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Why?

Why?

I can't bear it.

My beautiful daughter spoke with me today.  She is finding coping with EDS really really really hard.  I am so so angry with our gp of 20 plus years.  She finally went to him with a form asking for support for her application for a disabled parking badge.  At the same time he increased her prescription for Tramadol and said hydrotherapy would help her relax. RELAX - I am so effing angry.  I thought these days accessibility for the disabled was important - so he obviously cares nothing that when she finishes an afternoon's work she walks painfully and shedding tears because of it.  The car park on a dark, cold winter's evening may as well be Everest.  She arrived home and collapsed after taking an hour to walk the distance that an able bodied person would take approximately 10 minutes.  Tears of pain and frustration, legs of jelly, neck bent, stuck, burning nerve pain, a kneecap sideways, limping so heavily, muscles shuddering with spasms so severe its visible to the naked eye, there's more but I can't type it for tears - she is 19 years old.

I hate him for this denial.  This parking permit would mean so so so much.  Bastard - he has let the family down.  I want to make an appointment to say how I feel.  Other half feels I should let it go.  Any ideas on whether I should make this appointment?

She fights the EDS with tenacity and I am proud.  So for her to ask for this is a big deal.  He refused on the grounds that he didn't think it was time to go down 'that route' and that the rules have changed and because she can walk more than 50 metres she does not qualify.  I am completely incensed with him.  I thought he understood.  She is already down 'that route' in terms of disability actually.  Its just plain wrong frankly - I want her to apply and appeal agaisnt his lack of support - she says she has run out of fight.  We will ask the Professor in January.  Why such a rigid rule - I parked behind an eighty year old last week who told her friend that she had lied about the pain in her hip to get her badge.  She sauntered off down the road in glee. 

She says would it be better if she just gave up, got in a wheelchair and never got back out.  Her EDS is so bad this may happen anyway.  Because she fights, he has in a single appointment made life really really really much harder for her than it already is.  I feel stupid because she asked my opinion and I was so sure he would be supportive.

It just goes to show that one can never ever trust medical professionals to do the right thing.  In one moment he denied her something that would actually make so much difference.  She already misses out on so much - her uni friends are out clubbing.  She is too tired and in too much pain to participate on the fun side of uni. She cried today and talked - she is an intelligent, articulate young woman and stated that she is realising she is so debilitated by this condition that the reality of ever being able to work and use her degree if she manages to complete it because she is surrounded by people because of their stupid effing rules make everyday life so much harder for her.  She said she feels like a very old woman.

I want to take her in my arms and tell her everything will be allright.  It won't though will it.  Ehlers Danlos is a cruel condition but the system that denies a young woman fighting every step of the way something as simple as a disabled parking permit is the cruelist by far.

I want to cry but I can't for my heart has turned to stone. 

Today I hate EDS, I hate myself for passing it on, I hate to see my daughter treated so unfairly.

To our Gp - thanks for absolutely nothing.

* To those who say why doesn't she apply for dla - she is too scared of a system that she has seen me fight through to even go there.  It looks like the gp who I had thought understood wouldn't even support the application anyway should she change her mind. If she could pluck up the courage to apply I have no doubt she would qualify for the disabled parking permit on the mobility component.

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).

Chiari Malformation associated with EDS in the UK?

I found the link below whilst thinking of how I can possibly get someone to take a member of my family's severe neck issues seriously.  Apart from the obvious & repetitive reply, which is EDS is a painful condition etc..

I find it fascinating that in the UK Chiari is rarely mentioned in association with EDS, yet in the US I increasingly find more and more blogs with people diagnosed with EDS being treated for symptoms associated with Chiari.  I don't know why this condition is not really discussed even by the professionals renowned for their knowledge of EDS in the UK.

It seems many symptoms including POTS, swallowing difficulties, ear problems and more are associated.  I find the reading of  the surgery for this condition really pretty scary.   I have read recently of some sort of scandal associated with a doctor there who treats Chiari EDS patients?

There is a Chiari Institute in the US which it seems on reading blogs patients travel thousands of miles to for help.

I am left confused really about the whole thing  because in the UK mention the word Chiari to a medical professional & there is a stony silence.  Please don't misunderstand me I don't yearn to have this or think I have it already.  Its a complex medical condition and to be honest much of it mystifies me.  But I do wonder why my (& other family members with EDS) neck and associated issues have never been explained or in fact treated, when in the US it seems common place that if you have EDS there is a high probability that you also have Chiari Symptoms.

http://www.nwrei.org/downloads/Education/Francomano.pdf

A Reminder....

I have in my reader 5minutesforspecialneeds a blog I read daily.  Initially I found this community blog via  mythreeringcircus  a blog beautifully written, which makes me both laugh & cry, often in the same post.  I have Veronica to thank  at somedaywewillsleep a fellow EDSer for her blog roll otherwise I would never have had the opportunity to read these blogs written from the otherside of the world.     

I was so saddened to read  that Anissa has suffered a massive stroke..  5 minutes for special needs is a site which I visit to remind me that remaining positive in adversity is the single most important factor when one is having a day that seems impossible to get through.  Put simply it is inspiring as are the blogs associated with it.  I have dedicated this post to Anissa & her family.  I know that I do not know them personally but through the internet I have been able to follow their story.

Anissa fought her daughter’s cancer at Hope4Peyton, & she celebrates their cancer-free life at Free Anissa & provides the blogosphere with laughter at Aiming Low.  Anissa has worked I read at  5minutesforspecial needs for a long time behind the scenes.

I don't know whether when I say I am thinking of Anissa constitutes as prayer & that all the individuals collectively thinking of Alissa & her family will help, I can only hope with all my heart that it will.  So if you are reading this post, please could you spare a moment to send healing thoughts for Alissa &her family.

So as I sit here tonight it seems to me that any small troubles I have are put in perspective.

Postural Orthostatic Tachycardia

A link to some research on POTS  treatment

For more in depth information on this often debilitating condition pay a visit to http://dinet.org/

At the moment I am getting strange sensations on my scalp, which come from nowhere.  Earlier we were sitting watching tv when I felt as though I was getting mini electric shocks/tingling under the skin on my scalp.  I tried ignoring it until husband asked if my eye was ok as that was drooping.  How nice it had been before this, a rare moment on our own in front of a roaring fire.   I have been having this on and off for a while.  It does seem to coincide with a flare of PHN, so I guess nerve endings.  Sometimes it occurs when I bend my neck.  No matter.

The days I like were just like today.  A lazy Sunday.

guilty pleasure

I have restricted access to the internet at the moment.

It feels strange when I look in my reader and see so much happens in such a short amount of time. 

To alice @ i'm confused - I am hoping your neck is improving.

If I am not commenting on a blog which normally I do - its because I need a new laptop & rely at present on daughter's who is working extremely hard for uni.  I am so very very proud of her, EDS for her is much worse than mine at the same age.  I feel helpless when she suffers so much pain - she says the only person she can really talk to about it is me as she knows I understand.  I do and because of this some days I feel angry toward some people in our lives who seem to make a very good job of denial of this debilitating and very real condition.  It must seem on reading this blog that it is the whole focus in our lives - this is not true.  I write of it here as an outlet.  We send each other texts some of which go like this -

how is your day?

EDS crap?

take your time, I understand.

               These can be from either of us - the same applies.

