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/

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 

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.

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.

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.

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.

 

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

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.

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

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.

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.

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).

You know you want to.....

If I know Veronica at all I know she will have found this very hard to ask - please click and help her out

or alternatively help her via link below to save her blushes (A link to Veronica's mum, grandmother to Veronica's two beautiful children)

im-at-the-end-of-my-tether-mum

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.

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.

Michelle is not crazy

Take camera away from crazy woman

Please click on the link to view Michelle's video of what it is like to live with an invisible disability.  Michelle is one of my very favourite blogger's. Why -  Her sense of humour. Vitality. Wit. Intelligence, there is more but my brain is mushy.  Living with Bob - her name for her invisible disability which each day brings forth more challenging symptoms is the place I go when I feel sorry for myself.  She reminds me that without humour everything is pants.  Michelle gave me permission to link.  Its me being lazy as well because it means she gets to wear herself out trying to describe what it is like to have an invisible disability.  So much of what she says is just how I feel.

(I promised to send Michelle an email and I have clean forgotten what it was I wanted to say - sorry Michelle)

Why do all the best people live so far away?

 I can stretch but not this far

image from yahoo search

Good Things Shared......

Well I am now a Tweeter(er)?

So far I love it - after all my prevaricating. I am eating my words.

I am a tad wary as I have a tendency to get the wrong end of the stick on stuff like this and hope my blogging buddies would tell me if that is the case.  If my Tweets (which for me is like learning a new language) are wildly inappropriate, please don't be shy.  Let me know to save my blushes.

I have a little padlock beside my Tweets and don't see them on anyone elses and wonder if I should remove that aspect as I think it means people have to ask to follow me? 

I felt quite brave this evening and tweeted bendygirl who doesn't follow me humph  (BG - if you have time to read my dribble here,I understand you are a very very busy Bendy Girl who is busy campaigning and  boy I am in awe of how you network)

I also tweeted a fellow bendy, a complete stranger, who had partially dislocated her shoulder and needed sympathy, I tweeted sympathy.  This is the good side of the virtual world.  Being able to send sympathy ..... 

I know its the middle of the night here and not there but I loved it that a fellow EDSer (you know who you are) tweeted, I replied and she emailed.  It was 'cool'.  I have never in my 46 years ever said something was cool but it truly was.  The whole interaction made me smile.  Before that virtual moment happened I was feeling just a little sorry for myself as unable to sleep due to mind blowing spasms.  Still spasming but smiling at the same time.  Cool.

Now all I need is a swanky phone and I could tweet away to my hearts content.  That won't happen as we cannot afford the swanky phone thing and perhaps it a good thing as I can see why Tweeting can be compulsive.  So for now I am a happy bunny, being able to Tweet when have access to Laptop - especially to my wonderfully supportive Tasmanian bloggy people adopted family.

I must try to work out a way to get some sleep as step grandson is coming to stay tomorrow.  I have no spoons. Will have ask for help and if you know me at all you will know that me and asking for help is complicated.  The stress of involving extended family in my life is complicated. 

Daughter with EDS screamed in pain this evening, she panicked.  I felt for her so.  I hope I did the right thing by her.  Encouraged her to breath calmly, drink a glass of water, take pain relief (that is another story as she is fighting the EDS so, right now).  I did more to try and help but one bendy helping another bendy is tough going.  She says I am the only person she trusts to massage her and not cause her more pain.  We talk of fear surrounding pain.

I cannot tell her that massaging her causes me such pain.  I hide it and go to the kitchen and take strong pain relief.  Telling her gently it will pass.  It doesn't though does it in reality.   EDS is a cruel condition.

So for distraction and company I Tweeted as well as reading blogs - so thank you virtual world for helping me when I have done everything to help myself and still can't stand the pain.

Being able to see good when I could easily just cry frankly, has got to be a positive action? 

So today I would like to say a big thank you to Veronica from sleeplessnights for my sleepy smiles and the sharing of 'Good Things'.

