Peace....

A Very Merry Christmas to All Who Celebrate.

Thank You Bloggers for Enriching My Life

Truth...

Ok short post for me.

Can't post.  Lost the mojo.

What do I say over and over.  I hurt.  EDS is shit.

Thats it.  If anything changes I may post again but I simply can't pretend that its ok to hurt this much because its not.  If anyone reading thinks I am just feeling sorry for myself perhaps thats true.  Regardless - of the reasons I can't keep posting it hurts - it f'ing hurts.

So I may pop up to say - something or other but don't hold your breath.

Popped in to say ........

I hope things are on the turn.  Thank you to all for kind comments it means a lot.

I may not post again for a while (not that I am know for prolific posting at the best of times) as I am trying to concentrate on willing myself well.

I am thinking of Steph xxxx and BG particularly and of course Rusty Hoe wishing her well for her procedure.  Kim@frogpondsrock husband who has EDS and rushed into hospital with an infection.  Happy Birthday Veronica.  Have Myelin xoxoxoxo

Apologies if I have missed anyone out its not that I don't care my brain is mushy.

Am drinking disgusting meal replacement drinks as lost weight I don't need to and have never felt so unhungry ever. 

My daughter keeps sending me silly texts even though she went out only two hours ago which is making me smile. 

Next time I post I hope to have found my sense of humour because normally ......

chondriditis

Well despite me wanting to write I am well.  I am not!

All I am saying right now is this - Perichondritis - chondriditis  (sp?)

Pseudomunas aeruginosa  (sp?)

- commonly caused by cross infections in hospital medical equipment

I feel ill and am battling with doctor (although to cut a long story short no GP appointment and nurse saw me no GP available) Has given me inappropriate antibiotics.  She has no idea what I have but I have had this before.

As usual with ehlers danlos and even minor surgery nothing is ever simple.   I pleaded for antibiotics prior to surgery.  They should have listened!  hindsight eh Steph if you are reading this.

As usual its now the weekend and I am trying to stay out of hospital.  The friggin cartilage is infected now - I tried to say. 

I am pissed off with a great big P.

The words came tumbling out...

I'm here with no particular reason to post. So the words will tumble out tonight.

So here I go.

Still I haven't returned wheelchair services calls.  They keep leaving messages on the phone, which I don't pick up.  My son informs me of them.  'They want to know if you want a right or left handed power chair'  silence.  I can't process any of it. I want to ring really I do and explain my muddled thoughts. Coming to terms with this is sending me to troubled places in my mind. .  My home is my sanctuary.  Its the place where my family and I live our muddled life.  Perhaps I feel guilty. I am not paralysed afterall. Pain is a major factor with EDS.  I can walk but before I walk it hurts big time.  But my house is small and why are they asking if I need a right handed one or left before the wheelchair environmental assessment.  My social phobia is grabbing me round the throat big time.  I didn't realise I was so adverse to 'strangers' in the house until now.  I know they are there to help I know this. Perhaps I should ring them and say it would be more realistic to start with an attendant wheelchair to see how I get on?  I actually am struggling with the stupid stress this is causing.

The other telephone message repeat - is from the OT.  Now I know I need a stair lift and more.   But I am over worrying? Probably because of the current trend in the UK of making out the disabled are fakes.

I accept that having written the above it may appear that I am neurotic needing the services of a psychiatrist rather than OT or wheelchair services.  Perhaps I am.  In truth I long for the impossible.  Financial independence.  Then I would not have all this unnecessary worry.  Because like it or not the not returning calls thing (which obviously means I am not answering the phone) means I am getting in a state probably for no reason.  I keep saying to myself, stop ringing me up, write a letter with an appointment.  Why is the latter acceptable?

The only benefit I receive is DLA.  Which I completely deserve.  What is happening in the UK at the moment.  Am I the only person with a disability who feels like a scrounger.  I have never felt this way before.  Could it be that I need to stop all outside contact, so that I am not bombarded with news overload on how the disabled of Britain appear to be the cause of all money problems the country suffers.  I am a rational reasonably intelligent person, I know this is not true.  So why do I feel this way.  I am beginning to think that the whole attack on the disabled of Britain has caused some bizarre sort of reactionary depression.  Normally I am happy go lucky.  My family and I are pretty insular, we muddle on.  Laughing at our lot. I had thought I cope reasonably well with what is after all a chronic condition.

My husband works locally so that he can be close by, for me.  The only money I receive is DLA.  I am not a liar.  A scrounger.  So why can I not get the overwhelming feelings I am having about accepting help in perspective.  It is not right or realistic to live in a bubble, never exposing myself to current affairs, the media.  However wherever I turn its there.  Is it actually possible to have a reactionary type depression because of the disability hatred going on at present.  Am I soon to add to my list of medication, anti-depressants?

So worried that even an Occupational Therapist won't believe that my collagen is wonky I think she will contact the DWP to say.  Mrs Achelois is a fraudster.  My pain is real, my condition is real.  I am honest.  So why?  Ehlers Danlos is a lifelong inherited painful and debilitating condition so after all these years, it has come to this.  It could be said I am being paranoid and perhaps I am but something has triggered it.

I think I know what it is.  Its the equivalent of racism. Disablism?  Hatred for the weak, sick, vulnerable.  To pick on a minority I had thought was illegal in the UK.  It seems not.

I have been wanting to write how I feel about this for a while but haven't for my thoughts are troubled.  Saying has made me feel better but no less worried.

I know that others have far more to worry about.  Cholera for example.  So perhaps I haven't voiced my fears previously through guilt or fear of being accused self indulgent.  All I wanted when I spoke to the GP initially about a referral for a wheelchair was more independence I guess.  The process has backfired somehow and I have ended up feeling worried, angry and stressed.

Perhaps I should ring wheelchair services and explain a little.  I would appreciate any input here as for the first time in a long time I am floundering around.  Should I ask for an attendant wheelchair initially?  Instead of this overwhelming process.

Is an Occupational Therapist really a government spy?  Ehlers Danlos is so rare, so misunderstood.  I don't think I could bare it if my DLA were taken away because I asked for help.

I know I am panicking.  Aware my thoughts are running away with me.  In pain tonight, that I am used to but not this.

Looking back, I wish I hadn't gone and spilled out to the GP just how difficult things were getting with the EDS.  This stuff is new to me.  Paranoid?  Maybe.  Or a realist? Living with EDS is hard each day is a challenge, I have always met that challenge head on.  Until now....

I really badly need a decent haircut.....

