hairstylst73 22/07/12
Last reply 5 years ago
Having an extremely bad day!!

I am miserable. I am scared. I am depressed. I am….. Sick of being sick! There I said it out loud.. Not holding it in…. That’s all 🙁

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scotkiwi
5 years ago

Evening @hairstylst73
Sorry to hear that you’re not having a good day and your frustrated. Please feel free to vent, we all know how you’re feeling and what you’re going through, and are happy to listen and understand. Rest up!
S


hairstylst73
5 years ago

That’s part of my problem. LOL. I used to have fatigue so bad I was sleeping 20 out of 24 hours. Now it’s the opposite! So be careful what you wish for! I wished I didn’t sleep so much, now I am not complaining I am awake all the time. But I am losing the use of my legs so being awake constantly thinking thinking thinking is not good either. I rarely sleep now. But thank you scotkiwi 🙂


carolyn22
5 years ago

Hairsttlst73 I feel crap for you too!! This illness can be so frustrating and you feel nobody understands you!! The lack of sleep is a killer! Looking at the ceiling wondering what tomor will bring! I used to wonder if I would still be able to see the nxt morn, I lost many an hours sleep over that!! Ms can be a living hell sometimes.I hope you start to feel a bit better ASAP xxxxx


chueykooh
5 years ago

The lack of sleep is a killer for me too. It makes all your bad feelings 100 times worse. I’m scared too, scared to death. I’m sorry your having such a horrible time. I often weather the depression comes from MS or from the fear of knowing we have MS. Maybe both. We are here for you and many of us struggle as you do, the not knowing for me is probably the worst for me. Hang in there, you have all of us on your side.


boodle06
5 years ago

I’m bloody terrified too, I’m undiagnosed and have to wait for a 2nd attack before I can potentially be helped. Sending me crazy, very upsetting and terrifying. Thinking of you and I hope things start to get better for you x


hairstylst73
5 years ago

Thank you Carolyn. I am having the symptoms hard to explain. I am numb from the waist down but am having the pain in my feet from my nerves. And people keep saying “if you are numb, how can you have pain?” how the f$@K do I know? LOL but I am. And then with my walking getting worse everyone is like “you need to exercise your muscles from being in bed so much” my muscles are strong! I pushed my husband across the room with my legs to make him understand it’s not my “muscle” it is trying to understand and explain what I don’t understand myself. And I am just having one of those days! now my cognitive is in the fritz too. I keep being asked “I just told you, don’t you remember?” UM NO! I am totally faking that I am having issues with my memory! “but you remember other stuff??” ugh! So yeah just frustrated. Lol


hairstylst73
5 years ago

Thank all of youuu ❤ I am trying to get out of this funk 🙁


Anonymous
5 years ago

It will get better, friend. Then you will have great days and go down again. And we will be there to listen and you will listen to us on our crappy crappy days. Sing it, sister. We can take it.


jat721
5 years ago

Ask your doctor for a sleeping pill. Last time I was on steroids they gave me Lunesta and it worked great! It gave me a very natural sleep and I had no trouble waking up again.


hairstylst73
5 years ago

Those don’t work. LOL. I am tired of taking pills. 1 pill causes 10 side effects. Then you need more pills for the side effects which creates more pills! LOL


Anonymous
5 years ago

wow, sorry to hear you are having a “dark” day…. I try to limit mine but I do know that sometimes you just can’t!!!!! you have to be able to vent and let give yourself permission to just not like what’s happening to you. I hope you find a way to get some sleep. The whole insomnia thing can be quite frustrating but the fatigue on the other side just strips you bare. It’s hard but as has already been said, you’re in good company and it’s wonderful to have a place where people understand and where you can just be “real” and share whatever it is that is going on.


loulou
5 years ago

Hi Hairstylst
Just a thought but I was having trouble sleeping until I took Baclofen, it is a very safe drug used as muscle relaxant, I used to lie awake for hours worrying about this wretched disease and how it has ruined my life and worry about what would happen to me in the future but since Baclofen I sleep like a baby and it has done wonders for my skin! Dont get me wrong I still worry about ALL these things but just not at night
Lots of us take it on here I think, others may have different views but I swear by Baclofen, maybe you’ve tried, if so I’ll shut up but if you havnt, talk to your Doc x


cameron
5 years ago

If I get ‘midnight terrors’ I give up on myself and go downstairs, where I make either a tea or have a wine. Then I switch on my wrap-around electric blanket and put on the TV and watch rubbish. Usually start feeling sleepy after an hour or so and doze off on the sofa. I don’t honestly think you can stop the feelings, just deal with them. lol


Gav
5 years ago

@hairstylst73 Just a thought about your walking difficulties, it could be a problem with the strength of your core stability muscles, while you will still have the raw power to push things with your legs, without the control that your core stability provides it will be wasted. Are your problems new? It may be worth speaking with your MS nurse and seeing a physio to help with your walking 🙂


pottypete
5 years ago

@hairstylist Big hugs to you. Some days can be shitty and that’s when we need some compassion and understanding. Hope today’s better for you.