A small personal goal would be to try and work out how to put a link on this blog to Tweety world.

A bigger personal goal is to find some spoons for step grandson.  DLA unfortunately does not extend to paying for a play scheme when one is too cripped up to be the perfect grandmother.  So instead I must ask for help and in the meantime tomorrow I think there will be a lot of stories read and hopefully this pain will pass.

I like to finish on a positive note - if anyone reading this has a physical pain, you have my sympathy and sincere wish that it abates asap.  If you have emotional upset, I hope that whatever the cause, you find the answer to ease a troubled mind.  If you have both - please accept a gentle virtual hug.

I send a special thought to my favourite australian blogger and hope that bob has bobbed right off today.

Its long.....

...... but hey ho, Lordy lordy lordy, all of a sudden I decide I want to post.  The ability to comment has been reinstated but please don't feel obliged to do so!

I have a post inside my head which needs more consideration with regards to Internet privacy and its implications.  The title of which Veronica has kindly given me permission to pinch. I will give her full and appropriate linkage? when it comes out of my head onto the page.

Bizarrely her post coincided with me having the most interesting conversation with my pharmacist regarding information a large pharmaceutical company holds on their database about me and data protection.  So somehow I can't work out whether this means there will be two posts back to back - Internet privacy and data protection. Or as is usual for me a jumbled up conglomeration of the two.  I crave order in my life as usual so perhaps I will be disciplined enough to separate the topics.

I bet you can't wait to find out what has prompted me to post apart obviously Veronica - thank you Veronica.

I know I said I wouldn't ever but I have.  I have succumbed.  I can now tweet.  Oh how blithely I say it.  I can now tweet.  Except that I have done the signing up thing, thought of a stupid name (actually I did that ages ago hence bramblycat).  Now my poor bloggy friends, well Kim from frogpondsrock and Veronica http://somedaywewillsleep.com/ @ sleeplessnights are being bombarded with my tweets.

As ever I am impatient, I don't read the handbook? I truly don't get retweeting and the rest ...... Its made more complicated because I am relying on daughter's laptop at present to borrow.  Which means I have limited www access.  My guess is to facilitate Twitter's full functionality I have to be able to tweet efficiently, regularly, a hint of wit perhaps.  Had lunch. etc.  Not as  banal hopefully as that but I hope you get the gist.

Also I am struggling to find words short enough to get across that which I want to say without seeing the little -  indicating I have failed on the restricted word count!  Either that or Thesaurus must become my friend and I will have to become efficient at using very complicated long words to describe my passing thought or activity rather than those of the more concise variety.  I understand why those who may be language snobs sneer at Twitter fearing the dunning down of language.  For myself the jury is out, I think over time and in history it will be noted as a medium of communication that is in fact an art.  Historically, in literature, the arts, music (look at punk) I am not a particular fan but I understand the influences it has had and its importance in the evolution of music.  That which is often ridiculed is feared, particularly by those in authority.  Look at the current debate with regard to the Police and social networking in demonstrations.   Please note that I do not condone violence in public demonstration but I can see how easy it is to manipulate a large gathering to change location via social networking.  So instead of becoming the dinosaur my kids are beginning to accuse me of I decided it is time to dip my toe in the waters - and take a sample of that which is known as tweeting?

Hard when I don't have required paraphernalia to make for efficient Twittering. Tweeting? Tweetering.  I have no fancy phone.  I even Twitted tweeted that I need one.  I have broken my self made old fashioned promise to myself. Moi a fancy phone.  Now I have a burning urge for one.  Whilst my mini passion for Twittering overtakes me.

I swear its a conspiracy, thought up by a clever marketing mogul.  Twitter means one needs constant access to expensive phone and new laptop. To be honest I need a new laptop anyhow.  How has it happened that I am the one that pays the bill for broadband, phone line etc. and am the only one in the house without required kit to facilitate all things every person needs to access for fear of being sad as my kids would say.

