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!
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