Dignity & functional overlay

Most I am sure with EDS will have read the 3rd link given at the bottom of this page already regarding dignity & EDS. However I hadn't and at the present time its results ring true.  But in order to understand why I guess you may have to read my thoughts below which I have been putting off posting because basically its all a bit raw for me right now.

I am struggling more than I ever have before with feeling an overwhelming sense of doom just before an appointment with a new/existing medical professional, so the article regarding dignity seems not to have been read by the majority of them. 

One would have thought by now that I would be used to the whole remit of responses or not I get along with my condition.  That I would have come to terms in my middle age that it is a rare experience to have EDS understood, how frustrating living with constant pain is and the rest.  It seems not.  For some strange reason I am really bothered latterly with the lack of empathy, understanding & knowledge I receive as a patient.

I have thought about this a lot.  Have I turned into the neurotic, hypochondriac I have often been accused of being.  Why am I taking everything so personally.  At a recent doctor's appointment and I made it a double, two letters were required to be written one to orthotics which was sent, the other to ENT which was not.  Now if I were earning over £100,000 per year I would be embarrassed.  I think even my GP doesn't care much either & looking back I have received year in year out platitude after platitude.  In my current frame of mind please don't suggest I change GP I don't think I have the guts for it anymore.

Perhaps it was better a few years ago before physiotherapy sort of gave up on me.  Because back then there was lots of info available to new & existing doctor's about how my muscles don't support my joints and all about my wonky collagen.  Then they all decided I was incurable and the system changed and I got too old to be of interest to any of them.  They all wrote charming discharge letters etc and wished me on my merry way.

So to the post about 'that' neurologist - click next link if you are interested in reading a previous post about my vitriolic rantings about 'that consultant'! (previous post -physician-heal-thyself- ) who I think sent me spiralling out of control on the whole 'I am misunderstood' scenario.  I am thinking of sending the Dignity article (linked at end of post below) to him but then again I don't think he would care.

One of the things that upset me so much in the letter he wrote to my GP included the following statement -   ...... there is clear evidence of functional overlay.  http://www.ncbi.nlm.nih.gov - functional overlay
There is lots of horrible information on google about functional overlay if you dare go there - if you do and it has ever been written about you be prepared to be upset.  I was.

Firstly he was not able to complete a proper neurological assessment as I was wearing splints etc.  secondly for half of the examination he was standing behind me (I have a hearing impairment at present) so was unable to respond as I couldn't fucking hear him.  Thirdly he knew nothing of Ehlers Danlos.  Despite all of the above statements I still can't get over the whole functional overlay stuff.

As explained in a previous post he treated me like a waste on NHS resources.  From that appointment and then when I read the letter with the info on about functional overlay (which my GP gave me at the end of last appointment without giving me a chance to read in his office)  I have been fucked up struggling big time emotionally.  I have made a further appointment with my GP and aim to ask clearly his opinion on the rest of the content of the letter and whether he agrees with the functional overlay part.

If he does I am not entirely what course of action I am going to take if I have the self confidence left to take any at all.

I have been diagnosed with Ehlers Danlos for over twenty years - why now am I in meltdown?

I have long stopped writing positive comments on forums to others with the condition or even participating in them.  Apart from blogging & being in contact with the few lovely other bloggers I choose to share my life with. What am I supposed to say to forum users anymore, I never was any good at doing the whole - meeting up with other people with the condition, finding myself too cynical or not friendly enough and really not able to get into the whole happy clappy lets all have a party together.  Apart obviously from my daughter whose pain and disability I witness everyday or is she too also deluded and the pain is functional overlay.

I have tried & tried to get past this experience and I can't.  I have another appointment in the forthcoming weeks with orthotics and I am not entirely sure I will make it.  At some point in the not to near distant future an assessment for an electric wheelchair - you know for the pain that I am exaggerating.  Perhaps all they will also be able to assess me as someone who thinks they had a pain which has now gone away and I am unable to let go of.  Don't be surprised if I cancel these appointments.  Which will leave me probably housebound completely in the not too distant future.

Do you know what pisses me off the most is that I wouldn't wish this pain on anyone, so to be accused of wanting it to carry on for psychological reason is insulting.

If you are going to comment and write - don't worry he was just an arsehole.  With all due respect please don't.  Yes he is an arsehole but this arsehole's letters are for ever on my medical record.

 So if I could swop this condition with one that meant I was treated with respect I would.  To those of you out there with a condition that is well known please don't think I would dream of belittling either the symptoms or their impact.  I am just plain worn out of being labelled something I am not.  I am not fucking mad, I am not imagining my pain I have Ehlers Danlos.  If 'that' man and all the rest of the medical professionals could live in the body or mind for 24 hours of someone with Ehlers Danlos they would be ashamed at how at the drop of a hat so to speak - they have ruined my life.

The Ehlers Danlos hasn't - I came to terms with having it a long time ago.  Being taken seriously and being treated with respect I imagine never.


Oh & whilst I am having a moan - I am told I have to go to a family 'do' tomorrow.  Despite the fact  that my OH gets the fact I hurt big time - why does he say yes to stuff without checking I am up to going.  So tomorrow when I tell him - he can go along with grandson - I will no doubt be letting him down.  Do you know what these days I am past caring.  He can trade me in for a better model for all I care.

