After a truly horrendous couple of years with MS and then the wonder of Alemtuzumab treatment, I am at a curious place.
I’m over the moon that my MS has stabilised; the enduring symptoms remain but are manageable, mostly.
Relapses are now few and far between – horrifying when they happen, catapulting me back to the bad old days, but they pass.
Before I went to Austria on holiday, my mum was worrying herself silly that I wouldn’t be able to cope with MS and all its symptoms so far from home. Luckily, with a bit of forward-planning and plenty of adjustments, I pulled it off.
I was having a chat with her today, and I remembered saying to my neurologist in January that always, always, at the dark place in my mind was my dad’s MS and could, would, the same thing happen to me at some point?
Of course, I know it probably won’t, but the mind is a strange thing. I feel incredibly guilty that my MS has been made a whole lot easier than my dad’s ever was. And not only that, also that I’m faring better than a lot of people who have MS today.
I’ve tried to re-form this thought. Ok, my MS is under control. So, what can I do with this reprieve? Should I do everything I possibly can, everything I ever wanted to do? How long is the window of opportunity? MS has shaken me down, given me a resounding slap across the face and pushed me into places I’ve never been before.
Me? Public speaking? Well, yes, even with my weird Scottish-Americano accent – I’ve talked at MS newly-diagnosed days, to executives of Genzyme (the manufacturers of Alemtuzumab) and forever on film for World MS Day, chubby face and all.
Me? Take a Master’s? Yup. I even passed the first year and am looking forward to the second. And mulling over my tutor’s suggestion about taking a PhD *faint*.
Me? Take on unscrupulous employers and win? Yes, and then some.
My biggest fear hasn’t been realised – I’m still here to cater for The Teenager’s every whim. We’ve got through the exams, the future plans and the prom (a very, very long and traumatic story – not me, him).
I’m still here, I’m doing ok, but I can’t shake the guilt.
you shouldn’t feel guilty at all. you have taken a really crappy thing and turned it into a positive one.
That’s a lovely thing to say, thank you so much!
your welcome 🙂 it is true tho, with everything that has happened after the MS diagnoses, you have done a lot and proved to people just diagnosed, that yes MS can and often does suck, but life is not over, it still continues its just different
Very true! It’s weird how MS shapes our lives in such a broad way. I’ve made some incredible decisions because of it.
I think it’s given me a massive boot in a whole new direction 🙂
Don’t think you would escape guilt if your life was one way or the other. Anyone with a conscience feels guilty about something. I’m drafting a post about guilt myself – the guilt I feel about other people having to take care of me. My husband feels guilty because he can’t fix me and because he can do things that I cannot do. I have shielded my grown kids from knowing how bad things really are for me because I know it’s possible that one day they may face a diagnosis. The problem with that is that they have no idea how bad things are for me were for their father. Guilt for withholding the truth versus guilt from telling the truth – which should I choose? Guilt is a complicated thing.
You’re absolutely right, guilt is complicated.
I also feel incredibly guilty that my MS appeared just as my son was finding his feet at high school, and it’s pretty much dominated his teenage years.
It may make him more sensitive to others’ needs. Empathy is a valuable characteristic.
Hopefully! He’s a thoughtful kid.