It’s a little bit late but…
Happy New Year! Let’s hope it is a happy and healthy one for us all.
Firstly I should apologise for the abscence of blogging last month but the truth is December was a hard month for me, both physically and mentally: Physically, in trying to keep up with the present-buying, card-writing, present-wrapping, family and friend visiting lark, and mentally, in thinking too much, reflecting on life with this disease and making a few hard realisations, topped off with a case of Diazepam blues I think.
The good news is that the Diazepam has sorted out my neck and back spasms, meaning I am much more comfortable than before, even if the pain hasn’t completely gone away. It was only a ten day course of 5mg three times a day, but still it seems to have effected my mood and left me crying at the slightest thing and sleeping almost constantly. I’m just about over the crying every day stage and my mood is definitely improving – I’ve had drug induced depression before (with Mycophenolate Motefil / CellCept) and I can tell you it is not pleasant, even though you know what is causing it. I’ve since been told that I should not just have stopped the Diazepam, but gradually reduced the dosage – but it said nothing of the sort on my label. Ah well, the damage is done, and I slept and cried my way through Christmas, depsite it usually being my favourite time of year.
Physically, I’m caught somewhere in the middle once again – I’ve been better but I’ve also been worse, so I have to keep telling myself that and ‘counting my blessings’. I’ve had a few days in the past weeks where I’ve needed a lot of help getting out of bed, chairs, cars, down stairs etc due to my painful hips and stiff, swollen knee & elbow. I even managed to get myself stuck in bed one day, until mid-afternoon (yes I know, you’re probably thinking there are worse places to get stuck, but anywhere is bad enough when you’re desperate for the loo and that’s a dignity I’m not about to give up just yet!). The worst days come after busy days or days in the cold; no surprise there – it’s a balancing game of trying to enjoy myself and then recuperating after doing so.
But there have been signs of improvement too (hooray!) – there are days I wake up and my knees look less swollen, or my elbow bends a little bit further and I can reach a bit higher with my bad shoulder. These improvements are very erratic and can disappear even later on the same day not to happen again for another week, but still, they are improvements and I’m convinced that my body is slowly playing catch up with the positive effects the Tocilizumab is having on my blood test results. The only problem is, that this can lull me into a false sense of security and on the times I’ve attempted to go out and push myself, more than I have for quite a while, I’m soon hobbling and struggling along, and you know what – limping is hard work and it hurts! It’s almost as painful, realising that you’re not doing quite so well as you thought you were.
I have my fourth Tocilizumab infusion in a couple of days; people have ssuggested I need a dose twice a month but that’s up to the medical pros to decide.
Hidradenitis-wise, I’m not a happy bunny. After my wound healed so nicely, it seems I have developed a couple of tiny sinus tracts just below the scar. My body sure is determined. I’m still waiting to have surgery on number 2 and could have numbers 3&4 by that time. Finger’s crossed that they heal of their own accord. Only people who have suffered the condition themselves will understand how unpleasant and uncomfortable these things are. I’m convinced it is tied in with the flare somehow, as I had a bout during a previous flare that disapapeared once the Still’s was under control – just my hypothesising.
So I think that’s it for me for now, I’m slowly getting back to my positive self but there are still a few things that will always be there, niggling away in the back of my mind. Maybe I’ll talk about those another time.
Here’s to 2012 being Still’s free,