Sometimes I Hate the NHS

Don't get me wrong, I'm ecstatic that we have free healthcare. I've heard enough horror stories of other countries to be damned grateful for what we have. But having said that - it could be so much better. I mean, it may not be free in other countries but they also don't have to wait six months to see a specialist.

Anyhow. I eventually managed to get to an appointment with my GP for the first time since seeing Snowdon. Although it wasn't technically my GP, just the locum who was on duty. Turns out that although Snowdon talked with me about seeing physios at his hospital and we discussed occupational therapy and talked about how I should probably be referred to Dr Ho's new clinic at the Manchester Royal Infirmary as she was more of an EDS specialist...he'd not actually referred me to any of these places. I asked my GP if he could refer me and he just didn't seem sure about any of it. Sent me away with a 'scrip for Nortryptiline, as Snowdon suggested, and that was that.

Then this morning I got a Choose & Book letter through. Now, I'm sure we all know that Choose & Book doesn't actually mean Choose, but it usually means I at least get to see what's available before picking the only available appointment. Not so this time. This time I have a 'selected clinic' and these instructions:

'Your selected clinic has been notified of your need to book an appointment with them. They will contact you to agree an appropriate date and time for your appointment.'

Wonderful. Now I get to wait around for them to call. Which they'll probably do whilst I'm asleep as I can't anticipate when they'll call and can't force myself to stay awake all day everyday with my sleep schedule so fucked. Or quite possibly I'll be awake but too much of a bundle of nerves to answer the phone - most times when it rings I ignore it.

I like these things to be on my terms, dammit.

But that's not even what I'm mad about. What I'm mad about is the 'selected clinic'. It's for physiotherapy, but not the physios at Dr Ho's clinic, where I was meant to be referred, or the physios at Snowdon's clinic, who I was meant to be seeing 'in the meantime'. No, I get to go see physios at the mobile care unit.

I've been to this mobile care unit before. It's basically a bunch of portacabins. The 'wrist doctor' I saw there had no idea what he was doing, put me in a bunch of pain moving my wrists around (which subluxed, but he didn't know the word and laughed at me when I tried to explain), didn't listen to a word I said and had never heard of EDS. He sent me for utterly useless tests and bloodwork. I then spent three hours having three nurses - and finally that doctor again - poking me with needles trying to get some blood. I came home with holes in both arms and both hands, a lovely colourful array of bruises, and they managed to get no blood out of me.

Okay so I didn't see any of the physiotherapists there, but I'm not holding my breath that they'll actually know anything about EDS seeing as this is not in any way a rheumatologist or connective tissue disorder clinic. And sending bendies to physios who don't know about bendies is a bad bad BAD plan that has done so many of my bendy friends permanent damage.

New Pills

Antispasmodics are awesome. Seriously. Stomach's calmed down almost completely, only bugging me the tiniest bit if I sneeze or go into hysterical laughter. Which meant I managed to get laid last night, for the first time since this thing started, over three weeks ago. So freaking happy about that. Oh, I was also laughing without being in pain, and it felt really weird, I was that used to laughter being painful.

New painkillers, though, I'm not so happy about. I can't quite work out if they're giving me a tiny bit of pain relief or if it's just that my abdomen no longer hurts and therefore my overall pain level's dropped. The rest of me is still aching and painful (and just after I started typing this my back went super-crazy spasming-pain*) but overall I feel in less pain...I'm thinking that, as with the laughter, I've just gotten so used to abdomen pain that the relief from that feels weird. I think. New painkillers might be helping a tiny bit. But even if they are, the payoff is too much. These are the first pills that have had any kind of effect on me, pain relief or otherwise, and they're making me ridiculously lightheaded, on top of my normal POTS lightheadedness, and have given me such bad dry mouth that I can no longer eat dry food.

But I'm clinging to the hope that side effects and maybe a tiny bit of pain relief means we're on the right track, and that maybe the next step up will be what we're looking for, and that I nearly have working painkillers. :)

Going back to the doctor on Friday, to get a rheumatology referral, as apparently the one I've been waiting on for the past two months never happened. I got a call about an hour and a half after my appointment yesterday telling me that and asking me to come back. This doctor actually checks up on things when I ask her to, and fast, and then bothers to call me and make a new appointment! I love this doctor. I have never seen such competence from a GP before.





*I ran away about a minute after typing that, literally ran up the stairs, screw joint and muscle pain and lightheadedness, and collapsed on the full-body pregnancy pillow on the bed. That pain was so insane, I can't even begin to describe it, but the fact that I ran upstairs to escape it should be description enough. Anyhow, five minutes on my pillow and I was beginning to feel myself again, another ten minutes and my back was fine. Seriously, those things are incredible. I need to stop thinking I can lie on the sofa without dragging my pillow downstairs first.

