Lists v Lupus

I love writing lists, always have. Getting things achieved, ticking them off and giving myself a smug pat on the back at the end of the day.  Some weeks the lists are the only way to get anything done; they motivate me out from under the blanket and away from Come Dine With Me and Escape to the Country.

Today was a good day and I started off with more energy than usual.  It’s fair to say I was positively brimming with great intentions.  So I made a list, quite a long one in fact.

Things to do ranged from the quick and easy ‘clear up breakfast’ and ‘reply to email’ to the slightly more ambitious ‘make soup’, ‘do washing’, ‘sort legs’ (tired shouldn’t really be an excuse for hairy) and ‘put stuff on Ebay’.

This last item on the list was probably the most unrealistic delusional challenging of all, due to the ever-growing stack of unwanted clothes in the corner of the room.  A stack that now looms so large it threatens to permanently flatten the pile of the carpet underneath.

Unfortunately, by the time I’d finished my first tea of the day my ‘great intentions’ threw in the towel and decided to lay down for a rest.  So eight hours later there was only one item crossed off my list.  Not bad you might think until you learn the only completed task on my list was to ‘Make a List’.  At least I did that well.

The important thing to remember (as my husband keeps telling me) is not to get too frustrated; to accept my limitations and pace myself.  Live like a sloth, basically.  I think it’ll take me a while longer to recognise what my body can and can no longer do.  I am however happy to accept that everything on today’s list can always be done tomorrow.  Or the next day.  Or even the day after that.  Or failing that, by somebody else altogether!

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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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