In the meantime -

   I am thinking thoughts like this - my godaughter is presently very very unhappy with good reason.  When one signs up for the responsibility of the role - it is impossible to imagine that a parent would die.  This happened when she was four years old now 24..   After a long talk with my conscience I decided that in the abscence of one parent I had to speak out.    I wish with all my heart that I could turn back time.  I can't.  I am not particularly religious - I did make a promise and will keep it.  I just wish the other two godparents had kept theirs - we could share the task.  This godaughter of mine whom I held in my arms when she was under an hour old, holds a place in my heart forever.  So if you are asked to be a godparent - make sure if required you can do more than send a birthday card. 

Having being unwell for a ridiculously long time I am beginning to unwrap myself from the cocoon.  I find myself in the most untidy house I have had in a very long time. I am noticing I am pacing better than I did as more than a little overdoing renders me useless to all.  I have moved on from soup soup soup to advocado - a positive step forward.  Figs seemed tasty today, husband smiled as I carefully wrapped some parma ham around three ate two, moved on to a warming mug of ovaltine and without realising it ate three fig roll biscuits.  I wonder what these cravings say about what my body needs right now.  I know I am feeling better as silly things are making me laugh again.  Especially as I have just read that paragraph through and wondered if my craving for figs suggests constipation - at the minute this is not the case but cannot remember what vitamins are in figs - parma ham I have no doubt is just salt!

Next week return to gp for results of blood tests which were taken by the trusted phlebotomist (sp) at surgery who uses paediatric needles and is the only person who doesn't leave me battered and bruised.  The sticky pads used for the heart trace however left squarish red marks dotted all over which are still there.   I actually think that when I return next week all will be well with all of the results.  EDS patients can present as extremely poorly when their immune system has taken a battering and gp's not familiar with the condition may panic a little.  Reminding me of a well known character's words, in an old sitcom (truly showing my age) called Dad's Army, a  series following the antics of the Home Front. 

                    'Don't panic Mr Mannering, don't panic'

To those whose blogs I read that may need a virtual hand to hold - mine is there.  If you have a tale to tell - I will read it.   I will smile at your anecdotes.  Try your recipes.  I will feel genuinely happy when you are happy and the rest.  In return I only ask that you keep on blogging.  So that when I manage to get on line - my reader is full to bursting. 

Blogging is my guilty pleasure - Whats yours?

The Ten Minute Rule & other completely random blah.....

I wrote a comment  here in response to an excellent post written on gp's.

(Edited to take away my copied comment as I get very confused about copyright and permissions etc)  Like (poor english I know don't you just love it) am I allowed to copy my comment on a blog or does the comment become the property of the author because its on their blog. 

Basically if you can't be bothered to read this post and that one as well it was discussing GP's these days.  It struck a chord with me because I often fondly remember my childhood gp who would hold an outreach surgery in the local pub.  These days health and safety and safeguarding laws etc would apply but that is a whole other post.  Anyhow, my comment basically said I have a fear of the new gp and prefer my 'own' who knows me. 


So I retract my thoughts on new gp's because -

The 'stranger doctor' was kind, empathetic and gave me soooo much time that I felt I should remind him that there are large notices everywhere in the waiting room

stating this:- please note that all appointments last 10 minutes only - If you have a complex problem you may be required to make a further  appointment.  This is practice policy. 


I feel I will soon be feeling better - more antiobiotics.  This is my theory and I am sticking to it.



I am ignoring the out of control heart beat and various boring symptoms.  I agreed to go have a plethora of blood tests and ECG.  I always get a galloping heart rate when unwell so for me its not unusual.  I am not sure why I am dehydrated when I am drinking loads and also ignored anything really he said that I didn't like about my heart etc.  Like this... bearing in mind I was concentrating on not listening properly - 'have you ever been diagnosed with a heart defect'  the rest I pretty much tuned out to... I have developed this as a coping strategy in dealing with EDS and I like it. 


Husband waiting in car said he had to leave the waiting room as the tapping feet of poorly people blaming the short woman who had disappeared into the consulting rooms it seemed never to return - were staring at him and sighing the type of sighs that insinuated it must be his fault that I had still not returned 45 minutes later!  


Anyway thats the boring boring boring I am still sick as an f;..ing pig part 


I am determined to do some knitting so it looks as though tomorrow I will get knitting rage - organising the large unruly bag of various unfinished 'stuff' and intertwined balls of wool which have somehow argued in my abscence and now resemble a knitting nightmare.  I hope no avid knitters are reading this as I feel they may well be wincing.  I stuffed the large bag behind the sofa in the vein hope the wool would magically make up and be friends again.  however as I type it appears the knitting equivalent of spaghetti junction is erupting.  Actually I am beginning to think my dog may well have something to do with this mess as I have just spied a random ball of wooll in his bed humph... I think he knows I am talking about him now as his tail is wagging and I swear he is smiling.


I have in mind a couple of posts I may or may not make in the future at some point.  One is about MS, a while back I think I discussed briefly or it may just have been a thought - how having a rare condition like EDS make people's faces blank when mentioned and that sometimes I have a tiny urge just to lie and say I have MS... not because I am mad just so that I wouldn't have to have the boring EDS explanation talk which people don't generally understand anyhow.  


Some of the symptoms of MS can it seems to me mirror EDS.  I don't really know how to post about it for a few reasons - primarily I seriously don't want to offend anyone having the misfortune to suffer with the debilitating symptoms of MS and I want it to be a reasonably well thought out and possibly endeavour to make some sort of intelligent post.  Along with the secret envy I have at the support network - (UK) provided for those with MS which simply does not occur with EDS.  By support network I am talking NHS not internet support groups - for example I note my local hospital has an MS Clinic.  I am putting this here today in part to serve as a reminder to myself.


Another post I have in mind is still at the 'all in my head' stage - so again this is another reminder to myself.


When I am stressed/bored, sometimes - I find myself thinking/doing things which make me laugh ... today when I had waited an eternity and was 8th in the queue on the telephone to make a gp's appointment. I became aware I was getting irritated and wanted to ensure I was not rude to the poor receptionist when I finally got through to speak to a human being... So by way of stress busting I was busy having a one sided conversation with the recorded 'person' on the telephone who kept interuppting some god awful music to let me know how well I was doing in the queue and informing me of other services the practice offers.  I was taken aback when suddenly a real person started talking to me (bearing in mind I was in the middle of telling the recorded voice that - no I haven't had a holiday yet this year and if I had my choice I would be flying off to somewhere exotic for Xmas bla bla....


I accepted the appointment with the 'stranger gp' readily to avoid the embarrassment of explaining why I was talking to the recorded voice...  However the new gp had a surname which I found funny - I had better not say it here because thats not fair on him.Suffice to say that the receptionist probably thinks because I said the nature of my request for an appointment was personal (in part because I was going to the doctor because I flippin well needed a diagnosis for god's sake) and I sometimes think they ask out of sheer nosiness.  Combined with sniggering like a very immature teenager at the silly name and the ridiculous conversation I was having with the recorded voice - she no doubt thinks I was making an appointment to discuss my ongoing and obvious madness.  


When I relayed my silly little tale to my other half of my predicament, he sighed heavily and wrly suggested that he thought my sense of humour was a little warped because the name only made him think of an eminent figure in the public eye; he also pointed out that the receptionist wouldn't have known I was talking to the 'voice' which I think is wrong because I was having such an animated albeit somewhat one sided conversation. I didn't realise the receptionists voice and the recorded voice were different.  On thinking about this further I think in fact they were one and the same just the former one ' she had made earlier'.  

