Dancing on the ceiling (not)

A friend (much loved, deeply respected, frequently mocked and taken the p*ss out of) fought colon cancer a few years ago, and at one point used the words ‘bravely battling’ to describe his struggles. Publicly, we took every opportunity to poke fun at him for this (“so drama!”). Privately, we all marvelled at his continued humour and strength in facing that most frightening of illnesses, and saluted his courage.

Today, I am not quite as bravely battling RA (or, as I call it in my head, “F*CKING RA”), with the Big Black Dog of depression nipping at my heels. When my daily dosage of Plaquenil was doubled and my Methotrexate increased by another 5mg per week earlier this year, the RA specialist arranged for me to have baseline vision tests (between them, Plaquenil, Prednisolone and Methotrexate can affect eyesight).

Today, I went back for Part II of the check-ups, and the results of various horrible tests were not so good: I have ‘pigment leakage’ in both eyes, usually an early warning sign of glaucoma. They want to see me back in a year (!) with the proviso that if I have any unexplained blurred vision or pain in my eyes, I need to go back immediately.

Hopefully, of course, everything will be carefully monitored and all preventative steps and corrective treatment will be administered if necessary (and in time). I’m trying hard not to feel sorry for myself, but all I want to do is climb under the covers and bawl my eyes out.

I have been slowly cutting back on the Pred, though, so am now on 3mg a day as of today. My hands have slowly been getting better (I can almost hold a pen and write almost legibly again, woohoo) bar a couple of days like on the train up to Inverness recently — I guess the physical exertion of dragging a case through the crowds and up and down stairs to get from home to Euston took its toll, and my left hand, arm and shoulder were in screaming agony.

I’ve also been using a new cream called Flexiseq (the name still makes me chortle) every night for about the last 2-3 months, which — it claims — is absorbed through the skin directly into the joints, where lipids or something help to plump up the cushioning/fluid/whatever. I can vouch for its efficacy; the swellings on the joints in my right hand have gone right down. The pain almost completely stopped within a couple of weeks and while I haven’t regained complete bendability in my fingers, I can at least do most things again; huzzah.

Actually, it is the fatigue which has caught me off-guard. I’ve always believed that while my general fitness is rubbish, I could walk for miles… our Scotland trip knocked that fallacy on its head. I can still walk, I can still do things, but I can only handle a couple of hours a day at the most, and then I’m pretty much wiped out. When we first got to Mud Island last August, I’d thought the tiredness was because I was finally paying back the sleep debt accumulated over decades in HK… but this isn’t just sleepy, it’s bone-tired.

RA is like having the rug pulled out from under your feet. You’re flat on your back, winded, in pain, and wondering when you should try to pull yourself back up again. For now, I’m just going to lie here and admire the ceiling.