Thanks to Veronica (somedaywewillsleep) & Kim (frogpondsrock) I have pinched the idea of passing on a blog I read.  I thought about showing another but because I am selfish I quite like it being my guilty pleasure, not yet ready to share.

So it is my pleasure to direct you to Mr London Street - http://mrlondonstreet.blogspot.com/2010/10/self-help.html

I have a feeling anyone who visits here reads this brilliant blog already but I am nothing if predictable.  Mr London Street is a breath of fresh air.  A man who talks properly about stuff!

After recently saying I don't know who visits here I have found that stats are available to me.  I now know that those who visit here are a direct result of where I comment.  I think perhaps I should have emigrated a long time ago.  I turned down the opportunity to go to Australia/Taz with a boyfriend, I regret the not going to Australia/Taz but not the not going with 'that' boyfriend'.  When young I had a habit of falling for looks and charm forgetting to check out, verity & probity.  So it was with great pleasure when said boyfriend contacted me a couple of years ago, visiting from Bermuda where he now lives with a beautiful but incredibly dense girlfriend. (So why was he contacting me, nothing changed there then) stating that he would love to see me.  After 25 frigging years.  Don't get me wrong a bit of me wanted to say - Oh all right then.  But I am not as young as I was & I like the idea of him remembering me as I was and frankly I wanted him to want to see me and me say no.  I did that.  He immediately said - Oh & a Happy Christmas to you too and slammed the phone down!  Did I leave out that he could always have done with a few more manners.

Had I stayed with him, we would be rich & I would be unhappy.  He was a serial womaniser.  His father in fact was a bigamist.  A man who was married to a wonderful sincere woman (the wife I knew) who found out after many years of marriage that he had a whole other family & wife.  My ex was the type that would fly back into the country - he worked abroad.  Waltz into my life, sweep me off my feet each time and I subsequently found out was doing this to other women in other countries.  I cried and cried fruitless tears over that arsehole.  So when he rang, it was with great pleasure that I not only said - no thanks my husband and I are going out but also rather unnecessarily - (pretend name) Andy who?  I'm afraid I really don't remember you.

I do still have a photo of him in all honesty.  I take it out occasionally to remind me how lucky I am.  My OH has his faults and I talked latterly of marriage and the bits I would change if I knew how.  But do you know what, I would rather have Mr Achelois than that arsehole each and every day.  The only bit I regret is that I didn't play him because if I had I would have got to go to Australia, Taz........   but then again I wouldn't have met Mr Achelois and that would have been a tragedy.

Not sure why I blogged about that. Perhaps its because I have a temperature.  Following the ear drum incision and hoovering.  (can't spell the procedure) I have a bloody infection in the air sac? in the bone behind my ear.  I spent a wonderful hour and twenty f'ing minutes waiting to see a doctor.  Amongst people who frankly should have been at home in bed.  Why people go to the doctor with the common cold is beyond me.  You have a cold, stay at home, stop spreading your germs and put your f'ing hand over your mouth when you cough. Please.  To the mother whose 7 year old daughter was vomiting into a bucket, did you not think she may have been more comfortable with you holding that bucket by her bed at home.  The gp was not best pleased.  I must admit I had bad thoughts about her, I am not good with anyone outside my immediate family's vomit I am afraid.  I hope the poor child vomited all over her car and the particularly smelly bits stick down the sides of the seat and stink forever.

  I have never met the gp I saw today before.  He was very nervous and running very late.  I don't think long qualified.  In time I have no doubt he will stop shaking and give diagnosis with confidence.  In the meantime I really really feel for him.  No doubt he went into the profession  because he is a genuinely nice person wanting to heal the sick.  In some years he will learn to go on expensive holidays and bitch along with the others about Mr Borings piles and Mrs Moanalot's snotty kids.  Can you tell I waited too long.  I am a nice person really and I spent the majority of my time talking to a very lonely old lady who had shingles.  Now I have had shingles and I was looked after.  She was vulnerable and lonely and had no one to look after her.  She probably caught something nasty waiting.  What has happened to the old days when gp's visited the sick at home?

I remember as a child our local doctor (we lived rurally) would set up shop in the back room of the pub.  Those were the days.  As I get older I am aware that I have probably more to look back on than years to live.  The older I get the more I remember.  I particularly like it that for the most part it is with rose coloured spectacles!

I have just realised that I am reminiscing because have myelin (see blogs I like to right) posted about diaries.  I commented that my diary is in my head.  Apart that is from the crap I write here.......

Hoovered Up....

Well I arrived - to get grommets.  No grommets!  Instead, they made an incision in my ear drum lifted it up and hoovered away.  Mini Dyson in ones ears is extremely loud.

I signed permission for this although I was so hungry having not been allowed to eat or drink for hours I am still not entirely sure I was in any fit state to do so.

He wouldn't fit the grommets because of risk of rejection/infection and that at the 'moment' my ears are not gluey enough.  But there was a lot of garbage behind eardrum from numerous ear infections and perforations.  My hearing loss on that day was the same old familial thing - loss of high tones and very low ones.  Not the no hearing at all I get for months in the winter.

Stapled to my notes was a wikki article on EDS!   Last night I was nauseous and dizzy, this morning sore and feeling odd.

It appears that my Eustachian tube is too small.  This may be because of my prematurity ENT bloke says.  So at the onset of any sniffle am to snort a steroid to try to keep them draining.  They were the most charming and kind staff I have ever encountered.   This was a joy as some of you know I have experienced on occasion the opposite.  I am pleased to report that at all times they took into consideration the EDS mobility issues and I had a lovely nurse whizzing me around in a wheelchair along very long corridors.

This evening our beautiful wonderful loyal staffie was put down due to the glaucoma and I have spent all evening bawling my eyes out.  He was a much loved pet who will be missed always.  If there is a heaven he will be cavorting with our last dog and cat.  My grandmother will no doubt be keeping her beady eye on them all so they will be safe and 'B' will have no pain ever again.  Losing a pet is so sad, losing a pet in its prime is just heartbreaking.

My minor procedure is nothing in comparison.  Normally when I blog, OH is asleep, the dog lays with his head on my lap surrounded by cats.  If this post is bland its because I am all cried out.

So as not to end on a negative, I am so pleased for both my mother and goddaughter who are happily on holiday in sunnier climes (not together).  Nothing makes me happier than knowing that the people I love the most are having a brilliant time.

Bits and bobs...

On the wheelchair thing - I am thinking of cancelling the whole process.  Its stressing me out too much.  Thinking that perhaps I should hint loudly and if I do it for long enough around my parents something good may happen.  In truth probably about as long as the whole waiting for wheelchair services to work their magic would take.  I still don't get the whole indoor/outdoor stuff.  So just don't even want to think about it anymore.

