5 years ago
Alright, I am going to get this off my chest!

Last year i had the worst relapse and i was off my feet for 3 months, very scary! i think in that time all of the muscles have disappeared! i struggle to walk 10 mins and its nearly a year later. I have physio which i can do, and i am starting to swim 2/3 times a week but my trouble is i want immediate chnge! And some people want to talk about it and it doesnt help it just irritates me! If someone doesnt have MS then im sorry but they dont understand fully! And then im made to feel bad when im not entertaining the conversation. Is it weird that the only person i am comfortable talking about it too are my dogs? I am not an anti-social miserable, down-in-the-dumps kind of person so why do i get so peeved with people trying to “get it?” Maybe i am annoyed with the MS and not the people, i just dont know! Any ways, thats my rant, i feel better now ive written it down and hopefully people will look at the post and think “blimey i aint reading that! its far too long!!” 😀

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There’s nothing wrong with having a good rant now and again! I just hope that you feel better for having got it off your chest Cedelle. I understand exactly where you’re coming from and unfortunately until there is more awareness about MS, non MSers just won’t get it. I was diagnosed in 1998 and even those closest to me don’t get it 100%! It’s easier said than done but try not to let it stress you out!

Thank You! its a relief to know i am not the only one who gets wound up! i do feel better now! 😀

it’s not silly talking to your dogs about it…i talk to mine all the time. they truly do get it, and at times when they don’t, they are happy just to listen 🙂

Having a rant is fine, but the “i want it and i want it NOW!” ain’t gonna work. you gotta learn to slow down and smell the roses.Figuratively speaking. Or you will get angry, frustrated, annoyed and take it out on those who DO love and care for you.

Cheer up, Cedelle! having ms is not the end of the world and you know it!
Last year on february i lost completely my right hand, it took me many months to recover the motricity and the sensibility, i kinda know what u are going through. I agree with you that the people who does not have ms, wont ever know what is it living with. so just be always positive and enjoy the day a day, enjoy the life, is too short to be sad… 🙂

I was in the same place as you in March, coming through my second relapse. people annoyed me, I’d get annoyed with myself and it was all a self perpetuating circle of angst that led me to not feeling so good. Paraphrasing yoda, anger leads to the dark side of the force. Yes, im that cool. Anyway, There isnt any one thing that picked me up out of that state, I’m not any better physically than I was then really. I still have ms! I can most probs narrow it down to a moment one morning sat drinking a can of coffee on the curb waiting my bus to school.The sun came out and i had this cloak of anger pulled off me. Something will be your moment, you’ll wake up one day and you’ll be happier for the things you have got and inexplicably much more cheery. It will come. Look forward to it 🙂

i wish that there was an avataar type machine that would let them experience neuropathic pain or loss of mobility, just for a few minutes. but other than that we just have to talk about it. i know sometimes they don’t get it. i recently had my last relapse compared to a friends little boys mouth ulcer and cold. i was very gracious and didn’t punch her. keep up your good work


@Cedelle – You are definitely not the only one who gets wound up about thisQ its perfectly understandable and we all should be allowed to get these feelings out from time to time.

@funnybank – I seriously ‘lol’ed at that.

I can sooo relate. I get so frustrated when non-MS people feel its necessary to complain about their aches and pains or how tired they are. I just really want to tell them they should try living that way everyday as a norm… I know its not right that I get aggrevated with people but I rarely complain about how crappy I feel. Wow, I guess I needed to rant a bit too! 🙂

Having a little rant about things is the best sometimes. I get quite annoying & moody whenever i feel really fatigued and i always feel like i cant explain it enough to people, like they wont understand how bad it is if i try explaining it cause they’re not going thought it. @cheryl77 i always wanna say that to people when they moan about how tired they are & how much their legs hurt lol! @funnybank your machine idea would be a great way to explain to people what/how we feel, it would make our little tantrums understandable to everyone.

Thank u so much everyone! I thought I’d turned into a bitter cow and was being totally unreasonable! All of your comments r really appreciated! Thank you all!! Xx

Everyone has their own way of dealing with those days – I recently bought myself a journal for when I just need to get things out of my head, and dogs are just the same thing, really. Talking to people who don’t really get it can be very frustrating and patronising, but I’m sure you know that they are trying. I walked with a stick for two years and now you wouldn’t notice that there’s anything wrong, but at times I never thought I would get there and progress was so slow that I didn’t even realise it was getting better until I could easily do something I hadn’t been able to do for a year. You’ll get there, and even before you do, you’ll be surprised how much you just adapt to a slightly different way of doing the same things.

Thank u that’s very uplifting, were you having to use a stick as a result of a relapse? Although I am not in the exact same boat I am more limited than I was and don’t feel like I’m making any progress x

hi i know what you mean some pepole just dont understand no matter how you say it or put it they just dont know.
i work out the best i can every day makes me feel alot better all i can say is take your time if you feel bad sit down take time out try not to think about what your doing then try again a little at a time seemed to work for me and rush it you will just feel worse.

I had a string of relapses that affected the same leg, so as soon as I made any improvements in physio it seemed I had another relapse to undo all of the work. I didn’t even think I had made that much progress until I got set back and I realised that it was helping me. Of course out situations will be different but for me the routine of few stretches/exercises the physio gave me to do daily was pretty great, and physio is basically pilates so it may even be worth getting a DVD and trying out some of the beginners moves on your bed.

@funnybank – i wish that there was an avataar type machine that would let them experience neuropathic pain or loss of mobility, just for a few minutes. but other than that we just have to talk about it.

I feel like this also. Everyone should experience some form of disability for a short and then return to normal. If they did they could empathise with the people like us who have to have this crap disease full time.

No-one understands the words you use, or rather, they think they do and you can almost hear them thinking ‘that doesn’t sound too bad’. But ‘stiff’ in MS is not the same as stiffness in the accepted sense of the word; ‘fatigue’ is not just being very tired. It’s more like having been administered a general anaesthetic. For me the best reassurance is a physio assessment of where I am relative to the previous month or year. Often, they notice improvements which you haven’t and this gives hope. Physios and MS nurses understand – but they’re really the only ones.

You’re right to rant. With MS you don’t know what’s coming next. I call my MS ‘Extreme Living’ sometimes. I haven’t used a wheelchair yet but I had sight problems. My MS does sometimes give me a glimpse of what it feels like to lose some functionality. I’ve been lucky and most things came back. I know my loved ones don’t always understand my MS – they don’t know what fatige is. But maybe I can understand some other people better, myself. MS has certainly made me appreciate some of the small things I took for granted.

I completely agree with you, and yes Extrakate, there is plenty of things i used to take for granted, now i just appreciate being able to go to sleep when i want too, rather than battling for an hour with irritating disco leg and joint pain lol

Yes, sleep is definately underestimated. I don’t think I could cope with MS if I couldn’t sleep. I used to be an insomniac. Luckily (ha, ha) I have back problems and I get a mucle relaxant for that, which knocks me out at night (stops leg spasms for me aswell) so that’s good. My doctor tells me MS isn’t a painful condition but lots of MS sufferers seem to be in pain, like me.

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