Tuesday, February 01, 2011

Gizza Job. Go On, Gizza

Although I've been writing about daily life with a disability for well over three years now the subject has never had such widespread public attention*, so egged on by my fellow benefit scrounging diarist I'm bringing you the reality behind the smiles. 

My standard answer to 'how are you?' tends to be either 'fine' or 'I'm good thanks, how are you?' because really, what else can I possibly say? 

I'm fine today, good, even great maybe. That's what Roland said last night when he came to take me out for dinner. At 530pm. He drove me to the pub we were eating in and after forcing me to stay in the car while he came around to help me out he patiently helped me get to the accessible entrance as I insisted on trying it out. Roland knows to be firm about insisting I stay put as he's witnessed way too many in and out of car dislocations, but seems to find the head smashing into the car roof part most distressing. It was all great, accessible, despite being up a significant slope, ready with it's doorbell to alert the staff someone needed to get in. Except the doorbell didn't work and Roland had to carry me up the steep steps himself. It's a good job I don't weigh too much or care about the 'indignity' as my friends often have to carry me to get me into places. We'll gloss over how my ribcage buckled as Roland picked me up, and how painful the pressure of increasingly collapsing ribs is, the potential damage that does to internal organs, or the dislocations during dinner that are so frequent I usually don't even mention them. We had a nice dinner while Roland chatted about how fantastic it is that I'm well enough to go out for tea and marvelled over the fact that I ate most of my meal, something that just hasn't been an option for most of the previous 12+ months as I've spent them decorating anywhere I've been with vomit. I was home by 7pm, too tired to even continue a conversation, but still somehow finding the energy to involuntarily scream when my whole shoulder girdle decided to dislocate.

So yeay me, I'm great! So great it's nearly midday and I haven't been able to find the energy or co-ordination to get washed or dressed. So great that once again I was awake at 5am, writhing in pain from the gastritis type symptoms which have been waking me up between 3 and 6am every day since sometime in October last year, which despite the most powerful medications my GP can prescribe hasn't gone away. It's got better though, I've not vomited all over my flat for at least a few weeks. Unfortunately I can't say the same for the other end of things, which don't seem to have received the same message to stop. God, pooing one's pants is undignified. I hope the NHS cuts haven't kicked in as yet now I'm waiting for a referral to a named gastro specialist. It has to be named rather than a general referral because if I end up in a clinic with a new consultant or registrar with no experience of hugely complex medical and surgical patients then they tend to panic and order all sorts of unneccessary  and expensive tests or investigations because they just don't know where to start. Of course naming a doctor doesn't guarantee they'll know anything about EDS or be able to cope with such a severely affected patient, so my GP and I just had to pick the specialist most used to complex cases and hope he doesn't go wibble when confronted by me.

Ehlers Danlos Syndrome is hugely affected by the rise and falls in hormones during a woman's menstrual cycle so today really is one of the month's few good days for me. Whilst I'm wriggling and fidgeting constantly to put my slippy joints back into contact with each other I expect less major dislocations. On an amazingly good day I can count major dislocations in the 10's whereas on a bad day I can count 10's of dislocations in a matter of minutes. On a good day I don't have to worry so much about choking on food, drinks or my own saliva. 

I like good days. Even if I'm still in my pj's at lunchtime. I can concentrate, mostly. On bad days I can't think or see straight and stumble in a confused state through the long hours of overwhelming pain. On good days I can read a book, write blogs, make films or speak on the radio. On bad days I don't have even enough concentration to watch a film or TV programme I've not seen before. When I was at work my boss thought I was having seizures as on bad days I did the weirdest things, especially with filing. Eventually she found a system where she could guess at some of the creative ways my morphine addled brain might have come up with to file documents but plenty were lost for good. That was before work declared me a health and safety risk for my inability to stop dislocating during working hours. I can sort of see their point...

Mmm, morphine. After spending the best part of a year withdrawing from prescribed oxycodone I've developed a healthy fear of controlled drugs. Actually that's not true. The drugs are awesome. Withdrawing however is most definitely not so awesome. Fortunately oramorph tastes like utter crap so doesn't encourage one to take it when it's needed. It also spaces me out so much I can't really function so I hate taking it in the daytime. Cannabis is far more effective and safe a painkiller but tends to get a different reaction in public than a bottle of prescribed morphine does. 

