I will start by saying that everyone’s MS is different. The ability to cope with a diagnosis will be very different depending on the individual and it will manifest in different ways.
The type of MS I have is Primary Progressive. My main symptoms are dreadful pain, horrific head to toe spasms as well as major cognition - this was the cause of me leaving my employment as well as losing my driving licence! Other symptoms include fatigue and balance issues to mention but a few.
For me MS is relentless, unfair, painful, debilitating and most of all very unpredictable. I always say it’s like a thief in the night, in it comes and takes another piece of me.
It never takes a holiday and every action has a consequence.
Things I wish I had known
I wish I had known that I would have days/weeks where I would experience every emotion possible. I would cry, get angry even depressed, I would think the whole world is conspiring against me.
I wish I had known that I would experience such incredible levels of pain that other people with MS don’t get. Trying to explain pain to family or friends is nearly impossible. As well as trying to explain it to my neurologist or the medical field that’s another day’s work.
I wish I had known that I would be sad and lonely especially at 4am in the morning when my pain is at its worst and everyone is sound a sleep
Pain changes you, your tolerance level increases but it still doesn’t get any easier.
I wish I had known that I would lose the ability to reason, to think, to hold a conversation, to see other people’s point of view, to lose my short time memory and to overreact to everything.
Because of those cognitive issues I would be convinced I was right and fight hard, only to find out I was wrong, the shame! And then I would do it all over again.
I wish I had known that visits to the neurologist, the pain management doctor or GP where I would go in looking for a solution to my pain issues, and I would have so much hope but leave with despair. But what I didn’t have was patience this was recently pointed out to me.
I wish I had known that I had to be my own advocate for my symptoms and get used to being labelled as Atypical or Complex.
I wish I had know how important it was to slow down and take people’s advice, instead of thinking I was invincible and nothing was going to happen to me. Maybe if I had slowed down and took advice I would still be working, my pain, discomfort and fatigue might not have been so bad.
Personally, I wish I hadn’t told work because I was been looked at differently. Suddenly conversations were been had as to how long I would be able to keep going in my position. I wasn’t Mary the person in charge; I was Mary the person with MS.
My social scene might be still in tact but I wish I had known I was going to lose friends. MS is definitely a strain on relationships and friendships. Our lives do change and it’s hard on everyone else because it’s not like a flu that will get better and go. It’s going to hang around forever and people get tired.
Most of all I wish I didn’t have this disease, but I do have it and I have to find some way of making peace with it and build a better life for all of us.