I was on the bus this morning in my wheelchair and got chatting to an old lady with a rolator sat in front of me. She looked me up and down and said kindly “You must have an awful life”
No, not really.
What goes through people’s minds when they see someone in a wheelchair? I can understand someone who is dreadfully disabled might find life a challenge but there I was chatty away on a lovely sunny morning suddenly feeling the weight of the world. My life isn’t anywhere near awful and I’m saddened that people think it might be. (It’s the people NOT on the bus that are probably in need of the sympathy – not me)
I guess it all comes down to attitude and yours is great Jane. Some people seem to have everything but are unhappy and some have little but find a reason to smile. It was a silly comment best ignored!. Peter
A lot of people couldn’t cope with what we put up with but, as you say, life isn’t awful. I reckon I have a wonderful life but I know there are people who have said to me “if I had MS I wouldn’t be able to live”. Best ignored.
If anything, I have to say, that MS has made me a better person. Not so selfish and not taking for granted those good days. Mind you, when someone moans about having a sore throat for example it does make me cross.
Well said Peter. I met a young boy aged 6 with multiple disabilities. This little lad has the ability to fill a room with light and laughter. He has spent most of his life in hospital having surgery to help him walk which has been unsuccessful. He is the most delightful happy contented child I have ever come across. Just 30 mins in this lad’s company makes my heart sing. To others who do not take the time to talk to him he appears to be a “poor child unable to walk” and all they see is his chair. That is their loss. Jane you are so positive and perhaps what this lady meant to infer is that she felt she was fortunate in only needing her rollator and perhaps she had been struggling to cope when she met you. You have probably inspired her to get out and about more. I have certainly have been helped by reading your posts to others. Please don’t be saddened by what she said as I am sure she would be mortified if she thought she had upset you.
I was reading something the other day (not specifically about MS), that said that in surveys, most people who didn’t have a condition rated the detrimental effects more severe than those who actually had it! I’m not quite sure what the lesson is there - except, perhaps, that most people cope better than they think they would, or else that those who are ill learn to focus on the positives.
In similar vein, somebody asked me about my illness, the other day - it’s not that it’s visible - just cropped up in a discussion about hospitals. He wondered what I’d “got”. When I told him it was MS, he said: “Oh dear, that is especially unlucky!”
I thought (but refrained from saying): “Well, not really, no.” Thirty years ago, a friend was murdered, at 17, by an escaped lunatic, because she refused to give him a kiss. Now that was especially unlucky: she didn’t get her life at all - ended at the threshold. A life marred by MS is surely still better than that?
And then I watched my dad die of an agonising and incurable disease, all because, on leaving school, he’d worked for a few months in an environment where he was exposed to asbestos. It wasn’t even his ultimate career - just a casual job he took, while he was looking for something better. Over 50 years later, he paid the price. OK, I’m not denying he at least got a chance at life. He made it to retirement age, and a little beyond. But is it right that his fate was sealed by a temporary job he did in his teens, and after that, it was a ticking time-bomb? I would say that was especially unlucky - more so than MS. Plus, once it was diagnosed, he had to live with knowing he would die of it. I can’t imagine what that’s like! I probably won’t die of my disease, and even if I did, it wouldn’t be due to some job I did as a teenager. There are different degrees of “unlucky”.
I do count myself very lucky - most people at some point in their lives will suffer from ill-health. My MS is very mild. In fact Im just back from the gym and I was there yesterday too. Now I’m sitting in work to get some stuff done in peace & quiet.
I’ve always said though - that if worrying about this condition cured it, then I would worry. But it won’t - so I don’t.
Chin up lads and lasses. I’m sure Wb will have some more funnies for us soon
This reminds me of a similar time when someone couldnt actually face me, because of my wheelchair.
I was at the respite therapy centre and I saw someone I knew vaguely. I asked one of the nurses to ask her if she would like to come and talk to me. It was easier for her to get to me, as she could walk and I was put in a corner.
She did come over but started crying. Others thought she was crying for me…not at all…she was crying for herself and had imagined that if ever she needed a wheelchair, she wouldnt cope. I told her it didnt have to be that way and wished her well.
Dunno how things turned out for her, as I dont see her now. She had MS.
