Last reply 8 months ago

I have an amazing partner I have 3 kids youngest 14 oldest 22, 2 step kids 22 & 30 I have only a handful of friends and my family around me yet I feel so alone WHY IS THIS 🥺
Recently I’ve been getting weaker and weaker extreme fatigue has plagued me from before my dx but I’m feeling more and more housebound because of it, my neurologist says theres nothing they could give me to help with this yet I read often that there are drugs out there. I fear going into a wheelchair but I see it creeping up fast, as I’m walking in lead boots daily.
I’m struggling to see a future I honestly feel like I’m dying a slow death, and though I’ve always tried to keep a positive outlook I’m feeling now like I’m giving in.
Sorry for this depressing post but dont feel I can own it in front of my family and friends

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8 months ago

never give up to this feeling
its a matter of surviving its a challange dont stress its ok not to feel ok
even if its most of the time
distract yourself dance dobwhatever watch netflix no need to be exactly like before or be stuck to one routin do the activity that suits its normal to feel alone since ms is like finger print no one share the same issue as u exactlbut try to focus on you your beauty look normal in ur words prove to urself before others that u r same person

8 months ago

Hello @eeyore73, yup, that’s the nature of this particular beast and it sucks. On my miserable days, I feel like I am being eaten alive from the inside. On my more positive days, I think about youngsters who are diagnosed in their teens and forbid myself to feel sorry for myself. I too have an amazing family, the sorts of things people dream about and never get to have, and yet, I can feel like I’m the only person in the world and am completely on my own. I think a lot of us feel the way you do. I hues we all have different ways of tackling it. It is a fact that we need to be able to distract ourselves. When I get wrapped up in a fave TV show, I somehow lose my symptoms. I reckon you’re in a bit of a fug at the moment. Don’t feel guilty about indulging yourself a bit until your spirits are up again. I don’t have a magic cure but hey, at least you know that there is at least one other out there who understands how you feel! Stay strong x

8 months ago

I am still waiting to be diagnosed so can’t exactly say I am a sufferer yet….but I know how you feel and don’t for one moment think you are alone. The isolation and head shit that sets in is awful. 🙁 I have been home for 7 months unable to do much at all and my husband is gone 12 hours a day, pretty soul destroying at times so I know where you are coming from and don’t have any answers for you but a hug x

8 months ago

Hi @eeyore73!

You’re not alone, we all go thru phases of feeling isolated as no one other than another mser gets it!

Just keep putting one foot in front of the other and you’ll get to a new day tomorrow.

I think that you could be struggling with fatigue and not realise it. Are you giving yourself plenty of rest breaks with peace and quiet to replenish your energy levels and having a nap if you need to? I’m a different person when I’ve had a wee rest / nap, I do a fantastic Dr jekyll and Mr Hyde impersonation otherwise! 😂

It’s not a sign of weakness, it shows strength in managing our common condition, as I’ve found out over the last couple of years, hated taking naps but now having to have one after work some days or I can’t even manage to eat dinner never mind make it! 😉 Brain reboots and functions properly in the evenings, allowing me tv time and conversation with my hubby, rather than losing the plot and roaring at him for no reason! Some nights he will let me nap until dinner is ready, other nights I get up and make dinner.

I suppose what I’m saying is, listen to your body, if it’s telling you that your energy is depleted, having whatever form of rest helps you recharge your battery 🔋 then get up and get on afterwards!

Chin up!

Vivien xxxx 🤗

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