Don’t want to drag people down but just wanted a Co nectiin with other people that know how Ms makes you feel
For a person to fully understand how MS effects someone they will need to experience it for themselves, its as simple as that.
I get fantastic help from family & friends but not matter how in depth I go into explaining how it physically and mentally drags me down they will never ever truly understand it, and thats’s understandable because it’s so so hard to explain.
It is so draining on the body and in the mind that words alone don’t even come close to actually knowing what it feels like to have it.
There’s not one second of the day that I’m not thinking about it, even in mid conversation with someone about something completely different, in the back of my mind I’m thinking about the MS, whether that be something like “how am I going to get up off this chair when this conversation ends” ? or "should I try to go to the toilet now or chance it " ? , “my hands are numb and you’re handing me a cup of hot coffee” !!!
You now have to evaluate every single thing that you do, which prior to the MS you did without even a thought.
MS is all consuming, I know some people with MS say, don’t let it control you, and believe me, I’m a stubborn git who pushes myself to the absolute limit, I really do try to be in charge of it, rather it being in charge of me, but ultimately the MS always has the last say !!
You live with it best you can, you wont bloody beat it though !
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I don’t know anyone with Ms to talk to myself. Although I try not to let it define who I am, I sometimes wish I knew someone who had it to talk to. I get lonely too.
In an odd sort of way I guess I’m lucky in that sense, both my sister and cousin have MS !
I find that visitors or family avoid asking “how are you” ? They seem to just crack on with their life’s happenings. Almost avoiding my welfare …I am of course, disabled with an incurable condition… so therefor my existence on this planet is not particularly important or worthwhile any more! I am a mum of two almost totally wheelchair bound. Trying to keep afloat with only using my feet for transferring to loo standing aid & bed. I find as I’m down there in my wheelchair I become insignificant. Do other folk know what I mean? Anyway enough of my ranting. Hope Jesus decends an can cure all of us msers!
‘jactac’, do you know or remember that song by Meatloaf…‘You Took The Words Right Out Of My Mouth’ from their album ‘Bat Out Of Hell’…, I just had to think of that song when reading your message…
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I do think this is a tough time of year for those of us who feel cut adrift from ‘normal’ life by MS, whether in big ways or small. It can look as if the whole world is having just the most marvellous time, celebrating in perfect homes, surrounded by their lovely children, charming grannies and adorable dogs We all know in our hearts that there’s as much trouble and strife - and loneliness - behind front doors with elegantly-curated hand-made Christmas wreaths - even when there’s a party going on - as there is anywhere else - we do know that really. But at this time of year it is particularly hard to tell the difference between people’s lived reality and the advertising-man’s dream-world. That makes it tough for a person not to feel that everyone else is having a more convivial time and is somehow being better at doing Christmas (and, indeed, life!) than one is oneself. Sometimes it helps to remember that pretty much everyone feels like that some of the time, and never more at a time when the world seems to be chinking the Champagne glasses, seemingly without a care in the world.
I am sorry that you are feeling so low just now.
Alison
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Sometimes for me Jos its far easier to express myself in txt rather than verbally.
I find that sometimes when I’m verbally trying to explain to someone how I feel mentally or how the MS is physically effecting me, it’s like you can almost see the shutters coming down, not because they don’t care but mostly because it’s not really making any sense to them !
How can someone walk less than 10 mtrs and then not be able to turn around and walk back ?
How can someone not be able to tell the difference between coins in their pocket or car keys ?
Come on, surely you can pull a pair of socks on ?
What you mean, you start to fall over if you close your eyes ?
All simple everyday tasks, that are taken for granted, but for us MS’ers achieving these simple things is now like being asked to walk on water, so until that person can experience MS first hand he/she is just not going to get it !
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Alison spot on.
I live in sheltered 32 flats and i am the only one with MS. Everyone else is here with other reasons a lot of them living on their own.
Eve was placed here as they thought she had early onset dementia, she is exception under 60 rule, and is such a lovely person. I have been here a year and she has flourished and they now realise she does not have dementia. she is never on her own as her family trust her to look after the grand kids whilst they work.
calvin above me is 55 and he works still and his story is his wife beat him, he was too scared to leave her, he now lives on his own with his cat for company. he has a daughter who he sees, but he is so happy now. but he bears scars that will never disappear.
Roger, he has a form of aspergers, lived with his mum most of his life, she died, and he moved here. he works cleaning a garage forcourt, he struggles with life and society, but we are friends and we all the residents here make sure he is ok, but he struggles every day, is on his how.
Every flat has a story, so many people living here lonely but we all take care of each other.
I am classed as human. Yes I have MS, so what. So many people have worse then MS, they have been mentally beaten, illnesses I have never even heard of, deformed bodies would scare the hell out of you.
