Heavenly Drained

So, after three days of progressively losing the use in my leg and taking higher and higher doses of morphine to try to cope with it, I finally cracked about half an hour ago and phoned my GP.

I described the problem, and how I couldn’t walk at all, or stand up straight, and how it had been around a seven all day, spiking into the horrible static off the top of the pain scale whenever I did something other than lie perfectly still with my knees elevated and tied together, and how I couldn’t take any more painkillers for it.

Knowing that I exercise a lot, he asked “When did you last go for a swim?” and I replied “Eight days ago.”

He gave a thoughtful little sigh and said “You’ll feel better if you go for a swim. Go for a swim tonight or tomorrow morning, that’ll loosen it out, and you’ll feel better.”

I feel a bit like the biblical cripple being told by Jesus to “Stand up!”

But, well, who am I to refuse? I’ll have to get a lift the hundred yards to the pool, and a lift back, and be winched in and out of the water like a sea creature, but it’ll be worth it.

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Nurse Karnstein Will See You Now

Two more failed attempts at getting blood (By a different nurse), who then called in Dr AC to have a look, who marvelled at my lack of useful veins and that even in hot weather and an an armoured leather jacket my hands were blue and cold, checked over both arms, vetoed taking blod from my ankle, and gave me a bag of vials and notes to take to the phlebotomist at the LGI later this week.

They’ve also added to my notes that getting blood out of me is basically impossible, and not a task for the fainthearted or inexperienced, though that I’m thankfully not squeamish and most doctors will get bored of playing pin-the-vein-on-the-zebra before I do.

Personal, personal.

So, Friday was my other meeting with Dr L. First off was really simple – Yes, she’s willing to do the referral, they just need to take bloods for a variety of hormone levels and things like that. She took a quick mental health history (Mine, and close family), re-checked my relationships with my friends and my family, and asked if I’d ever self-harmed; Not asking to see the results, just asking if I had. I, of course, told her, listed methods, and she didn’t judge me at all – She seemed unsurprised, actually. Best possible response. She also did an assessment of “Sexual characteristics” which I assumed would have been something scientific, but was actually “Breasts are present… One piercing… Armpit hair…” So it felt more like a check of “Are you conforming to gender stereotypes?” than “This is a proxy for your existing hormone levels”. If she was actually looking for something like an intersex condition or PCOS, I’d have assumed she’d want to see things like hair growth on stomach, or unusual presentation of genitalia. So I have no idea what that was all about, but she was pleasant and professional and laughed when I said that there had been two piercings, but the cat took objection to the other one. So no fault there.

I then went to get bloods taken, and was lucky in that the nurse on-duty had a slot free immediately, so straight into the room we went, with two tiny butterfly needles. She’d asked “Good vains or bad veins?” and my response was “Crappy veins. Rolly, collapsy, deep and narrow. Paeiatric needles if possible.”

She’d been pleasant about that, seeing what the smallest needles she had were (21g) and being reasonably inquisitive about why I had awful veins. I was happy to chat about EDS-HM, let her stretch up the skin on my right forearm, offered to let her try bending my fingers back to see what a “boggy” joint felt like, but she declined since she was “Risk averse and didn’t like hurting people”. All so far, so normal, in fact fairly positive.

She listened to me when I told her where the good vein was, and I’d taken off my overshirt (leaving me in a vest) so as not to risk getting blood on my cuffs – Regular readers will know that the “one good vein” is a massive sanguine superhighway on the back of my right hand, which bulges clear of the line of the skin on either side of the anatomical snuffbox when I flex. It’s a beautiful thing to behold, a testament to the combination of good muscle development in my forearms, and to the terrifying paper-thinness of my skin. She punctured near it, managed to miss the vein (even though I could feel the tip of the needle brushing against the side of the vessel, and I was happy to tell her to just pull back by half a millimetre and have a second go) then withdrew, leaving it bleeding and with a bruise rising up. She put a cotton swab over it, held my hand to the desk with her thumb to put pressure on it, and waited for the immediate bleeding to stop to try again.

