Mum-of-three Jenny Potter writes about living with Primary Progressive MS (PPMS), her family and how she'd like to find a job again.
I was officially diagnosed with PPMS about five years ago, although I've probably had it nearer ten. I went to GPs with various symptoms, but nobody joined up the dots.
I was referred to an orthopaedic surgeon, who operated on my ankle. This made everything worse, with the added bonus of pain, but at least I got some crutches out of it, so 'every cloud...' as they say!
Step after step
The first consultant I saw after diagnosis described PPMS as like standing at the top of deep set of steps. Every time something stressful happens you drop down a step and some mobility goes. I've dropped down a few steps now.
Twenty years ago I could run, dance and climb up hills; ten years ago I could walk a mile; then it went down to half a mile; now it is just a few metres with the aid of a crutch.
I love books. I had hopes of being an author and have written two novels and several short stories. However, this dream is now impossible.
I have gone from being able to touch type to typing at a snail's pace and it exhausts me. So now I make up stories in my head and satisfy my need for words doing crosswords!
Unable to work
I recently lost my job. For the last 12 years or so, I have worked with pre-school children. If I'm honest, I was starting to find it difficult. I could no longer pick the children up or dance and play with them.
I would love another job, but I live in a rural area and find driving increasingly difficult. If I sit too long, I stiffen up and then find that I cannot walk at all. So if anyone has any ideas for work, suggestions on a postcard please!
Isolated and fatigued
I often feel like I’m under house arrest. I can go a couple of weeks without leaving the house. My social life is pretty limited.
I have most energy in the mornings when 50-somethings like me are at work. By the evening, I am sitting on the floor to relieve the spasms in my legs and I can just about manage to gawp at the telly!
I cope with fatigue by dividing my day into manageable tasks. Today I have to clean the living room, do the washing and cook the dinner. I can achieve this as long as I can build in enough rest periods and as long as I don't try to do too much. Otherwise I can end up feeling sick and dizzy.
My hope for the future
I want a cure for MS or at least a way of arresting its progress. Not for myself, but for my children. One of them may have my faulty genes floating around. Part of the problem is we don't really know what causes it. But just in case one of them does get MS, I want a cure, so they can go on to live happy, fulfilled lives.
Jenny's husband and son are doing the Great Scottish Run to raise money for us.