Corrine, she is amazing. they dont know what happened to her. They believe she had strokes, I know she has some sort of brain thing but i dont pry. She is disabled in a power chair, her body is constantly moving, she can just about talk at times, but is so funny when she does, always tries to cheer people up, and i see her doing her OWN LAUNDRY, she puts it in the machine and when its done she sits for ages folding each piece, sometimes having to redo a piece as her shakes are so bad but she never gives up.
Joan is so bent with arthritis, she can barely lift one leg up to walk but everyday she does. she is in so much pain but never complains. I look at her sometimes and i think jeez one puff of wind she would snap. but Joan just keeps on going a true warrior. she is 82.
I look around me here and I feel HUMBLE. I am never lonely i have my forums, my blog, I chat on phone, i meet people in the corridor when i am out of my flat, I have MS so what…jeez i feel like I am actually one of the lucky ones.
every house in the land has people living who seem to be happy on the outside but inside they can be lonely and in pain.
I try to help people now, by talking to them, doing their shopping online, any little thing i can do to help which stops me feeling lonely and i feel like i am doing something useful.
DEPRESSION is the reason why we get so low. I have been there believe me, but you have to look outside of the box, yes we have MS, but you know what if that had not slowed me down I think i would have had a stroke instead as at the point of my becoming ill my BP was 220/125 lol. I was working 60 hours a week. MS slowed me down and now i have time to see the world around me, so much to see. Just my garden i had when i was living with my husband. so much to see.
I never had time before to actually sit long enough to do that lol.
I loved my garden. I was lucky to have had a large one when my husband and I moved into our own home and across the road was a lovely big park too, surrounded by hedgerows and trees (crab apple and hazelnuts). Blackberry bushes covered the railing and every year we would feast on blackberry crumble and crab apple jelly. The hedgerows were teeming with life, little homes for spiders, and insects and hidden would be birds nests.
My own garden was designed to encourage life into it, birds, hedgehogs, we added chickens rare ones. My garden was not fussy, it was a home for all who wanted to come and live there. My husband and I would sit for hours in our conservatory watching life it was like a metropolis in its own rights. We had squirrels, rats, mice, spiders busy casting webs. Fruit trees the home for some interesting moths.
Sadly when my husband died i had to move as having MS I could not look after it. I moved into a sheltered flat which lucky has a small outside area, and now my outside has a teeming wildlife all of its own. Every night I have visits from foxes, and hedgehogs, occasionally a rat, when you watch my videos you can see little creatures all busy climbing over ornaments and a concrete squirrel and ornamet cat become home for various little things who have made it their homes. You can see on the floor worms moving about rushing to find cover as they feel the vibration of hog feet coming their way.
Yes i spend hours now videoing my garden as i never realised just how much activity there was at night. Its simply amazing. Two hogs eating together. Every night even on the 20th December 2019 I am watching the antics of hogs and fox, its just amazing and keeps me sane. When i started my videoing it opened up another avenue for friendship as i am now joined into wildlife groups on facebook and have more people to share my passion and my life with and i never mention my MS, i just feel NORMAL interacting with NORMAL people. If that makes sense.
https://youtu.be/av4QmKsvJqU
I cant believe now i have time to actually see things. MS has been a blessing in some aspects. sounds daft but its not, I have now had a year of actually really seeing things for the first time, learning about people how they struggle, animals and insects, living in their own metropolis, MS has allowed me to see. I am never lonely now, I was but not now, to be honest I dont have time to be lonely lol. I have support on here from wonderful caring people YOU KNOW WHO YOU ARE, they keep me sane as instincively they seem to know when i am down.
I hope you feel better soon, you will never be lonely on this group. just reach out, we are here for each other.
sorry you have been subjected to a true crazy chick ramble ha ha. Hope you enjoy the hedgehogs.
MERRY XMAS xxxxxxxxxxxxxxxx
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Hey CC Happy Hogmanay! Great footage of Hogs.
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I’ve now made friends with a few people who have ms and we support each other, my husband is brill and does everything he can to make my life easier, he tries to understand, as do family and friends, but they’ve no idea, because like someone has already said, you have to live with it.
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Jactac, we may not be able to beat it, but we can give it the odd slap or grab a small win from time to time and we can always laugh at any funny bits.
i am not so self absorbed to think that everyone has access to funny bits, so I would invite anyone to laugh with me at mine.
these threads are evidence that we can share good bits and support as well as empathising about the bad stuff.
all the best.
mick
Mick,
I’m totally with you.
My wife and I have been in absolute stitches at some of the situations I/we have found ourselves in because of the MS.
As for giving it a slap, well I’m up for a fight with it every day, I’ve never been one to accept defeat easily, hence sometimes finding myself in tricky, awkward, and very often embarrassing situations.
LOVE IT HOGMANAY fab…thanks for the smile. x