Last reply 4 months ago
5.55am alarm during relapse – impossible

A 5.55am alarm for anyone without MS would be tiring, for those of us with MS this would be even more tiring, but a 5.55am alarm during a relapse really does feel impossible!

I’ve been off work for two weeks due a pretty rubbish relapse but despite the relapse still carrying on, I am pushing myself to go back to work tomorrow because the guilt of being off is too much to take! This means a ten hour working day plus 2-3 hours of a driving commute! Hard going for anyone right?

I’m fairly new to MS after only being diagnosed in April! Most of my symptoms have been strange sensations, horrendous pins and needles, wet elbows, lhmittes but this time it’s difficulty walking with a reduced strength in both my legs! I had physio on Friday which was really helpful and since taking advice on board I am walking more steadily and am following the exercise to build my core strength back up! My nurse has also assessed me and my strength in my legs has gone to 3/4 out of 5! When I was first diagnosed I was 5/5 so I’m disappointed to have had a relapse which now means my MS is more visible to others! Along with the reduced strength, the fatigue is at all time high! With some days spending the whole time in bed due to just not being able to get up! Both physically or mentally!

For someone who is 28, who has not yet started a family and who has not yet got a mortgage, my full time job is super important to me but I just don’t know how I will manage tomorrow morning and I will no doubt spend the whole of today worrying about going to work vs not going to work! People who know MS would not expect me to go back to work right now but it’s so hard!

I don’t really know why I am posting this but I am guessing there are others out there that know what this feels like, the constant battle of carrying on normally vs having a chronic illness!

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cameron
4 months ago

Yes, I do understand because I have done exactly the same. Push, push, push because only then can you cling on to the belief that you’ll manage to keep going long term. There’s no quick answer, of course. However, I learned pretty quickly that one’s best friend is self-knowledge of what the MS is likely to do and how it will react to one’s different behaviours. You’ve taken the first step towards this by getting a physio assessment. Yes, it’s depressing that your leg function has decreased, but think how good you’ll feel when you’re re-tested and it’s back to where it was. Now – the game is: how do you get it back? You’re mid-relapse, so you’ve got to accept that this will be slow. You’re slowing it even further by going back to work, but the plus side is that this may cheer you up. You’ll be in social circulation again and required to put the MS in its box and get on with life. If you feel really rotten, though, my advice would be to give in to it and take more time off. When I DIDN’T do this, I made very bad errors at work which caused me as much grief as the MS. I’ve posted before the advice my physio gave me for coping with a relapse, and it still holds good: maximum rest (in all senses) to allow healing in conjunction with positive stimulation/enjoyment to divert the brain. So: 1) as much gentle exercise as you can tolerate – swimming is particularly good 2) as much sleep as possible 3) spa treats e.g. massage if this is an option 4) activities that require real and sustained brainwork (outside your normal job) e.g. a new book, hard puzzles, a challenging documentary, newspaper articles 5) social activities that you know you will enjoy and which require you to participate e.g. old friends round to dinner, the pub. These strategies work on the principle that the mind-body connection in MS is strong. That’s certainly been true for me! Let us know how you get on and all the best for your return to work. xKay


vixen
4 months ago

Hello @ew5514, @cameron is bang on with the ‘self-knowledge’ comment. I was diagnosed Jan 2017 following an initial relapse. Although the relapse was officially over, only now, 19 months later can I see just how long a proper recovery took. For the first year after falling ill, life was back to usual re work and stuff. But I had been left with a cut-out thing with walking more than 12 minutes. I didn’t overdo it, but I started to make sure I went for a 12 minute walk daily then, over time, I went to 2 walks. Today, 18 months later, I am on a DMT, on holiday is Spain and managing to walk 25 minutes a day in 32 degree heat. One year ago I could never have envisaged that, I felt that I was done-for with walking. The thing is, I know my limits, I don’t push too hard, I have turned my world upside down diet wise and avoiding stress. You are very newly diagnosed, please don’t be hard on yourself. A mortgage. And those responsibilities will come; with MS it is often finding a way to reach the same goal but through a different route. Focus on recovering properly, yielding advice of others medically, and remembering that you are the same person who has an equal right to fulfilment. You’ll be fine x


nutshell88
4 months ago

when I was first daignosed couldnt get up so easy had panick frozen moments when i was in bed i even remember the first day i slept with shattered legs expected to get better after bed but the next morning was a shocking new tired painful heaviness feeling in my legs
but life goes on i finished uni and had 3 courses after worked in the uk
and im working in my country now evening shift been 14 years with MS
but either way I wake up everyday at 5 am since before MS its a prayer time.
but after I pray I sleep.

10 hrs job aint simple to be honest I hope you get healthy enough to handle it soon

be strong x


grandma
4 months ago

Hi ew and welcome, I’m an old codger, had the beast for 25 years, had rrms for 23 years and they think it is just changing to spms, but they did tell me that would happen in 10-15 years and it took 23 so not complaining. I have the same walking problem but mine has only just started in the last year. Used to go hill walking and bird watchning but now I have an electric wheelchair and a mobility scooter, a huge ramp and low threshold doors and a through lift to go upstairs, but all that has come in the last 18mths. I wouldn’t wish ms on anyone but things have really moved on in the last few years and even though there is never a good time, you have picked the right time to be dxd! There are so many dmt’s around, and if one doesn’t work too well they can always try another. Worrying about whether you can get up tomorrow is the worst thing you can do. Stress is not good for ms and you will be making it worse, do chill out, enjoy the sunshine, take each day as it comes and don’t STRESS. 25 years ago my then other half cane home at lunchtime on Sat, having worked overtime, and found me cleaning the skirting boards in the bathroom, they were hardwood and really showed the dust & dirt, I had been sat on the loo, just recovering from a relapse, not done anything or taken much notice of anything for 3 weeks when I realised how dirty they were. He went ballistic (even then we had been married 18 years) and yelled did I want to be back in hospital! Take heed, as someone once said 50 years ago in an article in Readers Digest (in the days when I was a child and my mother had the Readers Digest Mag every month) a man, who unusually for those times had swapped roles with his wife and stayed at home to look after the kids said “a job that took all day to do, but that could be undone in 5 minutes by a small child carrying a packet of biscuits and a box of scrabble wouldn’t hold his attention for very long, and when enough dust and dirt had settled for small creatures to be seen to be living in it, it should be cleaned up, preferably by someone paid to do the job” I couldn’t have put it better myself, now few of us can afford to pay someone else to do, it but you get my drift😍


ew5514
4 months ago

@cameron @vixen @grandma @nutshell88 thank you all so much! Just hearing from you all has given me some real encouragement! My alarm remains set for 5.55am tomorrow and I will try my very best to get to work and that is all I can do! If I can’t manage a full day then it will be back to the Drs for another note but I will give it my very best shot! I’ve had my letter from nurse detailing my relapse so I can at least have something to show work along with my note from the drs! I don’t think I’m ready to go back but I am stubborn! Perhaps one day I will learn how to deal with ms and how ms deals with me!

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