What the hell is wrong with me apart from the obvious I have MS, but I’ve never felt as low as I do right now. Last weekend I had a sickness bug as did my kids (good job we have 3 loo’s) this had a real affect on my MS my body felt like it was incased in concrete and my hands felt like they had been scolded!! Took 4 days to get over that 
& still can’t decide wether it was a relapse on top of the bug. This weekend gone I started with cold or could it be flu? I’ve never felt so ill in all my life and it’s completley knocked me for six. I’ve always struggled day to day to manage family life but these last few days I’ve had all on to get out of bed and when I have I just can’t be bothered to do anything anymore! It’s so unlike me, my kids are great but they have never known anything else had MS as long as I’ve had them. I feel like I’ve been cheated as I’ve never been able to do normal things with them like take them to footy, shopping in malls etc etc. I don’t go anywhere any more and feel like a recluse locked in a useless body. Sorry to rant but just needed to vent my feelings somewhere. Does anyone else ever feel so low thanks xx
Yes I thinl if we are all honest we all feel like this at times. The problem is we feel we cant say or acknowledge it. It is hard to understand how we feel on a daily basis unless you live with it. Many people are there for the goodtimes but it is often harder to find those who listen and allow us to vent how we really feel. You say you dont go anywhere anymore and feel like a recluse this rings true to me as I also feel the same. Is there a particular reason ie fatigue that is one of the reasons for me. My kids have also known nothing else but are perfectly adjusted its more my feelings. A friend phoned tonight I hadnt spoken to her for a few weeks as have been feeling week and very tired she wanted to know was I feeling unwell or something!! I dont think she has a clue and spent the next 45minutes talking about her problems. It will pass if it doesnt see your gp. Try and set small targets each day and maybe meet others in similar situation to yourself. Do you have rrms? I dont know your circumstances but when the kids are at school rest you dont have to be superwoman. My washing and ironing etc is out of control as I dont have any family nearby to help. I now ignore friends who look at the mess and think instead its not that important in the grand scheme of things. If I have the energy I do something like watch a dvd or watch them bake etc . Im not allowed to drive so dont get out very often but I relented and got a scooter. For every negative thought write one positive alternative beside it and remember you are not alone you have everyone on here to chat to. xx
Most mornings I get the kids to school, get home and go back to sleep. On my better days they may get a dinner otherwise it’s beans on toast, omelettes etc.The house is untidy, I don’t iron anymore and life’s passing me by. My partner works and without them even knowing it, my kids actually care for me. But I’ve learnt to go with the lazy days because at least it makes me kind of human when they get home from school. I completely get where you’re coming from. Its awful but you’re not know your own xxx
Oh Bambi you poor love, getting this bug has really taken it’s toll on you. Having ms is bad enough so it’s no wonder your down in the depths at the moment. We all get this way at times without having a bug on top as well. Don’t beat yourself up, let the washing, cleaning go, it’s not important, but you are. I always think if I see a spider in the house, hey that’s good it will keep the flies away. So really I’m saying to you the same as Anita, think of the positives and let the negatives take care of themselves. I wish you better soon and send (((((HUGS))))
Janet
x
Hi All I have rrms and suffer badly with fatigue all I ever seem to do is want to sleep. Once the kids have gone on a morning that’s me back in bed (feel like I spend my life there at the moment) I don’t pretend to be supermum anymore I listen to my body & if it says I’ve done enough I leave it for another time, something I’ve never been used to doing but needs must now. I have friends but like you Anita2k they seem to dismiss my problems and insist on making sure I know about theres (think they struggle to cope with my ms as do a lot of people) don’t know why I’m still the same person just not as able bodied anymore. Oh well suppose I just got to get on and deal with it - could do with a nice long break away Thanks xx
I notice Bambi you are replying in the middle of the night. Do you have a problem with sleeping? There are things you can do that may help with fatigue it’s harder to get now but is worth a try. Modafonil is used for fatigue and works well for some people. You need to contact your ms nurse as only your consultant can prescribe it. If you are awake at night due to pain you could try clonazepam which helps with muscle spasms and sleep or amitriptaline which helps with nerve pain and sleep . Are you still mobile if you can try and get some fresh air. I spend long periods in bed but when less tired I try and plan something to look forward to. Don’t. Give up and let us know how you get on. Xx
Hi Anita, I’ve never been good at sleeping well since I got MS i have restless leg syndrome, twitches & pain. Taking gabapentin at the moment but dosen’t seem to be having that much of an affect. I do usually manage to ride through it and stay in bed but it’s this damn cough that’s taking me downstairs in the middle of the night - don’t want to disturb the kids. I’ll have a look at the ones you’ve mentioned and speak to my MS nurse. Thanks Sue xx
Funny enough - I always hit the pits of despair etc at this time of the year and trying to avoid anti-depressants if possible - going to give 5 htp a try - its supposed to help with sleep and lift the mood, so fingers crossed - you can get it in Holland & Barratt at the minute, half price…work in an office but the fresh air idea is a good one…
The fact you feel low at this time of year maybe due to lack of sunlight as well as ms. Are you taking vitamin D? The Baths and London MS Blog is good for research and info. Exercise if you are able is also I believe very good for depression. Hope you feel better soon.
Thanks Redman I’ll take a look at that. Anita yes take Vit D unfortunatley I struggle to excersise due to Ataxia in my legs, I did try swimming but couldn’t stand to be in the water very long (weirdest feeling ever, only ever shower now for same reason and struggle to get in & out of bath, balance issues) I’ll take a look at the blog you mentioned. xx
Ive only just joined this forum and im already glad that i have.
I have had ms for 32 years. Up to now i have had loss of vision , which returned, numbness which is now in all parts of my body. Im now getting very bad pains in my head, neck and back. Ive just started seeing an ms nurse which i find helpful. I guess im lucky compared with a lot of people. The neorulogist says my type of ms is called benign sensory. I too cant lie in water, but am now finding that i get in water that is too hot and i go very red. I too get very tired, i still work a few hours, and find if i need to sleep in the afternoon then i do. Theres always tomorrow to do the washing or ironing.I dont have any friends locally and find that other people dont understand how you are feeling. They cant see my illness so think im ok.
The one thing i try and do is find three positives each day, even if its that i got out of bed without feeling exhausted. I have been surrounded with ms all my life and have seen what it can do, my dad had it and so did his two sisters.Im also on anti depressants and have just started hrt which i find is helping as getting hot isnt something the nerve endings like
.
Zobo It’s true what you say if they can’t see it they think everthings ok! I have a friend who recently broke her wrist & oh boy did I know about, yet when I try explain what I’m going through she just shruggs her shoulders and says she dosen’t understand it!! I said I’d swap her broken wrist for my illness anyday. Been to the doctors today as things are no better, she’s so understanding & caring and was concerned that no one was looking after me I said as above because they cant see it they just presume all’s ok. Anyway came away with anti-biotics (got a chest infection) and if things no better with legs sending me for a course of steroids x