Thursday, September 15, 2011

Owls And Oramorph

It's been a busy old month, especially for a month that's not yet halfway through. So much has happened politics wise that the point of this blog - a diary of the life of someone with severe disabilities reliant on welfare benefits - has got a bit lost. Rumours that it could be found in the middle of a morphine haze are worryingly accurate as anyone who follows me on twitter already knows.

I finally got to see my rheumatologist, who'd requested to see me three months after my last appointment in December 2010, six months late is not that long a delay for rheumatology which did not benefit from the additional funding New Labour threw into the NHS by having the misfortune to be for patients who annoyingly don't tend to get better and fit into nice, target driven tick boxes. That rheumatology is the speciality covering musculo skeletal problems which keep large numbers of people out of work seems to have been thrown onto the 'who needs logic or sense' pile by both the previous and current governments.

So, back to my rheumatologist. He's ever so nice and has enough of a sense of humour to have explained that had I not thrust my my chest out to relocate both of my shoulders so loudly during the appointment that he would have been very disappointed. I'm not sure if his disappointment would have been related to the dislocating parts or the chest thrusting parts but he's lovely so can get away with either. Plus he managed to keep a straight face when I staggered sideways into the consulting room bin so he gets points for that too. We discussed the breathing problems I've been having and I've been referred for some specialist lung function tests, with emphasis on looking at the structure of the tissue around my neck and throat to ensure it works. Quite what anyone plans to do if it appears not to work brilliantly I'm not sure at this point, but as the appointment has come through for Tuesday next week either it's been sold to a fellow consultant as being someone who's 'interesting' or they are actually a teensy bit worried I might stop breathing and not be able to start again.

Nice isn't going to get me fit for work though, not that getting fit for work is really within his capabilities as to my knowledge the man doesn't have a DNA altering machine tucked away somewhere. It's completely forgiveable that some people look at those of us campaigning so much and wonder why if we can do that we're not fit for work. I often wonder that too, especially on my rare good days, then life pulls it's usual bendy trick and manages to make the point for me.

About 10 days ago, oramorph not being conducive to accuracy, I moved my head to one side. Somehow, in that "I don't know how it happened" bendy way there was a sliding sensation in my vertebrae and a snapping noise hideous enough to disturb me as it was distinctly different from the clunking noise most joints make when they dislocate or relocate. So much so that at the time I genuinely feared I had broken my neck and went to bed that night not knowing if I'd wake up a quadriplegic. No offence is intended towards those with quadriplegia, but it's not top of my current life wish list. I consoled myself with the fact that quadriplegia might be spectacularly shit to get used to but it would at least bring the benefit of a full care package...for now.

One of the big problems for those of us with rare conditions is what we're supposed to do when such acute problems arise. Friends and boyfriend all were extremely concerned, I was in agony, not making a huge amount of sense and unable to turn my head even 45 degrees each way - a huge restriction for someone with the neck movement more typically seen in an owl. Lots of suggestions were made, that I should go to my GP, that I should go to A&E but everyone understood that there wasn't actually anything my GP or A&E could do. If I went to see my GP, great though he is, he would have looked at my blankly, asked what I thought had happened and mumbled about x-rays and A&E before making sure I had enough pain relief. If I'd gone to A&E a junior doctor with no previous knowledge or experience of Ehlers Danlos Syndrome would have seen me, quite possibly thought there was nothing wrong as I had the range of motion of a 'normal' person and dismissed me. Alternatively they'd have x-rayed me, scanned me and then started making noises about manipulating my neck, which to me is an accelerated route to quadriplegia. So, I dosed up on oramporph, tweeted utter nonsense to the internet and sat it out until my physiotherapist could see me.

It's safe to say my physio was somewhat peturbed by the state of my spine. Somehow I'd managed to rotate two vertebrae (C6 and C7) around to the left where they had got 'stuck' due to poor muscle recruitment and associated spasming. So a twisted rather than broken neck. Thirty minutes later my vertebrae were back in the position they should be and my physio had got over her panic that she might wreck her day by murdering one of her favourite patients.

I'm supposed to be in Birmingham this weekend, partly to visit my boyfriend and partly to take part in a fringe event about welfare reform at the Liberal Democrat conference. No-one's especially thrilled at my driving in this state, so I agreed that if my physio absolutely forbade it that I wouldn't go...but made it clear how important it is to me. My physio's the sensible sort so she expressed her concern and we came to a compromise. If I want to go to Birmingham I have to stop twice on the way, during what is usually a 1 hour 40 minute drive if the traffic's ok. At each stop I have to stay there for 20 minutes move around, do physio and rest. Once I get to Birmingham I have to go straight to bed and stay there until someone other than myself deems me fit enough to get out. Considering my boyfriend's unreasonable standards of wellness that probably won't be til Saturday morning!

