I have MS.
I’m not special. Or different. Or ‘suffering’, the word I hate most when referring to people with MS.
I am me. L’il ol’ me.
My brain may have taken an extended leave of absence and dotted itself with lesions, but I remain … me. Quintessentially ME ( I love that word – ‘quintessentially’, not ‘me’ ).
I think I have now – gulp – come to the understanding that MS is here to stay. Yup, it took a while, but I can’t show it the door so what are my options?
Well, I no longer mourn what could have been, what should have been. What’s the point? Besides, my brain has forgotten so much and just struggling to remember life pre-MS is a stretch. I could have done what so many people told me to do, ‘whaaaay hheeeyyy! Give up work why dont’cha, you’re disabled, like, d’uh’. MS is up there, among the most serious of illnesses.
And for a very long time, it was all-encompassing-serious to me. And of course, in some ways it still is, as it pokes its way through everyday life; the stumbling, the agonising nerve pain every evening, the dropping, the falling, the garbled speech. Never underestimate MS. But it doesn’t make me special and it doesn’t mark me out as different to any other person with their own unique agony, whatever it may be.
If you had told me three years ago that I would, in my late 30’s and (very, very) early 40’s spend most of my time on my back, I would have been alarmed. Now, I am savoir faire with fatigue and all it entails; I know and recognise the signs. The sofa is my command centre and I have everything to hand, although the pesky cat has now taken up residence on the other sofa, out my reach since I de-flea’d her.
I’m not special yet I am acutely, horribly aware that I have surpassed my father’s MS by six years, not only in terms of his age, but also the seriousness of the illness as he was living in an era before disease modifying drugs. So I refuse to be defined by MS. I am a heck of a lot more than that. The secret to controlling this awful illness is to do what it least expects you to:
- Get out there. Make new friends. Try new things. Surprise yourself.
- MS is cruel, there’s no denying it. But don’t deny yourself any experience, no matter how ‘trivial’.
- Allow MS to throw into sharp relief all you want to achieve in life.
I am not suffering from MS. I thrive in spite of it.
Seeing as panto season is here. Oh yes you are! Oh no you’re not! Repeat.
Love that! Oh no I’m not!
(he’s behind you)
X
It makes us fighters and that’s not bad, but not so much of the float like a butterfly
Very true! I’m definitely not floating around any more. Although perhaps I do when I scribble in my notebook for uni, lol 🙂
x
Very good points. So true. I have a similar one coming up.
Thank you! Sometimes we just have to recap and state the obvious I think – it’s a journey and it’s going well….
x
As long as you’ve learned something positive from your struggles and of yourself; surpassed the intellectual, psychological, emotional and physical challenges, you’ve reached beyond your expectations where many that do not have your “disease” bitch and whine about something so minimal, it’s sad and pathetic. Maybe you’re not there yet. Be proud of you as you are special! I have primary progressive ms, have the hardships such as you, recently going through a hyperthyroidism, almost died, have to take blood thinners, hydrocortisone and am ok; have a strong mind and be happy that your still alive!!!
What a horrible experience for you, but so glad you’re better now.
You’re right about the strong mind aspect, especially when our stoopid bodies let us down :-(.
I’m not ‘quite’ there yet, of course I have dark days like most of us. But in general, life has recalibrated itself and the dust has settled after the MS Explosion.
Onwards and upwards!
x
Thank you for responding; we all need each other and we must love one another; I’m no better than anyone else, after I had gotten the CCSVI procedure done – which was unsuccessful I made a moniker for myself, which you and the rest of us thrive for: overstep your boundaries and look beyond your scope of vision.
I love that last line! I second, third and fourth it 🙂
The MA course is pushing me waaaay out my comfort zone, but it feels amazing. Truly, wonderfully amazing.
x
Awsome! Keep doing what you’re doing and paving your way through, be proud and humble for your accomplishments. 🙂
I definitely am. It’s been a long road, but well worth the journey!
x
the one thing I don’t get that people say to me? “you are so brave”….I don’t get it. Why? As soon as MS comes up, people say that and then I try to tell them no, I am not, I really am no different then the next person going to Uni or just getting on with life. Its a little frustrating actually because I do feel that if I didn’t have MS, people would belittle what I have done. sorry, your post just reminded me of this 🙂
Absolutely! Brilliant point. That is up there in my top ten of ‘arrrggghhh’ things I hear. Brave for me, is when you choose to put yourself in a dangerous situation, i.e climbing Everest without a safety harness. But when something just happens, we’re not brave, we just make the best of it I think.
Like when I had a car crash. I was covered in bruises from head to toe, scraped off most of the skin from my face and hands and hid in my mum’s house for six months. Yet people still called me brave.
I think it’s a little patronising, like being patted on the head. I could go on, but I’m only on my first coffee, lol.
X
yeah running into a burning building is brave, being a police officer can be brave, so many other things are brave, but I don’t think being “normal” with MS is.
and ow!!! ow ow
You’ve hit the nail on the head – being ‘normal’ with MS!
Yup, crash was pretty bad. But I wasn’t brave at all 🙁
x