Hey everyone Just wondering how people (still working) manage work when symptoms are playing up? Mini x
Hi Mini Im still working full time. I just have to power through mine as my work dont really understand MS. I get the “why are you always tired?” often which is annoying and told im not working fast enough. I was thinking about speaking to the management to try and get them to have a look into MS so they would kind of understand. My main symptom is fatigue and numbness at the moment so I just drink lots or red bull which i know i shouldnt but its the only way i get through the day. Sam x
I’m really lucky - my company are excellent and are very understanding and accommodating. They know all about my MS and the symptoms and have done right from the start. If I’m not feeling 100%, I just slow down a bit and they’re fine with it. I know that if I have any problems at all, I’ve only got to say and it would be dealt with. When we had the heat wave my tingling & numbness was terrible, which made typing and filing difficult but they were brilliant and just let me plod on in my own sweet time! Anyone who doesn’t have the same attitude from their company has my sympathies.
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Thanks you two. I’ve just returned to work after being off over a year and I’m struggling at the moment. Probably have to just take it slow x
Several double espresso’s would get me through the day.
Have you spoken to management about your return? They might be able to help you and be more understanding. I envy you dallydog! All my hospital appointments have been in my holiday time and have had to get family to get taxis to get me and my car when i havent felt 100% as not feeling 100% isnt a valid excuse to have time off. When i told them i had been diagnosed it was just a case of ok then what does that mean? End of conversation!
My work place are really understanding so I don’t have any problems with that. But between IV steroids, hospital appointments, physio and MRIs, I’m looking at missing at least 3 weeks unpaid this year which is a real struggle 
Those days here and there really add up.
When I was working the Occ Health Dept and HR and my boss were fantastic. I was given am office on my own with an air cond machine and extra large computer screen. They were brilliant. I only retired through ill health when I started falling regularly and my ON made it impossible for me to type medical reports etc efficiently. The helped me work for as long as I could to be honest.
xxx
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I work in school admin and they have been excellent. I had a month off with one relapse but since then I’ve only had odd days or half days off.
My previous line manager wasn’t very understanding about my heat intolerance (I’m sure she used to crank the heat up deliberately), or about my fatigue. We eventually had a huge bust up when she reprimanded me in a public corridor and at that point I insisted that I was removed from her department. I was given an office of my own shortly before this where I can control my own environment regarding heat and distractions.
My line manager now is excellent. She understands my need to work as much as possible but is also sympathetic to my needs for rest, regular breaks from my PC etc. If I look at all peaky or wobbly she notices and asks if I need to go home and rest which can be a little upsetting as I try to hide my condition as best I can so it’s a bit disconcerting that she can see through me! I’m not used to a boss that cares 
I’m confident that the school will do their best to support me in work for as long as possible. They have already reassured me that I am in the driving seat and if I need any further adjustments, less hours etc I just need to discuss with them and they will do their best to accommodate me.
Tracey x
Iv got to admit Im a bit jelous of you guys with your employers. I had a fatigue and jelly legs issue at work today and was told i looked grey to which another member of staff said “shes having one of her episodes” i then got told to have a sweet to perk me up! Shockingly enough the sweet hasnt helped my numb legs! x
Hi Min I have been thinking abou you and wondered how you were ggetting on. You will get there. It has taken me three months to get back to 4 full days, that includes working from home two days a week. Have booked some annual leave so it will be Sept before I have to do a full week. My boss is excellent I would really have struggled if I didn’t have his support. I’ve been intothe ooffice three consecutive days this week to try it and I’m totally cream crackered. I have an hours taxi drive each way. my friend put it if you want to continue working you need to get used to it, I know she is right and ddidn’t mean it in a horrible way she is so supportive. She also knows that I need to hear it sstraight occasionally. Min keep it up you are doing really well. Well done Barney
Thanks Barney. It’s been six week since I started back and sometimes it’s a real struggle! My gp has advised I stick with the hours I’m doing at the moment for another 3 weeks, I’m hoping it will get better! I’m glad you’re getting back into things it’s a struggle but we’ve got to be proud if ourselves right? Take care Mini xx
That’s good your gp supporting you aswell. We should be proud of ourselves.
Hello Everyone. Im new to forums so please forgive me if I dont do this right.
I was diagnosed with RRMS in 2010 but had symptoms as far back as 2003. I was working for North West Ambulance Service up until July 2016 but unfortunately had to finish due to no longer being able to fulfil the role I was employed to carry out. I was off work sick with a relapse since December last year, and they were unable to redeploy me.
I started to working for my ex-ambulance colleagues son. The nature of business being refurbishing old computers. At first i was coping well although I found it quite physical, more physical that working for the ambulance service. However I have been finding increasingly difficult to do the work because there is a lot of heavy lifting and moving of heavy goods, i have to stand all day as I am responsible for the cleaning of the old computers when they come in (I clean up to 60 PCs a day inside and out). My employer knows i have MS although i dont think he understands the condition even though his father-in-law has the condition himself. I come home from work at night in agony and cannot sit or lay comfortably in bed and struggle to sleep because of the physical work, even with medication to help me.
I have thought about asking for reduced hours but i dont think this will be an option due to the nature of the business and it being busy all the time, and I dont want to ask for a new role as I am worried about being told once again I can no longer fulfill the role I was employed to carry out.
Friends have suggested resigning but i dont know if i would get any help financially if i did.
I would be grateful for your thoughts and/or advice.
Colin
ask for an office chair to help with the standing. there really shouldn’t be a reason you need to stand while cleaning a computer. (I’ve done it sitting on the floor). or if its a tall workbench, get a lower one. unless of course these are big tall computers/servers, than I can understand needing to stand. its not a lot of help, but it might mean you get better sleep
Access to Work might be able to provide you with an office chair (as faula mentioned). Or a stool - like this perhaps?
Do you claim PIP or DLA? If so disabled people who work 16 hours or more a week can claim working tax credits with a disability premium. The CAB would be able to advise about benefits.
I was thinking a trolley might help move computers around at work. Access to Work might provide this.