Yesterday when I woke up I ached from head to foot. Was it worth it? Hell yes! If it is the last run I ever do then it was worth it. I have just watched a video clip of an amazing teenage girl called Kayla Montgomery, with MS who runs but collapses over the line after every race due to overheating and numbness in her legs, her coach has to catch her when she crosses the line. He said “whilst the legs work you have got to use them.” I have this outlook, while they still work I want to do as much as I can for however long that is. Not all of us have this ability though and I am already beating myself up that there is always someone who seems to be doing amazing things with this illness and some days I even struggle to peel the potatoes or put my shoes on. But I keep telling myself I am doing the best that I can.
Today was the same with the aching so I had a bath with lavender oil in it to see if that helped. Didn’t notice any difference to the aching but I felt relaxed. I then went off to my Tai Chi Class which was also very relaxing. I started a discussion afterwards about why it is so hard to remember the movements of the “Form” and I think the answer may be to do with why Tai Chi helps MS, it is all about forming new neural pathways, gently persuading the body to find a new way of moving/balancing itself which it wouldn’t normally do. When this is repeated enough times the movement is learnt. It has got to be worth persuing.
I went to return the orange MS Society Vests from the run to my friend and she wants to join us on our next run. She is an active fundraiser as her son has MS, he went blind in one eye over night and was paralysed from the waist down, he can now walk again and can see out of his eye. She will be organising a table top sale soon to raise some more. She is amazing with all the work she does fundraising constantly for the cause. We had a good discussion about betainterferon as I still need to decide what I am going to do about that. As I feel weaker every day I think I will go for it to see if it doesn’t get any worse.
I went with Rob to pick up the boys from school to have a meeting with the Young Carers Group http://www.youngdevon.org who may be able to support our family. I am finding all these things very helpful as my children will be able to go on trips and meet other children in the same boat as them but am also finding it extremely sad that we are in a position where we need to access all this stuff which I was doing with no problems only a few short months ago. Having this disease is really beginning to hit home.
positive thought: focus on what you can do rather than what you can’t