MS - how do i cope with not knowing if i'm going to get better?

[hatwoman]

i fear this may be a htread where i just, verbally, throw up all over the place...

diagnosed with ms ten years ago. bad relapse then, coupls of mild ones since. virtusly nothing for abt 5 yeras. ran the marathon last April, been running very week since. never fitter. pah.

last 4 weeks, tingly stuff all over. fatigue, weakness, stiffness in hands, loss of fine motor skills. dropping stuff. horrible damp, yukky shitey feelings all over. often don't know where my arms/hands are if i can't see them.

week before last I was dtermined not to "give in" (whatever that menas) forced myself out everyday to at least walk for about 30-40 mins. ended the week feeling worse tahn before

been on 500mg oral methylprednisolone for 5 days. just finished to day. this week - no exercise to speak of. til yesterday - walked the dog for an hour. left me exhausted.

i have no idea what the point of this thread is. i'm fed up. i want to be better. i want to know whether to rest (ie do nothing) or if that's just rolling over. i'm scared it won't go away.

bumping into active convos...just in case...but off to bed soon.

Sorry hatwoman.

I saw your thread and had to say something. I dont have MS but I do live with it IYSWIM. My OH was diagnosed about 10 years ago.

Its a shit condition and poorly understood IMO.

Is there anyone you can talk to? Are you in touch with the MS society at all?

I wish I could say something more useful. I really hope someone who has more personal experience sees your thread.

Have a good night.

thanks chegirls. i know it's a vague post..and there's not a lot anyone can say. dh is a star (thank the lord) as are dds. last week I couldn't tie my hair up - dd1 did it for me..and saw the humour in it. had to stop myself getting all soppy. dd2 gave me her favourite teddy to take to bed. they're buggers these kids. make you wnt to cry by being nice....

i just want to gte back to feeling normal. if somone could say "you'll be feeling ok in a month" then it would be fine. but, as you know, ms sn't like that. hope your oh is doing ok.

must be v hard for you too - being the supportive one etc.

Hi Hatwoman.

I have MS. I had a first 'attack' in March and relasped in October. I have almost constant burning in my legs and back, occasional real tiredness, pins and needles etc. I've qualified for injections as I've had 2 illnesses but I don't know if I want them, the side effects can be bad, the fatigue they cause will cause problems.

It takes time for you to recover, even with the steroids. I've only just recovered from the October attack but the burning is still there. There's nothing wrong with resting, listen to your body, it's telling you it needs a rest so do it. Build yourself up slowly, it takes time but you will get there. My approach is to just go with the flow, I can't control what's going to happen so I'll sort it out if it happens again. Give yourself some time, your body's been through alot.

I'm normally around if you need some support

thanks for posting belle..i'm just having a downer and feeling sorry for myself. probably expected the steroids to work miracles. i switch frm thinking "had 5 years of excellent health...i'm sure it'll come back" to thinking "this is it...downhill all the way from here..." it's so hard not knowing...

off to bed now - thanks for posting both. it does help.

hat my OH is the strong silent type. He drives me mad

I wish he would listen to his body a bit more. I love him and am happy to do whatever needs to be done if he cant manage it. I would rather that then see him in pain and him be all grumpy!

It sound like your little lot love you to bits and want you to take care of yourself too.

I really hope you begin to feel better soon. It must be so frustrating for you.

You're allowed to feel sorry for yourself, it's a shite disease to have. The steriods did naff all apart from taking away the 'pissed' feeling I had (damn ), they are just supposto shortern the relaspe so it causes less damage. MS is a diseas where you have to take every day as it comes. I've been told and met people who have only ever had one relapse, then that's it, no more, I've also met people who have had just two and people who have had more. There's nothing to say that you will have another relapse, nothing at all.

I work on the 'it could be so much worse' principle, take each day at a time and ignore the burning as I'm too damn busy. When I'm tired I sleep, I keep my diet healthy, walk everywhere and won't let MS ruin my life.

Hugs to you Hatwoman. MS is one of life's shitties. My dear aunt has suffered terribly with it.

You are allowed to feel fed up from time to time. It's not an easy thing you've been given to deal with. Go easy on yourself. I second Belle. One day at a time. Listen to your body. Give yourself a break. And vent here. It helps!

I hope you are feeling a little better today

A physio friend of mine suggested eating a high protein diet whilst on the steriods to prevent muscle wastage, he said the steriods need protein to be able to do their job so will use up anything they can get, a high protein diet makes sure they don't use up muscle.

Hi Hatwoman - really sorry that you've had a relapse and all the uncertainty/fear that brings. I work with young people who have a different long-term condition (arthritis) and it's always really shit when bodies/illness suddenly derail you from your normal planned life.

In scotland we run short courses on managing pain, and also 'self management' ie living with a long term condition (as does MSSocietyScotland): obviously medication is one thing you'll need but as others say, learning to listen to your body and plan your life around it when you have flare-ups/relapses can help. Also accepting that sometimes you NEED help - it's tough, but it's something that my young volunteers have come to terms with. Whereabouts do you live? There may be courses in your area. Otherwise the book we use on the courses is this one.

On the diet front, I think there are different opinions on what is best - not unexpected, given people's bodies are different and illnesses vary in how they affect people. However one of our friends is on a low fat diet (avoiding fatty meat, eating mainly fish/turkey mince etc) and has been in good health since adopting this diet. Obviously it could be that he would have been OK anyway... but it could be worth a try if it suits your lifestyle.

