As the snow slowly melts away, my sanity slips back into place. It's at best tenuous but it is at least a start. Yesterday I made it outside, only for a few minutes, and not without a few scary near misses but the beauty of the frozen beach soothed my soul. Today an hour with girlfriends was calming despite the caffeine and emotional angst of the topics of conversation.
When I saw LC just before Xmas I was not doing well physically. I'd managed to get the Oxycontin down to 10mg td* but it was at great cost to both me and my blood pressure, so I was instructed to increase the Oxycontin back up whilst waiting for an urgent referral to the pain management consultant. LC, being an experienced consultant, wise to the bureaucratically bound ways of the NHS, actually phoned the pain management consultant during the appointment and dictated the letter there and then as well as ensuring the dictation tape went to the right place. As he said, otherwise it could be weeks before the letter was even typed up.
Although politicians seem determined to ignore doctors and nurses, they do tend to know a thing or two about where the real problems lie within the NHS.
So, I duly increased the Oxycontin and hoped it would absorb. I also unearthed some very out of date Zofran in my medication box and took them for a few days. Fortunately they seemed to do the trick and gave me enough of a break from the vomiting to eat some Christmas dinner. Over the holiday period I increased the Oxycontin up to 20mg td, and although the withdrawal symptoms didn't go they slowed down to a point allowing me to gradually get more rest. The cold weather caused such a massive increase in pain that I increased the nighttime dosage by another 10mg to where it is now at 20mg, 20mg, 30mg. With all the disruption caused by the weather I knew the referral would be delayed so waited until this week to start chasing it up.
The pain clinic told me they had no trace of any referral. The very helpful secretary I managed to speak to in rheumatology, which is based at a different hospital site to the pain clinic, initially advised me that the referral was yet to be typed and would be at least another week until it was. A further phone call unearthed the referral, which had been typed and posted before the christmas break. Yet another phone call, equipped with this knowledge, finally managed to unearth the referral sitting on the consultant's desk, and that it'll be at least a week before it is looked at and the consultant decides whether or not he'll see me.**
Politicians are constantly harping on about the value of the NHS and how determined they are to dismantle it and sell the parts to their money grubbing matessave it. Literally billions of pounds have been thrown at the doomed NHS IT project. It's 2010. 2010, not 1910. This one referral has taken 3 weeks to be typed, posted, received, opened and delivered to the right desk in a different hospital which is part of the same overall trust. Billions of pounds on IT, yet no decent system of email. That's before the consultant makes a decision to see the patient, at which point the referral goes back into the system, gets (I assume) posted to the Choose and Book team, who will then contact the patient to make an appointment. All this is for a referral classed as urgent.
Aside from the billions wasted on not fit for purpose IT, there are huge knock on costs to the welfare state while patients waiting for the bureaucracy to follow them around the system are forced to take time off work and claim benefits.
*td-3 times a day
**This bit strikes fear into my heart due to all the problems I had prior to being diagnosed.
Again my words are hiding, until I close my eyes, lose myself in the music and suddenly they arrive, tumbling over each other in their frantic race to the page, hindered by bendily uncooperative cold fingers.
Achelois sees this as a bold thing to do, a brave unveiling of self. She might be right, she's a wise woman, but for me it comes from a weaker place. I write what I can't say. No matter how close the friend, how sympathetic the ear, something within me chokes every time. Yet here, protected by a screen difficult feelings are easy to articulate.
The weeping continues. It's becoming very annoying. And boring. All these weeks of early morning puking and pooping have exhausted me. Whilst my Oxycontin intake increased slightly after seeing the LC it's just slowed the withdrawal symptoms, not removed them. On top of bone deep pain and fatigue lies a weighty blanket of sadness. Fortunately there is still a part of me which knows, were it not for this withdrawal process, I would be upset but not so completely devastated by events the way I currently am.
There is no shortage of food in my flat, just a shortage of interest in eating it coupled with a lack of spoons to make it. That concern has been removed again today by my neighbour delivering a plate of roast dinner to my door. My prescription medication has been collected by Ben, who will also do any shopping I need, as will the neighbours. I'm just particularly bad at either asking for or accepting help. Unfortunately my very dedicated and hard working carer worked herself into exhaustion in the run up to Christmas and is still really poorly. Which is why I've insisted that I'm absolutely fine every time she's asked, as she is far too unwell to be looking after anyone but herself.
My words have gone again. So perhaps this is all I'm supposed to say for today. Apart from to thank you for all your comments and support, they always help.
So, um, it's cold. But you knew that anyway. Pointless mentioning it it really. Except, it was words on a screen and I seem to be struggling to find them at the moment. Possibly all the words are hiding somewhere with my marbles, waiting until the first green shoots of spring before revealing themselves to me.
That, or a combination of things have finally driven me over the edge. Jury's out on that one, but I'll get back to you if I fall over any conclusive proof either way.
Mary has written an eminently sensible and informative post about the effect of the cold weather on impoverished cripples. You should really read it, it's full of interesting and useful facts about the benefits situation. A not so healthy winter of hypothermia some years back forever altered my perspective on heating costs. They aren't worth dying for. Not ever. After all, what can the utility companies do, sue me for the money? Good luck to them if they try, being assetless has its advantages. Unlike being cold, which is an all round shit state of affairs. Living so close to the beach is wonderful in summer, but in winter not so much. Fortunately my lovely landlord installed a new boiler in the run up to Christmas so I've thought it best to show my appreciation by not turning it off. At all.
My very nice neighbour delivered a hot meal to me this evening. This is a good job because for some self destructive reason I can't quite remember I decided to get into the left over bread from the Best Man's visit. I have eaten lots of crappy sliced white bread and very little else since then. Gluten is not my friend, no matter how many times I convince myself it does my body no harm at all and decide to reintroduce it
I moved into the flat a year ago this weekend. I'm not sure where the year has gone. Actually I'm not sure what happened to the last 1015 years now I think about it. I had some ludicrous notion that the next 10 years had to be better, because really, it's definitely my turn. It was probably that which tempted fate enough to make me start sobbing by lunchtime on New Year's Day, and carry on fairly steadily ever since. Well, that, the gluten, the oxycontin withdrawl, and cabin fever. Roll on spring!
This impressive example of a hypermobile shoulder actually belongs to The Best Man, though the poor quality photography skills are all down to yours truly.
Proving yet again that either Ehlers Danlos Syndromes and Hypermobility Syndromes are either not the medical zebras they are alleged to be, or that I just have some weird bendy seeker gene.
Thanks to a secret source at The Guardian, Benefit Scrounging Scum is delighted to bring you Bog Off!-The Meeja Luvvy Exhibit.
'It was a bit of a shock when I first opened the door-there were paper towels, toilet paper and other debris all over 
the floor. It was obvious no-one had been in to clean for a while and it was very off putting, not to mention potentially dangerous for anyone wobbly on their feet, or with a visual impairment.
The alarm cord was looped well above the handrail, so anyone who fell on the floor would have been unable to reach to call for assistanc
e.
The positive points were that despite all the mess, both the toilet and handbasin were clean and it didn't smell in there. There was also a massive mirror, suitable for people of any heights, whether chair users or not.
Although the space was just about adequate for a wheelchair user, the soap dispenser and hot air dryers were probably slightly too high for anyone using a chair.
Overall I'd give it a 7/10, but had it not been so messy and the alarm cord not looped up it would have merited an 8.5/10. The building is huge so it's almost certain there are other disabled toilets. Let's hope the one I used, which was on the main newsroom floor was an aberration.'
Perhaps someone at The Guardian will be able to let BSS know if that's the case?