The hospital rang apparently (today as I was in a I am not answering the phone mood).  I am to have the grommets done on Monday!!!  A nurse will ring and do the pre-op on the phone!!! What bit of I can't hear properly do ENT particularly on the phone, do they not get.  But no matter, my primary concern is that they can obviously hear but are not LISTENING to - I have great difficulty with efficacy with local anaesthetics (injections and cream) because of the EDS.  They are not listening to this and I am concerned that it is going to hurt a lot.  Before I was diagnosed with EDS giving birth to my first child I was stitched up by a murdering cow wonderful midwife who simply did not believe that injections didn't work and I still haven't forgiven her.  Dentists tend to be more understanding I have found although I still abhor going to the dentist.  I hope the nurse on the phone LISTENS.  Although I must be honest I have never had a pre-op on the phone before.  Probably because its not an op its a procedure.

I am worrying about money a lot.  Along with worrying comes guilt and plenty of it.  When one relies wholly on another for everything its hard to moan at them about money.  Enough said really.

I am holding my breath for the last Chilean miner to pop up out of the pod... so can't comment on that until that happens.  edited to add - yippee - last one out ages ago - I obviously worry so much I forget to check on reality....  

The carpet that is supposed to be fitted in 'our' bedroom is still rolled up on the floor in the lounge.  Waiting for me to tidy up the bedroom.  I have tried to explain that the mess is too much and it looks as though I will be explaining that again.  With the possibility of a major 'take notice' tantrum thrown in.  These days I save these types of tantrums for important things, I'll let you know how that goes.  See I am so confident someone will be reading I blithely write 'I'll let you know'..  The carpet is new to me but not new, so I am having to adapt to the colour.
Beggars cannot be choosers however as my darling grandmother used to say.  It will be better than the floorboards currently exposed.  Now if we lived in a rural cottage like this -

 

floorboards would be fine & dandy.  However we live, albeit in a sleepy village similar to the one in the photograph not at all in a house whose original features look good.  Also I am afraid to say that hard floors and fally over EDS people do not go well together.  I feel I am coming to terms with the carpet not of my choice quite well, thinking that it is good to re-cycle (not really thinking so in this instance but it is good to re-cycle) and that in truth the majority of a bedroom is taken up by the bed afterall.   If I keep repeating these reasons to myself often enough I will believe.  I think its called self hypnosis.

Moving on swiftly, I am watching a programme called Countryfile and am much impressed by a town  where food waste (including meat & bone) is collected each week and converted into electricity.  Clever technologies.  Not everyone has composting facilities.  Converting food waste to electricity instead of sending to landfill - a good idea.  Sewage to electricity another good idea.  I like good ideas, I prefer though when they are put into action.  In our house food waste does happen I will not lie but I hate waste.  I am my mother's daughter!

Well that's more than enough of my bits and bobs ...

E-Motion

Ok I think I would give this a go  http://www.davincimobility.co.uk/

Lightweight with the e-motion powered wheels.

If you are reading BG - I wonder if you think this would be viable with hand/shoulder and the in-between bits issues with EDS?

I reckon if wheelchair services provided these they would in fact end up cheaper than the big bulky models they favour?

Having looked at some of the other options my head is spinning now and fancy some country parks and proper offroading - the options are out there.  How come wheelchair services still live in the dark ages.

My preference I think would be for the E-motion (see details below).

description below from website - funky or what.  

E-motion power wheels fitted turning a self propelling wheelchair into a power wheelchair,  Ask for a free quotation. 

E-Motion powered wheels E-motion reduces manual effort up to 80%. Simply maneuver as a manual wheelchair. Applying pressure to the push-rims engages the power-assist motors to help you with your everyday travels. If you are not ready for a power chair, but have worn out shoulders at the end of the day and would like to benefit from motor assistance, then try e-motion powered wheels and feel the difference for yourself!   *(at the end of the day ha ha ha)

With e-motion powered wheels on your manual wheelchair you can conquer steep hills and ramps with ease, go longer distances without becoming tired or achy, and be more active.

80% less effort than self propelling - would I be able to push enough I ask myself.

This is what my GP was talking about and he said 'S.............' they should provide one like this.  I will look forward to your feedback on wheelchair services!  He knows me well and knows that despite the fact that I will no doubt not get very far with an appropriate powered chair as 'he' has deemed necessary and told them so!  I will give them a run for their money.

I have I must admit thought about cancelling the whole assessment - but as there is a waiting list anyhow I am sure I may muster up some gumption to challenge some of their seemingly archaic working practice!

Despite the fact that the GP has already told wheelchair services that this type of wheelchair would be suitable my guess is that this particular service provides -fuck off chairs that don't fit in normal sized houses!  Is there a whole load of people out there relying on carers to push them about when really if WCS moved with the times things would be different.  Or people getting indoor power chairs which  because the rules state they have to in order to eventually get an inside/outside chair.  I fear I am repeating myself now.  I promise I won't post about wheelchairs for a while yet as you may guess they are on my mind a little right now.

Steph - thank you for your comment - I could not agree more! 

BG - Please do let me know if your local wheelchair services department has changed at all and how you get on.  I don't think my house is big enough either for a power chair - in fact I am not sure many people's are.

I have a feeling that I may have to do that thing I abhor for so many reasons and beg parents for a loan.............


Just to say if you have stumbled across my blog and are thinking arghhhhh she's a seriously negative human being.  In reality I am not.  I am actually pretty grounded and I laugh and sing daily its just I can write stuff here and get it out of my head in turn enabling me to cope with life in a positive way.  Its only a blog afterall and its mine so I can write what Iike as long as its not causing offence or hurting anyone.  There are so many blogs out there that if its not your cup of tea thats fine by me, there is plenty more out there.

Moving swiftly on.......

Wheelchair services to be or not to be... that is the question

On happy smiley me - we have another kitten - black and white named bliss. I promise no more kittens unless we win the lottery and move to that mansion.

I deliberately wrote knew instead of new further down this post I am in that kind of mood.

I am not intending to read this post through after writing it so it remains 'surreal'.

I mentioned in a comment recently that my GP had referred me to Wheelchair Services.  I subsequently received a phone call from a lovely lady to 'explain' how this service works.

Now I have thought over and over again how I could possibly put the conversation that ensued into words.  BG from benefitscroungingscum.blogspot.com replied to my passing comment about this to one her posts that she had found such encounters surreal.