If you think I am depressed you are wrong by the way - I can understand why you may think so because of the negative post but in truth I am a pretty happy person - I just don't like the way I am treated.  I think its called justifiable anger.

Dignity - with ehlers danlos - no fucking dignity that's what.
www.ncbi.nlm.nih.gov - Survey results Dignity with EDS!

One picture.... of Glastonbury Tor

I began to upload a couple of photo's but soon realised the date was on them.  I can remove the date via the camera.  I am beginning to think i should have attended an evening class or similar on simple photography.

Anyhow one photo for the minute, irritatingly with the stupid date on!

I have written a few posts and left them as drafts which on reading this evening is the best place for them.   Actually I am off to delete them in case I accidentally hit the publish button and you get to see the inner workings of my troubled mind.  Self piteous rants about pain and living with it.  On reflection I have been hard to live with these past few weeks.

So before I am tempted to write any self indulgent self pitying  rubbish.  I'll be off to bed.

Don't go....

Ok short and to the point - I opened my reader and read this:-

ageing-ungracefully.blogspot.com - That's All Folks!

I have yet to know whether my comment will be published.  I respect the decision totally but I am left bereft.  I leave the rest up to you.....

AND THIS
out-of-poopy-stuff   A link to a post which is quite long but I feel well worth a read.  Living with ehlers danlos and the challenges it poses can be quite a struggle.  This young woman inspired me today to focus on the positive. 

  On blog - just don't understand why some of my favourite blogs just will not show in my blog list.

(ps - holiday snaps on the way - have found the thingy - uploaded photo's into wrong editing whatsit and they need a little tweak).

Happy doing nothing.....

I am sulking...

I can't find my lead thingy that I stick in my camera to upload photo's to laptop.

Apart from that the break away I wish was still ongoing.  The stillness, the time to sit leant agaisnt OH just gazing forever at the most beautiful view.  I woke one morning and found him staring at me which unnerved me somewhat, I am not good at the thought of being looked at without me knowing.  It makes me feel vulnerable.....   He smiled a relaxed happy smile and announced that I would be pleased to hear that he was that day going to do nothing.  You see I often do nothing but him do nothing - unheard of.  So we were happy together doing nothing.

When I have stopped sulking about lead thingy for camera, I will ask for help to find it.  OH half explodes when things are lost.  He feels I should know where I last had the thing I lost.  Well if I knew where I had the darned thing it wouldn't be bloody lost would it.

Apart from that all is well in our house, for in my mind I am still away staring at the beauty of an everchanging sky, pinks, purple haze, stars, silly summer skies.  I like views they make me happy.

Physically I am somewhat incapacitated but I won't bore with that suffice to say am fully armoured up, splinted to an inch of my life but thats just 'stuff' and afterall in my minds eye I am still away with OH and in my dreams I am lost for a while.

When I get back from clutching on still to busy doing nothing.  I'll get back to normal and complain again about ehlers danlos but for the moment I guess bloggy people you have had a lucky escape.

long time no speak

Not posted in a long while but just a small one now to test the waters for me.

We are off to Glastonbury tomorrow for our break so my intention is that when home I will endeavour to post again.

I have been reading my blogging favourites and latterly even managing a few comments here and there.

By the way if you are a potential burglar reading this and you have worked out where I live and see we are going away.  Don't bother coming here, the house is not being left unattended at any time.  You see I suffer anxiety separation when away from my pets and therefore need the reassurance that there every need is attended to whilst husband and myself are away.  So there.

The car is full of enough medication to account for all eventualities as outside of my normal environments I tend to have even more if that is possible mega multiple stupid accidents. You see in my own home I know where the door is and still bang into it but in unfamiliar territory so many doors, so many 'things' which just jump at me, particularly inanimate objects.  If you have Ehlers Danlos and are reading this I expect you understand implicitly that which I am trying to  explain.  My proprioception is poor at the best of times but away from home its about -10 Which with EDS means dislocation and pain.  So in anticipation of this I am sensibly prepared.

I am determined to relax big time..  repeating to myself often, think before you move any body part. 

I will not be able to climb obviously the hill to see Glastonbury Tor and the view so I intend to take photo's lying on my back at the base from my eco cabin whilst drinking a little scrumpy and snap The Crip's View of The Tor.  Husband can take the photo's when he gets to the top and after a little scrumpy I don't doubt I will imagine in my mind that in reality I did climb 'that' hill!

It will be good for him spending some quality time with moi as he rushes about a lot normally and I can't so enforced stillness will give him a much needed rest.  I have packed for every eventuality and my neighbour popped in and laughed a lot at me.  But us bendies need to know that we won't be cold or too hot. 

An elderly friend arrived with every expensive modern woman's magazine imaginable for me to read stating that she had read them and would I like them to take with me.  She is wonderful, kind and a good role model indeed in so many ways.  I will look after them and then on return from break away pass them on to my best friend who in turn will pass them on to her sister.  etc.  This is good recycling I think.  She knows I can't afford them and there is nothing like a little silly summer reading to cheer the soul.

I will officially be a year older and married 21 years on my return.  I hope to post a few pictures of one of the most beautiful places I love to be.

Can you tell I am an insy winsy little bit over excited.   Husband keeps laughing at me you know in a nice husbandy way.  So cheerio for now and keep smiling, for if you do all us bloggy lot will be smiling together and that would be just great.