Disability issues

Life with MS – how it can make you feel

Learning to live with feelings and frustrations

Yesterday was extremely unproductive. I was frustrated at the end of the day so I wrote exactly what I was feeling. I have never done this before, not where it might be seen anyway. I didn’t intend to publish it. But then, I thought, why not?

What follows is what I wrote; absolutely no amendments. Please keep reading, the end is positive I promise.

Photo by Kinga Cichewicz on Unsplash


I can’t be bothered to do anything today. Not even to play games or listen to my book. I’m cold and I’m tired and I just want to go to bed. This is how it is sometimes. MS can bring you down just like that. I made a reasonable effort at reading and a bit of writing this morning but this afternoon is useless. I’m counting down the time to bedtime.

I hate these days. This has been coming on for a while. All last week I was struggling. Now the clocks have gone back and it’s darker earlier, even more depressing.

This makes me anxious. I worry that I’m not going to be able to snap out of it this time. I’ve done it countless times before, dragged myself up again into the light. But each time, it gets harder and I get more and more worried that I won’t surface.

I’m going to get a my hair cut on Thursday. Sometimes going out can make me feel better and lift me out of this. But I know that deep down I’m really anxious about leaving the house.

It’s hard for people around me to understand. Because I’m always smiling, always cheerful (so they tell me) they don’t like it if they think I’m sinking because it worries them.

I don’t like it much either. It is soul-destroying. These are the days when all I can think about is what I lost when this horrible disease got hold of me. I don’t like the feelings that overwhelm me.

Everything I was and everything I had before has gone. I have no privacy, no dignity, no freedom and worst of all, absolutely no choice. I cannot choose to get up in the morning when I please, or take a shower or simply get some breakfast. I cannot curl up on the sofa with a hot chocolate and a good book.

The thing that makes me sad: I cannot pick up my grandchildren, swing them round and cuddle them. It breaks my heart when my daughters struggle with childcare and I can’t help.

The worst thing, I can no longer sleep in the same bed as my husband, put my arms round him and give him a hug or even sit at the table with him to eat.

We cannot go out in the evening to the cinema, or for a meal or any of the things other people take for granted. He is my full time carer and although I am only 65, at 86 he finds it very tiring, and at times frustrating. I should be the one looking after him.

So this is where I am today. Tomorrow could be completely different. I never know.

Depressing isn’t it? And yet today I feel fine. I’ve read some useful articles this morning, carried out some research online. And now I’m writing. This is life with MS. The feelings it can swamp you with and the tiresome frustrations of it.

So you see, sometimes it’s just how it is when you’re living life with MS.

Photo by Firman Kholik on Unsplash

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