It has taken a little while for me to digest the information within the phone call and I agree entirely with BG.  Firstly trying to explain to someone what ehlers danlos is who has no medical knowledge at all is tricky.  In the end I suggested she googled in desperation.

She explained very politely that it goes like this - if one is deemed appropriate for an electric wheelchair following an environmental assessment (this basically means looking inside and outside of my home), then after a very long wait, one is issued with a powered wheelchair that one can use inside for four to six months then after that, they see how you get, they consider an indoor/outdoor model.  Another long wait.

She asked me why I could not use a 'walker' - crutches etc. and I patiently explained that I cannot hold my body weight through my hands, wrists, elbows, shoulders, spine ......... because I have ehlers danlos and this causes subluxation/dislocation and soft tissue injuries plus more.  The same reasons I cannot self propel a wheelchair.  Oh yes the more includes mind blowing PAIN.

She asked how I walk now, I explained that I am currently using knee braces but this isn't the only bit of me that is the problem to do with walking, you know the other bits included, feet, ankles, hips, pelvis..... the braces do not 'cure' me and with a combination, indoors of staggering around and hanging on to the furniture, the dog, and more often than not 'not' walking these days it is a precarious painful process. She obviously isn't interested as yet on the outside bit but for the record holding onto OH is OK after all these years of marriage but it would be nice to not deemed agoraphobic more than I already am simply by dint of 'the criteria'.  If you are getting lost here remember only the inside bit is considered for the first six months.

I did feel as though I was having to justify myself a little too much and a qualified doctor had deemed it appropriate that I need an electric lightweight wheelchair. Bearing in mind she was not medically qualified she was pretty invasive with her questions.  However I kept reminding myself that it was all in a good cause and not to be my normal bolshy self and continued to be charming.  Hiding well I thought, a pretty strong urge to terminate the conversation.  She being the facilitator so I thought to improve my mobility and independence.

She then explained that powered wheelchairs are bulky and that the environmental assessment would look at my home (fair enough) and if I couldn't get access to the garden with it then I wouldn't get one.  (Bear in mind they don't trust one outside of the home for up to six months).

I would need a vehicle with ramp access to take said wheelchair for the inside/outside chair.

I said that in the home was pretty rubbish but its walking outside as well that is an issue.  But the way they see it disabled people apparently don't need to go outside.  Inside and be grateful be damned.

She explained - that on the NHS only bulky powered chairs are available but that she would send me a letter explaining that I had been put on the waiting list for an environmental assessment.  I said save the trees as I had ascertained that from the conversation but she was obliged to not save the trees and send a letter anyhow.  Bearing in mind how stressful I was finding this whole conversation I thought my minor pun on the words environmental assessment including the trees was pretty good going.

I have left out other more ridiculous parts of the conversation because in truth thinking about that more just upsets me.  It would seem that the GP shouldn't have bothered frankly making the referral because they won't actually be able to accommodate my needs.  I don't have the money to buy the type of wheelchair which would be appropriate.  So it just leaves me wondering whether the system was set up and the criteria of need set up deliberately to make people realise its a no go situation.  Well it is if one is rich obviously.  Money and lots of it would be entirely useful in these circumstances.

(just read a little of this post from blog and have to say a whole paragraph has disappeared if you find it in or out of my blog please return to confused sender)

 One is also apparently given a dvla type test if one gets an outside/inside wheelchair.  I said, I have a proper driving licence and she said I would still need a dvla type competency test on eyesight etc. I repeated that I have a full driving licence, she repeated that it didn't make any difference.

Oh and if I had epilepsy I couldn't have one.

Well that did get me going - I don't but those of you who have read my blog for any length of time know two members of my immediate family do.  I asked her to explain further.  Well goodness me, we nearly fell out.  She explained that epileptics can't have a power wheelchair because its not safe.  OH MY GOD.   and that perhaps it wasn't entirely appropriate that she say this like this and that she needed to think carefully before stating that epileptics persay wouldn't meet the criteria!  Suffice to say I think she may be giving some thought to terminology.

I have missed out a fair bit of the conversation because frankly I still cannot believe my ears.  It has taken me ages to type this post I am fally aparty and if the continuity is poor its because I have typed a bit, and come back another day for a bit more getting more confused by the moment as time passes about exactly what bit of the 'wheelchair' and 'services' bit applies to each other.  Seemingly reams apart.

Now if anyone who works for wheelchair services is reading this its nothing personal and I am sure you didn't make up the rules so don't take offence.

My guess is that all that I will get out of this is a bog standard wheelchair which carer will need to push.  Expecting more was just a pipe dream I guess.

I apparently need to move home, I need to be able to drive a car I would not be happy to.  Mine is a small automatic and that is all me and my mini driving phobia can cope with.  So despite how much us disabled lot want to be independent it seems wheelchair services don't quite get it although I was left feeling that its me that doesn't quite get it.

Oh as an aside every time I try and have this conversation with OH his eyes glaze over with denial more than I am capable of bearing in mind I like denial. 

So having got all that out of the way - knee brace, jury is out at present.  It is pulling my hip out of its socket, my other leg is complaining big time (a bit like me) and other hip is not liking it at all.  members of the public do seem impressed though and continually ask me what I have done....or my OH with the does she take sugar principle.  I wonder if these random strangers would like to take me out to lunch whilst I explain tee hee...  It seems with a brace or caliper as someone referred to it the other day means my disability is suddenly real.  Its magic truly abracodabra (sp) along with the rest of my dodgy spelling.

I still can't crotchet... bendy fingers 'n all that boring stuff seem to make this more complicated than it should be.  I will perservere.

 After all that I have run out of brainpower to say much more.   I haven't written the whole wheelchair services saga because of moaney ol me reasons to be honest more in case someone googles wheelchair services and stumbles across this it may help them realise they are not dreaming its real life.  Its better than the telly - its drama.

Necessity, not bondage...

This is my new knee brace, sexy oh so sexy.  It is not a picture of my leg by the way.  My brace is blue.  It is interesting that when wearing this, people try not to stare.  The positive is that they give me a wide birth which is helpful as I fall over if people don't make way for me.

Finding appropriate clothes to wear with it is challenging.  It was expensive in the many hundreds of pounds.  I feel I should accessorise appropriately. The NHS in this instance did me proud. Skirts would be best to hide it.  But its getting colder and I need covering.  Because I am small, I cannot wear it under jeans as they would fall down (the jeans would need to be bigger) and over jeans is not a good look.  Because of my thin skin, leggings work well but the bionic woman look is so 70's.

