In the same week as I get a bunch of sucky letters from Bupa informing me that my annual limit for items such as blood tests has already been “exhausted” and I therefore owe them HK$4,000 and rising; the same week as I get stuck in a newly-replaced lift at the office for over an hour with a security guard who is convinced he can magically fix things from the inside by frantically hammering at every single button with both hands; and the same week as some scum-sucking, pond-dwelling, bottom-feeding mofo jacks my iPhone from a closed, zipped pocket on the front of my handbag, I find out that there are such things as “RA nodules”.

Nodules? NODULES?? Now, nodules?!? Wth.

In other news, Izzy passed her Wilton cake-decorating course with flying colours today; for her final test, she made a cake, iced it and then decorated it to demonstrate her mastery of the techniques she’d learned, including writing. After dithering between ‘Happy Birthday’ or ‘Congratulations’, she wrote ‘Mum’. Now that’s a warm, fuzzy feeling 🙂


Wood for the trees

Been back in HK for almost a week now. I don’t want this blog to become a litany of every ache and pain and whinge and moan and complaint, but I do want to it to be a frank, open and honest record of my experience with RA… mainly because my recall has apparently gone to sh*te. Never mind a memory like a sieve, mine’s a colander.

So: worst jetlag ever. I’ve not been able to fall asleep until gone 3-4am since returning (5:30am on the first night after I got back) so I’ve been stumbling around in the throes of sleep deprivation. Good news: Stilnox. My doc assures me that it’s fine to take in addition to the one billion other meds I am throwing down my throat on a daily basis.

New (!) ailments to record:

  • Acute conjunctivitis which seems to have spontaneously developed overnight; this morning, I couldn’t even open my right eye because of the swelling and the general gumminess of my eyelids, blargh.
  • The nail on the second toe of my right foot has turned black, after I stubbed it once on a wooden stool, once on a table leg and then caught the nail on the inside seam of my jeans (I know!) while I was getting dressed and promptly ripped the whole thing almost completely off. Blargh again.
  • Blood pressure is raised. This worries me because it’s always been a point of relief (and pride) that no matter what other health issues I’ve had, my BP has always been reliably normal. Is it a side-effect of my meds? Or HK + stress?
  • Some tightness in my chest. Side-effect? Or the utter crap that passes for air in HK? Seriously, we aren’t meant to be able to literally see the air that we breathe.
  • Underlying headache and fatigue. Side-effects? Or again, HK + stress? Who knows.
  • Almost forgot ~ on way to rheumatologist appointment a couple of days ago, the taxi I’m in gets rammed by a van trying to push into our lane. On the highway. At speed. My thought on impact: “Omfg I’m so over this shit.” Fortunately, no one went home bleeding and I still got to my appointment on time. Result!

The one upside of all this is that when a symptom abates even just a little, the surge in my mood is unlike anything I’ve ever experienced before; ‘euphoria’ would be an overstatement but it comes close. I feel as if I should apologise for the insane rollercoaster of mood swings and emotions, but then I think, why? (And hey, just to keep things fun, let’s throw in pre-menopause and bonkers hormones as well! Woohoo!)

I hate all this. I hate feeling less than myself. I don’t want to be defined by RA. It’s only been a few weeks, but it’s already been the biggest mindf*ck ever.

I want to say something witty about molehills, mountains & Mohammed

I’m sure there’s a really good joke in there but right now, I’m so tired I could fall over. I’ve been in England since the beginning of the month to settle down my daughter before she starts at London College of Fashion in October, and so far, it’s been a really good trip… exhausting, stressful, but with lots of laughs and lots of amazing friends. All of them have, in a heartbeat, said they will look out for her and “be there” for her if ever she needs anything; it made me proud, it made me relieved, it made me want to cry to know I have such wonderful people in my life.

The meds have been (so far and touch wood) working well, although I have recently begun to have the occasional grinding knees and swollen fingers/feet, I think because it’s been a particularly strenuous few days rushing around and carrying heavy bags up four flights of stairs to my daughter’s uni accommodation.

But even with all that, it has struck me how much happier and calmer I have been in general (admittedly, not being constantly in physical agony surely has something to do with it ha ha). As a silly project, I started taking a photo of myself every morning since the beginning of the year; maybe I knew subconsciously back then that big changes lay ahead. What strikes me with each new photo is how old and how tired I look. But one which I took just a couple days ago… my face is different. I seem ‘lighter’, less weighed down.