I just dislocated my elbow and shoulder reaching for a cup of tea and have stopped to reduce the finger dislocations caused by typing this post. 

So that's me. I'm fine. Great even**. Once I'm moved over to ESA I'm almost certain to end up in the fit for some work category. I'd like that. So long as I can find work I can do in my pyjama's from home whilst puking, pooping, dislocating, falling, ingesting morphine and all manner of other prescribed (or not) drugs. 

Gizza job then. Go on, gizza.

*being ignored by the majority of the mainstream media is widespread attention when it comes to disability issues!
** Whilst writing this post the dislocations I can actually remember resetting (as opposed to doing so without consciously registering it) are at least 2 shoulders, elbow, multiple fingers, both wrists, spine, ankles and I'll do my knees and hips when I manage to get up from where I'm sitting on a dislocation reducing beanbag.


Hellsbells said...

I just want to give you a hug. But a really gentle one!

Wife and Mother said...

Great blog post! I find more and more that I just say I'm fine rather then telling people how I really feel and when I do say people complain that I'm moaning! Can't win either way!

Sue Marsh said...

No WAY am I hugging you!
Loved it loved it loved it.
We're just bloody awesome is what we are

Doctor Jest said...

Brilliant as ever. Went to a talk once by an anaesthetist who said cannabis was a good pain releiver with one annoying side effect they were trying to weed out (pun absolutely intened, live with it!).

That side effect wass that it made people feel good!!!

Trialia said...

*sigh* Your posts always sound so. damn. familiar to me. That's not exactly a good thing, is it.

I'm... lucky? Cannabis doesn't do s-t for me, except give me hemiplegic migraines if I happen to inhale it passively.

I'm petrified of being moved over to ESA, mostly because I have never been able to have a regular job - not even a part-time one. I sang with the Unitarian Music Society for a six-hour day in October. I had to make sure I didn't have any plans for the next four days, because I couldn't get out of bed for that long after. And that was just sitting, standing and singing. Anything else... well, it's hardly going to be easier when I have to get up every half hour to walk around for a bit to put my hips back properly, is it? But you know all this. I wish "they" did. D:

DeusExMacintosh said...

I once had a GP give me the contact details of the local "man who can" [provide cannabis]. Wish they'd legalise it and make the supply/consumption rules consistent across tobacco, alcohol and cannabis. Would make my life a whole lot easier and could supply useful revenue to support the NHS.

JoiedeVivre said...

I often just say I'm fine too. And even when I do explain they don't listen anyway. I have CFS among other things. Someone I have explained it to before saw me without my stick recently. She asked me "how's your arthritis today?" uhhh...

Thank you for writing!

Lisa said...

"I'm fine" is the bane of my life.

I hate lies and I'm a pretty compulsively honest person. So I hate that I'm supposed to be stoically British and say "I'm fine" when actually the honest answer to "how are you?" Would be "You know that scene in Scanners? I feel like that."

I told you that my stomach's gone wrong again and I had my gastroenterology referral cancelled, didn't I? I wish someone would do some pan-collagen disorder research into shit like this instead of seeing OI, EDS, etc as unique conditions because a lot of it affects us all. (I tend to wake up at 5am to bring up stomach acid.)

Anonymous said...

This all sounds so horribly familiar.

I went to see my GP yesterday about a few new symptoms, including my gag reflex going crazy and making me vomit all the time. She's sending me back to the Rheumy, I have no idea if this is a brilliant plan or a really stupid one. Guess I'll have to see when I get there.

If it wasn't for our British stiff upper lip we could have all probably been diagnosed years earlier too! Haha!

bendyleopard (Lex)

RockHorse said...

Yes, indeed! I'm "fine" too, in brief patches like when I'm able to concentrate for up to half-an-hour or flat on my back with wedges either side of my head, knees elevated and my ribs choose to allow my lungs room to expand enough to breathe fully. Or when I have the energy/am drugged up just enough to put on a cheery face to the world while most of my concentration and strength goes on holding myself upright ;-)

Still, I live in hope so when you get this job please bear me in mind to recommend for additional vacancies/holiday cover...

x J

P.S. word is "prole" HAH!

alhi said...