Because it holds my knee in place it seems my ankle has decided to join in the game.  Wobbling away.  But one thing at a time.  GP forgot about other knee so for the moment I have one knee braced.  I am not keen I must be honest and it will take some getting used to.  For the moment though my knee is happy to have a friend who does the job a knee should do.

Next on the list is OT assessment.  I am hoping there is a long waiting list as the house, particularly upstairs is not for public viewing.  She is to assess for a stair lift and lightweight electric wheelchair.  We shall see what happens.

With the current budget cuts I expect she will agree that I need all of the above and more but due to constraints she will not be able to provide, the wheelchair in particular.  It has taken me a very long time to come to terms with all of this.  I am still somewhat in denial.

I like denial.

On the crotchet front, getting absolutely nowhere with it!   However, looking on the bright side, I have plenty of time to get the hang of it!

 

I am watching a film with subtitles.  I have always loved as long as I can remember watching films with them.  Perhaps its because I miss so much because of mild hearing impairment.  I also become lost within them, entranced by languages I can't understand.  The film is complicated, fascinating.  http://en.wikipedia.org/wiki/All_About_My_Mother    For some, shocking.  Its unusual for me to watch a film throughout.  This one I would like to watch again.

My son has passed his driving test. I have been through this with my daughter.  I must not panic each time he goes out.  He will be fine.  I keep repeating this to myself over and over.  He looks at me each time he goes out as I say 'I love you' and helps to ease my rising fear by smiling with his beautiful blue eyes and says 'I love you too, mum'.  I am proud of myself that I am learning to let go.  When in reality I want him back in his cot, sleeping soundly, safe secure.  OH has agreed to another kitten, he sees me panic and I see him thinking.

Yes another kitten will definitely help.  I can spend time thinking of a name.  Distraction.

* mini note: On denial, I actually had a home OT assessment ten years ago.  Wheelchair electric, stair lift, bath thingy were approved.  I have been in denial for a very long time. As none of the suggested 'stuff' was allowed in my house thanks.  Oh yes.. denial...

Moving swiftly on...

*edit - i read through this post and am aware I have not enough o's on some of my too's, my grammar is crap and there is whole that should read hole.  Plus the rest but  if I look anymore bearing in mind I can't find them again I will lose my bottle and not hit publish so apologies to those who are irritated by poorly written, misspelled, grammatically incorrect glogs you are probably in the wrong place.

NB - Please do not mention my dog.

I am writing another post so quickly after the last in the hope that my blog has not become 'a heart sink patient'.  You know the type, GP looks at patient list for the day and sighs heavily.  Oh God. Its her again, the moaner.

I must be honest its hard sometimes not to just sit here and say -

My Life is crap because ................

Its not actually total crap but it would be incredibly easy for my blog to become a forum for all my woes.  Well not all of them because there are actually more than I write which is why I am not writing very many at the moment.  I could tell the truth couldn't I and be brave but that means I may as well hit the private button get it all out and make it a personal diary.  Believe me I often think about it.  Then I could read it back when I am very old and laugh at myself.  The thing about blogging is I have realised, in part because  it is in the public domain, I often feel obliged to say I am fine and this witty something another happened today or provide an informed post about EDS and then write some witty little thing about my family. Throw in a few politically correct disability related snippets and consider the job done.

Well mine isn't that much in the public domain because I haven't made all the settings so that it comes up in google searches.  I mean the fame would probably just go to my head.  I would probably have to work out how to use another email address and all that jazz.  Most visitors seem to have stopped by because I have commented on their blog.  I don't mind at all about visitor stats etc. because I don't have the gadget that does that.  I can't log ip addresses because I don't appear to have that facility, so if I ever get spam then I'll have to just be darned rude and hope they go away.  I sort of have blog envy when people mention spammers as it seems to me whilst unpleasant it means one's blog is popular and therefore successful.  My dashboard thingy suggests I check for spam occasionally in its spam catcher but it is always empty.

Kim over at frogpondsrock (see blog roll) has been having a little worm being an irritating and thoughtless commenter and I like it that decent bloggers rush to the aid of someone who is having problems with them.  Its a reminder that the majority of the blogging world is full of decent people.

Anyway back on topic - others like Rusty Hoe please see this bobisdysautonomia.blogspot.com - Where am I going...     write brilliantly about disabling conditions.  I open my blog go to new post and immediately my vocabulary shrinks, my wit leaves the building and I seem to write in far too plain English.  So I ask myself why? other people's worlds have shrunk through illness and disability but they retain the ability to write well.  I tried telling myself this afternoon it is because I don't get out enough, I am not intellectually stimulated.  I am bored which probably equates to boring.

If truth were to be told, I could reveal all and let it all out but that would be cruel?  So here is a disclaimer I am about to be brave and hint at a few home truths.  When I hinted at my mid-life crisis I gave a synopsis.  I didn't say, I think my husband has had enough.  Which is what I am thinking.  He is loyal and all that and not a wanderer but I sense despite the fact I big him up here for his unquestioned support.  In truth there is something missing these days.  Or is that normal when one has been married for 21 years.  I am a Leo and although I don't hold much stock in all that, I do use it as an excuse for certain of my behaviours.  I am prone to blurting out what is on my mind of late to see if I get a reaction. 

ie:- God it must be boring married to me.  Wouldn't you prefer a younger model. Shall we do something exciting this weekend or shall I just sleep all day, so that you can read the paper and drink lager without interruption.  The stuff that is wrong in our marriage could probably be changed by a shift of priorities on both parts.  I think he feels resentful that he works so hard and comes home to a very untidy house to a boring, cripple of a wife who has a tendency to talk crap all evening.  He answers mmmm a lot in response plenty of late and last night I tried an experiment.  I gave up making conversation, go on guess, OK you probably have already - absolutely no conversation whatsoever.

Sometimes without meaning too I am hypersensitive to criticism (a failing of mine) and I overreact to mild stuff.  This leads to an argument, when one has been married for as long as us, even rows can become predictable.  Generally over the same things.

Just so you get it.  I am not moaning yet by the way I am revealing just a little bit more of myself than normal because not doing so means my blog is becoming very plain.  So I am not looking for sympathy just being a little brave on the this is my world thing.

There are lots of articles in magazines (if you are a regular reader you will know I get given them, I come from an era or from parents who would make me feel so guilty if I bought a magazine or frittered any money that because we are not loaded I just can't waste my money on them). anyway lots of articles with zany titles -  how to get the pzasss back in your marriage, 10 things you need to know about how to keep a marriage alive...