I know the reason actually, being a mother, if one is not rich means one constantly denies oneself 'stuff'.  To enable ones offspring to have 'stuff'.  Well actually mine pay for their own 'stuff' because I have brought them up well and they have part time jobs.  When I say 'stuff' what I actually mean is the little I do have is spent on good food.   By good food I do not mean, caviar; I mean, fresh, when possible organic decent food.  If you  are of a mind to give me a lecture on how I could feed them well on pulses which are not expensive (which for the record I do already) or grow at home fresh stuff etc.  I will let you know now that despite living in the countryside, my housing association house has a very small back yard.  Not big enough for chickens etc.

I have tried to persuade OH that the front garden is big enough for a chicken run but he says it is breaking the rules of our tenancy.  I personally cannot find anything in our tenancy agreement about chickens.  I can about dogs and cats.  The rules on that are bizarre.  One can have one dog, and two cats if in a house.  But if one has two dogs only one cat is allowed. (No mention of goldfish etc) So actually we are breaking the rules already for we have three cats and one dog.

PTS disorder as a result.  However, mother of son, who died is twenty years old. She was suffering indescribable grief missing her son so we thought we would get her a companion to take her mind off her grief.  So entered new kitten.  Elderly cat stopped pining.  Then out of the blue, elderly cat took to her bed and appeared to all that she was preparing herself for cat heaven.  OH panicked that kitten would be distraught if she were to die so arrived home with another kitten.  A week later elderly cat, got a new lease of life apparently stimulated by two crazy kittens.  So we have three cats - thus breaking the rules.

 If I am called to account on this I have prepared myself well and will launch into the story with appropriate dramatic effect, hankie in hand (although in truth it will be a tissue as I think hankie's are horrible) explaining that elderly cat really does not have long to live.  Which is true as bloggy people she now lives inside.  I simply cannot believe she has resorted to a litter tray, things which I simply abhor.  By way of distraction I will also explain that we are tormented by a feral cat who is bigger than any cat I have ever seen.  And as it explains in the manual the Housing Association are responsible for my safety!  Oh yes.  I will demand that something is done about said feral cat, of whom I am a little scared and so would you be too if you had met him.  He is a beast of a cat, hissing, he can climb brick walls with his claws and more.  I will demand that justice is done and that the beast is caught for we can't catch him, and that he be sent to a farm (there are many nearby) where he can live in a barn.  Just not in my back yard.  If you had ever smelt the spray of a feral cat apart from all other of his habits you would understand.

Can you tell whilst I have not been blogging, I have been watching a great deal of drama via DVD.  Given by my dear daughter for Xmas, a boxed set containing Wuthering Heights, Jane Eyre etc. All the others and I wish there were more Elizabeth I, The Tudors, etc.  So perhaps this is why if called to account about the rule breaking on the animal front, I may well feign a faint and call for the smelling salts.

I am ploughing my way through, the boxed set of books by Anita Shreve.  Reading is difficult because of my stupid hands. (Am trying not to mention EDS too often so won't bore with why on that front).  However I have finally just completed amazon/Resistance-Anita-Shreve

Not normally a subject I would dwell on, hereby admitting that whilst my father ensured I had a full and proper working knowledge of the war and the atrocities that befell the innocent.  I admit I have not often chosen to read of them.  Fully admitting here that I am much affected by such things, my private angst changes nothing after all, a futile indulgence of the mind .  For this I have always felt guilty.  A personal guilt.

However Anita Shreve artfully managed to write in such a way that as soon as the content turned ugly, I did not shut the book never to look at it again.  I was driven to read on.  Compelled now to educate myself further, read more on this, so if anyone has any recommendations that would great. Please bear in mind I am not intending to write a thesis or intend to submerge myself fanatically in the topic.  I have read The Diary of Anne Frank.  I imagine that Nechtan from http://foreveranxious.blogspot.com/   may be able to suggest something suitable.   So that I CAN tell my grandchildren in an appropriate way and so that those that lost their lives for future generations are never forgotten.