And, as others have said, you are allowed to feel fed up and express that... but sometimes it is hard when you don't want to affect your family. That's where internet forums can be helpful, whether on MN or an MS-specific forum; you can share the load and people will know how you feel. xx

Sending very un MN hugs to you, hat. I don't have MS (but do have another bugger; an auto immune arthritis along with early onset osteoporosis... mmm, i wonder whether i will swell up or crumble first ) which is threatening to leave my previously fit body extremely disabled (not to mention disfigured) at the moment. But my aunt has suffered badly for many many years with MS. I do know that she has tried various alternative approaches, including dietary and plenty of acupuncture and specialised physio and massage, with varying degrees of success.

I pray that you will go back into remission again very soon... and stay there!

Don't know if this helps but a good friend of mine with MS was told that pushing herself too hard could be really counter productive as the immune system doesn't react too well to that. She was battling on to commute to work and was advised to take it more easy. It was suggested to her to do lots of gentle exercise but that really puffing herself out, especially when the immune system was getting out of kilter could be counter-productive, so when you say "week before last I was dtermined not to "give in" (whatever that menas) forced myself out everyday to at least walk for about 30-40 mins. ended the week feeling worse tahn before" - maybe it is better if possible to rest when you are feeling an attack coming on?

Sorry if that isn't helpful.

hatwoman, I have read this recently, I thought it was quite inspired. Some neurological conditions can be held back by the right diet.

My Step Dad has MS (he's 68), the primary progressive version, so never gets better I'm afraid. He gets pissed off with people saying to him things like 'oh my friend has MS and she has been fine for years'

The point I am trying to make is, as you know, it is so different for each person, there is no one size fits all way of coping and no wonder medication.

He copes by planning positive things for the future, things he enjoys, he no longer can fly, but loves bird watching, so they go to Norfolk 3 times a years for 2 weeks at a time. Small things like planting spring bulbs. He helped DS1 who is 7 learn to play chess the other day which he really enjoyed.

He also went to see a pain specialist after requesting this via his neurologist, after his GP admited he had no idea if all the pain meds and meds he was on were any good. The pain specialist was excellent and has really helped with symptoms.

His advice, is not to overthink what may come, but very very hard not too, but please try. He gets upset and angry and says it's important to have those feelings and be with them for a bit.

My Mum makes him dope cookies, from hash supplied by my brother, they help chill/zone him out when he feels particularly shit. He says the feeling is better than any of the other drugs, like booze and a massage with a high happy mellow feeling!

Sorry to hear about your relapse Hatwoman.

I totally get your fed-upness and feeling week, tired and the fear.

I was diagnosed 5 years ago and ticked along quite nicely. No symptoms to speak of and I could carry on 'as normal'.

In the last two years I have definitely gone downhill (strange metaphor to use as walking downhill is something I find more diffuclt than going uphill.....) I see MS nurse regularly - am seeing her next week - and she won't say 'This is you getting worse forever' but that is what I feel.

I am not on any medication and feel I can't do anything to help other than just 'carry on' and be positive. (I seem to get away with it as everyone thinks I am quite cheery!) I can't walk far and need a stick most of the time. I walk, I stumble, I feel rubbish. I need to plan everywhere I go even if it's just down the road. Not being able to nip out on the spur of the moment is a real pain. Oh and I was made redundant last month so can't use working to take my mind off things. Hey ho!

"i have no idea what the point of this thread is. i'm fed up. i want to be better. i want to know whether to rest (ie do nothing) or if that's just rolling over. i'm scared it won't go away. " This really says what I feel too HW.

Sorry to turn this into my own moan...but just wanted to say how familiar your thoughts were..........

And thanks too to BDCFB and the others. The little ideas and encouragement can mean so much when you're down.

hi all - thnkas so much for posting. means a lot. forgive me for not responding properly now - been working all morning to a deadline and having met it am looking forward now to a break from the pc. i might go and do something completely indulgent...just read a book, or sleep.

Sleeping's good HW but I find that I get trapped in a sleep cycle, I find myself falling asleep when I'm not tired so I can't fall asleep in the evening, then I'm tired the next day so I need to sleep, then I can't get to sleep in the evening etc. I've limited the amount of sleep I'm getting now, I know I'm in remission, I've given myself time to recover so I say it's enough with the sleeping. It's tough though.

I'll stick this thread on my 'watching' list. It would be great if we could all support each other and lend an ear when we need it if this is OK,

So sorry to hear about your job poppy

Nice idea BelleDe.

It's good to have an outlet for the all those big and little feelings especially like HatWoman when you just want to sound off to someone that 'gets it'.

I managed to walk to school yesterday for the first time in ages (there was a little snow and the roads had not yet been gritted. As it turned out the snow soon disappeared!). Did a stint in the school library. (Small challenges, small victories!)

On the walk home (the hill at the end is the challenge....) I met a woman from a few doors away. (Recognised but did not know her name etc etc). Had a chat. She asked me what was wrong (stick gives problem away really) and it tunred out her daughter has MS but is a denier. She just won't acknowledge it and will therefore not even go and see the MS nurse. (Our local one is a bit of a treasure). Everyone deals with it differently...

Anyway, MN comes into its own again. A small oasis of comfort and support.

I've not actually met the MS nurse I was scanned here then referred to a hospital in another city as it's has a good neurological centre (apparantly), I was left waiting for almost 2 hours and she'd left before I saw the consultant. I find it helps to take one day at a time, doesn't stop me planning a holiday for the summer though, I just won't book it until the last minute. Job wise, I'm a student radiographer (have been for a year and a half), I am allowed 60 days off sick and they will still pay my bursary. I see so many people worse off then me, I never was someone to dwell on things aswell so I tend to pick myself up and get on with it, I do panic though but rarely for very long.

I hope you are all well today and you are feeling better hatwoman

Could you set up something from home poppy? Then you don't have to phone in sick if you are really tired, you can just do the hours that suit you.