I like to think I am intelligent and articulate in an argument.  I try hard not to just slate the other party for the sake of it.  My OH on the other hand goes for the jugular - as soon as he feels he's not being agreed with and there is the slightest hint of a raised voice, he tells me I am stupid, (now I know I am not but it never fails to hurt my feelings) he can just be plain nasty.  We argue less these days, about ten years ago we went through a bad patch and we did the whole lets split up thing which lasted about a week and since then arguing happens when I deign to disagree.  You see my husband you know the other half that mostly in this blog I refer to as, he that is supportive and perfect isn't really. Who is.  Its just I have felt that by saying he isn't is airing my dirty laundry in public.  Well to be frank it is isn't it?

What has made me change my mind.  Its been bubbling away for a while now.  When I say on this blog I think I am becoming boring, I don't say why.  When I hint at my mid life crisis, I don't say why.  Now suggesting marriage counselling wouldn't work.  He is the type of bloke that would move out throw it all away rather than do that.  In his mind, marriage counselling is for those to chicken to divorce.  The truth is we have fallen into the trap of been married so long we take each other for granted.  We rarely socialise.  He reads the paper whilst drinking a Stella (s) every evening and at weekends we have to be home by early afternoon for this ritual to carry on.  A lot of the time I don't mind.  Having EDS means I get tired a lot so having an excuse to do bugger all means I don't have to say - I'm sorry I can't do such an such because of this stupid condition and I'll sleep, watch TV, pretend to knit and currently pretend to teach myself to crotchet.

However, because I am middle aged now my life has become so predictable I feel I could scream and scream and scream and scream.  I see 'us' disappearing into a black whole from which I am not sure we can recover.  In my daydreams I dream about popping out one day and not coming back for six weeks or so to see if he would miss me.  Announce that I need to go find myself (except I have no money) and him understanding.

I know I have a habit of blaming him when the chips are down and I hate myself for this.  Expecting someone else to be responsible for your personal happiness is childish.  So I think to myself, right what I need to do is make my life more interesting.  Perhaps an evening class or day?  Then I talk myself out of that.  My condition makes making plans quite hard.  From previous experience, setting oneself up for a fall is not a good thing for self esteem.  This probably sounds like a whole load of feeble excuses but its actually true.

My mother rings with handy hints - oooh I saw this group where everyone talks about literary stuff and such and bla bla - she only wants to help.  By way of explanation, my mother was a Headteacher, she held down a full time job, went to at least two evening classes a week, was a supportive wife and mother, did her MA? in comparative education aged 45 travelling to Russia etc, she entertained and gardened and had/has so much f'ing energy it used to wear me out just watching her.  Still does in fact.  Oh how I wish I hadn't let her know as I said here the other day I was feeling a little low.

So by way of climbing out of my comfort zone, I have no doubt opened a can of worms.  But as is always pointed out to me by bloggy friends, there is no obligation to read.  You never know, I may soon become like the lovely nechtan who is also in my blog roll who has an amazing talent for spilling out the contents of his intelligent mind with an honesty that I can only admire.

Me I'm still me sitting here blogging only really being brave enough to hint at my life.  Good job too as there is a whole lot more going on than even I know in my head.  You see to open it up and really go there may bring up answers I don't like.  So instead for the moment the next few posts are probably going to be mundane.  Just how I like it?

Sick Dog......

What can I say our beautiful family dog is very very sick.

No Posts because we are all crying.

He lost the sight in one eye overnight.

Glaucoma

Pressure raised in other eye.

I am devasted.

Its all about me....

My mind is full to overflowing with 'stuff'.

My body wracked with pain.

On order is a new knee brace, the hospital ordering in.  Being short with chicken legs requires a wait.  Old knee brace in the bin.  A shiny new hinged one soon to arrive. The bionic woman, that's me.  I am not sure why, when both knees should be looked at why they can only do one at a time but I keep very quiet in appointments lately. To save my sanity. 

Truthfully, whenever I feel 'this way', my thoughts turn to moving.  Perhaps if we move, the house would be tidy, I wouldn't hurt, money worries would disappear. bla bla.  We haven't moved for 17 years.  So perhaps its time I took action.  I am not so naive that all the crap would go away but perhaps it is time for a change. 

As my youngest turned 18, I have had a mini mid life crisis.  Why am I here? What have I ever achieved in my life?  You know the type of stuff.  46, no career.  Disability stares me in the face with no answers.

So again I look to the small things for solace.  Little by little I put my brain back together to help ease my troubled mind.

Should it have to take an earthquake...

I woke up this morning and everything in my world was good.  We went for the most outstanding lunch to add to the celebrations for son's 18th Birthday.  He had already done the clubbing bit...  We all smiled.  We returned home and I slept for a little while.  I woke and had a boiled egg with soldier's yum....  I watched a little TV and thought I would catch up on my emails.

A good friend emigrated to New Zealand a while back.  I could not believe what I read in her mail. Which was basically a personal account of this....

http://www.bbc.co.uk/news/world

Fortunately, she explained, her house wobbles, apart from the fact that the interior of the house looked as though they had been burgled, had no electricity, no water etc., none of the family thankfully had received personal injury.  She was nervous of aftershocks.

The email reminded me that I miss this friend.  One reason would be is that she is always thoughtful towards others.  The moment she realised that here in the UK we would be receiving breaking news of the earthquake she was mindful that we would all want to know that she and the family were safe.

Sometimes I am reminded that whilst my life goes on in its own small way.  All over the world families and their friend's are affected by personal tragedy, natural disasters, war, manmade disasters, and the rest. 

Today I was reminded that all over the world families and their friend's are lucky as well.  Lucky to be alive.

It shouldn't take an earthquake to remind me that I too am lucky.  

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.

Life

Life is

  getting in the way of blogging

  reading blogs

  commenting 

I hope to be back when I can and in the meantime.  I miss you all. Am thinking of you.  Care about you bloggy friends so much.  But I wouldn't be being honest if I didn't write this.

Pop over to benefitscroungingscum who wrote a post without the swearing and the vitriol about living with EDS and gp's/consultants etc. so much more eloquently put than I did latterly.  I am too tired to put the link I am afraid.

To Veronica xoxoxo

Kim @ frogpondsrock  - thank you for understanding

Geri attric - your last comment just broke my heart on your behalf and you are right so right

Steph - hang on in there I am thinking of you

i'm confused - Em hun always will be there for you - you know how to contact me if you need to

BG xoxoxox no more words needed i think

ms friends - especially YOU - you have been on my mind and without having met her I will never ever forget Nicole either and my candle store is still going strong for you.