Because we have been married a long time and therefore prefer these days to avoid a potential argument, I ignored the urge to tell him he was being pedantic.  Of which I was very proud of myself indeed.  Also to be fair he was the kindest nicest most patient husband in the whole world this weekend when I was not at my best and I felt he deserved a little slack.


So I am finishing this post now thinking this - I must not say to teenage son who kindly hung some new tab top curtains (edited to add - actually they are not new a relative moved house and was throwing them away)  in the living room because I am too short and other EDS stuff.... why oh why have you hung them back to front or inside out whatever the words are for what he has done.  Instead I will do that think of something funny thing instead........    I fear however on my track record to date this may backfire on me!

Displacement Activity

Oh here goes.

I have been unable to post partly due to illness and also it seems I am suffering from a severe case of blog writers block!

Some things I have wanted to write I don't feel I should because they are to do with extended family members and although they will probably never read this blog anyway - its not fair that I should air my grievances publicly.  Or should I say I would like to but morally feel its not a good move. So if I say - I have cried in sheer frustration, feel misunderstood and ill treated as a human being perhaps that will suffice.  In reality I would like to vent my spleen and tell all as I feel my fellow bloggers would understand why I feel so aggrieved.  But some things are better left unsaid I guess?

On life - one reason I haven't blogged is because I literally haven't had very much to say.  Yes because I have been 'proper' poorly (aside from the usual EDS) and therefore have not been able to participate in the world for three weeks.  Hopefully when my new car eventually arrives I will venture out but it still doesn't address the fact that I don't feel I do enough in my life anyhow.

I don't just have writers block, I have knitting block and it seems life block.  Having EDS it seems to me minimilises my world.  As BG blah@benefitscroungingscum  mentioned recently in her blog - I also don't seem to achieve much of a day.  I talk a lot to my kids and as they are teenagers that is good I guess.  But I don't really socialise apart from the two good friends who always come and see me.

As a couple my other half and I seem to have got into the habit of not socialising at all, for years we have been happy just with each others company but I do wonder if this is healthy.  Many of our friends from years ago seem not to have the lifestyle we agree with anymore (how boring) and yet a bit of me fears I may possibly suffer with a minor form of social phobia.  Is it ok that I really don't mind enough that we don't socialise or that my life is not full of hobbies or activies.  I am not sure.

So by way of displacement activity instead of blogging I have been adding more blogs to my reader and therefore on those that I comment have been commenting on those. In saying that I should update my blogroll but can't quite remember how. I hope I am not perceived as some kind of cyber stalker which truly I am not. I also stumble across bloggers commenting on these blogs whose blogs I also read (if that makes sense but in a way its reassuring).

There are a couple of people whose blogs I read that are very very down right now and it makes me wish I lived in numerous countries where I could be a proper friend who could provide practical help and TLC.  You see at the present time if it weren't for my blogging world I think I would rarely speak to anyone outside of my immediate family.

I am not sure that this is a post of any note but it has broken the silence.

So if you are reading this I would like to say -  I probably read your blog and would like to thank everyone whose blogs I read for helping me out.  Sharing a little of your world helps me.  So please keep blogging.  Oh and if I do something vaguely interesting I will definitely post it here for who else would I have to tell!!  Spelling mistakes 'n all as my spell check has disappeared.

sick

Thats me - I have pleurisy, drowning. 

Today I have read The Curious Incident Of The Dog in the Night-Time (Mara Haddon). An extraordinary read.  Apart from being an exceptional read I particularly liked the font chosen for print. 

Because I have been in bed all day I have been able to read, which is something I normally find painful because my rubbish hands can no longer hold a book.  I absolutely abhor book holders they are designed for those who sit at tables and are definately not designed for the hypermobile who find it hard to sit in one position for any length of time.  Today I was suitably sick that bed was where I needed to be and therefore books were able to be propped up with pillows.

So if i am not about for a few days I will be concentrating on feeling better, much better than I feel right now!

One of those Sunday Night posts......

We had a power cut last night.  Three hours later the power returned.   I enjoyed the peace.
(edited to add - appalling laid out post - something went a little wrong tonight - note to self, try harder next time)

My hand which I broke a year ago is absolutely driving me mad.  My occupational therapist tells me I should see the rheumatologist to find out why it is hurting sooooooooo much.  This referral will take ages.  To me it just feel all broken again. I can't knit either, not just the normal type of can't knit which happily translates into I am diabolical at knitting, I can't hold the needles etc.

I think it would be cheaper for the NHS to get it x-rayed.  Bearing in mind I put up with physical pain this is on the pissing me off and keeping me awake and can't use type of pain.  Have to type with thumb on right hand.  On the bright side of life it has taken my thoughts away from my knee which at present I cannot weight bear on.

It doesn't always work by the way making sure one's teenager has a mobile phone.  In order to keep in contact they actually have to answer it!  Enough said.

I am at that time of year when I start putting my mind to Christmas. (BG if you are reading this please don't freak out & shout at me) This involves worrying about affording it.  I like the tree part and decoration of, something I have to watch the family do nowadays but being the control freak I am, I am very particular about where they go.  Some are treasured and the kids nearly grown up offspring groan when they open carefully wrapped decorations they made in infant school which absolutely must be hung in 'just' the right place. 

Years ago when I got out more, I would fill the house with living decorations, greenery, some sprayed gold, with real berries & old man's beard - the real thing.  This was collected on chilly walks with children in mittens & woolly hats helping. Stamping cold toes on frosty grass glistening with sharp December sunshine & stopping for hot chocolate breaks from steaming flasks.  We would jam interesting 'sticks' into bin liners, which would always rip because of the holly.  They would then dip in glue & stick white crumpled tiny paper balls on to resemble snow... this greenery was then hung around pictures, wrapped around bannisters & we would have a proper 'Victorian' stylee Christmas.

My guess is that my penchant now for glitz & fizz is a way of cheering me up for loss of mobility once had, so by way of overcompensation I have gone over to the other side - I care not one iota, better than getting all morose about that which I used to be able to do.   Obviously I do care quite a lot actually but I don't let anyone here know that I miss all that, I am a country girl afterall.  So when the day draws nearer do not be surprised if I get all nostalgic, of Christmass' Past. 

I think its the fact that I would love to be the generous..(I am back to present giving now) aunt.. godmother.... daughter.... wife.... etc. but money dictates a budget.  So I spend a good deal of time trying to think of appropriate presents.  I like to think I am thoughtful but do you know what I would absolutely prefer to be is ridiculously generous.  I know, I know the origins of it all, but its cruel I think to deny some sparkle & fun & the older I get I am unashamed of this fact.


So for this week at least I will be ignoring that nagging in my mind. Afterall as I have been doing this for years, Christmas will come & go and no amount of me trying to organise it early will make one iota of difference.  Because in reality I am better at last minute shopping relying on instinct & time constraints than planning and buying a few presents a month.  I wish I could be like that but I can't.  So for now, that mild Christmas angst is pushed aside but it will linger occassionally in my mind to remind me again that I should be more boring organised. Anyway its not cold enough for socks yet so I have absolutely nothing to worry about.


To add, I am an old meanie absolutely brilliant at recycling & other half will groan when I ask him to get the Xmas Box down from the loft with beautiful bags and paper which have been doing the rounds in our family for years. No one in our family is ever surprised when they receive their present in a bag which they have seen for years previously.  I have favourites which special people get, in fact I think I care a lot about the presentation of a present.  I add each year to this hoarde and start to panic if a well meaning relative starts to collect the mess of the wrapping paper etc. 

