I was is in work the other day and in amongst a conversation about the previous night’s ‘Game of Thrones’ and the price of jacket potatoes, the attention suddenly switched to me.
‘Oi! What’s up with your face? You having a heart attack or something?’ (builder humour).
It was a hot day. My face was burning and bright red, so I yet again explained MS heat intolerance, one of my first and most annoying symptoms, trying to put a jokey slant to it.
‘Oh yeah, that old MS excuse again. Don’t you ever not talk about MS?’ Now, this may seem brutal, but bear in mind this is a building site, they’re all friends and I can give as good as I get. So I did, and cut him down to size.
A while later, more unsettled than I wanted to let on, I casually asked if it’s true, do I always talk about MS?
‘Um, kind of.’
I found a shady corner, sat and sulked for a long time (admittedly, not very grown up) and brooded. It was bugging me. I always prided myself on putting MS to one side and getting on with the job. Apart from when I can’t, and I stay at home, the beauty of a flexible job. I thought I had a ‘work mask’. I’d calibrated my working day so that I started early, finished early and spent the rest of the day recovering before starting again. To most people, I should appear perfectly fine.
Finally, it was time to go and I continued sulking in the van. Then I thought about it on a different level. They were perhaps right, but it just showed how much MS dominated my life. I try to keep it in a box, or at least a separate part of myself. I’ve tried to come to terms with the totality of it, but maybe it hadn’t really sunk in.
I ran through work scenarios:
- Unable to work in the sun – MS heat intolerance.
- Being tired all the time – MS fatigue.
- Tripping over at work – MS foot drop.
- Garbled speech – a hark-back to one of my first symptoms.
- Brain freeze – MS cog fog.
Yep, it was all about MS. To me though, it’s all normal now. So it’s not so much that I talk about MS all the time, it’s when people ask me why I did this or did that, the answer almost always wends its way back to MS.
Maybe they could focus instead on how much I have moved the company forward, which has nothing to do with MS; my superb organisational skills, my rapport with clients, my eye for detail and my all-round fabulousness?
What do you think?
I think we all talk the same amount of self obsessed chatter when engaging with people. I found that since getting an allotment that’s all I seem to talk about with patients. Even the weather prompts another bit of sparkling BS that they hadn’t expected. We are all guilty, Babs. Even meeting my old mates we end up rebelling the same old stories and anecdotes so don’t worry about it. X
Thank you! Guess it’s true – maybe I should take up a new hobby and dilute my conversation somewhat 🙂
Hi! Unbelievable how many times I have heard it, “how often I talk about ms” or “it’s all about ms”!Admittedly, ms has devoured a large part of our lives, but, come on people, we can’t avoid to mention it when it’s the biggest problem of our lives and the explanation to a ot of our misfortunes!!!
You put it so well, Barbara! 🙂
That’s exactly it – it totally impacts virtually every area of my life, so it’s bound to be a constant topic!
And anyway, the guys in work can talk about Game of Thrones for days on end …
People may just not understand how much MS affects us.This has been posted online and gives an outline of what the disease does and how it can effect us, though we are all different.Could be worth keeping a copy handy for anyone who genuinely wants to know or to stop any smart-arse remarks.The online MS group I belong to is great for venting. Here’s the piece: When someone asks me about MS, if they know anything, it’s usually that it affects a person’s ability to walk. If only it was that simple….We (MSers) have a little of almost every disease to deal with. Think about it – the brain controls everything the body does. MS causes brain damage and causes nerve pathways to misfire. Like people with rheumatoid arthritis, we have joint pain and inflammation. Like diabetics, we have neuropathy in our feet. Unfortunately we usually have that same nerve damage throughout our body. We can also lose our vision. Like a person with lupus, we can have heart issues. Like a person with ADHD, we have trouble focusing. Like a person with cancer, our body is killing itself. We rely on toxic medication that compromises our immune system, have radiation, and our quality of life is not great. Like a person whose had a stroke, we can lose our ability to speak, have one-sided body weakness, lose the use of our limbs, etc. Like a person with Alzheimer’s, we have problems with our memory. It may be short term or may last forever. Like a person with Parkinson’s we have body tremors.
And what MS doesn’t do, it makes us more vulnerable to comorbidities. We deal with everything listed above…widespread pain, chronic fatigue, trouble breathing, depression, anxiety, muscle spasms, trouble eating and digesting food, bladder and bowel problems, on and on. On top of this we have to deal with most of our symptoms being invisible. Not only are we judged by strangers, co-workers, friends, and family, but also the medical profession that has taken an oath to help those suffering…..so don’t ever call us weak. We’re the same person as we always have been – just a little different. Ask – care – help without judgement.
That’s brilliant, thank you so much for posting! A really interesting point you make as well, that people are conditioned to think MS is all about walking/not walking, so when they see me and most of my symptoms are invisible, they can think I’m talking nonsense, or something. If only they knew the half of it!!
All so true
Yes, Barbara I agree with you – we are more than MS.
If he’s been told of your symptoms with MS why doesn’t he remember? I don’t think that it’s fair of him to have forgotten your condition and that you have limitations even though you don’t let it affect your work. He should understand and you shouldn’t have to explain it every time he ‘forgets’. Good for you in cutting him down to size, he might remember next time. Shame on him.
My friends and family know of my MS, but it is rarely mentioned by them or me although they know I have difficulty with things. Maybe if I was still working it would be different with work colleagues.
I found your comment really interesting – in a way, this person talks more about my MS (or mentions it more) than I do!
Hello love reading your blog .
Been away a while and have them popping up again, a bit like ms always there never too far away in my 30 year but feel so alone with it , what you say about talking about it I have found we don’t really it acknowledged if having a bad time and put to back burner rumblings,
My husband has not been to an appointments for 2/3 years he’s always busy . My core is failing and I need to do someone about it like swimming but I can’t go the gym with him !
Why I don’t know I don’t fit in all the fit glam and fully mobile ladies and gentlemen there his excuse. His time and it won’t help ! He’s a builder too x
Thanks for listening x
I’m really sorry to hear that 🙁 It sounds quite lonely for you.
Perhaps there is some kind of MS support group nearby?
Take care, please X
Perfect explanation Barbara, it’s so easy to spot anything we might do wrong and 99.9% of the time it is the MS to blame. So inevitably we all end up talking about it explaining the way it’s caused us to do or not do something. If only people could recognise all the good work you have done I’m sure you might not mention your MS so much but when something goes well it often gets taken for granted very frustrating.
You talk about MS all you like it’s genuine how many people do we hear talking about a minor ailment which clears up in a few days.
So very true!! I always joke that The Boss seems to have a lot more MS symptoms than me, bless him. He’s always run down, always tired. Mind you, he is married to the job, lol. Thank you for your comment!!
Not likely your male coworkers will spend time complimenting when it’s easier and more fun to joke. You didn’t bring up ms, you were asked a question and were answering it honestly. I’d call that educating.
You are absolutely right – and I think, bit by bit, they’re learning a little more each time about what it’s like to live with MS!