Dysautonomia - you will always make me laugh, make me think and my heart will always go out to you - thank you so much for understanding my blog especially when I talk shite!  Always look forward to Fridays but don't feel obliged to stick to funny Fridays if you don't want to.

To anyone who reads but doesn't comment thank you for stopping by. Although i think bearing in mind I don't have a stats thingy that those of you who do stop by just about make up my whole reading bloggy people.

I am sure there are more people I should thank but I can either remember names specifically or conditions or blogs names not all at the same time. (no surprise there then)

I will be back - I feel guilty for not supporting those whom have always been there for me but I just can't blog right now and not even able to blog why.

I hope you understand and I will be back I hope..

Ciao for now.

ps Nechtan - you are in my thoughts too but don't have the words.  

if any of you need need to talk to me and have my email address please don't hesitate to contact me via email.  To those of you who don't have my email if you want to you can contact bloggy friends who have it and they I am sure I hope won't mind emailing me to forward your stuff to me.

Over and out for now.

with love

mexoxoxox

Physician Heal Thyself - warning strong language

Well saw another Consultant today who knew Jackshit about EDS.  I am never ever again seeing a Consultant for anything.  I am pissed off and upset.

So if you are a Consultant and reading this which I doubt very much as most have no interest whatsoever in Ehlers Danlos I suggest you stop reading right now as I am about to vent my spleen big time.

If you are a consultant who reads in their patient list that they are about to see a patient DIAGNOSED with Ehlers Danlos Hypermobility Type (formerly k/a Type III)....

• Please BOTHER to research (even a little) on the condition so that you don't sound like a complete arse.
• If you had done this you would KNOW that patients with the condition have great difficulty with efficacy with local anaesthesia.
• DO NOT laugh with derision at this fact.
• Because of arseholes like you (& I have had the pleasure of meeting two of you in the past week.  Patients like me are treated as though they make this fact up.
• It is in fact part of the diagnostic criteria
• AND in actual fact if you bothered you would know that people like me have often suffered unnecessary pain, embarrassment and been labelled as hysterics when administered local anaesthesia.
• It is a medical FACT that we don't respond to local anaesthetic.
• It is not funny.
• It would take a few moments of your time to look up this condition and yes I know its rare and not your speciality.
• This being the case you would be INFORMED when dealing with me that you look stupid when you don't know that for whatever reason it is now called Ehlers Danlos Hypermobility Type (formerly k/a Type III)  I am right on this fact not WRONG.
• If you yank the joints of a patient around with EDS it is likely that you will HURT them causing ongoing pain.
• Subluxation and dislocations occur easily.  So when you yank my foot around it puts my fucking hip out.  Arsehole.
• LISTEN.  Its not rocket science.
• It costs nothing to be polite.
• Arrogance is not a fucking virtue.
• If you don't know ASK.
• Just because its not your speciality it does not help the self esteem of the EDS patients to be talked to as though it is a made up condition.
• There is no loss of face to give a few moments of your time to familiarise yourself with the condition.
• When a patient has been DIAGNOSED it is rude to say - that you didn't bother to check for the EDS whilst examining.  I would imagine and forgive me here if I am wrong that is because you wouldn't know HOW to anyway.
• I expect a few ehlers danlos patients have gone undiagnosed because they have come to you with symptoms which mimic other conditions.  Only to have a letter sent to their GP stating that there is nothing wrong with them.
• This lack of knowledge means no doubt that patients with the condition are left to cope alone labelled as hypochondriac's or hysterics or mad.
• I do not appreciate being talked over, my pain and debilitation referred to as JUST EDS.
• It makes me cry when I get home to be told that the reason I drag my leg is just EDS.
• If you had it or a member of your family had it - you would not be so fucking arrogant to be so fucking flippant.  Arsehole.
• I understand it is a rare condition by the way and I get it that you don't give a shit.
• I also get it that you earn a considerable amount of money and if I earned as much as you I would not dare to speak to my 'clients' as though the condition which they have is a nothing in the grand scheme of things.
• I do take it personally when you say in a condensing fashion 'how long have you been unemployed'....
• Perhaps you would like to suggest a job which would be suitable eh matey?
• Perhaps if you had any fucking idea just how debilitating the condition was you wouldn't make such crass and frankly insulting remarks.
• For the record - I have worked but not for some time - why because I have unrelenting pain, daily subluxations,, dislocations plus the rest on a daily basis.
• Along with the condition comes osteoarthritis, osteoporosis and more.
• If you had FUCKING bothered to find this out before I entered the room, you would not have made yourself sound such a patronising, arrogant fucking arsehole.
• Thank you for treating me as a second class citizien.
• People like you are the reason I never ever want to see a Consultant again who has his head stuck so far up his arse.
• For the record I am pleased in your opinion I don't have anything wrong with me and its JUST EDS.
• This must mean that all EDS patients JUST  have a great life - its a fucking breeze mate.
• There is no point complaining because you probably wouldn't listen.
• Oh and by the way when someone a mere patient tries politely to explain some of the difficulties encountered with EDS please don't talk over that patient. Its rude.
• Querying diagnosis by the way made by other far more eminent professionals more qualified and so much more dignified in approach than you makes you look silly.
• Oh apologies for swearing its not like me BUT
• Once again I have been undermined by YOU a consultant who doesn't give a shit.
• So where does this leave me
• To crawl back under my rock from whence I came.
• Crying tears of frustration that once again I have had the misfortune to meet an ARSEHOLE like you.
• I have no doubt you shut my case file and sent it back to the archives feeling as though I was wasting your time BUT
• I didn't ASK for this referral by the way
• I do not make a habit of wasting the time and resources of the PCT
• Am I upset 
• YES YES YES
• because once again when just like your colleague last week you have treated me as though my condition is of no consequence.
• I will get over this but am I embittered YES
• WHY
• because I have put up with this type of attitude for too long.
• I am a nice person and do not deserve this shit.
• SO MR CONSULTANT if you ever ever see another patient with EDS please don't treat them like you did me.
• I have so much more to say and have only just hit the surface of the way I feel.
• I hope you enjoy your next game of Golf 
• I can't play Golf by the way due to my condition.
• Most of the time physically I can accomplish fuck all
• This does not make me unemployed it makes me disabled ARSEHOLE.
• So thanks for nothing you have only served to remind me why I cannot sleep the night before appointments with people like you.
• The nerves I feel at having to explain myself, whilst your eyes glaze over.
• I don't want your pity by the way BUT 
• I would appreciate some RESPECT for my condition
• I met one of your colleagues the other day - a dermatologist treating my daughter.  She understood so much about the condition. She offered empathy which costs nothing because she knew that it is a fucking horrible condition to have.  Nice lady by the way.
• You may say my dragging leg is JUST the EDS but it does not mean that just because in your opinion its not because of any neurological impairment that it is any less debilitating. than a leg dragging for any neurological reason.
• I do not consider myself LUCKY thanks.
• I am FUCKING unlucky frankly to have EDS. 

