
My F words of MS
Nina has secondary progressive MS. In this post, she talks about how her life is affected by her MS and how she feels about it.
Last year, l was sat staring at my computer trying to find inspiration. I’d been asked to give a talk to a group of NHS professionals about life with MS, and I was struggling.
As I kept staring, I noticed the top line of keys: F1, F2, F3 and so on. I immediately thought of five words, beginning with F, relating to my experience with MS. There are 12 F keys on the keyboard, and I soon had 12 words about how I felt about MS and how it was affecting me. I’d soon written my talk, and l received many compliments after I delivered it. Not only for its interesting content, but also the original idea.
Looking at MS this way and writing that talk helped me, as well as the health professionals that day. It made me acknowledge and think about some of the aspects of my MS that I had never considered. It also revealed to me that MS never just affects you, it also influences everyone around you.
The 12 “F” Words
Fatigue.
When I get up after a good night’s sleep and feel like I am walking through treacle.
I can’t keep my eyes open or manage to clean my teeth.
Frustration.
When I can’t get to where I need to be, reach an item I need or finish a task I have started.
When I am struggling to follow some simple instructions or do a task I would usually find easy.
Fear.
Heading into the unknown, not understanding what MS means or being aware of what will happen to me.
Falls.
They might or have happened, and will I hurt myself or someone else.
Will I break a bone, how will I cope?
Feelings.
Learning to acknowledge, accept and control feelings of anger, despair and depression.
Managing and understanding these emotions
Forgetfulness.
“Oh, you know, what’s her name….”
“I’ve just finished reading a great book, by um….”
“I can’t remember what time we agreed to meet.”
All of these and more.
Frequency.
When I need to go, I really need to go.
Some people even carry a card to explain this.
Foolish.
When the above situation happens, or similar (getting stuck because there is no drop kerb or ramp, etc) it can make me feel foolish or embarrassed.
In the heat of the moment, it is difficult to remember that it is often a problem of society and not mine.
Fumbling.
Realising I can’t manage small buttons so easily, taking longer to tie shoelaces or spilling my tea when holding it.
Faithfulness.
Shown by my loved ones, family, friends, carers and care staff.
I appreciate you all.
Fun.
Having MS doesn’t mean you have to stop having fun.
Sometimes I just need to adapt or make changes to the ways I can experience it.
Fellowship.
Felt with those who are on the same path as me, and through membership and involvement with the MS Society.
There is a thirteenth F word of course, although I am not sure I can mention it. When I have one of those days and it is all too much, and I just need to shout “F---!”