Fortunately my mother understands my obsession well as we share it, she silently does the collecting before I start hyperventilating & we share the procedes equally.  I do add each year, this year some will have the addition of tiny silver reindeer bells & beautiful little felt bags with chequered red & white reindeers on (re-cycled by the way) from my sisters beautiful table setting last year where each guest had a mini present beside their table setting. Inside these mini bags, which will be inside the other bags, I have yet to decide what to include but they are beautiful.  Now some may think this is cheesy - I don't care.  I used to worry a lot about what people thought but these days if its not harming anyone I just don't anymore.

I wish I had a talent like kim at frogpondsrock then I could make personalised ceramics; the most beautiful pottery pieces to give.  Kim I wish you had an internet shop but am sure your beautiful work would come under the expensive label & am not sure how practical it would be to get them shipped from Tasmania to the UK!

There is more a lot more but if I wrote all that I think my labels would include possibly mad with EDS!  So I stick to the safe thoughts & ramblings of the mind of someone with an invisible illness who should probably get out more......

Prattled on about nothing again tonight.  Its a Sunday thing I think.

(edited to add sorry for long paragraphs - too tired now to edit)

EDS Kids & Eyes

Just popped into to give this link (I know some of you have been there already!)

http://theeyedocblog.com/2009/09/02/ehlers-danlos-pediatrician-guide/#comment-720

PMT & Me

Well having posted on Veronica's blog @ sleeplessnights, that I would be posting on this here I am.

The thing is I haven't actually had a period for six months or so now. No I am not pregnant. I am forty five.

The link below in red is to an extremely well written article by Professor Bird a specialist in the UK with vast knowledge of Ehlers Danlos. It is on the marfan friends forum although is available also on various other forums if you join them and available in hard copy in the UK. I don't really like suggesting that one should use any forum although I am not quite sure why, maybe because what suits one may not another I guess. Anyway, if you have a few moments, have EDS then you may find this article of interest.

EDS Hormones

I come from a family with a history of early menopause and I spoke briefly on the phone to my GP recently who suggested I come in and have 'the' blood test. The one which will let me know whether I am menopausal. I should go get it done I guess. My excuse is that I am currently carless! I am not scared in anyway of the answer, my guess is I am in part simply because I have so many of the symptoms that I don't really need a blood test to tell me. My apathy in getting it done is probably part of it all!

I can no longer blame chronic behaviour though on PMT! My other half is perplexed it seems. My bendy joints are more painful now all the time and not more so pre-menstrually. I am grumpy and sometimes quite scary I think in my hormonal stupor, so when I can be bothered I shall go & get 'the' test. I'll let you know the outcome!

Anyone with EDS will understand that pre-menstrually bendy joints are very much more prone to the pitfalls of living with the condition than at other times (which by the way is bad enough) So because of hormones pre-menstrually we complain of pain a lot, we dislocate/sublucate more and we trip, fall & generally cannot co-ordinate our limbs as our propriproception (sp) worsens. Ideally it would be best at these times if we languished in bed (as women of a certain class were able to in times of old) having general attacks of the vapours! It would certainly mean that our injuries would be less & our mood improved possibly with regular doses of laudanum (sp again). However, we now know that lying in bed makes collagen deficient muscles - wither & become even less able to support our decrepit joints.

So next time you see a women staggering around, possibly wailing in pain, shouting at all 'n sundry. Swathed in protective supports. With bruises suggesting she may have been in a drunken brawl. Do not jump to the conclusion that she is a drunk. She may well have EDS & PMT.

Or it may be me - peri-menopausal with EDS! Until I have 'the' test that is the label for me.

Inside my Head

This week I have felt odd inside my head. Too many negative thoughts for my liking. I am not normally prone to deep contemplation perhaps the planets are doing something or other. I feel the need for change, to break free, how I know not how. Perhaps this is a mid life crisis. Or perhaps I deliberately do not let my mind wander like this lest I become a disgruntled middle aged woman. I want to talk to other half about where our lives our going and what our future holds but am not sure i want the conversation as i feel I know how it will go. My guess is our future is predictable.

Possibly I am bored, because of the EDS and all the other stuff that goes with it I feel backed into a corner. I wonder as I look back what I have actually achieved and look forward and can see that possibly I kid myself a lot. Actually I feel as though I have become a bore, the EDS bores me, all of it... Osteoarthritis, osteoporosis, post herpatic neuraliga of trimegal nerve (sp). I can't think of a way to climb out of it all. Each year I promise myself that perhaps I will go to college, do an open university course but I don't and am not sure why. Actually I do, being in pain 24/7 means I find life a bit of a struggle in reality and its actually pretty exhausting. Having the time for my kids who both still live at home, even though they are grown (17 & 19) and all that jazz is about as much as I can do most of the time. But I know in the next five years or so or sooner they will leave home and I will be here still. Some would say I lack motivation they can say what they like frankly, living with EDS is tough sometimes and at the minute its tough.

I listened to a radio programme yesterday where severely disabled people go sailing competitive sailing and once person who is paralysed and uses only their tongue - sails competitively. I think this is another thing that made me feel like a pile of crap. I felt guilty, lazy and again sorry for myself. Why can't I just get over myself....

I have been married 20 years and was chatting away earlier on to husband who was in reality reading the paper. He was tired as had been working all day and he wasn't listening he has developed the knack of making appropriate noises at correct intervals to give the impression that he is. I started to actually say out loud - god am I boring you rigid, I bet after all these years you must look at me and think for ****ks sake shut up. He didn't obviously because he was doing that 'knack' think mmmmmmmmmm......

I am aware that I am feeling sorry for myself and for some reason I am indulging this for once. It means I have to think about stuff and to be honest right now I feel a bit resentful. At times like this other half should watch out, he should know by now that when I wear black leggings and biker boots all is not well. But I wonder whether he would notice frankly if I came in stark naked. Now don't get all worried and think oh god there's a divorce on the cards, I am in love with my husband and I think he still with me. But being married for a long time can mean that sometimes things get stale, perhaps its time I got my hair cut.

various nothings

I am trying to work out why some comments are published automatically and others seem to need my approval. Is this something that the author of the comments controls or me. So somewhat confused on that one!

It is exactly 3:48am as I write which I guess means I have an attack of insomnia. Which sometime happens bizarrely when I am overtired.

Yesterday I had the pleasure of being stuck in a lift oh yes I mean pleasure as was rescued by 7 burly firemen!!!! I would elaborate on the story but have rung friends and relatives with the excitement and detail, that I have albeit run out of the ins and the outs of it all. Not being over keen on lifts I am pleased to say I did not panic!!! So mega proud of myself. What is it about Firemen!! 2 Fire engines, sirens the lot. The only thing I will say is that my parent's will not be buying the apartment which we were viewing!!! I wonder why?

A lot has been going on in family life, most of which I can't write here as that would involve breaking confidences and I won't do that. I wanted to so much but sometimes its just not appropriate.

I enjoyed my week with the little man, who wanted to stay longer and my whole heart goes out to Veronica from Sleepless Nights who has young children. As a step grandmother with EDS a week with the little man was fantastic for so many reasons but I am absolutely and completely exhausted. As ever other half did not take time off so we were left to our own devices.

