I'm not addicted!

I have been almost 24hrs without TV, I’d break out the champagne but I don’t know how that would interact with my drug regime so I’ll settle for a glass of icy, but not too cold water instead. (I really know how to celebrate these days) Just in case you were wondering my break from TV really had nothing to do with the fact that I couldn’t get a Sky signal (okay may be a little but I was looking for a break away and this is not an addiction!

I tried my friend’s sister’s advice about the sleep thing last night/this morning but I don’t think it worked but then again….

I’ve sussed out what this sleep problem is all about Prednisolne is giving me a high, Chemo is making me tired and mr lupus is adding fatigue to the melting pot of confusion no wonder I can’t sleep I’m wired all wrong. I even tried sleeping tablets, well it was a very small tablet, once, but that was enough. It worked, I fell asleep comfortably which was great only a slight problem. The following day I was awoken by the postman only to find that although my eyes were awake, I was still asleep, so much so that I was unable to do anything for more than 30 minutes at a time for the next two and a half days. Needless to say I have not done that again and have no plans for a repeat performance anytime soon.

I’m holding on to that small glimmer, albeit a pin prick, of light that when the steroids are over I won’t have this problem. I’m pleased to announce that I am taking the Prednisolne now in ever decreasing circles so I should be off them soon well what’s the point of going through the whole chemo thing if I still have to take high dosages of steroids. In fact I’m still trying to work out the first part what’s the point?

I realised today that we are totally ignorant patients (I know I can’t be the only one) I know a lot of information as it pertains to mr lupus, the symptoms, diagnosis, treatment etc. but I know very little about mr lupus and me. I have spent so much time focussing on what the advances of mr lupus that I have lost sight of me in the process. What do I mean well when I was lying in a hospital bed and they told me they were going to administer chemo that afternoon it came as a total bolt out of the blue I’d always associated chemo with cancer and the fact that my mother died from breast cancer really didn’t help matters but I had an hour (which translated into about 30 minutes) to digest what they were telling me and then make a decision. When I was younger I had a key ring that read 'I used to be undecided but now I am not so sure', so you can imagine my decision making process with this one.

On a sunny Tuesday afternoon, I was simply told the choice is lupus or chemo which one do you want. What a choice to make particularly given that mr lupus was successfully attacking the nerves in my legs which if not treated could result in permanent loss of movement in my legs. So I agreed to a course of action that has much wider ramifications without any real consultation, support or advice and I’ve realised that a lot of our medical decisions are made in this way. So again I have a choice and you do too. I have decided that I need to be an expert patient, asking the questions and getting answers as to how all of this relates to me both in terms of where I am right now and where I want to be. I’ve got a hospital appointment this week so that’s where I am going to start.


Thought for the day
Understand the power of choice in your life and learn how to exercise those choices effectively.