Old dogs, new tricks

I am on temporary reprieve from RA symptoms at the moment, thanks to the ‘roids. Apart from some swelling of fingers and toes, and a certain twinge-iness of the knees, I feel human again. I can even manage something as fiddly as putting on my earrings, something which I haven’t been able to do for a long time because my fingers didn’t work properly.

Now, you’d think I’d be determined to be a better person, eat better, take better care of myself etc. I made enough promises to myself during those nights when I couldn’t sleep because even my skin hurt.

I did mean all those vows, and I am determined to sort myself out diet-wise, stress-wise, health-wise, physio-exercise-wise. It’s just that it’s really, really difficult to remember the pre-‘roids agony. It’s not that strange a thing, though ~ if women remembered the pain of childbirth, for example, none of us would ever have more than one kid.

So I’m going to be in voluntary denial for a while. I’m going to worry about as little as possible, enjoy my food, enjoy being able to walk upright, enjoy being able to hold a pen. I had haddock & chips tonight for dinner. It was… indescribable. When I get back from London in mid-September, the steroids will be eliminated from my treatment. Will the pain return? It scares me.


So excite!

I got a call from the nurse at the hosp yesterday afternoon, telling me they had the results of my blood test… I was a wee bit surprised, considering I’d just spoken to the specialist at length about them earlier in the day, but hey ho, whatevs, I thought, maybe they missed something out. Then she starts reading off a list of things β€” housedust mites, cats, dogs, crabs (the edible kind from the ocean) β€” and I twigged that she was talking about the allergy tests I’d requested. Oddest thing was that they had only taken the blood sample that same morning, so to have the results by 3pm probably meant it had been a slow day in the lab.

So, it turns out that as well as the usual suspects, I am now also allergic to oranges and melons. Eh?

But then she said something was without question the one piece of good news I’d had from the entire medical profession in the last two months: I am no longer allergic to fish.

Tonight, for the first time in about 12 years, I made my cheat’s laksa with about 5kg of fishballs of various shapes, sizes, colours and textures. That first bite was… orgasmic. Think of how good that first sip of chilled Cornish Rattler tastes on a blazingly hot summer’s day in England. Or when you cave in on that impossible no-carbs diet and have a KitKat. Or when you step into the shower and wash off the sweat and grime of another exhausting day.

Tomorrow night, it’s haddock & chips for tea. Can’t wait πŸ™‚

What do you mean, ‘not yet’?

We live in a world where instant gratification is expected as a birthright. Work for something? Wait for something? Deserve something? Wth… I’m here, aren’t I, with my hand out? What do you mean, that isn’t enough?

So: for the last two months or so, I’ve been on various anti-inflammatory meds, pain-killers, a course of anti-biotics, more pain-killers, more anti-inflammatories, physiotherapy, ‘roids… heck, I even got given Valium. Two months. And yes, I know I have a lifetime to expect of more of the same.

I know this isn’t going to be an easy journey, but even so, it was a bit of a jolt to the system when my doc goes over my latest blood test and the ESR result (erythrocyte sedimentation rate, which measures acute and chronic inflammation, including infections, cancers, and autoimmune diseases). A normal score is anything between zero and 20. Mine, after two months of nonstop meds and treatment, is 38. On the plus side, that’s down from last week’s 55 (apparently, I have the steroids to thank for this).

They also did the anti-CCP (anti-cyclic citrullinated peptide antibody) test, which is specific to determine RA (and, from what I can gather, how bad a case you have). A normal score is anything between zero and 17.

I clocked in at 2,005.

As the doc very placidly noted, “there is no doubt that you have RA”. This is when I started laughing. Which I suppose is better than bursting into tears. It’s weird. I know it’s all real, but at the same time, it feels distant and discombobulating (I’ve always wanted to legitimately get that word into a sentence, woohoo) and like it’s happening to someone else, not me.

A promise is a promise

So: fascinating insights into RA & Brushing Your Own Hair, Shaving Your Own β€˜Pits and Doing Up Your Own Bra.

The short version is that it’s bloody hard. Sometimes impossible. After weeks of paying someone to wash and blowdry my hair for me, I went and had it straightened over the weekend because often, I can’t hold a hairbrush, never mind a hair-dryer. My ‘pits have embraced their German ancestry for days on end because I can’t lift my arms high enough to shave, never mind twist my head that far round to see what I’m doing and, ideally, not slice open an artery, major or otherwise. And as for the bra situation: they don’t make enough front-fastening bras is all I can say β€” 20 minutes of tears, snot and frustration is too long to spend on anything.