GP

Finally got to see a doctor this morning. New one, again. Is very difficult to get to see the same GP twice in a row, but would be very helpful as I wouldn't have to re-explain all my problems. Anyhoo, liking this GP as well. She believed everything I said, and didn't balk at the fact that I've been researching my condition on my own, or the fact that very strong painkillers do absolutely nothing for me. She just moved me up to the next strongest without any hesitation, promised to chase up my rheumatology referral that was made two months ago and I've heard nothing about.

And uh, oh yeah, that weird nasty abdominal pain. Checked my urine, perfectly fine, not an infection. Spent five minutes pressing down on my abdomen in various places and going 'is it sore there?' when I was grimacing in pain. She thinks it's just another IBS symptom and gave me a month's worth antispasmodics to try and told me to come back in a month if it's still bothering me. I hope so badly that it's not still bothering me in a month. I can't stand it any longer. I need to be able to laugh and cry again!

Speaking of crying, I walked all the way down to the doctor's and then the pharmacy as Rambo wouldn't get his lazy ass out of bed. Wasn't so much of a problem walking to the doctor's but after her pressing down on my abdomen so much it was screaming in pain and made walking rather...difficult, shall we say? I've been home for an hour but I've only just stopped crying with pain long enough to get on the laptop.

New GP

New GP opened just down the road last week. Went for a 'new patient check-up' thing with the nurse last week and she goes 'ooh your blood pressure's a bit high, we need to keep an eye on that'. Yeah, fair enough, my blood pressure yo-yos up and down constantly. Anyhow, went to see my new GP today, he checked my blood pressure again and goes 'oooh that's ridiculously low that can't be right how are you still standing?' Well, I'm feeling rather faint and dizzy mister and leaning on Rambo to stop myself falling over, that's how. Explained to him about my POTS/POH and we left it a few minutes of me sitting down then tried it again and it was back to normal. Yay me. He's a bit worried and wants to keep an eye on it though, once a week or so. How I hate having my blood pressure taken...

Anyhow, about new GP...uhh, what can I say? He's lovely! Believed me when I explained about my problems, didn't try to argue at all or laugh me out of his office. I love that. All my mental problems of feeling like a fraud make talking to doctors extremely difficult for me usually, but this guy was alright. He gave me some new painkillers to try, which I'm not entirely happy about but at least he's trying, I guess. I just don't see how Co-Dydramol is going to be any help when we already know Co-Codamol does nothing. (Hey, Paracetamol and Codeine don't work, let's put them together in a slightly different way!) Even asked me about a wheelchair as he saw the difficulty I was having walking to his office. Can't give me one yet, as I'm still awaiting a formal diagnosis from the rheumatologist, but insisted that I tell him as soon as I have one so that he can give me a chair.

Benefits and Bureaucracy...Again

Continuing on from last time, I went to see my GP today. She told me, in no uncertain terms, that she was unable to give me a medical certificate from six months ago, and she could not fathom why the ESA people were asking for one now rather than in December when they 'ran out'. She also told me that since they've declared me unfit for work, I don't actually need any medical certificates and she can't understand what they're playing at, but at the same time she wasn't in the least bit surprised as she gets people coming in to see her all the time with ridiculous tales about trying to claim benefits. At least I'm not alone.

I then started crying at her. I'm not proud of this. I just got so goddamned frustrated that I was being sent around in circles when I'd thought that finally everything was actually sorted out for once and got my hopes up. I apologised for it, and she told me not to worry, handed me some tissues, and re-assured me that it wasn't my fault. I know it's not, and I know I shouldn't be crying - I just can't stop myself from crying for silly reasons sometimes. Alright most times.

Anyhow, I'd call the ESA people and have a good old rant at them but my sister's stolen the phone so it will have to wait. Will update later when I've managed to get hold of a phone (and managed to sit on hold on said phone for a good hour or so).

UPDATE: Called ESA people. Explained the situation. They insist that they cannot pay me anything if I don't have medical certificates to prove that I'm unfit for work. What the fuck is going on? They declared me unfit for work, but now need proof of it? They're saying that if I start sending in medical certificates from now that I'll get paid from now on, but they won't be able to pay me for the gap from December until now. I don't get it. At all. Whatso-fuckng-ever. I am ridiculously bad on the telephone though and couldn't argue because I was in the middle of bursting into tears. I so need somebody to sort all of this out for me... :/