I am trying hard not to dwell on the reasons why I have felt unable to blog.  I simply cannot worry so much.  I will not in each and every post forthwith explain how long it has taken me because of my disability and how many spoons I have used to complete a post.(The information contained within the link is a couple of pages it is well worth a read so if you can't be bothered right now, perhaps bookmark it for another day.  (Most who read here if they still do are most probably very intimately acquainted with The Spoon Theory!)  link to explain the spoon theory - with thanks to butyoudontlooksick.com

I am determined not to feel guilty for not campaigning constantly here on my blog with regard to DLA.  See last post. I will continue to support all related causes but it has been making me too anxious worrying that this benefit to which I am entitled is probably going to be taken from me.  Thus leaving me relying wholly on my OH for money, of which we have little anyhow.  I may be worrying about something which may not happen although I feel in my bones it will.  However I will not be broken by this.  This means though that apart from talking about it when I feel like it.  I am afraid my blog is not to become a forum for all things benefit related.  I completely admire those that are able to campaign but I am weak of mind and find the more I talk of it the more anxious I become.  So in order to save my sanity and to be able to blog again, this is my way forward.  Teaching myself I hope, not to feel so fucking guilty about just being me.

Well I have talked of this and that.  I have enjoyed on the whole writing this post.  Apart from that last paragraph.  I am determined not to worry that as a disabled individual I shouldn't even be here using my valuable spoons to blog at all.

I read in a blog that a young girl with severe ME has recently been awarded more money in her personal care budget? excuse my lack of politically correct terminology, for socialisation and that the Internet does not count in this regard.  She was asking for suggestions of things that she could do which would stimulate her yet not exhaust her.  There were some interesting suggestions.  She already receives in her PCB 45mins a day for help bathing etc.
A good news story of someone getting help when so many are having their aid reduced etc. 

So I finish this post on a positive note - after the very sad death of our beautiful staffie a few months ago.  We have rescued another young staffie.  Sadly his owner a schizophrenic had been unable to care for him properly.  I am astonished that the RSPCA felt it appropriate that this young dog should be left for 48 hours without food or water before they would intervene despite the fact that they knew that his owner had been sectioned.  They agreed that a relative of his owner could let us adopt him thankfully, so that he did not have to go through that further trauma.  Having already been left for long periods alone in squalid conditions.  I wish his previous owner nothing but goodwill and hope that with appropriate help he comes out of his present psychosis and in the months to come his life improves.

Our new dog after initially being very 'still' is finding his personality again, although at the minute he is in a grump having been castrated last week.  Poor boy. Enough said.   So this new dog in my life has lifted my spirits and his.  His eyes tell stories we will never know the full extent but here he has found a loving home.  He doesn't understand the Internet or twitter but as I try to get my head around twitter he looks at me quizzically as if to say - don't give up.    

pic courtesy of bing thing

    

One Month Before Heartbreak......

One Month Before Heartbreak

(written as part of the broken of britain blogswarm  )

Sometime before Christmas I found myself unable to blog.

I hadn't even been blogging for long.

Surely its easy to write a little sometimes, with a break in between sentences what may even seem a small post.  To manage my pain.  Its called pacing.

I am fortunate the only benefit I claim is DLA (Disability Living Allowance).  My husband works and hard.  We have invisible disabilities in our family of four.  A husband & son with Epilepsy, dyslexia, dyspraxia. Myself and my daughter ehlers danlos, with the addition of osteoporosis, osteoarthritis, arthritis.......    We live simply on a low income.

I found myself increasingly affected by the media and Government onslaught, regarding the status of my verity & probity.  I am honest and so are my family.  It is not my fault or my families fault that our genetic pool collectively includes the conditions it does.  Does it make me a scrounger? 