(((hugs))) seeing as virtual ones seem to be the only ones that won't dislocate numerous joints.

Does EDS get worse as you get older? I only ask because, while I know you had problems growing up and at uni, everything seems to have escalated since I've been reading your blog.

misspiggy said...

Sympathies to everyone. In case it's helpful, Professor Qasim Aziz at Barts is a key person to ask to be referred to for gastroenterology complications with EDS.

The Cannabis Grow Bible said...

This was touching but beautiful.. Thanks for sharing it with us.. Huges!

Lisa said...


Does Prof Aziz do gastroenterology for all collagen disorders or just EDS?

Anonymous said...


My partner's been seeing Prof A for several years now and believe he does all collagen disorders (although we've seen him for EDS). Lovely bloke, really goes the extra mile (and then a bit further) and can't recommend him highly enough.

Just as some experience we have picked up, having been going through something similar gut-wise. Mandatory health warning: I have no idea about the detail of your symptoms (and wouldn't want to encourage you to publish them on a public site), so please don't take this as any sort of advice at all and it may very well not apply to you. My partner has EDS type 3, but their symptoms tend to be with the internal organs (gut, heart, lungs etc), as they are actually not terribly hyper-mobile by EDS standards - they don't dislocate very easily at all, hardly more than the average.

We did find that many of our (very supportive) GP's medications actually had made things much worse and were causing issues. It's amazing how you can think you have the chronic squits for over two years and then find out you are severely constipated with overflow - especially if you are on opiates, which truly screw up the gut (speaking from experience: we've been onto the oxycontin etc, but had to quit it doe to the massive gut problems it caused). Adding in normal laxatives such as Senna or Docusate then just makes things worse with EDS: you just end up with squidgy constipation which you still can't squeeze out due to the bendy collagen in your gut.

The four big treatments that made a difference to us were:

1/ Creon 40,000 - pancreatic enzymes, help aid digestion and reduce pain enormously.

2/ VSL #3 - probiotics, but medical strength, not the health shop rubbish: with EDS, you get "leaky gut" which means constant infections (not just gut, but also systemic) so taking these really really helps cut down the frequency and increase quality of life.

3/ Antibiotics - you will still get infections on a regular basis despite the VSL due to the leaky gut - especially for the first year or so until your gut reprograms itself - so you need to nip them in the bud by having a set on hand, taking them at the first signs of any issues, and on constant repeat prescription at the GP.

4/ Resolor - a pretty new medication (only approved for use in women in the EU, BTW) which stimulates gut motility. This was frankly the wonder drug that meant you could leave the house with confidence.

You'll not likely get any of these without a consultant's letter due to the expense (and the fact that some GPs see thing like VSL as "complementary" rather than highly necessary), at least in our neck of the woods. You also hit problems especially with the antibiotics, as GPs simply can't authorise regular antibiotic treatment without substantial backup from a consultant as otherwise they end up in deep trouble with the authorities for breaching the guidelines for "normal" people.

Anyway, sorry for the length, but hopefully useful in terms of names to throw at other consultants if you can't see Qasim or the wait is an age. And please bear in mind the health warning as what helps us may make things worse for you :-)


Nemonie said...

I was gonna recommend Prof Aziz as well, he is the man apparently.

Gives you very gentle hugs.

I had to relocate my shoulder maybe 15 times whilst driving back from my dad's house this morning (a 2 hour drive). Mostly subluxes though. EDS is fun!

Anonymous said...

Stumbled across this post and now realize I have no justification for complaining about _anything_ _ever_ _again_

Good luck one and all.

Pusscat said...

I think the reason why we say we're fine is because people really aren't interested in our problems. Have you ever noticed anyones eyes glaze over when you say, "Oh I'm having a bad day today, not very well"? Or say something like, "Sorry you're not well, hope you feel better soon." Because they don't understand that we won't ever feel better. Or even make an excuse to go off somewhere because they don't want to continue the conversation.

People don't want their lives burdened with our conditions. They don't understand what it is like to be us. To never know from one day to the next if it's going to be a good or bad day.

It's sad really, but that's my take on it from the people who have asked the question, "How are you feeling today.".......