And then things got awful.

Now, you probably all know that I have extensive self-harm scars. They’re all on my left arm (Not the arm she was meant to be looking at), they’re all fairly obviously healed and they obviously (to anyone who knows what wound healing looks like) range from about six months to decades old. I don’t habitually cover them up, firstly since I dislike wearing long sleeves and I don’t think that I should have to hide any part of my body to make someone else more comfortable, and also because I think it’s probably helpful to youngsters who self-harm to see an older gent who basically has his life all in order, and has obviously also done so. I distinctly remember being a young teenager and despairing of the idea that, by self-harming, I’d be stuck forever in teenagehood, somehow. That I’d always be “emotionally immature” and that I’d be hated and thought of as disgusting or pitiable whenever someone saw my arms. I’m not exactly inviting a conversation, but I’m setting a little radio beacon on the numbers-station of non-verbal-communication, that people can have their histories and that their histories aren’t all they are.

But the nurse breached all possible bounds of good taste. Whilst we were talking about something completely unrelated, with her holding my right hand pretty firmly to the desk, she reached out with her free hand and touched my scars. No asking permission. No “Are they a sensitive subject, or can I ask you about them?” Just straight-off-the-bat touching them. And not a brief poke with a finger to indicate what she was talking about, as she asked “What made you do that?”, no, she actually traced them with her finger. Following the longest lines, exploring the texture on the crosshatching. I was so shocked that I froze, which effectively stopped me from pulling my arm away quickly enough.

By the time I unfroze, probably only a few seconds but it felt like forever, I responded with “Because my life is horrible.” and then quickly tried to divert. I could see that she wasn’t going to stop looking at them, or stop asking about them (Just fill in the silences here with inane and incredibly personal remarks like “Don’t you already have enough pain and problems?” and “I can never understand why people would do that” and “That looks like it must have been so painful”) I diverted onto the mechanical nature of them – Indicating the difference between an atrophic and hypertrophic scar, which ones were hyperpigmented, how the difference between a full-thickness lesion and a partial-thickness lesion affected wound healing basically doing the same lecture on immune function and cell growth that I would have given to a nursing student, but with specific reference to the unusual qualities of EDS-HM skin, and with my arm as Exhibit A, instead of a collection of slides.

It was the best I could do, she wouldn’t stop looking at my arm, and she had my other hand pinned to a table so I couldn’t put my overshirt back on.

Eventually, a whole fucking lifetime later, she tried a second venipuncture, but by now I was so tense and nervous that what should have been an easy stick was impossible. Another hole, another bruise. Come back on Monday, get someone else to try.

I left, feeling utterly fucking violated, and despairing of the training of some nurses. How much special knowlege does it take to not ask someone about something that is so obviously personal? I’d never even dream of asking someone how they got a road rash, even though I know that the answer would probably be “Came off my bike, skidded a bit, was fine”, because there’s always the horrible chance that they were riding pillion and the driver wasn’t so lucky. Fuck, I’d never dream of asking someone how they got so much as a papercut. So how did she think it was all right to ask someone, who was already in a very vulnerable situation, in such graphic detail about something which was an obvious symptom of mental illness – Especially when the person doing the asking was pretty obviously not about to sit around for a three-hour unburdening of the soul about the mental and physical pains which might cause someone to self harm (see: apply topical irritant) for relief.

Unsure whether to write an anonymous note saying “Hey, so, your nurse did this, and it was a bit out of line, and she didn’t mean to be intrusive but it made me really uncomfortable, could you ask her to not do it again to anyone else?” or whether that would trace straight back to me and make me the pariah of the practice.

Also, this is at least part of the reason that I’ve been fighting the urge to self-harm so badly for the last couple of days – If people are going to make free with the healed stuff, maybe actual blood-on-skin might make them think twice about touching, or asking, or generally bothering. I know that it won’t help, but that’s how my brain went about it. It’s been a long couple of weeks.

