Wednesday, 18 March 2009
Things are a bit tough today.
I woke up really early, in quite a bit of pain and that pain has been pretty persistent all day. I did go back to bed for about an hour and a half, but it wasn't enough. I am feeling really exhausted, which on top of the pain is making me feel quite lethargic. The right side of my back feels twice it's size today - I feel like a hunchback - no comments please!!!
I had a few things to sort out yesterday, like the steroid prescription. I think the pharmacist thought I had got it completely wrong, when I put in the prescription! But after a lot of explaining, she was able to establish that I did need 500 mg a day for 5 days! Obviously it had to be ordered so I won't be picking it up until tonight.
As far as the IV infusions go, I have had a call from the TAIRU unit at Torbay hospital, which is where they do the infusions. They had wanted me in next weekend, but as I have 3 concerts, Martin gently reminded me that the combination of steroids and doing anything just doesn't go. So we have arranged for me to have them from Monday 30th March for 3 days, because I have the oral steroids to keep me going. If I hadn't had the prescription for the oral ones, then I would have seriously had to think about pulling out of my singing commitments. I feel quite relieved that it is all sorted now and I can still sing!
It is frustrating that the resources aren't available to allow people to get the treatment any quicker. By the time I get the infusions, it will have been about three and a half weeks since things started going from bad to worse. That is quite some time to wait - or is it? Luckily I have the oral ones to take in the meantime, but this is my point about how do we get through now? Is this 'normal' for people to have to wait for treatment that works more effectively the earlier it is given?
Enough of the moaning, I have my appointment booked, I have the prescription ready to start tomorrow and I have my singing commitments starting on Friday and I will be there.
I know some people have questioned that I am still going to be singing, even though I am in pain and discomfort, but if I stopped doing everything because of my pain, then I wouldn't be doing much with my life.
Yes, it will be hard. Yes, it will be a challenge and yes, I will be in pain. I never said it was going to be easy. But that is what life is all about isn't it? I have too much to give in my life, to not at least give it a try. That isn't to say that I am not listening to my body. I am trying to be sensible - ha ha!
I am resting as much as I can in preparation for the activities at the weekend. I am not working at the moment because I have recognised that I was taking on too much. (You can all get back up off the floor now!!) And the fact that half of my body won't work properly, meant that I am unable to work satisfactorily anyway. It is disappointing because a part of me feels that I am 'giving in' to the MS. But the other part understands that I am actually doing what is best for my body. My head is such a conflict zone!
I have the final rehearsal tonight, with the full orchestra, for the Show Boat concert, which starts on Friday. I am a mix of emotions right now, but none of them are the terror I thought I would be feeling. I am actually excited, a little apprehensive and slightly scared, but not terrified! I have such great support from everyone involved in the event, that no matter what happens, I don't feel that I will be letting them down. So fingers crossed everyone!
I have to just add a note especially for my dear friend Jane Rowell and her family. Jane's mum sadly passed away yesterday after a battle with cancer. I lost my Mum a year ago on March 2nd and my heart goes out to her at this difficult time. When I was newly diagnosed, I remember Jane telling me that her Mum did reflexology. I never did take advantage of that, and I feel very sad about that today.
There are lots of people thinking about you and your family today, Jane. Martin and I are just two of them.