The joy of duplicates

Somehow, last week managed to be a great week. An MOT pass for my bike, a theory test pass for me, a stunning red kite sighting at the swim (through that amazing glass roof, that floods the pool with daylight) and a bit of light work done in the garden – meaning that there are now pots of seedlings on every window sill.

And yet, this week, reality has reasserted itself. Having probably my worst episode of suicidal ideation since 2014, when I was sectioned. The physical pain isn’t helping.

I’m trying to spend a bit of everyday in the front garden with my next door neighbour, since that forces me to be out in the sunshine and be supervised. And, if nothing else, the dog likes it.

I also have my second last University deadline in week. The work is inane and I’m struggling to fill the word count but it’s distracting me from the bad thing.

In terms of my earlier scale, this is somewhere between a type III and a type IV on a background of very distressing and insistent type II.

I may have to codify a type IIb, which is “I am keenly, physically, aware of my pulse and where all of my arteries are, for some reason especially the ones in the top of my feet, my femoral, and my radials.” Since I’m getting that too.

I’m safe, just miserable and not sleeping properly. Haven’t got to sleep until gone five for the past few days, and still getting up at about ten. Not good for me, and feels like I have no control over my sleep cycle, which is distressing in its own right, especially since waking up means spending two to three hours lying completely still, semi-conscious and confused and in a lot of pain, before getting the mobility to take my morning medication.

And the pharmacy have been late with my medication again this month. Supposed to be due yesterday, they swear that they sent it off this morning, so I’ll have it by Friday. It’s fine, it’s not like I need my medication to function at all and have anything approaching a quality of life, right?

Fluffy flotsam

Actually, today came good.

  1. Did my taxes first thing this morning, so am now up-to-date on the 2014-2015 financial year.
  2. Picked up my prescription without any hassle.
  3. Got, if not a good result at the GP, at least a non-horrible result, and Dr L2 is really nice.
  4. Best of all, got a post-illness kilometre PB – 14.07 freestyle. Doing 39 racing turns in a row will make you dizzy though.

Happy Goth Day!

It’s Goth Day, during Vegetarian Week, in EDS Awareness Month.

So I feel really celebrated.

And yet, the pharmacy forgot me again so I have to wait until Tuesday for my medication to arrive. I phoned them up at about midday to ask where my meds were which were meant to be delivered “by the end of the week” but which hadn’t arrived by 4pm today. And then they arrived at about 5pm, sans the slow release morphine. Another classic fuckup by the pharmacy.

This annoys me – The pharmacist himself is amazing, but communication between the pharmacy and the surgery is nonexistent. And, again, the pharmacy is well within a hundred yards of my house. I don’t want to need a new pharmacy, but after literally a year of them fucking up my prescriptions, I think I do.

Shine brightly

Well, after all that worry, today went fine.

The doctor I saw (Dr RS) was happy to increase my diclofenac (70 tablets instead of 56, to cover for pharmacy fuckups), to very slightly increase my diazepam (To eight pills a month instead of six), decrease my laxido (30 instead of 120), put my suppositories on my repeat prescription for about the 90th time, and, best of all, to not push to decrease or remove my MST. She had the usual caution – She said she “didn’t like” diazepam, but my point that I didn’t like it either, it was just better than an A+E admission, was enough to put that to rest, and my bluntly asking “Why?” when she said that Dr Rpm had thought it was a good idea to take me off MST, with the corollary of “I’m not in pain anymore. I really like not being in pain.” has set her mind at rest that I’m not in some kind of terrible opiate abuse spiral.

Thankfully, she’s basically just a really nice person, and I’m glad that I got her today rather than someone more idealogically driven.

It then took literally a dozen trips back and forth to the pharmacy to get my prescriptions sorted out, but now I have them all.

Utter disaster, forestalled for another month.

Interestingly, my Oramorph this time came in an unlabelled bottle, without a child-lock cap. Probably actually useful, so that I can open the bottle without needing help.


