Honestly? MS, Again and Again and Again

Just when I think I’m doing a pretty decent job of faking it with MS, I discover that no matter how hard I try, it will always make its presence known.

When I say ‘faking it’, I don’t mean denying I have this illness, it just means that I try to hide stuff from the people who mean the most to me.

Yesterday, this hit home in an unexpected way; I had been at work and once back home, I put the fan on to cool down the house.

When The Teenager came home, he found me semi-relaxed, reading a book and being blasted by a formidable Arctic chill. So what followed was surprising:

‘You ok?’

‘I’m great! Fab fan! You ok?’

‘God, it’s depressing.’

Hmm, did he mean something had happened when he was out? Or was it the state of the world? Politics? No.

‘I just feel so sad that you have to sit in front of that thing to feel ok. It’s depressing.’

I tried to explain it was all good, I felt fine, I was just dealing with a symptom.

‘Still crap.’

I understand where he’s coming from – he’s had a fair old journey as the child of a single parent with MS which hit right when he started high school. He knows my MS foibles inside-out, but no matter how much he’s witnessed over the years, I’ve never relied on him as I wanted him to blossom and grow despite MS. The same wish I have for myself, I guess.

Of course, he will always have this hanging over him, as I am his main parent. He reads too much on the internet and stores it up until it explodes in fear and anxiety. I will always provide a safe harbour for him to come back to when he needs to.

I guess I am the Great Pretender. I refuse most offers of help, I push myself to the point of exhaustion and in some ways, I gain a lot of satisfaction by doing that and stuff the consequences. Yet within myself, I have somewhat calibrated MS to suit me; I go to work when I’m at my best MS-wise, I catch up on paperwork when I know I can engage my brain, I write randomly, whenever I can and I now accept that when I can’t, I can’t. No matter how frustrating.

When that happens, I’m stuck on the sofa, or in bed. Lying flat in a cool bed sometimes brings more relief than any meds. I realise my life has shrunk, but in a bizarre way it’s also grown. Without MS, I could still be in a dead-end job with a dead-end partner, cycling through life with no real care or direction. Life has been honed down towards what is most important, and that’s been a huge learning curve. I’ve discarded all thoughts of what I should be doing, could be doing, ought to be doing. I now choose.

So yes, MS happened. It’s not the best, it never will be, but I will try for as long as I can to continue to be the best parent I can, above everything. If I could only reassure The Teenager more, I would be happy forever.

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8 thoughts on “Honestly? MS, Again and Again and Again

  1. Helen says:

    I can’t tell you how I identify so much with what you have to say. It means a lot to read the thoughts of someone thinking about life in the same way as me. Try as they might those close to me don’t quite get it and what should they? I am constantly pretending because I want to lessen the impact of my MS on their lives. I wouldn’t have it any other way but it is nice to sometimes share with someone who really understands.
    Take care

    • stumbling in flats says:

      Thank you for your comment, Helen and I’m also glad to know I’m not the only one feeling this way!
      You’re right, it’s all about our desire to lessen our illness’s impact on the ones we love the most, even when it almost makes life more difficult.
      I hope your MS is behaving itself this summer 🙂 X

  2. Sotiria Donti says:

    Barbara this was perfect! Described so good the situation of MSers parents! Your views are so interesting and the way you express them, so good! Thanks for reflecting my/our feelings, problems and making me feel better… Less incapacitated!

  3. Annie says:

    Exactly what you say and Helen .. totally relatable 😊! So reassuring that other people get what I’m feeling. You are amazing x

  4. Christina says:

    Amazing the same sitting here husband away on bike ride his escape wish I had one ha
    He’s very good like to help everyone but I hate asking he’s a builder a good one with few man working with him been a long tim
    Hasn’t always been like that we sat with beans on toast as our meals 33 years ago when ms first hit us
    . But they don’t as you say understand and friends and mothers have carried on with there own lives !
    But it’s nice wrong word to hear someone else going thru and understand what it’s like
    Because if you haven’t got it you don’t x

    • stumbling in flats says:

      So very true. I’m just grateful Teenager has turned out happy and confident, despite everything.
      Know what you mean about it being nice!! That’s why I love this blog, you guys telling me I’m not the only one. Thank you! X

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