A friend of mine, who is going through a hard time, told me that she doesn’t know how I deal so well with my MS and how I manage to just get on with life. She compared how she is coping to how I (appear to) cope and came to the entirely incorrect conclusion that she must be doing something wrong.
Now, I’m well aware of my talent for hiding how I really feel. It’s a talent that many MSers possess and one that enables us to keep going – the alternative is to wallow in misery, and no one wants that. But on reflection, I realise that I probably put on too much of a front, and this can be harmful to people like my friend, who think it’s not OK to be sad.
The truth is, behind closed doors, I’m not coping. I am angry and frustrated at my body every second of every day. I am still grieving the loss of my old self, the one who could run and jump and WALK. I’m desperately sad that I can’t do more for my kids and that I can’t do simple things like walk them to school. I hate having to constantly monitor my bladder and having to clean up when I wet myself. I hate the fact that I’m always tired.
I hate having MS.
I hate it, I hate it, I hate it!
Whew, that felt good.
So why am I writing all this? Certainly not to garner sympathy. Rather, I think it’s important, once in a while, to acknowledge that having MS is hard.
A recent example of my not coping occurred in the summer holidays. My kids had trashed the house, there were toys everywhere and the living room had been turned into Jurassic World, with an erupting volcano and toy dinosaurs covering every inch of carpet. Usually, I’d be proud that my love of dinosaurs has rubbed off, but on this day, I was struggling. I had just unloaded the washing machine and was contemplating hanging it on the line, but my legs would not cooperate. Abandoning the washing, I staggered into the living room in search of a seat, but I couldn’t physically lift my feet high enough to step over the dinosaurs. I ended up tripping over them, my legs crumbling under the effort, and I fell, landing painfully on a carnotaurus’ tail. I couldn’t get up; my legs had turned into solid heavy lumps, and I was stuck.
Perhaps, on a different day, I would have laughed at the situation. But on this day, all I could do was cry. Loudly.
The Wibbly Dinosaur 
I totally understand the frustrations, I get angry when I go down because I’m unable to get myself off the floor. But damn it I try, and occasionally succeed, it’s so hard.
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Know exactly how you feel. I’m just glad my children have grown up now!
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Yes love, we have homed and toned the skill of looking that we are warriors and winning the battle. Also we are very convincing, but sometimes we allow ourselves to say its blooming to much. Keep on moving is best we can do.
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Oh Emily, I love your posts you tell it how it is, hope you’re doing ok?
Sending hugs 🤗
Karen x
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Sending hugs x Yes we do put on a front, and friends say ‘you look so well ‘ while inside we’re falling apart. And falling is so frustrating – in the summer I fell oh so slowly backwards into a trug, just like an upside down tortoise! Take care
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Putting on a brave face all the time is hard especially when people call you’re an “inspiration” or they say “you are looking great” …what sat in a wheelchair?
I went for counselling as I was struggling with how I felt about my body and was grieving for my previous fit and walking, graceful way of life. It was good to cry, talk and swear with someone who didn’t look sad and sorry for me. I was taught to think in different way and that it was still me inside my wonky body. Acceptance is a big task and I still have my cry days. I’m going to a wedding today so I will put my face on and sit there wishing I could get up and dance like I used to but hey ho I will just get on with my chair dancing and enjoy the happiness of the day. What’s the alternative? There isn’t one 😊
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I always say if I don’t think about it I havnt got “IT” As you say people always say ” oh your looking well” just because I am still able to put on my make up & keep up aperences. Lots of people have no idea how it affects me
As when asked,I always smile and say yes I’m fine . I wasn’t diagnosed untill I was 58 I’m now 70, although I think I have had “It” since I was in my late 20’s/ early 30’s. I’m very very lucky I can still walk, albeit with a gait, and am prone to falling over nothing. While on holiday last week I fell trying to get out of the sea, my lovely husband ( and he realy is ) after managing to get me up and making sure I was ok, said I looked like Pamela Anderson rolling about in the surf….then he added,oh noo i mean Clive Anderso!!!. I am full of admiration for you Emily, especially having 3 young children to look after Keep on with your blogs, you ARE a inspiration to us all. xx
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