As I am carless at present in a way this meant we were free to just be us together in our little world of conversations. Some of which were enlightening. J is fascinated at the moment by the Police and wanted to know why he saw no Police whilst he stayed with us in the countryside. So we talked a lot about city life versus country life.

I am getting my car in apprx 10 weeks which is a long wait but worth it. A teeny weenie Peugeot automatic. As the children are all but grown and one of them drives the other just about to start learning I don't need a big car anyway. this is an automatic as the EDS prevents me from driving a manual. It will apparently do 60 miles to the thingy! Thank you to my parents for this gift words cannot describe how much their generosity means to me.

The wait apparently is the same for all new cars - that are small. I thought the recession meant that there were rows of hundreds of them waiting to be bought! My ancient car is to go for scrappage under the Government scheme so that means we were able to get £2000 off the price of Peugeot. Thank you parents thank you for the rest. I am unable to work and husband works hard hard hard we just cannot run to a new car and for me this will be a dream as it will not need an mot for three years!!!!!!!! I feel guilty really as I am completely motorway phobic and shhh don't tell anyone really do avoid large roundabouts. But I am determined to be a little more adventurous this time round. Husband drives a large 4 wheel Volvo which he needs for work purposes to keep equipment in and it serves well for longer journeys also as it is comfortable.

by way of confession i keep thinking I need a wheelchair - this is in the category of not discussing out loud with anyone apart from here obviously. I could not perambulate one myself due to shoulder and hand elbow issues so would need an electric one. My little car would probably not accommodate one of these. How do I tell husband I just don't think my legs can hold me up anymore. I have done well to keep on my feet with the EDS for 45 years but truly even parked in a disabled bay near the shop is agony these days. This is in the label - trying not to face up to reality, denial and lots of other stuff really. Along with rambling as i cannot sleep and there is no one awake to see me writing my blog. So I feel i can write this here and hopefully it won't be judgement day on the comment front.

I am admiring Veronica's eloquent posts and beautiful layout of photography although must be honest am finding the scrolling photo's a little confusing! I feel like a rubbish blogger in comparison to her wonderful words but I persevere, a word I taught J last week along with many others.

It has taken me ages to post this due to hands etc and loads of stops because of. Because I had bloggers block I felt I should just write even if it were nonsense of sorts to get me going again. I feel better for it!!

Nothing

No words I am afraid, I will be back when I have some!

The Internet Bully & A Request

(edited to add a request - could we all post at some point about Internet Bullies, pehaps some sort of public ousting would make them realise they are dispicable little people - In all honesty I am so pissed off about them that I think there should be a world anti-internet bully awareness week arghhhhhh)

Ok I am fed up of reading on other people's blogs that they are receiving comments which include, hurtful or filthy or negative statements. Who are the sad people who get some sort of warped pleasure from offending and upsetting thoroughly nice and genuine people.

There is a difference between an opinion and writing hurtful potentially slanderous comments. Or making childish pornographic references in response to a genuine post that are frankly unnecessary and offensive.

To me it is the equivalent of the worst kind of bullying, a faceless bully is the worst kind. Do they get some kind of pleasure out of this morally questionable behaviour. I don't care about the Internet bully at all, I don't care that they may have sad little lives with nothing better to do than trawl the net picking on completely genuine human beings.

I care about the human beings they pick on. I haven't in honesty read the comments to which the blogging community are referring - they have had to go to the trouble of reading this purile rubbish, deal with the emotional fallout and possibly wonder if they should apply comment moderation.

If all the blogs I read end up through necessity applying comment moderation it would be a sad day indeed. It would take out the spontaneity and real time beauty of the blogging world to which I am fairly new.

But I know this - if you are reading this and troll forums intentionally 'flaming' or comment on blogs with the intent to hurt, abuse or upset, ask yourself why you are doing it, what is your motivation, does it make you a better person, look to your conscience closely and if your conscience is clear then you blatantly need professional help.

I feel in a way that giving the time of day posting about the Internet bully is a little wrong perhaps because that is something they obviously want - attention. But do you know what I mentioned in another post latterly I can't abide a liar, I also cannot abide a BULLY.

I hope that someone is able to report the Internet bully to their service provider and get their accounts suspended. No doubt they could still go to the local library or Internet cafe but it would make it harder for them.

I know its not a perfect world but when plain nastiness pops up in my front room and stares me in the face via my computer screen I just wonder what has happened to mankind. I still believe that in the end there are more good people in the world than bad and that helps (I am not perfect at all and I don't think I would like to be either) but I just wish shitty nasty bullies would go make a blogging community for themselves where they could have a jolly old time to themselves being complete arseholes. I am sure there is a club or Internet forum for all sorts of stuff that I don't want anything to do with, that I find offensive etc. so go there comment bullies and leave the 'good' people alone - please.

I don't get many comments on the whole and the one's I do get I appreciate so much. I don't expect anyone to agree ever with anything I say and truly wouldn't be offended by any comment which said so. In 'real life' its good to talk but friend's talk and if they disagree even over a glass of wine, beer whatever they can generally agree to disagree, learn from the debate, respect an opinion but rarely would a good friend intentionally upset, berate or just behave like a complete shit. So to the internet bully or troll - I say this: Leave the decent bloggers alone, you are not welcome in a community which generally tries to support, understand and offer the hand of friendship.

Shit Happens

The past week has been diabolical frankly -

To Accident & Emergency at local hospital - thank you for being so kind, understanding and genuinely empathetic when I was in so much pain. No thanks to the receptionist at the doctors who said there were no appointments and a doctor would call me back if they could.

It is a surprise to me that severe pain can mimic apparently a heart attack, stroke, collapsed lung or DVT. If I could have spoken I would have let Registrar know that I didn't think any of the above were applicable. I had taken as much pain relief as is allowed by pain team and frankly could not stand the pain. Apparently severe pain can mean that you can't breathe. This was no panic attack. This was hectic. Being used to severe pain this one ranked 9/10 on the pain scales.

I don't cry ever with pain and this time I did, all night.... despite a combination of medications that would have had an elephant comatose. I contemplated calling an ambulance as I rocked and writhed and cried some more. This is not me, I manage my pain, I have been on a six week course to teach me how afterall. I have had years of experience, multi-disciplinary approaches to pain management incorporating pacing, relaxation etc..

On arrival at the hospital I bypassed the queues - the home made bandaged bloodied fingered, the swollen & painful broken ankles of the builders and footballers. The loud drunk in the corner whose rude interjections interrupted my daughter's quick synopsis of my medical predicament. I was whisked poste haste to the curtained cubicle to await my fate. I had had the forsight to take my repeat prescription green form as from previous experience the cocktail of meds I take has previously meant on the VERY few occasions I do go to hospital, that the attending doctor/consultant who has no knowledge of Ehlers Danlos immediately assumes I am a drug addict simply 'acting up'.

All appropriate medical tests later ruling out all above serious conditions and a quick heart trace, the most serene of registrars held my hand and explained that they felt that I had severely dislocated my shoulder/ribs/elbow/hips etc in my sleep probably the night before last but due to-the fact that I slide in and out at will with multi-directional instability I was suffering the after effect and my body had basically gone into shock resulting in such massive pain.

I am sure she said more - something about asking for an urgent referral to my rheumatologist, to assess also my worsening arthritis, osteoarthritis, osteoporosis bla bla and the drug i have just been given for the post herpatic neuraligia would gradually get into my system and start to help. She had gone to the trouble to read my notes and see that orthopedics have refused to do surgery because of the complexity of my EDS and said that she genuinely wished she could help and was so so sorry that her examinations had caused me any further pain.

