For some reason all my hospital appointments appear like a rash across the same part of the calendar every year, so yesterday saw me head off to Freak Clinic and later to my GP. I can't quite work out where the year since last appointment has gone, but fortunately this time the parking situation was slightly better and I didn't need to accost any builders to help me up stairs. Probably why my blood pressure was considerably more healthy this time.
As I'd seen the consultant last year I saw the registrar this time. As Ehlers Danlos Syndrome is a rare condition I believe those of us with it have a responsibility to allow medical professionals to learn from us. It may not always be what is in our best interests as individuals but it is in our overall best interests. Although it is too late to rectify the physical and psychological damage done to those of us only diagnosed very late in life, it's not too late to stop that happening to more young people. The registrar was lovely and spoke English to a far higher standard than many of our native speakers, but he also shared the kind of indecipherable accent common to many of our native speakers so I found it rather difficult to understand him. The harder my body is having to work to get me around the harder I find it to take in information, my brain is too busy concentrating on sit up, move forwards, stay upright, breathe dammit, breathe, to focus on anything more complex. The first thing to go tends to be my ability to comprehend so add in a strong accent and all bets are off. I'm not sure if the overly energetic concentration skills are the reason I've developed another ptosis but the registrar was the second person to point it out, and the second to notice I can't tell my right from left. Perhaps that's why I had to donate another armful of blood, but that thyroid function test several people suggested a few months ago is finally being done. I'm sure this is all just part of the relapsing remitting part of EDS though.
Part consolation prize for having reached the weight of 50kgs, heavier than I've ever been, and part only thing I could think of to stop the fatigued muscle shaking I went to McDonalds on the way home. The real prize was the toy lightsaber I got in my Happy Meal. All kinds of awesome. Who says women aren't easily pleased? Well, this one anyway.
Then it was home for a few hours before heading off to see lovely GP. I know. You're so jealous of the excitement of my life you just can't contain your envy. I get that way myself. If it helps I became near homicidal when one of my neighbours woke me from a much needed nap about 30 seconds after I'd fallen asleep which meant that was the end of that. I could've cried.
Usually I'm a bit more emotionally robust* but withdrawal is really dragging me down at the moment. I spend lots of time fantasising about possible ways of getting inside my skin to scratch the terrible Oxycontin induced pain in the fascia. At least I think it's Oxycontin induced...it's quite different from the kind of pain produced by multiple spinal and rib subluxations which for some reason I'm having as soon as I reduce the last set at the moment. Really envious now aren't you!
The consulting rooms at the new GP practice are upstairs, accessed by a flight of stairs for most and a supposedly DDA compliant lift for others. As I went towards the lift one of the other patients asked why I was using it as I looked so fit. I think she thought I didn't know where the stairs were as she was mortified when she realised I wasn't able to use the stairs. It always amuses me how instinctively people equate slim with fit. Lovely GP is fortunately more switched on about my abilities as she came out of her consulting room to find me, knowing full well the delay meant I would be stuck in the lift. I was...sort of halfway up from the waiting room, feeling a right muppet as everyone on the ground floor looked at my legs through the glass door and lovely GP tried to figure out the problem from the first floor. The problem was that my fingers just aren't strong enough to keep the lift button fully depressed and it must have some safety shut off feature if the button is pressed intermittently. Really annoyingly it's impossible to press the button with the side or heel of your hand as there's a 'safety' rail in the way so I confidently predict more 'stuck in the lift' moments in my future.
I needed to get some 5mg tablets of Oxynorm prescribed ready to take the next step down in the withdrawal process and some Co-codamol, a put on prescription as it's expensive to buy on a frequent basis and only the lowest dosage of codeine is available over the counter. We had a bit of a chat about whether there are any medications which can help ameliorate the side effects of withdrawal but other than diazepam there aren't. Lovely GP is quite happy for me to use diazepam for a couple of days each time I drop the dosage but agrees it's less than ideal considering it makes me even more floppy and carries such a potential for dependancy itself. Fortunately a fellow blogger explained to me how to make tea from cannabis leaves, which is excellent both for improving circulation and sleep. It's also a more socially acceptable way of consuming cannabis than smoking a pipe in the middle of the day, and happily cheap as most people consider the leaves of the plant useless. The only downside is that you need to find someone who is growing their own plants, but if as I have, you can do that then they'll be only too happy to donate the leaves as they aren't a part of the plant which can be smoked. That, and be prepared to fall asleep for several hours, which with any luck is what I'll be doing before too long...
*I did only say a bit.