No apologies necessary. You’re dealing with a major lifechange, so I’d say you’re being normal!
I used to have this issue with friends. In the end, I politely asked them to read some choice parts of the advice written here on the MS Society website. Everything from the basics of ‘About MS’ to pages relevant to the symptoms that I personally have, such as fatigue, really low walking distances before intense pain, and bladder concerns keeping me, somewhat irritatingly apparently, enquiring about toilet locations when choosing places to dine or even sitting in shall we say, more aromatic parts of the pub so i’m next to the toilets. I also showed them the letter my MS nurse wrote that I used for evidence on a benefit claim, as that neatly summed everything up by the nurse herself in her own words, the symptoms I had to what degree.
After I showed them everything, my friends see the issues, they’ve really calmed down with the irritating positivity and remarks about how well I am doing X or Y, and now just leave it be knowing of the situation. So if all else fails, doing something similar may work out for you. It really is something that people can’t really experience for themselves to know the ‘right’ advice or helpful comments without them having MS, so that was the next best thing.
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Hi Jackie, like you I have had this and I know there are plenty worse off than me…but I always think, this is happening to me, not someone else, its effecting mine and my hubby life and its extemely difficult to live with, more often the people that say this are perfectly well and going about there business. The other thing that’s been said is…oh we’re getting a taste of your medicine now with covid and not being able to do anything, or go anywhere…NO YOU ARE F…G NOT, you haven’t got all the symptoms that I have to cope with on a daily basis…ok rant over.
Jean x
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As a carer, i get so annoyed when people make comments saying “My wife looks well considering”
They have absolutely no idea of her daily struggle to cope with the daily routines just to get through the day which i see first hand.
Ranting is totally justified when you are subjected to comments like that !!!
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Hi Jackie and Tom1, Yes Jackie I totally agree, when it was said I was gob smacked, they couldn’t see my face as it was said over the phone, then another friend has said just very recently about the new lock down, oh its killing me not being able to see anyone…she can still go dog walking with a friend, still get out and about and yes I did remind her of this…her reply, I feel for you hun I really do, yeh right. Tom1 I too get this, “oh you look well”…well get this I don’t bloody feel it, my hubby say’s they don’t get to see how this effects you on a daily basis, GRrrr, honestly. The good thing though is that we’ve all got each other on here for support and yes to rant away at.
Jean x
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Each morning I wake to the sound of my meds alarm going off and even though I may have had a decent nights sleep, I think, Oh here we go…wonder how Ill feel today. Will I get to the loo in time? Will my hands tire and stop me crafting, which I love, or will I have a better day?
I go to bed at 5pm and sigh with relief as I feel I dont have to struggle with stuff…then I have to turn over after 2 hours and I get a sore bum!
I do love life but a bed of roses it aint…despite my smile and my outward cheery manner.
Boudsx
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Thanks, Bouds. Really appreciate your replies. Hope you get some crafting done today.
Thankyou ProfY.
Making a nativity calendar for my grandchildren…it hasnt gone that well, but tomorrow is another day and I`ll attack it again and hope for better results.
Boudsx
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https://powerfulpatients.org/2019/04/24/words-matter-why-cancer-isnt-a-game-of-winners-or-losers/
OH MY GOODNESS. This is the one thing that winds me up SO badly. I’m a really positive person but I have been appalled for years every time I’ve hear a ‘war cry’ from a cancer advert. Patients are called warriors or fighters and they feel they have this thing to prove to people. For years I’ve always thought I would be so offended if I ever got cancer and someone said to me ‘you’ve got this!’ Now I have MS and no one knows about it. But if I ever told anyone and they started that fighting talk with me, I think I’d want to knock their head off! Some people don’t have the strength in them to feel strong all the time and that kind of pressure just makes them feel worse, whatever their disease/ailment may be… MS, cancer or whatever.
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Hi anon, I think there is a big difference between being told you have MS and being told you have cancer.
I believe MSers have a much better chance of surviving MS than cancer. I`ve had/got both and know which I prefer.
Sorry if I`ve got your message wrong, but there you go.
Boudsx
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Hello Anon
Boudica is absolutely right, MS and cancer share practically nothing, except the words used to empower the individual with one or the other.
But, that is a brilliant link, I’m going to send it to a close friend with a new diagnosis of a rather nasty cancer.
Actually, I think the analogy of the ‘fighting talk’ for cancer and MS is reasonably apposite. Many of us are somewhat annoyed (or irritated as hell) by the positivity we are supposed to ‘fight’ our MS with, just as people are enjoined to fight their cancer. And just as someone with cancer might feel that they’ve personally ‘failed’ with chemotherapy, we too might feel that we’ve failed to exercise enough, to eat the right foods, take the appropriate vitamins or follow a specific diet. Our MS is worse than it might be if we’d pulled out all the stops and ‘fought’ it rather than laying down and taking whatever it hurls at us like sheep.
Just because I’m in a wheelchair and can’t walk anymore. Because I can’t/couldn’t take disease modifying drugs. Because I don’t believe following a restrictive diet would help me. Because I don’t always do the exercises that might just help a little bit. I haven’t ‘failed’. I’m just bloody unlucky.
Sue
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No definitely not comparing the two diseases. Comparing the use of the military type language surrounding many diseases. I don’t think people should be made to feel bad if they are not winning the ‘fight’
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Oh, that whole “fighting” thing gets on my nerves.
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Norasmom. I agree, it gets on my nerves too. I’ll fight for something if I think there’s any point. If there’s any chance of winning but I know that you can’t flog a dead horse.
As for that dreary, worn out expression, “I’ve got ms but ms hasn’t got me”, I’ll swear at the next person that I hear saying it!
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Yes Poppy, I also hate that expression…because I KNOW MS has defo got me!
Boudsx
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Me too Poppy…it get on my wick!
Jean x
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yes, when they mention people with m.s. having a sense of humour or being ‘brave’ it annoys me!
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