Life. It's tough.
Life with MS is tougher than life without MS of course.
That said, I doubt that any of us MSers would say our life is tougher than someone else’s...anyone else's, MS or no MS! “Walk a mile in someone else’s shoes” and all that.
Still, MS does have more than its fair share of negative points and it gives us more than our fair share of ‘bad days’.
With our new friendship, we (Willeke van Eeckhoutte and Fergal Hughes) find we enjoy convincing each other that it’s not all bad and that every cloud has a silver lining.
WvE: Life with MS put a big exclamation mark in my life... and I wasn’t having it! No more hillwalking or thinking of chasing cows in the middle of nowhere only to realise there is a bull just 150 metres ahead of me!
FH: Even though some capabilities may have been taken from you, you just need to remind yourself that you can still do what you can do and, well, you'll keep doing it. The goalposts may have been moved – personally, what I now consider to be a major achievement is certainly different to what it was some years ago – but I’m pretty sure you have the confidence and strength to deal with it and adapt.
FH: Me, I work as a software engineer. This is both brilliant and not so brilliant.
My job requires that I sit down for 8 hours a day. This means there’s minimal call for me to be physical but it also means I get minimum chance to be mobile or to work the muscles.
Also, my mind has to constantly be in tip-top condition … and with MS that can be a struggle.
WvE: My experience is that lately, it seems that my concentration and memory have gone to tatters. My prospective memory especially has led to awkward situations because I agree to do certain tasks, but then I can’t remember that I had to remember to perform that task. The intention is there and unless I sticky-tape notes to every wall of the house, I often find myself apologising.
WvE: This is no joke. It takes 100% true grit trying to stay awake for five minutes once I put my head on my pillow. Can you imagine having a relationship like this?
I have to watch episodes of my favourite shows five or six times to see the whole 45-minute program! What’s your secret, Fergal?
FH: Combatting fatigue is no easy matter, Willeke. I’ve found that a regular schedule for going to bed at a particular time every evening and getting up at roughly the same time every morning helps me … as long as I stick to it!
As long as I give my body and mind the best possible chance, the closer to a ‘normal life’ I get.
FH: I'm a worrier. It's alright saying I live in the 'here and now’ but shouldn't I at least consider the worst possible future … so I'll be prepared for it if it did happen.
WvE: As a great philosopher once said, ‘Don’t worry, be happy’. Kidding.
But hey, always remember, you can’t control the future. You can maybe have an effect on today and this week but let the long-term future take care of itself.
A BURDEN ON OTHERS
WvE: I feel shut out when people tell me I don’t need to worry about certain news, that I have enough on my mind already. I tell them again and again that they don’t need to worry about what I live with, but I cannot convince them. Backup or tips needed here, Fergal!
FH: No one wants to feel like a burden on family or friends. But come on, Willeke, we can’t control how others feel.
And anyway, we might be wrong!
I KNEW I WAS DEPRESSED BUT WAS AFRAID OF REACHING OUT
FH: I waited too long to get help and felt there wasn’t much support available in my community. When I eventually found a therapist, it was expensive enough for the amount of time I was given.
WvE: I’m sorry to hear that Fergal. People with MS need more readily available access to mental health services. Once I opened up, I felt relief knowing I was not the only one. Therapists might have group sessions also for ‘people with chronic illnesses’.