For the record, I’ve not self harmed.

Statistics and damned lies.

So, today I saw Dr L about my medication review.

I explained what had happened (That every time I spoke to Dr Rh, he tried to take my pain relief away), and said, being bluntly honest for once; “If he thinks it’s physically damaging me, he can do a liver function test. If he thinks I’m an addict, he can come out and say it to my face. I’m not annoyed that he wanted to review my medications, though I am annoyed that he thinks that he can unilaterally decide what’s best for me without speaking to either me or my consultant, I’m mostly just annoyed that he went behind my back and changed my medication, even after three other GPs and two consultants have said it was appropriate.”

Dr L seemed shocked that I wasn’t going to pussyfoot around anymore, and started with the mealy-mouthed objections;

“Well, it puts us in a very difficult position…”

“We just want to do what’s in your best interest, and being on morphine really isn’t in your best interest…”

“We’re concerned with taking the safest course of action…”

All shot down with my usual replies. Prove that it’s doing me more harm than being in constant pain would do.  Tell me why being in pain is a better course of action than not being in pain. If it’s safety that you’re worried about, why don’t you gatekeep the famously-bad-for-the-stomach-and-liver NSAIDs as much as you do the much-less-likely-to-cause-invisible-harm opiates and benzodiazepines.

Then she came up with the blatant lie; “It says here that last month you discussed possibly reducing your MST”.

No, no I didn’t. I told the last doctor about how I took my MST – In that I didn’t take anywhere near the full dose per month, in that I took a full dose at night if I wanted to sleep for the full eight hours, and that I took a full dose in the morning if I wanted to do anything more energetic than lie in bed – And that seemed to mollify her that I was appropriately suffering (After all, if I took all my medication all the time, and slept soundly and felt fantastic when I was awake, I’d be an addict). We’d not discussed reducing my dose at all, and yet there it was in my notes. The notes which notably didn’t contain any of the information that I’d been asked about at the last session.

Dr L didn’t write down anything about my actual rates of consumption either. So I assume that I’m going to get the same “Ooh but opiates are fun things for naughty boys, not lifesaving medicine for good ones” rhetoric again the next time.

She did however swap my Sumatriptan for a Zolmatriptan nasal spray, which will hopefully work to stop the migraines but without the painful heart palpitations and chest tightness and blurry vision and inability to sit upright or breathe. So that’s a start.

I am still far, far too tired for this battle. Today, I’m going to ring Dr D, the consultant rheum, to see if I can get an appointment with him and get my Stanmore referral. This feels like it should be work for someone who isn’t incredibly ill.

And it had been going so well

So, my medication arrived on Friday, sans-morphine, and because of the pointlessness of bank holidays I couldn’t get any more until today (Tuesday).

My morphine arrived. Or rather, half of my morphine arrived.

I rang the pharmacy, and was told that, no, sixty pills was all I was getting from now on. So I rang the GP.

First, there were “no doctors in”. Seriously, mid-afternoon on a Tuesday, there were no doctors in the practice which employs more than a dozen clinicians.

I first said to the receptionist that this was exactly the kind of clinical decision that the patient should be involved in, since it meant having to change the actual dosage regime. Her response was “Oh, but the strength hasn’t been changed, so it’s a clerical decision, not a clinical one, so you just don’t get as many tablets. You don’t get to query those.”

Let me put this another way; Every month you eat five tins of beans, ten loaves of bread and a packet of margarine. You have no other food, and you carefully balance the amount of each that you have so that every day you can have beans on toast. One day, you go to the bakery, and they tell you that you can now only have five loaves of bread. Suddenly, the beans don’t work as well (They’re a bit icky when you’re eating them cold out of the tin, and you feel distinctly unwell doing so), the margarine is useless (you’re having to eat whole lumps of it, because there’s no bread to spread it on) and, worst of all, you’re hungry all the time. In fact, gradually, you’re starving, because you literally aren’t getting enough food to maintain yourself.