aardvark
5 years ago

Hi @hairstylst73 reading your “rant” got me thinking. I suffer from numbness too, not in my lower body but in my left arm. When I have been describing it to people, I’ve often thought that “numbness” was a poor description, but it would do. But it’s not actually numb in a sense that non-MSers would understand. It’s something else. It’s not numb in the sense that I wouldn’t feel it if you stuck a needle in it. My arm still feels pain. I don’t know how to describe it, it’s not something that feels like any normal sensation. We need a new name for it…

Mark 🙂


hairstylst73
5 years ago

Yes aardvark 🙂 and it differs day to day. One day I can feel the top of my foot but not the bottom. One day my big toe is numb but the rest are fine? Yes hard to describe. Some people say neuropathy? But I don’t think it’s that. I try to explain it to my husband this way. “I can’t feel you rubbing my leg but I can feel the pressure of you rubbing my leg” or it’s like when you go to the dentist and numb your mouth. You have the “sensations” but not the pain? Does that make sense, by not making sense? LOL like today for example. I can feel my right foot but not the toP of my leg. And I am completely numb in the left foot but not my leg?


aardvark
5 years ago

Yeah @hairstylst73 you’re making sense. Well to me anyway! Sounds to me like you have a serious neurological disorder lol. The way my arm feels is though I have just put down a really, really heavy bad of shopping a few seconds ago. Not the immense sense of relief you get immediately after taking the weight off, but the dull ache that you get for 10 seconds or so a couple of seconds after you put the bag down. Except it goes on for ever 🙂 And no amount of stretching or shaking it helps. Full on invisible symptom. How on earth do you explain that to somebody?

You have my full sympathy with your legs!


pottypete
5 years ago

@aardvark You just did, lol.


aardvark
5 years ago

@pottypete damn I did, didn’t I lol


hairstylst73
5 years ago

Yes our “explanations” to people with MS make sense. But not to people who don’t have it. LOL yes today is a MUCH better day in the forums! LOL


pottypete
5 years ago

When you’re having a bad day, as I was this morning with an almighty low, never give up hope, but you’d be amazed how things can change your outlook to your problems.
This morning a friend was the first to offer me his shoulder to cry on (proverbially), which bolstered my spirits somewhat. After a couple of hours I was feeling much better, partly due to his call. Then I got another from him…His mother had just died! He was the one who needed help then. Needless to say, he got it.
That also put my problems in perspective. They were nothing, compared to his grief.

Perspective! Powerful, isn’t it?


cameron
5 years ago

@aardvark – you’ve hit the nail on the head about the ‘language’ of MS. The only words available to us don’t sound bad enough. If you didn’t know better, hearing that a person with MS had ‘stiffness’ or ‘fatigue’ doesn’t appear too bad. I can imagine myself saying: yes, I get tired, or I have stiffness in my arm or whatever. Do you think this is the problem with getting people to understand? I try to make comparisons – for neuropathic pain, I say it’s like toothache in the leg. For the fatigue, it’s like the moment before you go under completely in a general anaesthetic. Cold feet: imagine you’re lounging comfortably on your settee when someone straps ice cubes to your toes (etc.)..


lloyd
5 years ago

I tell people ms is like walking in chest deep water with wieghts on your ankles and your trying to keep up with the others walking on dry ground on the side of you, and then feeling guilty that I am holding then up. They say oh no its ok we don’t mind but somehow in the back of my head I think I’m a pain Ianthe backside to be out with. Having a bad day no I’m fine till I leave the house, it’s what happens after that that makes it a bad day.


aardvark
5 years ago

The other description that I’ve found non MSers can relate to is the analogy I use for what it’s like walking on my legs.

Imagine you’ve knelt down in front of the TV to set the video up to record a great programme you’ve just caught the beginning of (obviously the people you are explaining it need to be of a certain age to understand the concept of “the video”).

Anyway, you get so caught up in this great programme that despite the fact that you’re recording it, you stay kneeling in front of the TV, watching it. 15 minutes later you suddenly remember that urgent thing you have to do (which is why you were recording it in the first place). You quickly spring up from kneeling only to discover that your legs have gone to sleep and no longer work.

You lurch over to the table which you cling on to for balance. But you’ve got urgent business to attend to so you have no choice but to walk on your fuzzy legs. Off you wobble. Every step requires a little concentration to ensure you don’t fall flat on your face. But you keep pushing on, as you know that within twenty seconds or so everything will be back to normal.

My MS legs are like that. Except for the everything getting back to normal after twenty seconds bit. 🙂


Gem
5 years ago

Hello all. My description of the ‘numbness’ is that it’s that pain you get as if you’ve sat on your foot for a hour and the feeling is just coming back but it’s that painful pins and needles type feeling. Had it for 5 months in my feet. Did eventually go but it reappears when I get too hot/tired and when I exercise.

And 3.30am in ‘panic o’clock’ for me. Hence I’m awake now!!! Not necessarily MS related – can be anything and everything and nothing all at the same time!! It’s damn annoying tho.

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