Tuesday, 3 March 2009
This weekend has been an emotional one for me - not MS related. So it is quite hard to say how I have been feeling. My pain has been very acute, but I have not been sleeping that well, so I guess it is all tied in.
It was good to have the four days off work and actually the thought of it tomorrow fills me with dread, but I know once I am there, it will be OK. I am saying all that with fingers firmly crossed of course!
I am, once again, trying to focus on the positive things. I have a rehearsal tonight for the Show Boat concert. I didn't make it last week so I am definitely going this week. I also have rehearsals at the weekend for the How Apt group. Combine all that with work too and for a person with MS, I really am quite busy!
I look at all the things I do and I amaze myself that I can do it all, but I don't see any other way of living my life. I want to work, because it gets me out of the house and communicating with others. It also gives me a sense of responsibility and I feel as though I am contributing to mine & Martin's lives, financially. I am also determined to be involved in my singing ventures. I have realised how important singing is to me and the sense of well being it gives me. It also allows me to get out of the house and be part of a group.
There are definitely days when I don't feel like it though! Those days where everything is a struggle and all you want to do is curl up on the sofa. That is why the days I have off are important to me. It's essential for me to rest. I often wonder if some people think that it is just an excuse for me to be "lazy"? A perfect opportunity to sleep in and just sit around, but if that were the case, wouldn't I be working full time?
When I started back to work, that had been my intention. I had expected to be able to eventually take on a full time post, but how wrong I was. I manage twelve hours a week, over four days and that to me is a full time job. There are often days when I don't manage my three hour shift, which can be quite demoralising, but when I do manage it, I think to myself "what an achievement"!
It is so hard to explain to people how this illness can be so debilitating. But it has made me the person I am today. I am much stronger. I am learning not to push myself, but to do the things that I want to. Even if that means I need to manage my time so that I get the essential rest that I need (which, by the way, I am not very good at doing). I used to feel guilty all the time, if I had to say no to doing something and a lot of the time I would force myself to do it. I do still get the guilt, but I am trying to put my well being first.
That's it! I am not used to having to put myself first! But with MS it comes with territory!