So somewhere along the line and this is where the writing of the blog became intertwined with a deep seated unhappiness about the treatment of those with disability in the UK.  I became unable to write about how living with Ehlers Danlos was affecting me.  Until this feeling became overwhelming I had felt liberated that I was able to write here.  Perhaps in some small way helping another with this devastating, rare condition to cope a little better?  Then little by little my confidence became shattered.  Perhaps I am overwhelmed by guilt.  I know not what the actual cause of this affliction was, except that it coincided with the assault on the disabled of Britain.  Why guilt. I asked myself.  It has taken me a long time to even be able to say that.  Guilty for my disability?

Ehlers Danlos has a profound, lifelong affect on those who have it.  For years I worked and struggled to do so.  Eventually it became obvious to all that I am simply not fit to do so.  This does not make me a scrounger.  This is the truth.  So we live together on a low income.  My only source of personal money is via DLA.  My lifeline.  I could talk forever about the why's and wherefore's.  Dislocation, subluxation, the fact that much of the money is spent on keeping warm.  Is that my crime?  Autonomic dysfunction, raynauds, pain..... means that the cold has a profound effect on my wellbeing both emotional and physical.  If I get cold my body temperature drops too fast and I become hypothermic.  Is that my fault?

An able bodied person could possibly go out for an invigorating run to warm themselves.  I smile wryly to myself, the memory of running an obscure one, you see even as a child I couldn't run.  What one doesn't know one does not miss.  There is more to my condition than getting cold. This is just a small example of the additional expense of my disability.  A tiny weeny glimpse into my life.  To overheat is pretty devastating also.  So the heat and the cold are equal enemies to me.  Fans are expensive to run also.  So is much of the paraphanalia required living in constant severe pain.  I won't bore on that front.   Don't get me wrong, I like the feel of the wind in my hair and the warmth of the sun on my face just as much as the next person.  Its the wild variations in blood pressure.  The inability to stand on my own two feet literally that interrupt these natural pleasures.  Its not just that, knees, ankles, bones in feet, hips, shoulders, wrists, thumbs, fingers, elbows sublux and dislocate with even minor pressure.  This is not just a standing thing, turning over in sleep is enough to wake in searing pain.  Muscles which have altered collagen stretch then stretch more meaning that with each daily multiple dislocations/subluxes injuries are ongoing and further weaken that which is already weakened.  Do you know anyone who dislocates their finger touching the touch sensitive pad on a microwave.

This is just a taste of EDS.  A starter.  It is a complex, painful condition.  It is not something I have made up, although many including myself spend many years being labelled a hypochondriac, until finally a diagnosis is made.  If one has the condition severely, one is destined for a life of pain.

Do the government see my pain?  When I am forced to take a medical in 2013 when my 'indefinite' award comes under scrutiny.  Will I have to endure the humiliation of a medical which will be undertaken by a doctor who in all honesty will have no clue as how to appropriately examine the severely hypermobile patient.  Why should they know.  When many consultant rheumatologist's shake their heads and wonder why the patient before them is so debilitated.  This rare condition also has few specialists who have an innate understanding of the complexities of how it affects each individual with it.  This medical examination which I am happy to comply with, I don't have a problem trying to explain to a doctor? who cannot see my altered collagen about the effect it has on my life, my body.  I have nothing to hide, nothing.  But how much will it cost to essentially go through it all over again?  To re-apply for something which I have already been deemed eligible for? Seems nonsense to me.

I am honest, if my condition improved I would let the dwp know.  In fact I would let everyone know.  This is not a condition where my physical capabilities improve. My world is small enough as it is.  To face the scrutiny, the humiliation, all over again.  The thought of this is tipping me over into a deeply unhappy place.

Is it not enough that every waking moment I am wracked with pain.  I dream pain at least I thought I did.  Now I know having communicated through the blogosphere to others with EDS that I am not dreaming pain.  I sleep an unrestorative, interrupted sleep IN PAIN.