The above points are just some of the reasons I have lost faith in the medical profession.

* I wonder whether the reason I was asked about my employment status before anything else is a government directive.  I am a fucking housewife, crap at it, my house is a mess if that's what the current criteria on it is.  When you said does anyone else in your family 'think' they have something wrong with them and I answered - two have been DIAGNOSED with Juvenile Myoclonic Epilepsy and the other Ehlers Danlos. You raised your eyebrows.  Do you think I came to see you because I am a benefit fraudster sir because I am not.  I am disabled not with a touch of age related arthritis or a dickey back related to some minor issue I have EHLERS DANLOS.

I hope if you are a GP or a consultant reading this (no doubt you have made up your mind that I am mad so are already off laughing no doubt at my mad ramblings).  If you are about to see a patient who may have Ehlers Danlos or is already diagnosed please take a moment before you write potentially litigious untruth's on their medical records).

Please forgive my upset.  You see what I am suffering from is mind blowing frustration because whenever I see a medical professional who has no proper knowledge of Ehlers Danlos frankly I want to drink a bottle of Gin.  I won't because I am not an alcoholic.  Although it wouldn't surprise me frankly if someone like you had written that down surmising that I was drunk when I walked into the table, door or fell over nothing instead of understanding that people with Ehlers Danlos have poor proprioception.  Oh but I forgot silly me - I don't have it do I its all just a fucking figment of my imagination.

I was brought up well and told to mind my manners but you didn't so why should I - so frankly if you are one of the ignorant arsehole's I have had the pleasure of seeing this week courtesy of the NHS in the last week.

You can just Fuck Right Off.

I did not come to you expecting you to fill in any forms related to any benefits either.  I came because my GP referred me.  The only mistake I made was thinking you may know anything at all about Ehlers Danlos.

Physician Heal Thyself.

Camera up my nose & an Eco-Cabin

Posting as feel guilty about not doing so.

Saw a new and different consultant today, to be honest I didn't take to him that much.

He put a camera up my nose which shot down the back of my throat before I had time to say please be careful - he didn't take any time to explain what he was about to do and he passed wind at the same time.  Don't get me wrong I absolutely understand that farting is a natural process but please sir not right then when it made me want to laugh like a child whilst I had a wiggly camera up my nose.

I tried to explain about local anaesthesia to him as he said grommets for you then or would you prefer a hearing aid.  I tried really hard to say with my family history it will be grommets and a hearing aid.  I am nearly 46 and I have to have grommets.  I will say this in the bloggy world but not to too many people outside of it.  Children get grommets - not nearly menopausal women surely not.

He refused to take on board that there may be a problem with local anaesthetic on the grounds that it will be a cream on my ear drum.  Excuse me - could we have a conversation about this obviously not.  I needed reassurance on this front.  That it isn't the same local anaesthetic cream that I am allergic too that does not work anyway.  I have time anyway to research this so am not panicking too much.

I just get a bit pissed off when new Consultant's talk shite about EDS showing that they know absolutely nothing about it whatsoever.  Never mind I have time on my side.  Good, that will give me sufficient time to talk myself out of the whole thing then then spouse will talk me round.  I am however NOT having anyone pierce my eardrum with anything if there is any doubt whatsoever that the cream won't work.  Sorry but too many bad experiences with well meaning health professionals who have told me that it won't hurt when it does means I am stubborn on this factor.  So I will require gold plated evidence that all will be fine and then I will co-operate.

I am not pain adverse afterall I have spent all my life making an in depth study of it.   I am not a whinge bucket when it comes to it. In fact I am pretty stoic.  I just don't fancy my eardrum being pierced without it not hurting - having suffered multiple perforations and know how painful it is willingly have it happen followed by a thingy being inserted is not my idea of fun.

The weather is good.  So that's good.  I am warm not cold and that makes me happy.  Outside has been hot so I have been shade seeking and am becoming expert at this.  Years ago I adored the sun, nowadays we have a tumultuous affair.  You know the type of thing love/hate blah blah

 Husband & I are going to stay in an eco cabin designed for campers who don't like to get wet and also is on a fully disabled access site which is adult free. (Cabins have larch exterior and sturdy canvas canopy). Now don't get me wrong I love kids but we are not ever without them so I am looking forward to going camping without getting wet and without other people's kids around.  Its not booked for yet but I am excited as its for three days only - I know but I miss my pets.  On my birthday and a day later our wedding anniversary.  Also its at the base of Glastonbury Tor glastonburytor.org.uk (no obligation to click on link unless one is interested in tales of historically important mythical places) so am even more pleased as apart from Glastonbury Tor its a lovely flat plain.  I like flat these days - I know I don't walk far but I do like a campsite that is not on a terrace where one gets to visit one's fellow campers in the middle of the night because of the lay of the land! Just so you know we haven't booked for the legendary festival having done that thing many many years ago more than once and despite the fact that there are many many middle aged hippies who do still go I don't intend to be one of them, preferring instead to have hazy memories of it that I can wrap up in my mind as much more laid back and happy clappy than they actually were!

I know I know its not real camping as it has electricity and a kettle but to me with me 'ol joints it means I get to feel as though I have been camping without the agony.  I am very very excited and for the next few weeks am going to drive spouse mad with my all things camping conversation.  He can fish and I can pretend to but read and we will be happy campers indeedy.  It isn't either very ecological friendly due to kettle etc of which I am guiltily aware but it is an eco cabin!  Which is better than not.  The site has the David Bellamy award for conservation as well for its tree planting and re-cycling so that makes me feel a little bit less guilty.

The only thing I know I will do is fall off the wooden platform but I won't mind I fall over everything at home as well.  Whilst the site is fully disabled friendly they obviously forgot about a ramp on these eco cabins - I don't mind though as I will write a polite note after we have gone thanking them for the lovely home made cakes and organic meat from the farm shop and just mention the falling off the thing thing.  Afterall we are supposed to be camping and tents don't have ramps do they.

Photo's blurred apologies but I didn't take them as we haven't been yet
!

A King Size Bed! 
My mother said it looks clean, my guess is this is polite for basic.....

I am off to cuddle my kitten and to sleep hopefully.

Happy Camping.