Halving someone’s rations is exactly the sort of thing that you should consult with them over.

I’ve managed to argue a meeting next week to “review my medication”, despite the fact that I literally reviewed them last month, but this is getting beyond a joke. It will surprise nobody that it was precipitated by Dr Rh, the same puritanical hatemonger who tried to reduce my morphine twice over the past two months. Thankfully, the review (booked for the 3rd) is with Dr L, who is very sympathetic and will just nod and agree that, yes, the review that was done last month was sufficient.

There is literally no reason for doing this other than a basic hatred or suspicion of people who are in constant pain. When I’ve already been looked at, multiple times, by multiple doctors, and been told “Well, you seem to be managing your condition extremely well, and the medication that you’re taking seems to be working as well as can be hoped, and look at all the progress that you’re making” the only reasons to try to change my regimen is if you think that you can make it more effective (“So, you do really well on diclofenac, you might like some other NSAIDs, would you like to try one for a month?”) or more streamlined (“So, you take four of these three times a day, would you like to try taking six of them twice a day, or how about a patch that releases the equivalent of twelve over 24 hours?”) Not just “I didn’t like that you were taking BAD DRUGS so I thought I’d take you off the BAD DRUGS – that means you won’t have EDS anymore, right? That’s how it works?”

Fuck the society that makes us more worried that someone who doesn’t need opiates might have them, than that someone who does need them doesn’t have them.

Black Planet

It’s been a nice, quiet, do-nowt sort of week, and yet it’s also not bee a waste of a week.

I failed to get to the cricket on Sunday (Still too ill) but spent Saturday to Thursday recharging at Best Friend’s house, wherein we did bugger all other than cook elaborately delicious meals (Any day where you have a chocolate, brandy and brazil nut suet pudding for breakfast is going to be a good day), listen to Yorkshire utterly destroying Hampshire on the last two days of the county cricket, watch The Battle Of Britain, and generally chatter nonsense. I don’t think we’d physically seen each other for about a month.

Next week, or over the next couple of weeks, I’m back to busy and depressing; 19th is a meeting of the local Labour party that I should go to, but will probably be basically mourning, 20th is seeing my GP about a referral, 21st is shoulder physio at StJ, where hope against hope I might get to see Carmilla again, then the 28th is a set of ultrasounds – Pelvic, abdominal and transvaginal. I am not looking forward to them, and in fact I am positively shitting myself over them.

So, to counteract this, I have booked my motorcycle CBT for the 30th, starting at 7.45 in the morning. I don’t particularly want a big, fast, powerful bike, I just want something to get me from A to B without using up immense amounts of fuel. And possibly to get me up to Whitby. A little mini-cruiser, or a commuter bike, would suit me down to the ground – Maybe even a Super Cub, if I’m feeling completely whimsical. But more likely a Suzuki GN or a Honda CG or similar, or one of the many similar-looking, -sounding and -handling Japanese 125s.

To this end, I’m going back to work – £20 so far this week (A grand total of about half an hour of work) and planning to increase the amount as much as possible without starting to resent working again. And I’m going to keep swimming, even though it’s exhausting, because that’ll keep me fit enough to be safe on a bike.

I refuse to let EDS be the be-all and end-all of me.

Thunderfuck

I am a very sickly Zebra today.

The day before the General Election was a long one.

Physio first. Very kind, very honest, community physio – Asked me all the right questions, was incredibly sympathetic, spotted my popped hip from the far side of the room and through a tracksuit, knew what EDS was and had treated EDS patients before when he worked for rheumatic physio… And admitted straight away that I was too complicated a case, and he couldn’t help me under the remit of the community physio. He also volunteered to chew the ear off my last physio at CA, the same as Dr D did, so that man is going to have the most in-demand scalp in the county. Sixteen-plus years of ongoing pain, with the hypermobility complications, needed more time and effort and specialist knowledge than he could swot up on, so back to the hospital for me. He was what I’d call a “proper physio” – A grey-haired ex-rugby forward, who enthused about keeping fit and said that I was doing all the right things by aiming for ten kilometres in the pool per week,  assured me that missing that goal wasn’t the end of the world, and that even trying was better than most people would do, and said that he wished me the best of luck, regretted that we couldn’t work together, and that if anyone was ever going to recover completely, it’d be someone like me.

