Forum

feeling kind of lost

hello people,
i have never really used this forum, but it seems a nice place to visit. very few people know i have MS, so i often feel quite lonely about the whole thing. usually i’m fine, but i guess i’m having an attack. yesterday my right eye went all wonky, and it’s still a mess today … and probably will be for the next month at least. it’s been about 6 months since i’ve had a relapse, and sometimes i almost forgot i have this thing. i feel like i’m waiting for the overwhelming fatigue to hit me, and i’m really hoping it doesn’t. like lots of you i’m sure, i’m way too busy for this. i also broke up with my partner recently and i guess i’m feeling quite alone. i really should toughen up about the whole thing, but today i’m feeling pretty low. maybe it’s a comfort to share that with other people who might be able to relate. i hope it’s not annoying to come on here and complain, i just feel kind of lost today.
kk

thank you corinne … i think it’s one of those days when i needed a word from a benevolent stranger, someone who understands what it’s like to live with this. i have no friends with MS, and i think i will take some time to explore these boards and the people who come here to connect. thank you for your kindness. xxkk

I’m quite new here kk, and new to MS but have found the site useful and of some comfort. I have also recently split with my partner so can relate to how you feel. Sometimes things feel so overwhelming but we need to get back to a place where we remember our friends, family and the things we enjoy doing that make us happy.
I hope you’re eye improves soon and in the meantime rest up as much as you can (although I also know how hard that can be) and take of yourself.
Happy to chat x
Kx

Kirstie, thanks for your kind words, I really appreciate it. It’s nice to meet someone my (exact) age with MS. It must be hard for you to be new to this - I was diagnosed about 8 years ago, but I remember how emotionally complex it all was at the beginning. I hope you are doing ok with your split up - I am happier, but in many ways life is more challenging. Anyway, I know I should rest at home, but I kind of doubt I will - too depressing. The sun is shining today and I think I will go out to find friends tonight and distract myself from my wonky eye. Try to forget about MS for a few good hours. Take care & yeah happy to chat. Thanks for getting in touch. xxkk

sending you some (((((hugs))))) dont feel alone you have us on here that know just how you feel.

jaki xx

Hi - Sorry that you are not feeling too good at the moment.
Also sorry to hear that you have recently split up with your partner, but dont worry about the fatigue creeping up on you, your eye prob may have been brought on by the stress of the split and if you try and relax and ‘chill out’ (if that is possible) that hopefully may be the most you will be affected? Of course the problem with having MS though, is that everyday is so unpredictable and we always fear the worst when any symptoms appear.
Try not to worry (even tho that is easier said than done). And well done for sharing your feelings on here - its much healthier for you than keeping it all to yourself.
Take care - Equus X

oh you guys are so nice!!! usually i’m really positive about my MS, but it often happens that after the first few days of an attack, once i’m sure that’s what it is, i do feel some despair. i usually have a good cry - 1 per attack. it’s funny because i felt like crying all day yesterday, and i thought it was because of something that happened at work - but i’m sure it’s this awful vulnerable feeling that i get when some part of my body stops working suddenly with no warning, just broken. and when my vision goes i’m so dizzy and disoriented, everything just feels so out of control. i was going to cheer myself up and go out tonight, but i’m taking your advice and chilling out - to be honest, some intense exhaustion hit me this evening and i don’t think i could go if i wanted to. i’m on my couch with a glass of wine and popcorn in my sweatpants and hoodie. rockin friday night! anyway, thanks for the good energy people, you guys are the best. this is such a nice forum. xxkk

kk77 wrote:
Kirstie, thanks for your kind words, I really appreciate it. It's nice to meet someone my (exact) age with MS. It must be hard for you to be new to this - I was diagnosed about 8 years ago, but I remember how emotionally complex it all was at the beginning. I hope you are doing ok with your split up - I am happier, but in many ways life is more challenging. Anyway, I know I should rest at home, but I kind of doubt I will - too depressing. The sun is shining today and I think I will go out to find friends tonight and distract myself from my wonky eye. Try to forget about MS for a few good hours. Take care & yeah happy to chat. Thanks for getting in touch. xxkk

Really same age? I don’t know anybody with MS and still don’t know an awful lot about it.
Emotionally complex is right, my emotions are all over the place and due to current, on-going symptoms affecting my balance, vision, hearing, sometimes my speech and not to mention my confidence I have been off work for far too long and am climbing the walls. I desperately need to get back to work before I forget how to.

Glad you’ve decided to rest and a glass of wine sounds a great idea. Maybe some Friday night TV will keep me from total boredom… I have no drawers or cupboards left to tidy :lol:

HUGE HUGS xx

jobryz you are nice! thank you! xxkk

Hi Kirstie,
I tried to send you a PM message, but this user interface is a bit messed up!? Anyway, when I was first diagnosed it was hard for a while - I took time off school, but it is important to try to get back to it, to have a normal life again. Feel free to send me a PM message if you need some moral support - I’ve been there. xxkk

Hiya
Hope the sofa/tv/wine & popcorn have helped! Chilling is a very good strategy :sunglasses:

(((( CHILLAXED HUGS))))
Clarexxx

Thanks Clare! It’s totally helped … the wine particularly. Man was I in a funk this afternoon! All the support has helped too, so nice not to feel alone, when you’re feeling alone. Hugs back at you! xxkk

kk77 wrote:
hello people, i have never really used this forum, but it seems a nice place to visit. very few people know i have MS, so i often feel quite lonely about the whole thing. usually i'm fine, but i guess i'm having an attack. yesterday my right eye went all wonky, and it's still a mess today ... and probably will be for the next month at least. it's been about 6 months since i've had a relapse, and sometimes i almost forgot i have this thing. i feel like i'm waiting for the overwhelming fatigue to hit me, and i'm really hoping it doesn't. like lots of you i'm sure, i'm way too busy for this. i also broke up with my partner recently and i guess i'm feeling quite alone. i really should toughen up about the whole thing, but today i'm feeling pretty low. maybe it's a comfort to share that with other people who might be able to relate. i hope it's not annoying to come on here and complain, i just feel kind of lost today. kk

Completely recognize the being way too busy for this MS stuff - very well put!

I’m sorry you are having such a difficult time. It is, I am sure, very good to just get on with life and ignore MS if it lets you, but that does mean it comes as a nasty blow when a relapse hits. But then it comes as a nasty blow when a relapse hits whatever you do, so there you go! It is definitely one of the tough things about MS that you don’t know what it’s going to do next. I’m sorry you have new problems to deal with - no doubt you will be getting professional advice on the eyes as a matter of urgency - please don’t assume that it’s MS until you’ve got it checked out.

I think you are being a bit hard on yourself, expecting yourself to ‘toughen up’. I don’t think anyone is tough enough to take this sort of thing, plus the pain of splitting with a partner recently, in her stride. It just doesn’t happen that way. I doubt whether you would advise someone else in this situation to toughen up…? Perhaps you need to be a bit kinder to yourself, and to respect your feelings - there is nothing wrong about feeling the way you do. You will get through these latest MS problems, and the difficult feelings that go with them, just as you got through the difficult process of diagnosis and all that.

I’m glad you haave found this board - I have found it such a relief to find people who recognize some of the difficulties and fears - and it’s a great place to share them.

Alison
x

Alison, thanks a lot for your note, I really appreciate it. It’s true, I’ve always been hard on myself, so thanks for reminding me about that. I guess I’m not used to ‘public’ despair too, but I’m really glad I shared my thoughts here, because I feel so much better now. Everyone has been so kind to me, lots of encouragement plus wise words, and it means a lot.
xxkk