Until the recent persecution of the disabled began, aged 46 I was beginning to feel that the relatively small amount of money I receive from DLA was something I need not feel guilty about.  After all we live do we not in a democracy.  I contributed via taxes etc. for a long time.  Now overnight apparently I am a scrounger.  My debt to society is too great.  Perhaps they should put us disabled up against the wall and shoot us.  Aiming for the perfect race, perfection.  All humans are flawed some more than others.  When I gave birth to my daughter all those years ago I didn't know I had EDS, I did not know it was genetic. Should I have denied the world her vibrancy, her very being because she is not genetically perfect.

So just when I was finding that I could reach out via this blog and gain inner strength from other bloggers.  I found myself - polaxed.  Crippled in another way.  Because apparently I am not good enough, to warrant respect. My privacy invaded, my bodily functions, the most intimate of functions shared with strangers, where is the respect there.  Shall we look to our sisters who chained themselves to railings to get a vote, to be heard.  I thought in part much of our fight had been fought.  Equality it is surely some sort of sick joke.  To re-apply for DLA or pip will be a humiliating, degrading and depressing process.

I am not against reform, I am not against change.  I am however appalled that the very weakest in our society are being bullied so.   I have a message though.  Beware be very aware that those that are being picked on here are used to pain.  Bring it on.  For we are stronger than you think.

A year ago I was awarded an indefinite award of DLA.  Previously to that I had been awarded three yearly awards.  For the preceding years as the three years ran out.  I braced myself (those with EDS may be smiling wryly here at the double entendre) braced myself for the invasion of my privacy, the explanation that yes my husband has to perform intimate caring for me, this I explained in detail and the rest.  I will do it all over again.  Still thinking that surely it should be enough that my GP could write a letter without actually having to go into intimate detail over and over again.  He could outline my condition and the limitations it has on my ability to function independently.    Will this save the government money all the new pip pip pippety pip.  I think not.  Even changing all the logo's on the websites, the headed paper, the paying the IT consultant's to programme, etc will probably cost more than is saved.

DLA is actually the least fraudulent of all benefits.  A tiny minority and surely they must be a little ill to be willing to lie so extensively in order to be in receipt of money which for the truly disabled is in fact a lifeline.  Enabling us to have a little self respect.

It seems that now not only do I face life with a disability so crippling I sometimes wonder if I did something bad in a former life to deserve such a thing; I also face the guilt, shame, and relentless invasion of my privacy simply because I was born disabled.

I am not sure how much of what I say makes sense anymore on this blog, which is why comments have been randomly latterly turned off.  I have turned them back on but please don't feel obliged to do so.  Particularly if you want to stop by to say, if I can type this I don't deserve DLA.  In truth, and I don't know why I feel obliged to explain, it has taken me in small chunks over a week.  With the additional help of extremely potent pain killers and good pain management techniques. Another example - the need to explain even as I write here, that the disabled of Britain are in fact being targeted in an underhand, unfair and inhumane manner.  Its obvious this supposed consultation before the inevitable changes to DLA take place that there is a sinister undercurrent at work that only the history books will unveil.  Long after I have left this world.


Others are so much better than I, at campaigning, I doubt very much whether my one small post will change one single thing with regard to DLA.  But I am used to shame and guilt.  I am disabled.

(By the way I have worked out as I write again a little of why I could not do previously, I think I was worried that I was pitied.  Along with the government/media induced guilt. For the record, the majority of disabled, sick people understand that pity is futile.  I was worried that I was moaning over and over again.  Well at least I do it here instead of over and over again at OH!

(Working out along the way that worrying about what I may write, have written is just me and anxiety.  Its like the tv, turn it off or change the channel if its boring, purile crap).

I just read this and although I can't do much of the list of want to's in the linked post it is food for thought and I think I should shed the guilt!

Silly me, they cannot steal my dreams, yet... Read & enjoy,  ......  Diary of a benefit scrounger - you-will-never-take-away-my-shoes