I’m not sure if that’s just a platitude that everyone says to every patient, but a hell of a lot of knowledgeable people have said it to me, so it makes me feel a lot happier and more encouraged than otherwise.

I actually felt encouraged enough that I went for a swim. I’m continuing my strategy of taking neither crutches nor morphine to the pool, so that I can’t overwork myself in the opiate hubris zone and end up collapsing on the way home. 500m in about 15 minutes, with the limiting factor not being myself, but the fact that the pool was bedlam – Seven to a lane, one of the ropes completely slack, Medium lane full of slow people, Fast lane a combination of pissbreathers (Those people who swim in such close formation that they must be right in eachother’s stream if someone suddenly feels the urge), people doing deadly serious drills (whom I didn’t want to interrupt), one incredibly elderly water-polo player (who was covered in what looked like WW2-era forces tattoos with whom I had a lovely chat about both water polo and the history of the local pool) and me (he of the incredibly erratic split time, even more erratic accel/decel out of turns, and tendency to stop in the middle of the lane every few dozen lengths to reassemble).

Deciding that I was better off taking the small prize rather than knackering myself in a suboptimal pool, I called the 500 a win, and went home.

Then the GP, which went really well – Dr L, someone I’d not met before. Nice, genuinely approachable, said to give her a week to do her reading, then come back and get a referral. Next appointment on the 20th.

Upon returning home from the GP, I found that Dog had eaten a full bar of Bournville. I’d been gone for literally twenty minutes, at most. Panic stations immediately manned, I dragged him off to the vet to get an injection of abomorphine (a REALLY potent emetic), then sat stroking his back and making generally reassuring noises as he vociferously chundered all over the vets’ car park. Whole bar accounted for – Seriously, it looked and smelled like a patissier with a grudge had iced the whole yard in cheap chocolate fondant – We went back home and sat in the kitchen, him looking terribly sorry for himself and me terrified that he was going to have some theobromide still in his system and have a heart attack. He’s a very old man, in greyhound years (He’ll be ten on the 4th of July) so this wasn’t a stupid fear.

Did not sleep well that night – Every whuffle and twitch from Dog woke me up in a panic.

Next day was the General Election – Tasks do do; Get to the vet to sign my insurance paperwork (To keep that bar of Bournville from being the most expensive that I’d ever purchased), and go and do some democracy. The local polling station is at the end of the road, so I thought I’d do one round-trip; Up to the vet, then back down to the church hall, then home. After the previous day, and the night earlier in the week where I’d been awake for something like 40-odd hours having a bit of a manic episode, I was anxious as fuck for a number of reasons. So, I took along Dog in his semi-official capacity as my assistance beast. Not a joke – It’s all there in my psych notes that due to fairly nasty PTSD I sometimes need to have Dog with me in order to function like a normal human being, and most people are fine with this (He’s lazy unto the point of appearing well-behaved, quiet, doesn’t shed too much, and doesn’t leave my side. The lead is basically for show – I’ve led him through a field of lambs with the only tether being a piece of wool from my wrist to his collar, and it didn’t even go taut once.)

I knew in advance that anyone is legally allowed to take their dog into a polling station (There’s no chance of my dog being a paid shill, swaying my hand to vote for his candidate instead of mine) so I walked in through the newly-opened disabled entrance with him at heel. Only to have his lead taken out of my hands (No asking, just taken) with the explanation of “The other attendant is scared of dogs”. I started to panic, and as I do when on the verge of having a massive PTSD meltdown I saw the path diverge – One path said “Deck the shitheel that’s taken your dog”, the other said “Become compliant and get your dog back”. Thankfully, since I have no choice in which road I go down, my proverbial BIOS sent me to the DOS of total basic obedience, rather than the obscure Linux distro of uncontrollable violence. I’m pretty sure that at this point I went to the bench, took my papers, marked them both appropriately, then got Dog back, since the next thing I remember particularly clearly is sitting outside the polling station with my face in Dog’s shoulder, shaking like the proverbial shitting greyhound.

