Most of you know that my great passion - apart from Martin & Me To You bears - is singing and that Martin & I are part of a group called How Apt.
You can check us out at
http://www.how-apt.com/
We had a couple of events last week. We performed at a street festival, in Silverton, north of Exeter, last Saturday, and then we are performing at the theatre in Brixham for three Wednesday's throughout August. The first one was last Wednesday and then we have one this Wednesday 18th and next Wednesday 25th is our last one.
And so the week began!
We had a big rehearsal last Monday, to make sure we were ready for Wednesday's performance. It was needed and we all felt a bit better after doing that rehearsal, but I have to admit, I was totally shattered by the end of it.
I am my own worst enemy too, as I try to continue just as everyone else does. It's not that I ignore the MS....it's a bit hard to do that, but I do ignore the signs of when I have done too much etc. So I was really struggling on Monday evening.
It didn't stop on Tuesday.
I had to be up early and I was down at Derriford hospital in Plymouth by 8.45am. I had my Tysabri infusion. It was number 15 this month! I was exhausted before the infusion started, but as usual, the infusion wiped me out again.
We were lucky this time. Because we got there at 8.45am, the infusion was up and running by 9.30am. As I said, the infusion wiped me out. It hits me very quickly once it is administered. I was asleep on the ward just after the infusion had gone through. I have to wait an hour after the infusion, to make sure that everything is OK, but I am finding that I am starting to sleep through that hour!
I am trying to be sensible though and use my wheelchair. I am finding it easier to use & because I get so wiped out, it is better for me and for Martin.
I know that using the chair is a good thing. It has just taken me a while to get my head around it. I am still finding situations where I can't do it, but it is getting easier over time! Especially as I have a queue of friends who want to push me in it!
I find that it's not just the fatigue that is the reason I use the chair. Because I use crutches and I suffer with a lot of pain and using the crutches causes pain in my hands, on a regular basis, using the chair means that I can alleviate some of the cause of the pain.
I have no idea whether the Tysabri is working, but I have had an MRI scan and I have an appointment with my consultant in September.
I know that some people really notice when they are ready for their next infusion, but I haven't noticed that. That's not to say that it isn't working for me, but I will be interested to get the MRI results and see if there are any changes.
By the time we got home on Tuesday, I was not in a fit state to do much. I was asleep for a lot of the afternoon and I was in bed early that night.
Wednesday was our first gig at the Theatre, so I tried to have a relaxing day, without too much exertion.
We had to be at the theatre for 4pm, for a run through and sound check. It was decided that I could sit throughout the whole show, if I needed too. I'm not sure whether it was pure pigheadedness, whether I was sub consciously being stubborn or whether it was adrenalin, but I stood for all my songs throughout the evening.
I know that with the correct posture, I am able to sing perfectly well sat down. I spoke to my GP about it as well and I know that this is the case, so this week's gig, I am going to sit down for at least some of the songs, if not all of it! The guys that I am singing with, don't have a problem with it. In fact, I know some of them would be pleased that I was looking after myself....yes Joe, I do listen to you!!
It is just really hard. I guess I keep feeling that I have something to prove.
Which is really silly.
I have nothing to prove to anyone, let alone myself. I know what I am capable of. But it is hard to change my mind set, having performed since I was about five years old. I want people to see my performance and not my MS.
Anyway, the show went really well, we just want lots of people to come and see us! If you are around or near Brixham on Wednesday 18th or 25th August, then come and see us! See the website or the poster below!
I also had problems with my hearing again. I was struggling to hear out of my left ear. Apparently it is an inner ear problem, which is a build up of dust or pollen. It is something I am just going to have to live with!
I am also struggling emotionally with my MS. There is a lot happening at the moment. I am having things changed at home, adaptations etc, I have started using a wheelchair, I am going through an application for a wet room, and this is all starting to affect me.
I don't want to let it get to me and I don't want to feel sorry for myself, but sometimes, that is easier said than done!!
Anyway, I hope everyone is keeping well, or as well as can be!
Love & hugs
XxXxX
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