Sunday, 10 April 2011

Forty Winks

I am feeling incredibly frustrated at the moment. My body seems to be packing up each bit day by day. Could it be just a flare up or have my joints decided it’s time for some more rituximab? (which I’m not booked in for another 7 weeks). Either way, it’s driving me insane. I have barely slept through the night for a couple of weeks. I think the lack of sleep is what is most frustrating. I toss and turn from around 3am then finally decide to get up around 5.30. I simply cannot lie and star at my annoying walls anymore. If I get up and move around sometimes it eases the pain. Sometimes it doesn’t. Either way I am awake at 5.30am with the whole day ahead of me. There is not much you can do at 5.30am, did you know that?
My neck is creaking, my shoulders are grinding, my wrists are throbbing and my knees swelling and there’s pretty much sod all I can do about it. Maybe having work to do is taking its toll after doing so little for so long. But there isn’t a chance in hell I’m going to let the pain deter me from working again. Despite the fact I want to throw myself in a whole several times a day, I am the happiest I have been in a while knowing that I have achieved something in my day.
As the clock strikes 6am, I am usually on my first (or second) coffee. I know it’s not necessarily recommended to drink coffee when you have RA, but really what are you allowed to do without criticism from someone who tells you its wrong or makes it worse? My morning coffee gives me a little caffeine buzz and in combination with the release I feel when the painkillers kick in, for a short while I feel ready to face the day. It’s frustrating being alone and awake at such an unearthly hour. I never really like being alone, I like to know there are people around or at least conscious.
I get to the point around 8am where I don’t really know what to do with myself if I don’t have work to do. My emails are already checked by then, clothes are already picked for the day and I am running out of tasks. I then create tasks to keep me busy until around 11am when I realise I am exhausted and have to return to bed to lie down. If I have things to do, this keeps me away from my bed. It’s very hard to ignore the calling of soft, comfy sheets and the chance to rest my aching joints when you have little else to do.
What I don’t understand is why you can only take painkillers every 4 hours... when they only work for around 30 minutes (for me anyway). I wait the long 3hrs 30mins for my next dose knowing that it won’t really make a difference. It’s almost like I take them for the sake of it just on the off chance it will provide some release. Bloody pills... That probably makes me an addict in doctors’ terms but I’ve got other things on my list to sort at the moment.(Plus they keep writing me prescriptions for the damn things).
The frustration of not having a normal sleep pattern is exhausting, and I feel sorry for whoever goes through this (for whatever reason). There is nothing worse than tossing and turning, knowing the night has ruined the following day before you’ve even got there. The more you think about it, the less likely you are to sleep as well. Then you get into a never ending argument with yourself to ‘just bloody sleep’. I try the usual things, reading etc but trying to read a book at 3am just makes me even more angry. Or I actually start to enjoy the book and can’t put it down, which defeats the object.
I do not wish to take sleeping tablets or anything else to knock me out; I just want to sleep... sleep when I am supposed to be sleeping. Not during the day or napping when I feel tired. Just a full eight hours a night would be dandy. If you’re listening subconscious, do me a favour and sort it out or else we will be having serious words soon...


  1. hanging there, hope the treatment will reduce that level of pain and amount of affected areas. This is a tough challenge to go through and i take my hat off to everyone who lives through and stay strong. Loss of sleep is frustrating indeed, maybe writing all those endless thoughts in your head down could help. Be brave!

  2. That is sad. I hope your meds will eventually work as well for you as MTX and HCL has for me with a little help from Arthrotec when needed. Us rheumatoid rebels have largely come to terms with our RA and many of our group are severely disabled. Nevertheless we still have fun and refuse to complain. A wonderful bunch. LAUGHTER IS THE BEST MEDICINE.