I made a mental note to go back and correct the attendant (You don’t just *take* a man’s dog, you ask if you *may* take it. Not all service dogs wear the big yellow harnesses. Not everyone’s dog is comfortable being handled by strangers, so you could well get bitten. I can only assume that if a blind person came in avec-chien, then the dog-hating attendant would have to leave the bench. Assume that as the priority one solution next time) but didn’t have the strength to do it. Instead, I just went home and tried not to think about the election much. I failed – Slept from about 2am to 4am, woke up to a world of nightmare.

So, yesterday, the day after a Tory government of only borderline legitimacy took power (That’s a tiny minority, and that’s even with the constituency boundaries largely favouring them), I woke up feeling like shit.

At first, I took the pain in my abdomen to be just the continued saga of this fucking coil. By about 13.00, I was concerned enough that I told Dearest and Best Friend that I might be going to hospital. And then the gastric distress started, and I shelved that idea. Somewhat like a bloke with lymphatic filariasis localised to his cock, first I was pleased, then a bit concerned, then incredibly concerned, then I wished I would just die. For context – First I thought that I was just reasonably disimpacting after what had been a horrible week, then I thought that I had a spot of diarrhoea, probably from the severely dodgy out-of-date popcorn and absinthe I’d had for tea the day before, then I thought that I might be having an adverse reaction to the doxycyclin… By 3am, when I was literally passing nothing but bile, stomach acid and water, every ten minutes, uncontrollably, with so little warning that I couldn’t leave the bathroom, I didn’t care what it was, I just wished I was dead. It hurt (Hydrochloric acid failing to neutralise as it passes through the digestive tract will do that), I was getting cramps from the rapidly-changing pressure and bloodflow in my already-tortured abdomen, I was trying to vomit but nothing was coming up, I was utterly knackered and dehydrated.

Oh, and did I mention that this is on top of terrifying chest pain and heart palpitations after trying to ward off a weather-induced migraine with an ill-advised Sumatriptan at 17.00? I was so ill with that (unable to move, curled up in bed, sweating, shaking, struggling to breathe, vision going blue and grey from lack of air) that Dearest ended up cancelling his night out to look after me. I’ve had bad reactions to Suma/Imigran before, but never this bad. Suffice to say, since I genuinely thought I was going to die, I am not taking it again.

So, yes, by 3am I wasn’t sure if it was going to be the heart attack or the dehydration that would kill me first. Drowning myself in the bath was a close third.

I must have got to sleep with the aid of a lot of morphine (Good for both the pain and for stopping the bowel from moving) and diazepam (good for slowing the heart rate and relaxing the intercostals, letting me do a few breathing exercises) because according to Dearest I was singing the Russian national anthem very loudly at about 4am, but he thought it would be unethical to wake me up since it’d taken so much effort for me to get to sleep in the first place.

I woke up at about five, had a brief conversation with Dearest (Reassuring him that I was all right, and not actually about to drive a military parade of rockets on floats down Briggate), and have returned to my nest on the chaise longue.

Today has infinite chances of being better than yesterday. In a bit, I’m going to see if I can drink anything without feeling as if my heart is being stepped on, have another shower, ring NHS Direct to see if I should be worried (And to ask whether I can just stop taking the doxycyclin, since another week of this would literally kill me since I can’t eat or drink), and bizarrely hope for a migraine (The surefire sign that I’ve metabolised the Imigran out of my system and that the chest pains will stop).

So, yeah, my awesome Saturday plans are “Have a migraine” and “Try to drink some ginger beer.”

Then, Sunday is the cricket, Earnshaw willing.