What do you do when someone blows your mind away by telling you that you have an incurable disease that will change your life forever? That you may be unable to walk in a year or hold an object in your hand; you may get incontinence; you may lose your sight and so on and so forth? All these horrible thoughts go through your head. And of course, the big one. Is it real? Why me? What can be done about it?
I was diagnosed with MS, multiple sclerosis, five years ago although the symptoms of the disease began many months prior to this. By definition, I am disabled. I have a chronic disease which impairs me physically and cognitively.
One day I went for a walk – I’m a walker and that’s what I like to do. That day was a bit different. My feet had pins and needles – both of them, and it encompassed the entire foot up to the ankle.
Day two – it had travelled up to my thighs.
Day three – pins and needles now almost to my neck.
Eight months later I had a diagnosis. By then I had experienced two relapses and nearly entirely lost the use of one of my legs (which by the way has recovered quite a lot).
The best thing I can think of to do is research and talk! Talk to people who have the same illness, talk to your friends, talk to your partner. Read about it, get books, read online. It can be scary, not knowing what might happen so getting all the information you can is so helpful. Ask questions and don’t be afraid you’re going to ask a stupid question. If you don’t know the answer, it’s not a stupid question.
Try to be positive. I always tell myself that I am much better off than many others in the world.
What does one do? My life has changed very little since I was diagnosed with MS. I’d been working for Beca for 12 years by this time as a desktop publisher in the design team. The company showed amazing support during this time of uncertainty. Beca gave me the opportunity to remain in my current role with no changes other than more flexible hours and less travel.
So, I’ve kept working, I’d be horribly bored and depressed if I was unable to work or considered by my peers as unable to fulfil my duties. I work part-time from home three days a week. I am fortunate to work for Beca, a company that is very conscious of the wellness of staff and of health and safety. They have been very supportive of me and my condition and any special needs I may have. Having an understanding employer makes it much easier to remain in the workforce. In recent years they have set up a ‘Wellness Portal’ and also offer a free Employee Assistance Programme which provides a confidential framework to assist with personal and work issues with not only employees but their partner and/or spouse too.
I keep walking (although I’m slowing down and not as able to go as far or for as long as I used to), I try to keep positive.
Not everyone knows I have a disability – it’s mostly invisible. I’m not sure if this is a good thing or a bad thing – when you look ‘normal’ people don’t understand that you physically or mentally just cannot accomplish some things. How would they know? Should I wear a sign? Should I tell everyone I meet? I don’t; sometimes I do, and they’re embarrassed. I don’t want to make people feel uncomfortable.
Recently, I notice that my balance is affected quite a lot. I stagger and sometimes fall.
So, when you fall down, just try to think what else you can do while you’re down there!
I wake up every morning. I get out of bed and get on with my day. Sometimes I have little surprises because the challenge of this disease is its variety and the unexpected and usually unpleasant bombshells thrown at you. I never know what the day will bring. But I say, ‘Suck it up buttercup!’
Any day can be a challenge in anyone’s life. With a disability your challenges are daily and not quite the same as everyone else’s. There is no cure (yet) so is there hope? Of course! If you lose hope, then you just lose. Be a winner!!
Oh, and about those lemons… don’t let them spoil…
To read more stories see My Story. My Strength. My MS.