Imagine you had a life-long friend.
This friend’s been with you through everything. Every high, every low. Seen you through weird and wonderful adventures across the world, the birth of your child, a near-fatal car crash.
One day, this friend turns on you. To begin with, you don’t really take much notice, you’re too busy trying to get on with life. You ignore the niggling doubts. You trust this friend implicitly, with your life. But the warning signs become hard to ignore. You’re sure they’re drugging your coffee, it’s the only thing that could explain the overwhelming fatigue. They begin messing with your mind, mixing up your thoughts, your emotions, garbling your speech.
Things escalate badly. They begin pushing you over and tripping you up. You never know when it’s going to happen and you start to live in fear. Your balance is shot to pieces, the pain is uncontrollable. You start going out less, hiding yourself at home. You’re bullied at work because of the friend, who by now is an enemy. This will ultimately be an excuse to fire you from a job you love. Friends abandon you, leaving you even more isolated. Your family can’t begin to understand what’s happening to you, no matter how many times you try to explain.
Your income drops as you have to reorganise your working hours, your social life is non-existant. Simple tasks become mountains you have no hope of scaling. Just getting through each day in one piece becomes your sole aim. Fear and loneliness are now your constant companions, keeping you up into the small hours, frantically working out what your new future will look like, if you have one at all. Every area of your life is rapidly changing beyond recognition, so fast you can barely keep up. Your son cries in his bedroom. He can’t cope and you don’t know quite how to console him when you can’t even reassure yourself.
This is what MS feels like. Your body, your friend through life who has never let you down before, attacks you from every single angle.
Drugs, treatments and a superb support network have restored some kind of order to my life, although it is not the life I had before. But those black, dark days will remain with me forever. And they may, just may, reappear at any time. Carpe diem.
Again a very good blog. Very dark and I can equate to that and feel you describe your MS (which seems to have great similarities to mine) very well. Though from reading some of your previous blogs you obviously have a great sense of humour too….I think that humour, positivity and exercise (swimming in my case as i can no longer walk) can really help when the MS demons come and sit on your shoulder. I also agree with you about the isolation…I have some good friends that ‘get’ it and a dear husband but still feeling the isolation more and more each day. Thanks again for your great blogging skills x
Thank you so much! I am a bit worried I seem to be writing dark posts at the moment – I can only put it down to being at home on sick leave after the Campath? I love writing funnier posts too, but sometimes you’ve just got to get your frustrations out in a hard-hitting post.
It came about when a friend tried to understand what MS was like and no matter how I described it, I failed. So I thought, ok, look at it from a more personal angle, what it feels like when your body turns on you. I still find that quite a frightening concept.
During the whole diagnostic process, I lost a LOT of friends. Very isolating. Plus heat intolerance and fatigue keep me indoors a lot. Sometimes I wish I lived in Glasgow again, just to be a bit cooler than down here, lol.
Yep….living in Glasgow definitely keeps you cool! I’m fortunate not to have a problem with heat though.
I find it’s the everyday things that can take me unawares i.e. yesterday I had a parcel delivered but I wasn’t in so have to go and collect it from the PO. Well I’ve been worrying about how to do that all night! I’m sure you understand. As it’s turned out my dear friend, Bridget, just phoned (as she often does) to see if I needed anything….and I’m finally learning how to say ‘yes’.
Here’s another thing that’s worrying me. I’ve got visitors coming for the weekend. I can’t shop, cook, entertain for long without incredible fatigue. I feel they are travelling all this way and I can’t even offer a cup of tea!! What you say about losing a lot of friends is another thing I agree with you on.
To finish on a more positive note (!) it does sort out who your real friends are and makes us love ’em all the more.
Take care and I look forward to your next blog.
Oh, I have the most awful problems with heat. Was one of my first symptoms when I went from being a Celtic pale-face to looking like an angry tomato. When I was last in Glasgow visiting family, it was like being in heaven. Nice cold breezes, a watery sun, lol.
I know exactly what you mean about the little things. I plan everything to the smallest detail, worrying about how to do the simplest things. I too have a parcel to pick up and still haven’t managed to collect it. Even picking my son up from the train station today is worrying me as foot drop seems to have made an untimely comeback.
With your friends coming – I just order the best ready veg, meat, etc from Waitrose and attempt to pass it off as my own 🙂 And I make sure I get the best dessert in – people will forgive you anything if you give them chocolate! Or I have a pot luck dinner, when everyone brings a dish. But I do know what you mean. It can be absolutely exhausting and trying to explain it to other people is hard.
I should really work out how to get my son – car or bus??? Meh.
A beautifully written piece . . . so poignant. I’m certain lots of people will be able to relate to those feelings you describe so eloquently – and hopefully – find comfort through shared experiences.
Take care, B.
Thank you Jan!
It was a hard post to write and I was a bit wary about it being so personal. But it seems to be quite popular, which is lovely, and I’ve had great feedback on Facebook and Twitter.
I definitely think sharing how it feels to have MS is important – to know that we’re not alone going through this.
A few words that say everything. X x x. Thank You again x x x
“This is what MS feels like. Your body, your friend through life who has never let you down before, attacks you from every single angle.”
very well put 🙂
I know you could probably say the same for a lot of chronic illnesses, but it’s still scary.
Another great blog which I totally get. It comes to something when the wheelie bins go out more than you do and friends that once were never call anymore, just because you cant keep up with them. Who needs them anyway I’ve got all I need in the love and support of a great family.
Thanks Sue! Love that comment about wheelie bins, as was just putting my rubbish out, lol.
I certainly lost a whole lot of friends – mainly because I suddenly stayed at home a lot more, but also I think because I was now something ‘other’ if that makes sense. Thankfully I made new friends (not just of the MS variety!) and in some ways, my life has changed for the better. MS gives you an opportunity to rebuild your life exactly the way you want to (barring physical limitations, natch).
I just really wanted to explain how scary it was when MS first strikes. It ain’t fun.
I stumbled across this superbly written piece. I’ve been diagnosed just over 4 years, and much of it strikes a chord. Am fairly stable at the moment but had a massive relapse a couple of months ago. Now spend a lot of my time raising money for research into remylenation. Thanks. Tim
Thank you Tim, very kind of you!
I was diagnosed last year but to be honest it feels like a lifetime ago. Brilliant that you raise money. I’d love to run a marathon to raise money for MS but it’s just not going to happen. But my lovely nephew will be running in the London Marathon for them next year.
Reading your post was like therapy – grateful you put it in words and shared. Thank you. Adjusting to isolation and feeling vulnerable is a rough ride. Thank goodness for the internet!
The internet has been a godsend for me. Not sure how on earth I could have navigated my way through the whole MS thing without it! The support out there is amazing and really, even though we may feel we’re going through it all alone, we’re not. Love, love, love it!
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