I will never forget the look in her eyes of genuine pity. I am still not entirely sure I got the gist of what happened fully and may have missed out a salient point which would make the above list of predicaments make a little more sense. I was extremely sedated and in pain. She suggested along with all my other meds I doubled the oramorph and rode the storm.

So having ridden the storm I have come out the other side, with a family shaken by the worst 'flare' I have ever had. A dog who lovingly places his head gently agaisnt me as if to say 'tell me if it hurts' and I'll move.

Today I ventured out of the house with daughter to go see a car as mine is needing car heaven. I had thought all was going well until this happened -

left showroom in daughter's car -

she drove along the road -

went to a shop -

got out of car -

noticed I did not have the folder that I entered the car showroom with, this contained every important f======g document (s) I require that is (are) car related. (apologies for grammar lapse my brain is strained) Very distressed went back to showroom - car cleaner said he had noticed a folder on top of daughters car but as we were chatting thought when we got in car we would put it in said car.

I DID NOT DO THIS.

So I have been to the Police Station and reported lost/stolen every f -----ing document I need RIGHT NOW. To replace will take time and money and I am also suffering chronically from severe embarrassment for being such a complete nerd.

This week has been complete shit frankly. I am feeling completely and utterly sorry for myself and I am not going to apologise for it or pretend that life is better if I have a half glass full philosophy -

Tomorrow I guess is another day where I will emotionally, physically pull myself together but right now I am off to eat chocolate.

Verity & Probity

Being fairly new to the world of blogging I sometimes come across a new blog and wonder about the person behind the words. I suppose that's why I prefer to stick somewhat within my comfort zone. I am happy to have in my reader, those with a link to EDS & knitting and because I understand their need for anonymity a blogging doctor or associated professional.

I am however cautious about commenting and it takes me absolutely ages to make the first one on a blog new to me. Don't get me wrong, I do not spend hours on the Internet trawling blogs but for someone who like me who is often in pain it does serve as a welcome distraction. I find holding a book hard due to my bendy hands and where I used to be a prolific reader, I need to limit by way of boring sensible pacing for pain management, the amount of time I actually hold a book to read it. I know there are book holders etc. but I am clumsy by nature ..... bla bla. So before I go off on a tangent about book holders and the fact that there are very expensive ones out there that I could buy I will leave that explanation right there.

So when I comment on a blog I love it when it says 'comments are welcomed' it makes me feel more secure about the whole thing. I am learning something though about myself and that is this. I obviously am not as secure in myself as I had thought I was because when I do comment I sometimes wonder whether I should or not. Does the author thinks oh shit its that bloodyAchelois again commenting on my blog. So because I obviously suffer from minor anxiety related to commenting if I find myself in the slightest bit concerned that the author may think this I am going to read and not comment. I have realised that partly its the way I was brought up by that I feel obliged to comment - manners.

I guess I feel that its a bit rude really to lurk around reading a blog and not eventually introduce myself! Once I have done that I feel better. Latterly on a blog I comment on about three times a month or less I found myself wondering about the fact that the author never ever comments anymore or seems to have any interaction with me at all. So I have decided to stop commenting on that blog. This brings forth a dilemma for me because of the manners thing, I feel I should therefore stop reading the blog.

I am a fairly ordinary middle aged woman and honestly I am not that neurotic, my mind has just been meandering around the whole blog etiquette scenario and I realise that I know nothing about it, so if I make faux pas (sp) with commenting it is my social naivety that is at fault I guess. I have also worked out that I fully expect the author to be trustworthy! An attribute which is another example of my crass elementary knowledge of blogging generally.

I have wondered whether there is a book about blogging and etiquette/rules and realised that I would feel a bit sad to buy it. So like a teenager at their first proper party, blushing and fretting and shuffling from one foot to the next, hands in pockets or conversely drinking that bit too much and being a bit loud and in your face, I am sure I am making frequent mistakes in the world of blogging, which is so new to me.

On the trust issues I guess I have to go with my instincts - by nature I am fairly private so do not put my real name in my blog, not because I have anything to hide to be frank more because I am aware that not all people on the wibbly wobbly web are entirely trustworthy. So if I do comment on a blog its because I feel an element of trust with the author. I guess what I look for is integrity through the written word and if I feel that is there I feel more confident to comment occasionally!

Whats that's song? 'its my party and I'll cry if I want to' (not a favourite of mine actually just trying to find an analogy and at the same time showing my age) Its my blog, and I have just worked out I don't need permission to write about anything at all, I can write pretty much what I like. Obviously including my personal ethos in life if that is the right word, as long as I act with verity and probity......

(By the way 'comments are welcomed' I just haven't quite worked out yet how to have that permanently on the blog along with how to post links properly)

So there we the truth is out. I guess if you have read this far you will have worked out, I really really don't like a liar. So if I have plucked up the courage to comment it means I am doing the trust thing to an extent. Its worth googling trust quotes there are some thought provoking ones I think.

A decent lunch......

Today G announced that we were going out to lunch. Bearing in mind I am rather attached to my bed at the minute I really really didn't want to go. It seems other half is worrying that I haven't been eating this week, despite reassurance that its quite normal when unwell!

Choosing Italian - Zizzi's, for those that know it, is a reasonable chain of mid priced Italian food served by courteous staff. We ordered a variety of starters to share. So I did eat and enjoyed it immensly.... mussels in a white wine sauce, calamari in a light batter, goats cheese on bruschetta, simple green salad & rosemary & garlic warm bread sticks. Not forgetting the essential olives. In typical Italian style the waiter seemed genuinely pleased that we had enjoyed our feast and said perhaps that tonight I may enjoy a light omelette now that my lunch had brought a little colour to my cheeks.

So being on the mend is good and thank you G for the lunch, it seems anything with a dash of olive oil strengthens my spirit. They need strengthening too, for no 1 grandchild arrives for a week hopefully tomorrow. Laying in bed too long causes shoulder subluxing, so I can never be unwell for long its too bloody painful.

I am panicking a little as I am worried the little man will be bored and have spent the last half an hour looking for local 'holiday activities' for youngsters. Then I remembered mine were young once and we have never been the type of family that relied heavily on 'organised' activity. So bring on the glue, the pasta collages, the paint, the stories, the bug hunting..... the fun.

A post to give a responsible view on swine flu!

thejobbingdoctor.blogspot.com/2009/07/oh-dear.html

This is an excellent post from a real life GP. At the best of times when trying any new medication I have to give it a go at the weekend when husband is around to make sure I survive the experience. My guess is some lucozade/cammomile tea and bed rest for most would suffice! Found this post from a link in Dr Crippin's blog whose opinions on the swine flu can be found via blogs I read down there on the right.

Have I got swine flu or am I just being a pig with EDS

I feel properly unwell. As a child when i was unwell (which was frequently) I was packed off to my grandmother's who had endless patience and kindness and small tempting meals made into smiley faces to try to get me too eat. She wouldn't nag or scold if I was tiresome, she would distract me... if it was summer or warm enough she would let me sleep in a lounger wrapped in a soft blanket whilst she did the gardening and she would chat. Each day she would insist that I was a little better and pleased that I had more energy - even if I wasn't better it would make me feel as though I was and this in turn would make me feel better. If it was winter she would bundle me up on the sofa and let me help her do the crossword. Making me feel like the cleverest person in the world.

