Tuesday, 28 September 2010

Keeping a diary

When I saw my Occupational Therapist last week she gave me a 'fatigue diary' to keep. It is split into lines for each hour of the day and you have to keep a note of what you were doing, how much fatigue you experienced (on a scale of 1 to 10) and any other notes (what you ate, how much sleep you got the night before, etc.).

I have found this quite easy to keep up with but, as she promised, it is a bit like Groundhog Day - there hasn't been much excitement in my life the last week!

Saturday, 18 September 2010

Annual Neuro

September means that it is time for my annual check up with the neurologist. The visits always follow the same format - he runs through all the things that I might be having trouble with (speech, swallowing, bladder, bowels)... we discuss any relapses (and associated courses of steroids in the last twelve months)... I complain about the things that are really bothering me - memory difficulties, numb hand, modafinil keeping me awake.

He suggested to me that on the topic of waking early in the morning that this could have other causes than the drugs... depression for example. I pointed out that I had suffered from depression, knew what it was like and categorically could confirm that wasn't currently one of my problems.

He also commented on my crutches (rather than the one stick) I told him it helped me balance better and meant I could get around faster - he did agree with this when I was leaving!

We then had the usual conversation where he tries to get me to take Tysabri and I refuse. I know heaps of people take it and it sometimes works for them but the one in however many thousand risk of the brain disease is too much for me to worry about. He then went on to suggest a different solution  - a chemo drug I think it was which has a one in something hundred risk of causing leukaemia or heart disease. I did comment that this risks were even worse and that I'd stick with my Avonex for now.

I was a bit depressed at the end to hear that my EDSS score has gone up to 6.5 which is a half a point increase since this time last year.

Wednesday, 1 September 2010

Postive action

Today I had the much awaited visit from the occupational therapist. We spent about an hour going over just about everything... from my MS diagnosis to symptoms and lifestyle. It was a very positive meeting and she has lots of suggestions to help - the one I am most keen on is managing fatigue without taking drugs. We also discussed starting some sort of exercise regimen and she gave me some useful weblinks to look at.

I am going to look into 'Access to Work' to see what can be done to make the (many) hours I spend at work easier.

All in all I was left feeling that life can (will) be much more manageable than it is now.