So Friday will mark the beginning of my third session of Rituximab. My thoughts on the drug are quite positive so far, although I still can’t decide if it’s the high dose of steroids I’m still on that are making the difference. It will be interesting to see, as all being well I will be able to reduce the steroids again after this treatment.
As I’ve mentioned before, pain has come back barging its way into my life recently. Don’t get me wrong, it’s not quite as bad as when I have been at my worst. But it’s still there. Niggling away at my knees and wrists and hands and ankles and shoulders and hips at three am. The nights are becoming a drag to be honest. I’m exhausted but can’t sleep well because of the pain, so I get up at the crack of dawn to keep moving my joints but by mid morning feel so tired I cannot see!
As frustrating as it is, I made the decision to start a business that suited my level of work and is something I enjoy and I am determined to make it a success. So pain will just have to keep niggling away as I’m too busy to give in to it right now. I just wish my body would give me a break and let me get on with my life and make a go of things. I am trying so hard to do something, be someone that I am proud of but this sodding disease just wants to hold me back when anything important comes along. Ever have that feeling when you’re lying awake in the middle of the night where you just want to scream at the top of your voice? I seem to be having that feeling every night at the moment.
It’s annoying me and its annoying my loved ones. I have to get up when I wake as the stiffness makes things worse so I creep around in the dark trying not to wake anyone. I deprive my boyfriend of lie-ins at the weekend with my six am burst of energy then want to sleep again by eleven am. God I annoy myself even thinking about it.
Anyway, maybe my body knows it’s coming to the end of the treatment cycle and is craving more. You see, the problem is I can’t find much information about repeat treatment of Rituximab and the third cycle specifically because it’s so new. Not a single person I know of is this far along in Rituximab treatment, even my doctor admitted I am the furthest patient along that she knows of in the whole of the midlands. So I guess I am playing guinea pig from now on. Wait and see is such an appropriate term for RA don’t you think?
Here’s hoping that round three will have an even bigger improvement on my miserable state at present and allow me to do the one thing I want most in the world... finish what I started all those years ago at uni where I vowed to make something of myself.