She would rub my feet when they cramped and understand that placing them flat against a cool wall helped the endless cramping. She would change the sheets to soft flannelette when my skin hurt and bring warmed flannels if I had ear ache. When my children were little and they were ill I would remember the things she did and in turn would do them for mine. My daughters boyfriend has just had an operation and I am pleased to see that she is kind and thoughtful.

My dog is very pleased indeed that I am unwell because this means that he can 'pretend' to be sick too. For those of you who think dogs in a bed is revolting I am sorry but as soon as husband closes the front door he rushes up the stairs and joins me in my sick bed. We are an odd couple, he sighs when I do and I know he knows that I feel terrible. He helps me to feel less alone. I just wish he could change the bedlinen and run me a bath.

I know now that sometimes when I was sick as a child it was the ehlers danlos flaring because a bad flare is very much like the flu. I won't bore anyone with the details but if you have had the flu the symptoms that are like an EDS flare go like this -

severe joint & muscle pain
chronic irritable bowel with associated pain
feeling sick and dizzy/caused by low blood pressure
skin hurts (coz it does)
lack of appetite
bla bla bla
i also feel as though i probably have a chest infection

Now because of the swine flu I am not allowed to see the doctor if I have these symptoms and I think i need antibiotics for the chest infection. But I don't think I have swine flu and don't want to take the anti stuff. Perhaps the only way to see the GP is to lie to the receptionist, which by the way the surgery looks at present akin to a war zone, apparently to do with infection control which is joke.

Last week whilst picking up a prescription, the place was bare, and all were instructed to wash one's hands in the anti bug fluid which actually I am allergic to but never mind on entering and leaving the building. Most people seemed to be actively ignoring all instructions then going over to the touch screen to enter their details at the same time as cross infecting each other, no doubt. I know I could order the prescriptions over the Internet and then pick them up at the local chemist but that is a saga that requires a whole new thread! So anyway infection control is as i say a joke.

Family are bored with me feeling unwell now and despite the fact that I did not feel up to it I rose out of my pit and attempted to do some shopping. Not up to a supermarket I went to the local farm shop and came home with the following -

watercress, cheese twirls, chocolate cake, dog treats, chicken breasts, a geranium, a pretty ceramic holder to put my reading glasses in, chocolate ginger pieces, bacon, free range eggs carrots, runner beans, baking potatoes and a flyer about a car boot sale.

The things I should have got were not anywhere to be seen. Bizarrely I saw an ex-boyfriend's mother and his brother (very ex as I have been married 20 years) and I looked like complete shit, why that bothered me I don't know, I guess I would have liked both of them to say I saw S........ and she looked bloody fantastic. So not.

So anyway, if my temperature rises further and I start to get better in a few days then my guess is I have a touch of swine flu..... if my joints continue as bad as this with all other associated symptoms and my temperature remains lower than is normal for a person then its probably just the EDS. Lucky old me then....

osteoporosis link with EDS plus a little of me

Below is a link highlighting the lack of early detection of bone density problems and EDS. I am 44 soon to be 45 and last year broke my hand. Yes it hurt but I was surpised when results of a bone density scan were so poor. I now have to take alendronic acid once a week which is a pain as it must be taken on an empty stomach and you have to sit upright and eat or drink nothing for ages afterward. I also take a daily dose of Calceos. (calcium and vit d combination). Had I known my bone density was so bad I may have been able to avoid osteoporosis. My opinion is that on diagnosis of EDS bone density scans should be a matter of course. Fat chance I think this will ever happen.

www.philstar.com/Article.aspx?articleId=438330&publicationSubCategoryId=64

As I write dawn is breaking and I have had little sleep. Other half will wake in about an hour and a half and will go to the kitchen to put on the kettle. There he will scan the surrounds to see evidence of whether I have slept or not. The kettle will be warm, he will check pain meds, and me. I will undoubtedly not be a pretty sight. In a week or so it is our 20th wedding anniversary.

My cat has been staring at me for over half an hour and the dog my beautiful staffie is snoring and lying on his back with his legs in the air.

The font won't change but I don't care.

It is supposed to be summer and the clouds are fast moving and black, the rain is tropical and it is very windy. I am worried about daughter, she seems low in spirit and in pain. Letting go and allowing one's kid's to be adults is hard when at 19 it only seems a moment ago I held her in my arms and protected her with all my heart a tiny 6 pound baby. I still hold her in my heart and watch as she grows more beautiful. But the grown up world is tough I think, I know I can't stop time but if I had a choice I would give her the perfect life where nothing absolutely nothing ever made her sad. I know this to be a completely unrealistic notion but if I could it would be that way.

Next week I have grandson to stay for a week, this I don't mind at all. I do mind that no-one spoke to me about the arrangements and it seems I won't have a car as husband's is having an expensive 'fix'. humph...... for the record do not buy a volvo xc awd 2001 it seems a design fault with something called the viscous coupling? means it needs replacing, we are getting a re-conditioned part from Sweden and second hand this will cost £500.00. Great - car is comfortable sure but definately not the old old old reliable volvo 950 that we used to have. Thus far this year this car has cost us in the region of nearly two thousand I think. I am not best pleased. Husband is a gardener so we do need the awd but am beginning to think the old ways were the best - donkey and cart maybe!!

Well off to try that sleep thing again.

I hope to dream of sunshine and rainbows ...... hopefully a new camera for my birthday as mine is all broke but shhhh don't say its a secret........

because my comment response to last post was too long I turned it into a post

(edited to pop in some paragraphs)
If anyone manages to read all of this post you deserve a medal, please don't feel obliged to comment. I guess I am venting my spleen somewhat - bet you can tell.

Over here some years ago I had the benefit of being on a long term management plan, it served me well and I benefited from a specialised shoulder rehab course.

It was intensive and ongoing and concentrated on 'good shoulder behaviour' which was brilliant as having very poor proprioceptive skills locating muscles which had been switched off because the brain is a clever thing and does this to muscles which have endured dreadful pain. I believe its the brains way of coping with the pain, unfortunately this also meant that I ended holding my shoulder in what over here is known as the pain position and that is bad news as I was continually walking around with a dislocated shoulder.

With this specialist programme I practiced with a very patient physio who had worked with the English Rugby Team and specialised in shoulders, returning to 'hospital physio' as he was fed up with treating people with self inflicted injury! This marvelous man taught me and my brain to literally 'hold' my shoulder in and therefore woke up the muscles which support the area. It is not a cure but boy was it helpful.

Obviously they still dislocate if I were for example to sit on the floor and use my hand and therefore my arm to push myself from the floor to stand up. So I never sit on the floor alone and require a lift up from another person from under the arms to get me up again if I am down. But I don't walk around anymore with my shoulder just 'hanging out' as a result of the laws of gravity.

My daughter benefited from a years worth of twice weekly core stabilising physiotherapy,(the muscles inside which support the back and pelvis if strengthened help with posture and can help gait problems by taking the load away from the knees/ankles/hip simply by learning to locate these internal muscles and strengthen them as much as is possible with weakened/altered collagen fibres can literally get people who may have been previously wheelchair bound at least able to walk in the house.

She also benefited with a physio who took the time and trouble to learn about the condition and also take the advice of Professor Grahame's team at University College Hospital London. Strengthening the muscles from the inside out is felt over here to be extremely important as it is thought to benefit the hypermobile immensely, she now backs this up with Pilates. It was hard and locating again specific internal muscles is difficult with EDS if proprioception is difficult so patience dedication and tenacity was required. The experts in London recommend appropriate physiotherapy as an absolute must tailored specifically to the hypermobile.