So that's my version of 'fit for work'. You can actually acheive an awful lot smashed out of your mind on morphine if so inclined, but the accuracy of those acheivements can be a bit dubious if amusing for everyone else. That's fine when you've got no-one to answer to but yourself...but something that actual employers are much less keen on.

So yeay me. Totally fit for work, with enough drugs on board to knock out an elephant. And definitely not as much sense as an elephant while so knocked out.


Veronica Foale said...

I am so glad to hear that the physio was able to fix your neck for you. xxx

Socrates said...

as to my knowledge the man doesn't have a DNA altering machine tucked away somewhere.

My crap DNA made my brain grow wrong.

There's no escape for me either...

Oya's Daughter said...

I find myself snickering allow with your gallows/crip humour that I know for a fact tends to horrify people who are not 'disability-normal'. I had a "Oh, look, I'm painting today isn't that brilliant!- totally fit for work!" then I looked round and ticked things off:

- Running a space heater as even though it's not winter yet my joints would lock too much to hold a brush

- the only comfortable chair I can paint in is downstairs, and I can only sit in it for 20 minutes at a time

- incontinence pads just in case

-wool lined slippers so my feet don't freeze, even with the heater on

- reminding myself to stop and put my feet up the ankles don't swell up like the fetlocks on a shire horse.

- wrist and hand braces

- dicloflex which isn't strong enough for the amount of pain I'm in even doing this stuff, but it's as strong as I dare so I can function later on in the day.

After all this effort on this piece I'll be useless for two days afterwards and will be mentally unable to even think about doing anything creative for a while. When I was on the methotrexate, the side effects were so bad I was unable to do anything for two days after taking the stuff. Every week. Yeah, that would go over really well with any employer.

I work now because I like what I do; but I'm also aware on some level I really probably shouldn't be doing it.

DeusExMacintosh said...

And of course the chances you'll get better are so good that there's no point in making a permanent award, you should be monitored by the DWP at least every year.

If you haven't managed to alter your genes in 10 years, you're just not trying hard enough! =8-)

mac223 said...

I have just read your blog about the spider in the bath. My hubie says you shouldn't have washed it down the plug hole because if you had been brave enough to have taken one of it's legs off and then kept it in a box you could have claimed carers allowance for looking after it!!! Love ur blog they keep me smiling! From another morphine hazed fan!! Xx

Stonehead said...

That's good news about the physio getting your neck sorted.

As for a job, how about comedian? Forget all that stand-up stuff, it's so yesterday. Instead, get that corset back on, get in that bean bag, do the chest thrusts and let rip. On second thoughts...

Achelois said...

I know some disagree on this but I am 47 and have had EDS a very long time now. Don't tell your physio as she will probably disagree as well. In these instances of neck gone wrong, I would recommend 4mg of valium then more three hours later if necessary. As the associated spasms can cause terrible nerve damage (ask my EDSesy daughter she has it. The alleviation of spasm can help long term damage. After taking lots of different pain reliefs combinations of which would make your mind boggle, my new lot is zomorph which is basically slow release morphine with a top up of oramorph whilst the dose is sorted out. As you know I take other meds for other stuff too but that all gets a bit boring. I wish I even had a physio right now, as I am so old, I am on the 'can't cure her' better discharge list. I wonder if its just EDS patients that get this when they get to a certain age it seems it something to do with not having a proper number on the computer, ie - MS/Parkinsons patients do, so get to get a bit more help. Due respect to anyone obviously with any of these conditions, I just wish they could programme the computers to have a rare diseases number, not beyond the wit of man surely.

The pharmacist lately though is very supportive, she lets me ring her and comes out to the car... I like to think its because she cares, but the cynic in me thinks she likes the break from the stifling heat since Boots took over our little pharmacy and put in tropical light systems.

Really hope seeing the boyfriend was good and the rest also. So from one morphined EDSey person to another, take care of that neck.

BenefitScroungingScum said...

Achelois: I know what you mean about us needing a tick box code! I tend to find the problem with valium is that I spasm more as a result of it...the occasional dose is helpful, anything more is a problem. However, that's with expert physio to treat the area, without that the best option would be higher doses of valium & dealing with the problems they cause. Hope you're doing ok my lovely friend Xx

Anonymous said...

yeh the system sukks man in the uk BADLY, im on morphine, diazepam and was put on sleeping tablets from a bike acccident and depression keeping me awake . i had my esa stopped because of atos healthcare the corrupt wankers. pisses me off the way most people on methadone prescriptions never seem to lose their esa plus half of them are getting disability living allowance too probably middle rate at least. its one propper messed up system. I thought originally when introduced esa was intended to be a middle of road sickness benefit one seperateting the full long term incapacity claimants that never can work again from people who maybe could in the future but it seems the condemed party have scrapped that one to reduce benefit bills without careing about the individual affected. cant wait to vote labour next time even if just a protest vote get em out of power fast the muppets.