Katherine took part in the review process for the MS fatigue self-management course, and was one of the star reviewers.
Pins and needles
My first symptom was double vision in January 2013, but I thought that was my lazy eye playing up. The doctors couldn’t find anything wrong and it resolved itself. In the April of that year I started experiencing pins and needles in my feet. I’d just started my current job, done a workstation assessment, started yoga and had a chiropractic appointment. A week later I started getting pins and needles in my right foot - I thought I’d caught a nerve.
It gradually spread up my leg, to my belly button, to my left foot and to my hands. My feet started to feel like sponges. I could still walk, but I couldn’t feel them. I didn’t tell anyone. Brian was away, and so I googled it and found MS.
I went to my GP and was eventually referred to a neurologist. The symptoms had reduced to occasional buzzing, but he still sent me for an MRI to exclude inflammation. The MRI indicated lesions in my brain, but the spinal scan wasn't clear. I had a second MRI in November 2013 which found lesions on my spine. Now the doctor mentioned MS, but they couldn't be sure as there was no test or clinical signs. I just had to wait and see...
On late December 2013 it started again. I woke with a numb bum then gradually numbness spread from my bra line down to my feet and hands. I felt bouncy whilst my ribs felt tight. Sometimes it felt like a boa constrictor or like I was carrying a bag of pins and needles that swooshed around when I moved.
I told my manager, who was amazing and said to take all the time I needed. I went to the hospital a week later, where they did lots of tests and a lumbar puncture. They concluded it was almost definitely MS.
With treatment I'm mostly symptom free. Now I've found the right one for me. There's the odd buzzing and pain in my feet, but I'm mostly having to deal with fatigue.Katherine Stacey
Coping with fatigue at work
I’d been having regular reviews with occupational health at work, but been finding it harder to manage fatigue. I’d been given regular breaks, but I hadn’t been very good at taking them properly. Then we’ve had a few staffing issues and I felt torn between looking after myself, and getting the work done.
I find the mornings difficult, so I’ve reduced my hours to start an hour later at 9.30am. The fatigue is becoming harder to manage and I thought that I’d need to give up working.
Reviewing fatigue management course
I was pretty sceptical about the course at the beginning but learnt loads just in the first session. The information about lassitude and short-circuiting was the most surprising. I told Brian and Mum straight away, as it explained everything that was happening to me.
The unhelpful thoughts also rang a bell. I argue with myself every day about whether I can justify taking my work breaks, even though my manager wants me to take them. Now when I have doubts I can look back at my notes and remind myself fatigue management is there to help me stay in work, be productive, and keep well.
The MS Society have helped me from the beginning and it’s nice being involved in this project to give something back and to help others.