Sunday, 20 May 2012

Managing Expectations

I have neglected my blog this week due to the fact that my hands hurt and I came down with a stinking cold which I now seem to have broken the back of.

The cold delayed my starting the Sulfasalazine, purely because I couldn't face getting up and dressed on Monday to pick it up from the chemists. But I started on Tuesday and can happily report that I haven't experienced any nasty side effects to date, although I'm still only on the quarter dose that will build up over the next few weeks.

I had one of my regular reviews with my diabetes consultant on Tuesday and actually think it was better that I had the opportunity to discuss everything that has happened with him before I got started. He is a fantastic consultant who always manages to make me feel like we can face anything. I had hoped that he would reveal an extra-curricula interest in RA and would magically be able to provide all my care but sadly not! He is however very knowledgeable about the drugs I'm facing so I am confident that he will be able to manage the integration of my RA into my diabetes treatment at least.

He looked genuinely sad when I told him about it all. It just reinforces what a good consultant he is as he sees me as a person, not just a record of out of range blood glucose readings (BGs)! Anyone living with Type 1 diabetes will know it is a full time thing to manage it successfully. Right now I'm not sure I have the strength to give it the attention it demands. Its so reassuring to have a consultant that understands this and cuts you just enough slack to take the pressure of without giving you free reign to ignore it and put yourself in danger. His main concern is the steroids I'm taking as they increase BGs and then make you eat like something possessed on top. But for now we've just agreed to manage the extra BG spikes as best we can until the RA has settled down a bit and then can start seriously thinking about stopping them or at least reducing them to a more natural level.

Insulin pump and cannula
He did gently drop in that my diabetes regime will probably never return to "normal" again as anything that causes you're body to have to work harder to maintain itself (ie. illness, injury, pain, emotional stress etc) causes changes to the amount of glucose and therefore insulin required by the body. As I'll have some kind of permanent immune system activity happening from now on, with varying pain, I'll most likely have to re-configure all of my daily insulin requirements ... from scratch. This means figuring out what teeny tiny amounts of insulin my pancreas would have excreted during rest periods (before it went on strike!) and programming my insulin pump to do it instead. There is no magic lab test for this. It involves a lot of finger prick tests throughout several days and nights, a lot of maths and mostly a great deal of trial and error and luck. Having been through this when I first went on the pump, I can honestly say I am not relishing doing it again, let alone having to work on stabilising two major conditions simultaneously, with a blip in either one potentially undoing the work done on the other.

I have been at serious risk of dropping in to an "its not fair" funk this week, but I'm managing to keep my head above water by not expecting miracles from myself. I can only do so much and if that means aiming for safe, but not perfect, blood glucose results ... well that will just have to do for now.


  1. You're an inspiration! I'm in that "life is not fair" funk currently. I despise pity parties but this one is unable to shake. I wish you the best with the management of both diseases. You are one tough chick Viki!

  2. That's really kind of you, thank you! I'm following your steroid posts closely and really hope you start to feel better really soon x

  3. My heart goes out to you! Yup, I can truly understand the funk feel but remember...steroids also tend to make us feel that way sometimes too. Hopefully you will get a handle on your ra and thus your diabetes too.

  4. Thanks Viki! I am trying to be better today. It's rough as you well know. I hope you had a great Monday! xoxo