I will keep my fingers crossed that the long term management plan is funded by medicare for you Veronica.

Here chiropractors/osteopathy is contraindicated although there are a few who find a good one who will align and relocate! few and far between though. The ethos here I believe is that a physiotherapist educated in EDS can really help the patient strengthen the muscles which in turn help to hold in the joints!

Physiotherapy particularly for children at Great Ormond Street Hospital in London is done on an in patient intensive fashion which is hard but parent's have reported good results. My daughter was diagnosed before these schemes were designed and I really really wish she had had the benefit of them from a young age.

Pain management courses tend to concentrate on managing pain from a multi-disciplinary approach incorporating pacing, distraction techniques and more. It is thought that many medications do not have good efficacy with the EDS patients but there needs I think to be more research in this area as to the cause. My personal opinion is that they can be of help we just probably need more!

I am not a great believer personally in NSAID's as some with EDS feel that if there is no swelling then their use 'may' make the hypermobile joint more vulnerable to injury but this is a subject with a definite 'for' and agaisnt' team. I also am allergic to nsaid's which precludes their use for me at least.

I do take neurontin for nerve pain which is an anti epileptic in essence but increasingly popular for chronic pain patients in lower doses. Others benefit from topomax also an aed. I don't get on with amitriptyline or dothiepin which is an anti depressant often used in very low doses to treat chronic pain, it gives me arythrimia which gets a little out of control but many swear by it and it is considered a useful med, popular with those who have fibromyalgia acommpanying their EDS.

I think medication is such a personal thing though and I have a history of bizarre and strange reactions to the most mundane of meds (am allergic to piriton a med here used to treat allergies) I do benefit from seeing a pain management specialist and do take a combination of medications some of which are pretty strong and opiod based but this has happened more recently as I have osteoarthritis, osteopenia etc.

Its weird how different approaches are in US to UK. It may also be the result of different health care systems and over here the funding is unlikely to take place for surgery if the end result is not as successful as it would be in a non EDS patient. I also think its a personal thing as I have chosen not to go along the surgery route as some have, as stories of failed surgeries have put me off somewhat to be honest. I do know that at some point I will probably have to have some but for now I guess I am surgery shy!

Wow that was a ridiculously long comment on my own blog! (now a post as it obviously was too long)

I agree Veronica, blogging is a sanity saver.

In a way I suppose perhaps naively that I would want to be able to unload the dishwasher after surgery! Currently don't do it anyhow and frankly am happy not to have it on my to do list for as long as I can get away with it!

As i have aged in my forties I am more of the hang loose type of dislocater - a permanently dislocated thumb for example is not an event traumatic to me and does not require painful relocating it just slides in/out and about at will. I am supposed to wear rigid splints at all times but I am afraid too much splinting renders me all claustrophic and I worry that my muscles will waste away completely if they are supported by exterior stuff. I think its important to go with what works best for each individual as despite the condition having a name common to all that suffer with it I really think that each person's experience is unique to them with common denominator's linking us all.

Well I can't type or think about what I am saying anymore and am worrying I am being pedantic in the extreme- deep breaths............ (repeating to myself .. it is OK to have an opinion)

Goodness me no one would ever think looking at me I had a sensible thought in my head. I love the blogging world I can talk and discuss away the ins and outs of EDS with people who understand implicitly about it without continually having to explain. Its great.


thank you for your comments.

bla bla bla

As I write the tips of my fingers are tingling and not in a nice way I must say.

I have added to my google reader a few more blogs of late a couple of which humble me in the authors ability to write simply and yet able to get across to the reader - an emotion, an experience, a thought ...... so well. I find myself humbled.

Sometimes I am reading by way of pain distraction and leave the daily/weekly post of some one's life whom I have never met nor am likely to feeling empathy that I find difficult to put into words. Occasionally the content means I absolutely have to check my reader to find out how things are going. The Internet has opened up a whole new world for me when sometimes mine can be a little small.

For some reason I am attracted to Australian/Tasmanian/NZ bloggers who seem to me to have a refreshing frankness often lacking in UK blogs. (no offence to UK bloggers its just a current personal preference) Although my geography is dreadful having been thrown out of geography lessons at the convent I attended by a nun who found out that I along with a bunch of other girls were slipping spirits from our parent's drinks cabinets into our flasks to accompany our packed lunches. This was obviously very bad behaviour indeed and I have completely forgiven the snitch (not) who dobbed us in - we were afterall fourth formers trusted to eat our lunch in a room in the eaves away from the rest of the school in a cold attic room where a drop of brandy in our coffee seemed entirely appropriate. I now understand that this was a complete breach of trust and understand that our behaviour was reprehensible...... Why that meant I couldn't attend geography lessons I will never know and I never discussed it with my parents as my guess is as they were paying the fees they would have had something to say about my lack of geography tuition. At the time I didn't mind, I disliked geography probably because of the sister who taught us about the world! She claimed that I would 'infect' the other girl's with what I didn't really know or care as it meant that I got to sit in a very cosy armchair in the library reading, an activity I much preferred to Geography. In retrospect I feel the gap in my education shows. I digress as ever So I guess I am really saying thank you to other bloggers who do not know it but when my house sleeps and I am not, are providing a constant stream of 'other world's' which often make me laugh out loud and in the next breath cry. A snapshot of lives which are not mine I am privileged to share.

At the minute I am going through one of those phases where I think perhaps I should visit the doctor. But know that I will not as I would simply be providing him with a list of things which he can do absolutely nothing about. So by way of blog moan to save the NHS -
MY LIST
These things hurt -

hips
knees
thumbs
hand that broke year ago
sacro iliac place (sp)
neck
a pain I can't really describe in my chest

OK there is more but am boring myself... and also think I may have blogged similarily previously! Perhaps I could go to the Pain Management Clinic and see the scary physio who had not looked at my notes and as I was trying politely to explain about my EDS and without meaning to sound ungrateful turning down a few of her ridiculous suggestions as to ways to combat my condition (circuit training to give an example) she shouted at me ARE YOU JUST HERE TO GET MORE DRUGS... to this day I am still quite proud of my reaction. I won't go into it here but suffice to say I was extremely polite and she left the room.

I then promptly burst into tears of frustration... some time later the nice 'important' consultant man came into the room and apologised explaining she had recently started working at the pain clinic bla bla bla.....

In the meantime two other physios whom I had previously seen for periods of over 1-2 years in blocks of 12 week sessions elongated each time by clever massaging of referrals and therefore NHS statistics, came in and chatted with the door open, handing me tissue's for my childish tears. Bearing in mind they both actually know me well they knew I am SO NOT a drug requester.... they asked after my children and my husband and we even laughed together how despite their very best efforts I would never meet the statistics required for a modern physiotherapy department which means they could discharge me and I would be better. A six week blast of physio does not cure EDS, both hugged me gently but affectionately. Their kindness I will always remember I hope they educated the 'nasty one' about EDS but there is something inside me which thinks she will always remain somewhat rude, dismissive, cruel, uncaring and if I say so myself in a very bitchy fashion unattractive. My husband felt I should have made a formal complaint but if I complained each time my EDS was misunderstood and me along with it in an NHS setting my life would be filled with complaining. So instead I moan here and it helps! Probably because I can do so without prejudice.... I hope.