And it hits you: this is why old people wear slip-on shoes and clothes with elasticated waists. Why the blokes embrace flatcaps and the ladies get their hair permed into silvery blue helmets. Why they may sometimes smell faintly of wee.

The range of ‘self-help’ gadgets for RA sufferers is fascinating and deeply alarming. Did you know you can buy a long-handled hair-washer? And an under-toe washer? As for the toileting aids… I pray fervently to any deity who’ll listen that I never get bad enough to need them. But if I do, the Bottom Buddy is at the top of my wish list, ta.

How quickly we can forget

I’ve been on steroid medication for the last five days; a short-term course to help me get through the time I’ll be in London with Jaz in early September… I’ll be a fat lot of use if I couldn’t even get up out of my seat after the flight over.

The ‘roids have had the amazing, almost immediate effect of eliminating about 80% of the pain. So much so that I have to constantly remind myself that they haven’t actually cured anything and that once the course ends… I’m back where I was six days ago. But how lovely it is to be able to stand up and sit down without my knees screaming, to get into bed and lie flat on my back and realise that as long as I keep quite still, nothing hurts…

But then I’ll wake up at 2am with one or both of my shoulders in spasm, my fingers bloated and my hands curled up with cramp and pain… This morning it was an interesting new one: the ends of my toes, those final joints, throbbing and sensitive to the touch. It’s a good reminder to myself that I’ve still got a ways to go β€” but I’m on my way πŸ™‚

But first

Dancing Madly Sideways is actually the title of a song by Marcella Detroit (the other half of Shakespear’s Sister), still one of my favourite songs of all time, more than 10 years later. I couldn’t tell you the lyrics (except maybe for the lines “I’m just thinking, wishful thinking, where’s this going”… and “I’ll be living in my submariii-iiiiiiiine”) but it has one of the best intros ever: it takes you a while to figure out what’s going on, but in my head, it’s the sounds of a hot summer’s afternoon in England… birds twittering in the garden… someone’s doing the washing up (for some reason, it’s a woman in an old-fashioned dress and pinny, like the film Land of Hope & Glory), bees are lazily buzzing… a pause, then slowly, the opening notes of the song infiltrate, then Marcella’s voice (so controlled, so pure) fills your ears. Lovely.

Are we there yet?

In the last few weeks ~ from 15 July, 2012, to be precise ~ I have frequently marvelled at how quickly it is to go from a normal, average, day-to-day existence to one in which constant, near-crippling pain changes everything.

I’d got slammed in the temperamental lift doors at my mum’s place in KL on the 30th of June, the day I arrived with my two girls for what I thought would be just a lovely two-week break. I spent the rest of our time there in varying degrees of discomfort, which I figured was only to be expected… of course I’m in pain, I got slammed in lift doors, didn’t I? Many heat patches from Tiger Balm and Salonpas were put to use, and quite a few Panadol Extras.

The day after we got back to HK ~ that 15th of July turning point ~ my right arm went into major spasm. I spent a sleepless night seriously wondering if I could possibly have dislocated my shoulder and just not realised (hey, get to my age before you judge me) and thinking about shipping myself up to A&E. I saw my GP at about 9:30am and pooh-poohed her suggestion that I take the next three days off work… I still have the email I sent people at the office saying what a ridiculous notion this was and of course I’d be back at my desk the next day.

I spent the next three days mostly asleep from the cocktail of meds I was on, and in severe pain when I was conscious. The pain would also transfer: from arms to shoulders to neck to hands to knees to feet and back again. There were times when it felt as if my skull was literally bulging when a spasm hit.

Finally, after a month of not getting any better despite more meds and physiotherapy (which really helps but, so far, more for short-term effect), I had an MRI and blood test. The first showed degradation of cervical vertebrae (partly from age, partly from multiple traffic accidents when I was younger, when I never really got properly looked at or treated for neck injuries).

Then of course, that RA blood count. Half of me was relieved that finally, here was an explanation for the last four weeks… I think that must be the Catholic half (“thank god, no one can accuse me of making this all up! See you tossers, I wasn’t just acting up for sympathy!!!!!!!”).

So right now it’s that pain; that crazy, crazy pain. I honestly thought giving birth was the worst I could ever experience and perhaps it was, but at least I knew it would end sooner or later and I’d have a lovely baby when it was all over. Today, again, my left knee is grinding like an exotic dancer against a pole, my feet are swollen like balloons and my fingers like cocktail sausages… On my worst days, I have looked like Stephen Hawking minus his wheelchair (politically incorrect? Pfft. I’m in pain, I can say what I like).

Next time: RA & Brushing Your Own Hair, Shaving Your Own ‘Pits and Doing Up Your Own Bra