I need to go. I smile a little, kindness means the tear slid in a solitary drop from my chin to form a damp mark on my scarf. I promise her that if I don't feel better I will see the doctor next next week, prescriptions in hand, I slip away. Feeling as though I am disappearing from myself.
Arrive at pharmacy, where I am also known well. Ushered to seat, scripts rushed through. No blood in my cheeks aware that the pallor, causes concern. Normally I attempt small talk, not that day. Which I think was yesterday. No one noticed that my soft clothes under my coat, hat despite the sunshine were not day clothes. If they did they were too polite to say, get dressed. Nearly a sad bag lady.
Get home, slither to bed, wishing someone would change the sheets, the duvet cover... my grandmother would have done this. Understanding that I need the cool touch of a freshly laundered bed set. I feel close to her, perhaps this is dying. Laptop at end of bed. Do not search, I think I am dying. Not in a dramatic way more a sliding away. No matter, I'll sleep again. Family drift in and out.
My heart flutters more, when i wake it does this thing that feels like its moving. thumply, thumply, shudder, My blood pressure low.
I berate myself for not addressing medical stuff that needs to be looked at. For putting my family through this shit. A person this week who has become a bed, moulded into a thing so floppy its not me. But it is me.
Forcing myself to drink slimfast drinks, not for dieting reasons. Chewing, is not an option against the forces of nausea. I swallow as husbands looks on, concerned. Took me over two hours today to muster up enough energy to get up. Husband seemed relieved. She is up. I have that thing again where my arms won't work. Hang limply by my sides. Bend my head sitting at kitchen table, waiting for tea to cool so much its beyond tepid, knowing that hands won't hold the contents. Its good that I am short. Tipping mug into mouth I wonder how he still loves me. Wives like me don't give much back. I know I am giving less and less of myself. Myself lost somewhere in pain and this affliction.
I won, I did not google mitral valve, or I think I am fading into somewhere else, my eyes are too tired to read anyhow, apart from Twitter and blogs I am familiar with. I am not a hypochondriac. This is ehlers danlos. This is autonomic dysfunction. This is me.
I will come out the other side with promises to myself to get referrals to the City. Or will I just do what I normally do and accept that this is how it is. In reality, I take the right medications, drink liquids, more salt, climb back to reality. It won't be normal because normal is pretty abnormal. But the not normal is better than sliding into oblivion, losing days of my life.
I wrote this post because I read Michelle's last post on processing over at bob's place (see last post to link to her blog). I was brave I told the truth. My mind is mush so this post is that. The mush in my mind caused by an autonomic crises? Perhaps when this happens I am supposed to be in hospital, on IV fluids, then leave all fixed. I read in blogs from the US that this is quite normal for EDS bendies like me. But here in the UK it seems there are no guidelines. It went well in the end. Because I lived. I just lived in my bed. Sweating cold sweat, that to me smelt funny. OH said it didn't but I think he was being kind. Body temperature too low. I rarely register a temperature as just above normal is high for me. What caused this crash. I hated myself for giving in. Texting husband who was downstairs that I needed the loo but arms and legs weren't working. Its nearly over. I got dressed, in soft clothes. Nothing over the head, arms still won't raise. Soft clothes help the transition from bed to life. Soft because the pressure of clothes on skin, too soon for that.
I couldn't play the pretend game this week. You know the one. I'm fine, fixed smile, pinpoint pupils, very well thank you.
So I made it downstairs. Yippee. Lucky me. But now I have told the truth, I'll log off from this laptop and go to bed. Listen to OH snore gently. Then switch on new laptop, waiting at the bottom of the bed. My new friend. My comfort. My link to the outside world. Real time friends, are sliding away, their lives are busy. I understand EDS is boring. I will want to see how Veronica is doing @sleepless nights, (see blogroll) to find out how she is, someone stole her ducklings - bastards. Twitter people who do not know me welcome me. A world where EDS is understood - the blogosphere. Without this contact with the outside world EDS would swallow me up and I could disappear. I'll read that others do complete proper things, art, crotchet, knitting, campaigning for dla, mother's dreams...... It really really helps. Because this summer, I will achieve something. The inspiration is there, a world of other people's lives. Enriching mine. I lost my intellect somewhere in Ehlers Danlos land. But little by little, this week that felt as though it were a lifetime I learn again that I have inner strength to fight some more.
Looking to small things and not dwelling on the week where I slithered into Ehlers Danlos land. I am thankful for the love of my husband and children (to me they will always be that) my animals who surround me. My life. I lost myself last week, not to self pity, I learnt a long time ago that to dig the self pity hole is futile. I just got lost in Ehlers Danlos land.
Tomorrow is another day and I will persevere. I told the truth. Its a start.
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