Hey, MS, Happy 6 Month Anniversary! After a year of hell, I was officially diagnosed on 25th May. I don’t need to tell most of you how horrendous the diagnostic process can be, suffice to say I am overjoyed never, ever to have to go through a lumbar puncture again. Have you seen those needles?
Having MS sweep into your life is like having an ugly, unwanted house-guest move in with two huge suitcases and the kitchen sink. For ever. No matter how much you try to get on with life, work around them and keep ignoring them in the hope they will go away, they stick around.
Not content with that, they inflict pain on you mercilessly in unexpected ways, physically, mentally and emotionally. They rack up extra costs, they stop you going out as much as before and they chuck out your high heels (that was a cheap, low shot, MS). They rob you of your health, your confidence and your zest. They frighten your family and taunt you about your diminishing prospects.
If MS were a person, they’d be arrested and banged up for life.
So how do I feel, six months on? The absolute permanence of MS horrifies me. It will never go away. The progression of it, too, is something I tuck away in the furthest reaches of my mind, only to be thought about in very dark moments. I hate the constant fear, the gnawing anxiety of a relapse just around the corner. I hate the way MS has shaken my life so completely to its foundations that nothing is the same as before.
I know, I need to embrace this illness. I should accept that MS is now indelibly imprinted on my life. I need to Think Positive! Meditate, do yoga, give up the sweets, the alcohol, the stress. Don’t we all? If pushed, I would say that the one thing MS has given me is the ability to appreciate things more. Not in a hippy-dippy, mung-bean eating way – just enjoying small pockets of time when everything is ok, I don’t take so much for granted now.
I am still debating whether to get a tattoo, to mark this little anniversary. Something small, just between me and MS. I want a barcode, with the words, Best Before 25/05/12. Or should that be Best After…?
took best part of 2 years to come to terms with, and stop tears etc. it is awful i know, but dont give up booze, take up weed( for the pain of course ha ha !) and start fundraising for a cure. That is the only thing you can actually do. Could there be a cure?? I’m not relying on one, but they are getting there with their remyelination.
You just never know. I’m sure you’re used to uncertainty.
Raising money has shown me the support i have both locally and further afield, everyone has someone they know with an MS story.
Stay fit, do exercise, i used to be a pretty good rock climber, now i swim and row in the lake, not as exciting, but not bad.
There are now days when i don’t really think about it, too much. Hard to believe i know, but true, keep on keeping on, be as positive as possible, stay away from stress, nap in the daytime, stay cool.
Hi Duncan!
Thank you so much for your comment – very inspiring. I think I’m still at the stage of feeling sorry for myself and still in shock at being sacked for having MS.
You’re right about fundraising. I will definitely look into it. And I am hanging on to the belief that there actually could be a cure within 10 years. That’s why I took Alemtuzumab – they told me it could hold back progression by around 10 years (if lucky), and by then, who knows?
I’m off to meet a fab friend for an early morning coffee. Keeping the good people in my life and getting rid of the bad. Have a good Sunday!
x
Hi!
Yes it really is forever isn’t it.
I was diagnosed a year and two months ago after all the tests and waiting. I found the l.p. ok it was the noisy mri scan that scared me the most. When I came out of it the staff were so very sympathetic that I thought I had something you would die of (can’t remember what now!)
Moving on to life now yes permanently terrified and I don’t even get relapses or have to inject. I don’t really think PPMS Is worse than rrms at all. They are all bad.
My mother in law did a great cake bake and raised over £400 thanks to the people living around here that was great.
Anyway thanks for your blog I find them great to read mainly because you seem to have very similar thoughts and feelings to me and it helps me feel it’s real and not just in my imagination!
Thanks, Sue x
Oh by the way I hope your friend that you took to hospital is ok now. Sorry I knew there was something else…
Hi Sue!
Thank you so much for your lovely comments. I think my lp was bad as they couldn’t get the needle in properly, they kept on hitting the bone – a horrible pain! Took almost two hours, meh.
My friend was diagnosed with trigeminal neuralgia and has medication – seems to be better but now gets excruciating headaches, bless him. He’s going back to the doctor to see if he needs further tests.
Hope you have a great Sunday!
x
Hi stumbling. Not a huge amount to add as I know not what you are experiencing with MS, my back problem has brought about it’s very own uncertainty, tears and life changing decisions, but, it is not even comparable. I just wanted to post to say, I don’t know, not congratulations! but, I am thinking of you.
Also, your friend who has trigeminal myalgia – it might be worth mentioning to him to look into botox treatment if he has not recently. A friend of mine has this and she has regular botox treatment on the NHS to help with the pain and swears by it’s success.
Hi winecantcurebackpain,
I have read about you with interest! And thank you for your kind comments. I guess it’s about re-arranging and re-configuring life as we know it?
MS makes me want to dye my hair pink and get nose studs, lol. I am trying so hard to help my friend. He’s in a lot of pain and bewildered with it. Will tell him about botox. Think his GP is a bit narrow-minded, unlike mine.
Life, eh?? X