Friends and acquaintances are trying to be helpful saying “You can do it!”, “You got this!” and encouraging things will get better but sometimes I just feel like shouting “You have no idea!” or “You don’t know that!”. I am a positive person. I am persevering. But I am also exhausted and aching and have very real concerns about my future. Realistically, there are things that I just can’t do at the moment and I don’t know if I will be able to again. There is definitely a place for positive encouragement but what do I say about the reality of my future?
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Not exactly annoyed, and people are only meaning well, but you do have to think “Thanks, but I have become perfectly well aware of my own limitations (sometimes by exceeding them and then suffering for it) and I’m NOT happy about it!”. I don’t think there is any one of us who wouldn’t leap at the chance to be rid of it completely- but that ain’t going to happen any time soon, so I am just plodding on, taking one day at a time, and trying to manage it and myself the best I can. I don’t think people realise how scary it is having an uninvited guest in your head!
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I agree… to a point.
People do only say things as a kind of platitude…what else can they do?
Ive seen posts from MSers saying theyve had people say Oh it must be awful for you, living with a disability…
Yes, I`ve received both types of things said to me.
These unknowing people cannot know how we feel…how each day we struggle to perform the simplest of tasks…how we loathe our failing bodies etc.
But I know a man who has had MND for 6 months and is unable to even sit in his wheelchair and look out of the window now.
I also know someone with cancer, who smiles at me and asks how I am.
What the hell…we all struggle with something and dont know how it feels for those who may suffer from whatever, do we?
Positivity is hope…without hope we have chuff all.
Maybe today you cant find your`s eh Profy?
Come on lad, if you cant do summat today, maybe you will tomorrow…but it isnt gonna be easy.
There are oodles of things I`ll never do again.
But we are alive! I wanna stay alive too.
Chuff knows what the future holds…I worry about losing my hubby and I know it would be horrendous. But maybe I`ll go first.
Crikey, I am getting maudling now…We`re all entitled to a rant afterall.
Hang in there chuck.
Boudsxx
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I can get utterly incensed by people who express their positivity when they don’t live our lives.
Only each individual can know what it feels like for them. So anyone else giving encouraging, motivational ‘you can deal with the limitations of MS’ in my opinion can sod off. My life sometimes is bloody difficult and there are times when I need to be able to shout that out without friends and family urging positivity on me.
So I’m with you Prof. You’re not the only one!
Sue
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Hi, I too get sick of people trying to be positive for me, also telling me I look well…oh does that mean I must be well, I try to look after myself, keep myself nice, have a bit of self respect…but then I think that’s looked down on, “oh she must be ok”, well screw that, I feel like shit…doesn’t mean I have to look like it as well…even my bloody nurse says it…but being a Yorkshire lass I’m quite out spoken and I don’t mind telling people what I think, put them straight, now they’ve stopped saying it, I’ve made them realise, if I could do it I would…personally I don’t worry about the future, I was DX’d aged 47yrs, I’m now 61, no kids, just me and my old man, if he goes first I’m up the creek, but I’ll face that if it happens…take care all, chin up.
Jean x
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People don’t bother telling me I look well anymore. I take it that actually I look like cr@p!!
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This stuff is very complicated. No one can fully appreciate how another person is feeling and (I think) we all make snap judgements based on not a lot plus our own experiences, no wonder there are huge chances for getting things wrong. It is also quite a normal thing to be encouraging and positive and sadly the intended message and the received message are often very different.
I reckon that true friends will give leeway so that if we do “go off on one” or rant, they will still be around when you do need their particular brand of friendship. When I want to explode, I sometimes have the grace to think "what would I be saying or doing if our positions were reversed.
Mick
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My my. Well at least they NOTICE YOU. You not one of the thousands of invisible people living with their own disabilities, physical and mental.
We all have our own trials and tribulations, and these people may be well meaning but have you considered how they are? Maybe they are just wanting a conversation, they could be down and depressed. They may be worried for their own future. They didn’t walk pass you and look the other way in uncomfortable silence did they?
