Wednesday, May 05, 2010

Happy Meals

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'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.


alhi said...

None of that is funny but I'm laughing to myself reading it. I can't believe a GP put in a lift that requires you to hold a button in to get it to move!

50kg! And that's your heaviest? Are you underweight at that or within a normal range. Trying to lose weight but failing terribly. Thinking I may post my weight every week in an attempt to be shamed into losing it.

Sarah said...

Can you contrive some manner of lift-button-pressing device?

I was thinking of a pencil with a rubber on the end, but something less pointy might be preferable, depending on how given one is to wobbling in said lift...

Veronica said...

So totally jealous of your exciting life. Mine is limited to waiting for the rheumatology clinic to find me an appointment and hanging around with a book, waiting for my knee to go back to regular painful, not holy fuck painful.

Getting stuck in a lift sounds ... well actually, it sounds like something that would do my head in. I'm not a fan of lifts.

Fire Byrd said...

Your right it was an exciting day... except no builders around when you wanted them to operate the lift. Sounds a bloody silly and as usual unthought out contraption for anyone not 100% healthy.
Funnily enough EDS got a mention on CSI the other day, so it's fame is spreading!

BenefitScroungingScum said...

Alhi: I'm glad you laughed, I'd've been awfully disappointed if you hadn't ;)
50kg is about 5kg overweight for me...I know it doesn't sound much but for my height (4'8) it is...I'm about the same height as your average 10 year old. At my lowest I was about 30kg which was scary underweight.
Keeping a stable, healthy weight with a disability is not easy! Good luck with yours Xx

Sarah: That is a good idea, I usually have pens in my bag so I'll try that next time and let you know :)

Veronica: No, me either...this lift is one of those almost all glass only to go between floors of a house thing so a bit less claustrophobic than most. Hope that knee is giving you less pain now Xx

FB: Ooh, which CSI was it? Most of this stuff is silly and not thought out properly for anyone not 100% abled, as usually they're the ones who design it! Hope all going well for you Xx

alhi said...

You must have some body as I remember a post where you said you had big boobs!

BenefitScroungingScum said...

Alhi: I'm fairly sure at least 4 of the extra 5kgs have gone on my boobs! I got my share and probably 2 other womens must be some form of compensation for the lack of height!

alhi said...

Oops, fairly expensive on new bras then!

Dave said...

Hi BG, glad you're still hanging in there, and thanks for the link.

My CLL seems to be responding well and I had a bone marrow test last week, with results next week.

Still too chemo-addled to do anything resembling work, and too tired most of the time anyway.

BenefitScroungingScum said...

Alhi: Just a bit!

Dave: Glad to hear the CLL is responding well, fingers crossed you'll get an influx of spoons soon & feel less tired. x

Achelois said...

being also short although not competing with the 4 plus important 8 in any way, being just under five foot is pretty tall I guess. I am too old to understand kg's. I weighed 6st and 4 llbs for many many years. I had a baby went up to 7st yay had another and crept up to 8st. I am now a few of those pounds over 8 stone and forgive me as that is pretty big for me. I have superbly slim legs which are obviously incredibly attractive in their bendiness. For my age a pert behind even if I say so myself as we move upwards torso wise I am classic EDS shape apparently so says the Prof with no waist to speak of. My heaving bosoms even before the children and 6st plus the bits were always larger than they should be! Obviously with my silken EDS skin my husband finds me irresitable. Me I cannot wear itsty bitsy bra's no no no. Anyway enough of all that tmi - suffice to say are we related BG?

On the whole appointment bit of the post I am afraid I need to read it over again due to brain fuggy ugg.

I got the lift bit.

Veronica I wasn't overkeen on lifts until I got stuck in a lift a little while back. I think I wrote about it in blog but I am too damn lazy to label so that could have been a dream. But.... me not like lifts UNTIL stuck and the beautiful sexy firemen came and saved me. As I was sitting on the floor blood pooling and bendy everything prevents me standing too long I absolutely had to carried to safety in the most divine fireman's arms. No firemans lift for me thank you. He carried me gently and I was so grateful..... I simply can't wait to get stuck in a lift again frankly. A girl can dream yes?

BG - the tea to which you refer could have a habit of creeping up on you when you least expect it hun. Less is more....

I know I know I do go on and on so I am gone.


BenefitScroungingScum said...

Achelois: I'm only really drinking the tea at bedtime, it's too sedating in the day...and not every day so hope it'll be ok?
I'm frankly jealous of your fireman story and off to find a lift to get stuck in ;)
As for the waist thing, is that supposed to be a sign of EDS? I've got pretty much an hour glass figure & even though I've put on weight still got a very small waist. What is it about bras you can't cope with? I'm once again finding if the bra fits it dislocates my ribs, which is a bit of an issue! Hope all is well for you Xx

Lyrael said...

Sorry to drag you back to old posts, but I only just discovered your blog (via a friend who follows someone on twitter who follows someone on twitter who follows someone on twitter who follows you. Or something along that vein) and I've been reading back through archives, managing to stop myself from commenting on ones that were ridiculously old. But I just had to here - I *so* need a recipe for that tea.

I'm not usually a smoker, but seeing as how marijuana is so far the only thing I've found that actually works as a painkiller (being the kind of EDSer who can consume copious amounts of prescription drugs without noticing a thing) I've taken to smoking it on occasion. But only on occasion because I hate smoking. Baking it into cakes is all well and good but I very rarely have the wrist strength required to mix the cake mix. Tea sounds like the best idea I have ever heard! Please, divulge some more information on this wonderful idea. <3

BenefitScroungingScum said...

Lyrael: Hello and welcome! Had you thought of using a vaporiser? All the pluses of smoking, without any of the downsides cos it's vapour not smoke. You do still have to inhale it though, sort of.

The tea is very straightforward. You make it from the leaves, not the bud which may make it difficult (or easy) to source. Use fresh leaves, keep in a jar in fridge for up to 3 weeks or freeze them straightaway. 3 or 4 leaves, rip in half, pour boiling water over, leave to infuse. Smells disgusting, tastes ok. My personal preference is to add a camomile & spearmint tea bag for taste. Hope it helps :) BG

Lyrael said...

I must say I hadn't even thought of that. Possibly a consequence of everyone I know who does marijuana smoking it. As I tend to just blag mine off friends whilst they're smoking rather than finding my own dealer(and having to pay for it myself ;)) I've been rather limited in choices. :P

I shall look into this vapouriser. Whilst the tea sounds wonderful I think the fresh leaves might be a tad difficult to get hold of as the only people I know who grow their own happen to live in another country! Vapouriser could make a decent Plan B I guess. :)