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.

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

To sleep per chance to dream.....

Long post warning- not very fashionable I am aware in blogging land, so navigate away if prone to irritation on long rambly thoughts from virtual strangers.

Its the middle of the night - I am in  agony for absolutely no good reason. Agony = awake. EDS is like that just when you think you have had a good day on the pain stakes it creeps up and kicks you like a mule.

Apologies in advance for spelling & grammatical cringeworthy content.  I have not the patience tonight for tortuous editing.

Severe pain causes sweating, not the gentle beads of perspiration a nineteenth century novel may describe.  (although some laudnamum would probably come in handy).  I don't even care if I sound a self obssessed moaning middle aged woman with nothing better to do than blog about it.

Why take the pain relief some say if it doesn't work.  Well it goes like this - sometimes it does.  There is no rhyme or reason to it.  Last night I slept like a baby.  This is probably the reason for the pain now.  That probably sounds like utter crap but the thing about EDS is that even sleeping is problematical.  You see the majority of people sleep and gain something from it.  In EDS sleeping is a double edged sword, its generally not particularly restorative.  'Sleeping through' means that the body relaxes sufficiently to allow the limbs to 'rest' normally in positions which cause subluxation/dislocation.

A deep sleep can mean that  a ligament unwittingly is stretched throughout the night creating a knock on effect of pain.  It can be a mistake to take sedative pain relief last thing at night before falling asleep in a vein attempt to avoid being woken by pain as masking pain from subluxations/dislocations which would normally wake one up can in fact cause worse pain in the day.  So waking & dealing with the pain can be the lesser of two evils.  There is a school of thought that says muscle relaxants make the pain worse which I think is true for sleeping but they help me on occassion for evening spasms.  Not daytime though if driving.  Pain relief is different for each individual and generally advice on medication appropriate for taking when driving is particular to each patient.  I am allowed to take some pretty strong meds when driving but that is ok'd with my gp.  I actually think its pretty dangerous to drive if in severe pain.  I am lucky in that I am not one of those people who suffer with sleepiness with the meds I take. 

I had fallen asleep half upright on the sofa last night/ the dog beside me on the floor gently snoring unlike the elephant snores of the other half upstairs.  The day before was one of those waking experiences similar to a very bad recurring dream which one knows one is having but is unable to do anything about the continuity factor. 

I woke with the paralysing, crushing pain rendering me unable to move.  Apart from the palpitations (these are not at all scary just remind me that I am in fact alive).  Husband out, teenager in bedroom in the land of teenage sleep (need I say more). So no one available to assist.  I have described this before and if I bothered to blog efficiently there would be a label to indicate where.  Thats a job for a freezing February morning I think going through this blasted blog and mindlessly labelling all the shit about pain and EDS.  That'll be fun.  I never did say this post was going to be funny, politically relevant, informative or indeed worth reading at all.  This post is for me, so please don't feel obliged to comment I really won't mind.

  I have had a good day today. Chuffed that I implemented various pain management techniques to cope reasonably well with the couple of hours of pins n needles in various parts of me.  To anyone who has a working knowledge of pain this is known as neuropathic pain.   Speaking too soon when I said to spouse this morning that the Lyrica  seemed to be really doing the trick.  ha ha...  I get pins n needles a lot and have this thing in my inner ankle on left leg that apparently is a severed nerve left over from varicose vein removal op - (many with EDS have early onset varicose veins)  when about 23.  The severed nerve that even the lightest touch causes the most peculiar sensation.  Sometimes it is almost pleasant sometimes just another pain of peculiar origin & experience.  This has also got a name but thats not in my brain.  I know the word really but its not that important to know it, unless I were a doctor trying to placate a worried patient, blinding them with science.

  I've had the crawly sensation thing on/under my scalp as well today (apparently thats the Post Herpatic Neuraliga in my trimengial nerve (sp) so thats ok, I know about that.  The Lyrica is supposed to help with that too.  I guess it does because I didn't have it the day before yesterday - so thats a positive thing.  I did fall over jarring my body when my leg was numb for no reason but husband luckily broke my fall being close by & we laughed  ending up in a giggly embrace which given the circumstances was a pleasant thing.

Earlier husband commented that I was in an inordinately good mood - I was - he was correct.  Why? he asked.  Brilliant afternoon - no pain.  He smiled, so pleased for me.

So that was great.

At about 9:30pm this mood changed as out of the blue I had the most amazing spasm in my back (possibly referred pain from my shoulder).  Did the stairs thing, which is problematical at the best of times and sat at the top when it was time to come back down again, shouting at poor spouse that it was bloody unfair and we either move to a bungalow or we get the stair lift.  Everyone went to bed and  honestly I was as nice as I could be bearing in mind I have gone from not too bad to severe pain in a couple of hours.  Not just in back but won't bore with tmi.

I am hoping anyone reading this post read the first line or so and thought oh god she's off on one and closed the blog.  Either that or I shall have to make my blog private - a diary of mine about PAIN.  A secret tortured account of living with EDS - the unfairness of it all.  The self pitying account of a life that could be so brilliant apart from one thing, just a small thing.  The unrelenting eff'ing pain.

I'll probably come back in a day or so read this and think - talk about wallowing in self pity. Pull yourself together.  Which by then I will have done and I won't write the same old crap day in day out.  The reality of EDS is that it makes me hurt,   inside & out.  Apart from that lifes a eff'ing non stop party.  If you have got this far and you are not one of the few regular visitors - it  wouldn't surprise me if you were thinking - good god she sounds really depressed.  Actually I am lucky I don't often feel depressed for that I am so grateful for obvious reasons.

Anyway my life is not so bad really.  The pain is not killing me so I must look on the bright side it is afterall just pain nothing more nothing less.

I read the blog linked below by way of distraction from pain earlier, not the genre of blog I normally go for.  The content was so awful a life written by the wife of an alchoholic that I was compelled to read it. Morbid fascination? Normally I would not be able to tolerate this type of blog as it makes me so angry but the way she tells the story of her experience made me realise that I am much much luckier than I realise.  She writes not expecting anything of the reader by way of pity or compassion.  I think possibly the author writes as an outlet, somewhere to put the words of her life down. I admired her honesty but it was uncomfortable reading.  I just wish she had taken notice of the neighbour years ago who had put a note through the door with the details of Al Anon included.  She later apologises to this neighbour whom she lost contact with long ago for her wrath at the time - her indignation that anyone dare to suggest that alchohol may be an issue.

Warning do not read this if you get upset by sad blogs. I am luckier than I think to be honest - my life may be filled with pain but not of the type described here -

         A blog I read

So despite my moaning and sleep deprivation I leave this post reminding myself that my life is a happy one despite the pain.

(came back to edit out a little swearing - too much methinks in retrospect written in pain, not particularly attractive for a middle aged woman, am tired though from no sleep so may have missed some).