I get upset when my closest friend feels unwell and doesn’t want to tell me, even when I can clearly see she’s not well because she says " It’s nothing compared to what you have to put up with". She is wonderful, researched ms when I was diagnosed and is so patient with me, walking at my pace, having regular rests etc. I love her to bits but no matter how many times I tell her that I’m still me, she always feels sorry for me. I don’t know how to change her view but ensure that we spend quality time together, doing things we both enjoy and don’t dwell on what I can’t do or my disabilities.
My family treat me differently too, constantly telling me off for over - doing things. They don’t understand that I feel I want to push myself at times, I’m not stupid, I know what I can and can’t manage and will rest when I need to. It’s all getting better with constant explaining, but I can’t wait for them to take me seriously as the independent person I was before diagnosis, I get help when I need it, just a bit more often.
ms was in my family on my mums side and i was the one of 3 sisters who got it.
my youngest sister is the sweetest you could meet.
the middle sister would not have coped with ms so ok i can cope and i have it, its not the end of the world.
my mum died 21 years ago and i can imagine her having a word with god and saying “please dont give ms to my sweet youngest, and not to my middle daughter because she wont cope. mum would know that i can cope.”
i’m quite proud of my ability to cope. other than occasionally getting cheesed off, life ain’t at all bad.
I think MS makes us stronger somehow. I’m sure we all went into a mad panic at diagnosis but then we man up and get on with it.
Like carole, I do wonder how my sisters would have coped - they hid as soon as my parents health declined as they were scared they might be asked to help out and my eldest sister makes a huge drama out of nothing. She’s an embarrassing wreck at distant relatives’ funerals and is best avoided at all costs.
As for me, I always had more in common with my mum, especially that stubborn streak which is standing me in good stead now. I’ve always said, don’t give me sympathy (especially if it’s false) but practical help is far more useful.
Ignore the stupid comments, Jane. Carry on enjoying life and making the most of it. I’m really not sure why people think it’s acceptable to say such things. I’m sure if you had a disfiguring birthmark or a hare lip the woman wouldn’t have dreamt of making a personal remark but because you are in a wheelchair she felt that was okay? Sheer ignorance!
I agree with so many comments here I’ll go ‘like’ them as doing quotes on here can get messy!
But yes, that’s how I feel about MS, it’s a pain in the bum and is probably going to make life really difficult at times BUT it won’t kill me, so yes, I’d rather have difficult than cancer for example.
I do have the odd moments where I want to throw my toys out of the pram but they’re just moments. Generally it all passes pretty quickly And sometimes every step hurts or makes me struggle for balance but at least I can still walk for now and I’m going to keep trying until I really can’t do it (hopefully that will be a bit of a way off anyway)
Ah, hugs to all of you that have the spirit to enjoy life regardless of MS, yes it’ll be difficult, probably embarrassing and sometimes really annoying and even painful but it’s still a life hugs
Talking about other people saying they could never cope with out lot…I regularly need the help of someone to wipe my botty for me, as I find it difficult sometimes.
My hubby said to me, I would top myself before id let anyone do this for me`.
When out on my Tramper - tramping through the fields and woods with my dogs running along with me -l have thought - lf they find a cure for MS - l still want to use my Tramper - lt gives me such enjoyment - and at my age l will not be able to tear along at 8mph. Apart from that - of course l would like to be able to walk properly - and not have the bladderbowel issues.
How very true, Poll. There are things people do for me, but would die of embarrassment if someone had to do it for them. It’s as the saying goes - s**t happens to other people.
[quote=“pcrayon”] “You never know how strong you are until being strong is the only choice you have” so true with ms xx [/quote] How true this is, and I love this thread. I, like many other MS’ers am just so thankful for the good days and really make the most of them. Kate xx
I think that people think they’d never cope with something - but then if it happened, they’d just get on with it.
People are remarkably resiliant and I don’t think we give ourselves enough credit. 2 years ago I’d have thought that being in a wheelchair would be an awful existence.
Now that it’s something that is potentially in my future, I realise that I’d be able to manage it. i’m sure I’d get frustrated and certain things would be harder but I know it wouldn’t be the end of the world.
A girl I know has MS and her symptoms are all cognitive - fatigue and confusion. I have no fatigue or confusion but I have vision, balance and sensory symptoms.
I think she has it worse and she thinks I have it worse. Most will meet challenges head on. It’s human nature. Some will sink into their problems and to be honest, those are the people I would feel sorry for as they do have an awful life. Attitude is far more important than physical ability.
I’ll go ‘like’ them as doing quotes on here can get messy!