Pointless questions and shiny new drugs

Had my twice-yearly Lupus MOT yesterday, and as ever I went in armed with plenty of questions and came out with even less of a clue.  Realistically low expectations successfully achieved again.

The annoying thing was I actually look forward to these appointments, bizarre as that may sound.  After months of pain there’s always a sense of hope to be had when speaking to someone in the know; in this case, it’s my rheumatologist.  Also known as my go-to dealer with a prescription pad offering a choice of pick-me-up injections and ever stronger pills and drugs.

So armed with a pot of warm wee and my kindle I trotted off to the hospital with a slight bounce to my hobble.  Breaking with NHS tradition there was no queuing for me that day.  I was whisked onto those weighing scales (I wish they’d let me take my boots off, they’re really rather heavy) and into pole waiting position within minutes. So far, so good.  My positive attitude went up another notch.

“So, how are you feeling?” he asked.  What an unoriginal question, can’t these doctors at least make the effort to jazz it up a bit.

“Not great, tired as usual.”  My standard Lupie reply.  Then I realised I best seize the moment, so I got into my stride. “Actually, I’m continually exhausted, I struggle to stay awake and I’ve had to give up my job.  I’ve got horrible pains in my arms that leap from joint to joint, my bones feel bruised and my skin is too sore to touch.  I recently spent two days being prodded and poked by four different hospital departments and I seem to bleed at the drop of a hat. Oh yes, and my hips still hurt when I walk.”  I was quietly pleased with this synopsis, especially given the diminishing state of my memory.

“Well, your bloods aren’t looking too bad, have you been overdoing things perhaps?” I gritted my teeth.  Have I been over doing it? Hmmmm, let’s think.

(In the words of Craig David) I went swimming with sharks on Monday, scaled the side of a mountain on Tuesday, entered an Iron Man triathlon on Wednesday, base jumped the Shard on Thursday and wrestled a tiger on Friday.  The weekend was mainly a quiet affair.  Just a few body pump classes and a bit of caber tossing up North.  No, I don’t think I’ve been overdoing things at all.

“I’ve barely left the house,” I said, “I did, however, clear out a kitchen cupboard last Thursday (after the Shard jump) and it took me 5 days to recover.  Does that count as overdoing it?” No, I didn’t think it did either.

You see, here’s the frustrating thing about this shitty little disease: bloods tests can often lie. On paper I shouldn’t be feeling any worse than I did before, but in reality, I feel like crap, I hurt all over and staying vertical is a perpetual struggle.

The doctor’s solution on this particular visit?  Firstly a possible new diagnosis to add to the list (fibromyalgia) and the suggestion of some different drugs to try.  Part of me was rather pleased to make a bit of progress.  Part of me was thinking ‘Jesus, how can I possibly consider this progress and why on earth am I pleased?’  But that’s the nature of the beast I guess; sometimes it’s just nice to have a new name to put the pain.

So next up to the table is Azathioprine, an immunosuppressant drug used to prevent organ transplants from being rejected.  From my so far limited research, it works by suppressing or reducing the strength of the body’s immune system.  In the case of Lupus this is meant to help calm down the pain and fatigue.  Of course, the downside of suppressing or reducing the strength of your body’s immune system is that it also makes an already defenceless body even more susceptible to every blinking germ, bug, and virus that’s floating around.

As far as I can see it’s a toss-up between ‘exhaustion and pain’ v ‘hot and cold running infections’.  What a cheery choice to make.

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Letting sleeping dogs lick and lie

Today my body refused to do as it was told. Logic and parenting instincts told me I really did have to get up when the alarm went off at 6.50am, but my arm still hurt after its stabbing yesterday and my head appeared to be glued to the pillow.

Any grand plans I might have had that day went right out of the window. Nothing unusual there. I ended up sitting in a chair in the window, nodding off in the sun like an old woman. Or a cat. When my limbs started to contort to the shape of the furniture I accepted defeat and ended up on the sofa.

Totally impossible to stay awake at this stage of the game; I hit that metaphorical wall and disappeared deeper under the blanket. Chronic fatigue is like being injected with anaesthetic. One by one, my limbs become dead weights as ‘sleeping serum’ seeps through the body and knocks you out. Bloody horrible feeling, not dissimilar to being encased in concrete, I should imagine.

With his chances of a trip to the park now ranging from slim to none, the dog gave up pacing the room and settled down next to me. He stretched out on the sofa and methodically licked each and every inch of his fur clean. Pretty sure this was his payback for the lack of a walk. The noise of the licking was like the drip, drip, drip of water torture, but I didn’t have the energy to bat him away with my foot.IMG_8725

Interesting how the dog still felt it important to look presentable, even if no one was going to see him that day. Couldn’t really say the same for his now comatose owner. I’d already encountered plenty of people that morning and had yet to brush my hair.

Not much else happened from here on in. I had a dream that I was desperately trying to get to sleep but was in too much pain. I woke up with a start to find I was crushing my poorly arm; it now hurt even more. The dog was patiently sat there, staring at me. I staggered out for the school run and a few hours later was back in bed. My hair remained much the same.

Some days you really just have to set your expectations low. Very low. Or better still, horizontal.

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Vampire nurses and stubborn veins

Really exciting day lined up: I’m getting my bloods done.

With no appointment booked it was a case of turning up and queuing up. The waiting room, as ever, stank of old people, wee, and misery. Just as well there were no free chairs; there’s only so long you can wrinkle your nose and hold your breath. Far better to sit out in the corridor, watching the world and their sickly mother shuffle past as you repeatedly check a ticket counter that refuses to budge.

After all these years of being stabbed, drained and tested, bloods don’t usually bother me. Following my recent stay in hospital, however, when three separate doctors left my arms black and blue for weeks, it appears my body is now somewhat reluctant to play ball when offering up vital fluids.

“My, my, haven’t we got small veins,” said the nurse brusquely, as she pinched, prodded and slapped my arms a little too enthusiastically for my liking. She was obviously expecting said veins to leap to the surface and present themselves, like lambs to the slaughter. They refused to come out of hiding. She wasn’t impressed.

“Perhaps my veins don’t like you.”  Is what I’d like to have said, if I wasn’t restricted by good manners and the knowledge that the vampire nurse was brandishing a bloody great needle with my name on.

With the customary “just a small scratch”, she punctured my skin with all the grace and care of a stampeding bull. I swear my backside cleared the seat by a good couple of inches, causing the now embedded needle to jump around in my flesh. I yelped (in my head; stiff upper lip and all) and glared at the top of her head. Wretched woman. Had she used a Dyson DC39 to suck the blood out of me I don’t reckon it would have hurt much more.

“That was really painful,” I wailed when the damage was done. I waited for the reprimand but instead her face fell and she looked genuinely gutted. “I’m so sorry, I don’t know what I did differently.” She looked flustered.

Well, didn’t that make me feel guilty as hell. I ended up apologising to her for my discomfort: for my tiny, uncooperative veins; for leaping from the seat; for causing the needle to move; for my pre-existing pain having made it an altogether more unpleasant experience – for both of us.

By the time I slunk out of there I’m pretty sure I’d taken enough of the blame to restore her faith in her own needle skills. At least I hope I did, or God help Number 88 in the queue.

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