For whatever reason, a load of the stuff on my repeat prescription has been taken off. And even though they’ve had literally two weeks to arrange it since I starte hassling them, my prescription hasn’t come in on time, again – My prescription NEVER comes in on time. I always ring up, and the pharmacy says “It’ll be ready on Thursday” and then I ring up on Thursday and they say “We sent it off today” and then promise to deliver it when it comes back, and then a week later I phone up again to say “Where’s my prescription?” and they say “Oh, it’s not come back yet, we’ll have to chase up the surgery…”

Basically, it seems that there’s a massive cock somewhere between the surgery and the pharmacy (Which are only a hundred yards apart) and that there’s no way to set up my repeat prescription to do what it says on the tin – To whit; Every month, when it’s due to run out, a van containing all of my drugs turns up at the house, and then I have my drugs.

So, I’m off to London in a couple of hours, and I’m going with basically no diazepam. Considering that I’m going to be in a very stressful situation, have to do a lot of sitting upright and walking, and will be spending four hours in the car, I can see this being an issue.

On the other hand, I’m sitting in the living room at my best friend’s house, there’s bright sunlight streaming in, my gladstone bag is packed, I’ve had a good breakfast and it looks like a lovely day to travel. See you in London.

Pain upon pain

I’ve mentioned a couple of times that I sometimes self-harm, largely as instant pain relief (This is why I want to get some faster-acting painkillers, so that I don’t end up resorting to the scalpel), and yesterday’s complete shoulder-girdle pop (Acromiclavicular, sternoclavicular, glenohumeral, scapulothoracic… argh) was enough to induce an episode. Unfortunately, it was enough to induce an episode even after filling up on morphine. The result being a lot of very deep cuts that I didn’t really feel very much of, and needing to limp over to the pharmacy (On wrecked hips, making matters worse) with my cane in my off-hand (due to my left shoulder being in a million pieces, and my left forearm leaving a trail of blood almost all the way from my door to the shop) to get bandages and antiseptic.

Arriving at the pharmacy, though, I obviously couldn’t just get the bandages and leave, because I was bleeding all over their floor and obviously shaken up and with one hand almost completely grey and an immobile shoulder. I was sat down in the consulting room, wiped off with alcohol, asked politely if I was on any psychiatric medications, then allowed to bandage myself up and go home.

The irony being that by the time I’d wrapped up, the painkilling effect of the damage had worn off, and I was just as knackered and sore as I would have been otherwise – In addition to the pain of having to go out and buy all the sodding antiseptic.

Ah well, rheumatology tomorrow. In preparation for that, I rang Stanmore today to see if they had my referral, from either UCLH or from my GP, and they’ve not got me at all. So it’s honestly starting to look like all the London stuff was a waste of time and effort on my part, sine nothing has been done about it. And I still have to fight tomorrow to get imaging on my shoulders and hip. That’s the imaging that I was first told that I needed in July and November, respectively.

The wheels of bureaucracy do grind slow.

New Year, New Meds.

So, yesterday was my first GP appointment of the new year, with Dr R. I’d seen Dr R on the 23rd, and he’d told me to basically take more morphine and look after myself, which was very reasonable, so seeing him again yesterday was actually a relief – He’s not superstitious about muscle relaxants, for starters.

First step was to put me back on the irregular diazepam.

Second step was to get me genuine, adult-sized suppositories – The Nice Scottish Pharmacist did have a bit of a giggle about my having aged terribly over the last couple of weeks.

Third step was to replace the 500mg of naproxen twice a day, which I’ve been on for two years, with 75mg of diclofenac, twice a day. I used to take diclofenac many years ago for back pain, and I really liked it then, and I hope that I’ll like it again now. If nothing else, I always get an amazing night’s sleep after taking it.

And the final step was that Dr R has taken over responsibility for shouting at Stanmore for me. So I can just get back to looking after myself. All I have to do is bring him in a photocopy of the London letter on Monday, and he’ll do the rest. Magic.

So, 2015 looks hopeful so far.