I would rather someone say something to me then ignore me.
I have an 84 year old who lives in our sheltered accommodation. She is often seen wheeling around a heavy brown garden rubbish bin for collection for council. She goes around doing the OLDIES SHOPPING lol. She never stops. When she sees me trying to push my pushy across the grass she always says “Hi there missus, you can do it…” and she actually spurs me on. YES I CAN do it even if i have to sit down and rest.
You know i sat down by my computer the other day, and I thought hell how many WELL people do i actually know. You know what hell i don’t know ANY.
Every one of them from young to old has something. I am supporting 3 people with terminal cancer at the moment. One actually comes here to have a chat. She is 54 with the worse breast cancer you can get. she was homeless no fault of her own. She has now decorated her new flat herself even though she has had chemo and treatments. Paint a bit throw up, paint a bit throw up.
She comes and cheers me up. We never talk about our illnesses just laugh and giggle about stupid things. Oh yes and of course gossip lol. She is now where i used to live so knows same people lol.
2 others one is doing a go fund me, as she knows now the massive tumour is not shrinking on her breast she is hoping to go to spain for radical treatment and needs 20,000 that women has NEVER GIVEN UP. she is 60 and still rides her horse.
James my mate he has terminal cancer and is having six weeks radiotherapy as a last resort. He also has MS. He isnt about to give up. He said to me the other day not sure which is worse the cancer or the MS at the moment. but hell I want to see the end of this covid lol. He wants to be around when there are street parties when the virus is finally dead lol.
I am surrounded by positive people. Does it make me positive. I suppose it does to a certain extent as i think hell what have i got to moan about. i had 5 people but lost 2 about 2 years ago as they lost their fight both had cancer one had terminal bone and MS and the other survived breast but ended up 5 years later with bone.
I speak to people all the time everyday on internet, they are worried about high blood pressure, their arthritis is killing them, their fibromyalgia is in a flare, the list is endless.
I actually would love to wake up to someone who is stood in front of me, full of the joys of spring and vigour and not worried about their health. that ain’t happening soon lol.
So if someone is positive with me and says come on CC you can do it, instead of it irking me, i think thanks for noticing me, yes i can do it but today you know what I DON’T WANT TOO. I want to have a day off trying to keep mobile lol. I want a day just chilling out on my recliner with poochy, and filling my brain with rubbish on now TV or amazon lol. I will try to do it tomorrow. today is a non MS chill out day, it WON, i lost lol.
Let us not waste useless emotions we need all our strength to fight this thing. Or should we fight it? Maybe like when your chucked into the ocean and your trying to keep afloat to survive and know its just a useless effort but you still keep doing it. Are we not mostly just the same?
Being on here means we are fighting this thing surely. And if we are fighting it then we need encouragement like any boxing match, your the favoured and people are ROOTING FOR YOU. No Prof they haven’t just walked on by with their eyes averted they are ROOTING FOR YOU in their own way.
Peace stay strong. Look around you count how many people you know who are actually well. i bet you can do it on one hand.xxx
NOTE. For those who have not met me.
2017 October. I was living in a loverly home with my husband of 30 years. we had chickens rares which were my hobby and kept me mobile. My hubby had COPD. we also collected classic cars and went off road production car trailing until i got too sick.
2017 October i lost him suddenly to sepsis.
I moved out of my home and had to re home all my chickens. I was encouraged to move into sheltered where i would be safe.
It turned me more disabled. i hated it.
with the help of my MS nurse we got me moved to an independent sheltered bungalow. I LOVE IT.
i am finally after 3 years finding my life again, and fighting this damn thing.
If THAT OFFENDS you so be it. But this disease aint going to beat me.
I have even met someone quietly i never thought I would its only an internet friendship for now but we are kindred spirits and talk constantly we both have MS.
If i had stayed in the sheltered i think i would have ended up in a home. Now i am rooting for myself. MS YOU CAN GO DO ONE. bog off. lol. I have life to live. albeit with aids lol. xxxx I even have my new hobby. Hedgehog & wildlife Junction on youtube. what fun a bit prickly but fun.
