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The hidden symptoms are hardest

Hi there y’all, this is the first time I’ve written on this forum. I’ve had RRMS for 19 years now, and all things considered, I’m not doing too badly. I had a relapse 2 weeks ago ( had steroids and feeling much better now) but I was just SO exhausted and unable to think straight. I felt like I was lurching through the day just trying to make it to the end. I have a 6 year old and an 8 year old who will always be my top priority, so by the time I’d made sure they were fed, clothed, taken to school etc, I had NOTHING left for my work! I’m a SQL developer (database stuff) and am extremely lucky to have a job 5 minutes from home. But I felt so guilty / frustrated / angry / lame because my brain simply wouldn’t work. I ended up taking 3 days off and just sleeping.

I told my HR department, and they were very sympathetic, but I still have this underlying feeling of being a let down! If I were to tell people I had to take 3 days off because I was “tired”, I think they would just roll their eyes and think “join the club”. But it’s such a different, all consuming tired.

I just wanted to get it off my chest really. I’m doing okay today, but I really don’t know how much longer I’m going to be of any use in my job! But gotta pay the bills. Has anybody else reached this point

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Hi LizT

I don’t mind you venting off I don’t think anybody on this site minds.

Is there anyway for you to be able to work from home a few days a week, or shorten your working day, I think most people on this site know first hand the tiredness that MS gives you and that most people in work don’t understand.

I had a lot of time off work (not MS) they were great but I still was layed off after seven months I had been working there for eight years. I am coeliac and had some lovely symptoms pain, losing weight(seven and half stone) going to the toilet many many times and I had permission to do that from my OT (wow) I worked in a school.

So go a head and vent if you want too, just don’t swear or Oliver will blank it out.

Kay

A lot sooner than you have reached it, and with fewer family responsibilities to fulfil on top of paid work. I applaud your fighting spirit and resolution.

Look, you’re relapsing. Your body is struggling with an attack of active inflammation in your central nervous system. It is under the cosh from steroids. Your body is repairing brain damage right now, Liz. Does that sound like a trivial or low-energy matter to you? Or does it sound like serious work that needs to be taken seriously?

No prizes for guessing what I think: I think you should tip your hat in salute to your CNS for its tireless repair work, meet it half way by giving it a chance, and let paid work take a back seat until you’re properly better.

Alison

Thanks Kay. I work 4 days a week, and I have asked to work from home one day a week until I feel better. Work are very approachable, but I still get anxious about my capabilities. I know getting anxious isn’t going to help, but sometimes can’t help it

Excellent reply Alison.

I so agree. The body is under attack and needs to be rested until it can heal itself. Its not fatigue per se.

I so understand though where your coming from LizT you have always been able to do your job now you feel you are slipping down the slope and are worried that you wont be able to carry on and earn.

It will get better but you have to let it have a chance. Perhaps do less in the house, and get the kids on board as well so they can help you a little bit more. So mum isnt running around so much. For example can you find someone to take them to school just for a few weeks until you are feeling more yourself. Do you have a partner or family who can help you.

I applaud you how do you do it all? I cant imagine having to care for a family, have a relapse and do a job. I know what it takes to design databases, i have done them on a much lower level not SQL, and you need your wits about you. At the moment your brain is just trying to keep you safe, moving forward and doing simple jobs. Think of a cartoon in your brain with all these little people in there with cogs and bits and pieces trying to keep you going through a relapse, and some of them laying on the floor exhausted because you have got them running around like maniacs lol…your brain is just not capable of doing it all in a relapse.

So i think take all the help you can get right now. Draw on friends family, people at school, mums etc. The kids dont mind who takes them to school if you turn it into a little adventure for them.

You need to rest its not fatigue, its healing. xxx

Aww thanks “Crazy chick” and Alison. Sometimes you just need to hear that someone else understands your predicament! Feeling a lot better, I am going to ask to work from home one day a week until I feel properly back to form. So I have 3 days where I have to be up and at it, 1 day where I can work in my PJs and eat chocolate, and one day when I can just sleep! :slight_smile:

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LizT Good luck with that, I hope it works. Kay

instead of saying you are ‘tired’ or ‘fatigued’ say that ‘my m.s. is making me very ill at present.’ Tell people you are tired or fatigued and they think it’s the same as the fatigue and tiredness they experience - We know it ain’t!

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Hi lizT thats much more positive and i think it will work for you. You know chocolate is good for us lol.

I used to work at home and that was before i ever knew i had MS.Because i was just exhausted and it wasn’t safe to drive into the city. xxxx

Excellent idea, I’ve had MS for approx 27 years and it never occurred to me to say that rather than try to explain the fatigue

Jan x