Happy NEW ME……lol. *life begins at 69 lol…
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Hi Crazy chick, Love your reply,
Jean x
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people are slightly discomfited if you tell them you’re unwell/unhappy/ so we play their game and appear to be all singing all dancing when we are anything but that.
and lets not mention the ‘wonderful sense of humour’ we’re supposed to have developed since we were dx’d.
I am angry/p***** off about having m.s. !
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in the early days of MS a friend once said " you’ve lost your sense of humour " GRrrrr over the years she really regrets that.
Jean x
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I don’t get annoyed if it’s meant kindly, but I’ve been blessed by being surrounded by people who are trying to understand and do real things to help me. If it was just a cheering section that offered useless advice without actions, then I’d probably be offended, too.
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I support your right to be angry and pi$$** off, I also have times when I am raging. I can not afford the energy to let them last too long. Mellow “whatever” fence sitting is more economic for me and gives me the chance to enjoy any good stuff that comes my way.
mick
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I feel a flash of irritation myself sometimes when this happens, but try to tell myself that people are just doing their best. Recently I have found myself doing it too, with a friend who has a quite different issue to deal with. I dare say it irritates the heck out of that person also! But it’s just really hard for the person not going through it to know how to get it right, isn’t it? Or that’s my experience anyway.
Interesting question, interesting replies - thank you for posting.
Alison
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I often think it could be worse. I think I am just really struggling as I have been trying to return to work and I am struggling to even manage 2 mornings of 1 hour at the moment. It is such a life change and I don’t like to be a downer. I think just needed to vent and have my pity party moment. Thanks for letting me 
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Thank you, everyone. I was feeling a bit fed up and I guess I didn’t want to post on my Facebook etc as I didn’t want the pity. I just wanted some people who understood to say, “I get it.” So thank you. I didn’t go into too much detail at the time cos I was feeling tired and fed up but I completely think they are all being supportive and intending to be encouraging and I know that I am incredibly lucky to have so much love, support and encouragement. I know they might feel pity or helpless or inspired or angry on my behalf- and lots of other things too. In the last 12 months I lost the ability to use my left limbs. I am so very fortunate in that they are feeling and moving again and I have amazing access to OT, physio, MS nurse and a great bunch of family and friends who cannot do enough for me. I feel guilty when I have a bad few minutes cos I know do many people do not have such a great support system (not just MSers). I guess I was finding it hard to go from being a professional (who led a team of 15 and worked 50+ hours a week being fiercely independent) to being unable to put my shoes on or butter my toast or walk more to the car (for now) more challenging than I’d realised/let on. I think a lot of it was my frustration talking and I was trying really hard to bite my tongue and not snap at any of those people in my life who are saying those things because I know it was all meant with genuine concern. I am normally so optimistic and positive that having a bit of a downer threw me. So, thanks again for letting me vent. The anonymity of this helped me to be more honest with myself than I had been before. Apologies for being a little self indulgent, I’m not normally like that.
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Hugs to you
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Its ok ProfY, dont apologise for feeling self indulgent. Its great we have this place away from loved ones, to vent.
Take care sunshine!
Boudsx
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Hi,
I came here looking exactly for what you said “A place to vent” away from loved ones where you’re not being judged by anyone.
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Look up ’ Toxic Positivity’ it’s so annoying when people tell you ’ ah I’m sure you’ll be fine ’ etc etc. ’ stay positive ’ ’ you can do this '.
So unhelpful. I completely understand you. People need to let others rant sometimes and just sit with their feelings, rather than always trying to wish bad feelings away. It applies to other things in life too, not just MS. I try to let people be sad and I listen and I tell them I am sorry and that it must be absolutely soul destroying and frightening and if there’s anything I can ever do, I will be there. Even if it is just to listen. Then after that’s done, IF the timing is right- I would try to add some positivity- maybe. If it doesn’t feel right I just let the person vent.
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