This will be my first time posting,I am a 26 year old male and I was diagnosed last september after my left eye stopped moving to one side. After going through with the doctor of various symptoms I’ve had, I had probably of had MS symptoms for atleast around 2 years prior to diagnosis.
My eye has got full movement back thankfully, but it did take longer then expected. around 3 months. During this time the GP had signed me off work, however after about 6 weeks I insisted I went back. I just wanted to feel like getting back into normality. So I went back probably before I should of done.
Because of how often I had seemed to of had relapses over a 2 year period my Neuro was keen to start me on Tysabri. However I turned it down and decided on Avonex as I wasn’t sure about the risks of PML.
I Initially had horrible flu like symptoms after each injection, but touch wood the last 3 I’ve had next to none.
I am a supervisor in retail and the job can get physically and mentally demanding at times. I’ve found myself recently struggling more and more after a shift. My symptoms seem to flare up, I get tingling in my arms, legs ,shooting neuro pains and a feeling that I can only describe as if something is crawling around my body… it’s not quite tingling but around the same sort of thing. The other Night I got home and just had to lie on the bed for a couple hours to let everything settle.
Last night I didn’t sleep well which can be common when I may of ‘overdone’ things during the day.
I’m a little stubbborn I suppose in that I continue to possibly overdo things and can’t accept I may not be able to do as much as I could a year or 2 ago. I’ve been wondering lately if I should consider leaving my job… or just continue to plow through like I have been, but I worry that I’m not doing my body any good continuing the way I am.
You describe very well the feeling of testing out different options (work/not work, stay in job/get another, drug A/drug B, return to work ASAP/give it time etc) and finding that not one of them darned well works for you and they all boil down to the fact that you have MS, and that is exactly what you don’t want ot have. I am sorry that you are in this all-too-familiar bind.
Gribs, I don’t know. If there were easy answers, you would have thought of them already. All I can suggest to you is that you try to step back mentally and survey the scene in terms of your health and your financial security. One thing, I would suggest, is not rushing into moving to another job - first, see what you can do to make the current one work for you. When major upheavals are going on - getting used to an MS dx, for instance - there is much to be said for keeping a steady course in other areas, just until you find your bearings. You are in the very early days of getting used to all this (a few months is no time), and it is hard, and you need to carve out a bit of time and space for yourself to get used to it all. Starting a new job maybe isn’t exactly what you’re looking for right now.
Most big employers have reasonably OK policies about how to deal with staff who have a condition like MS, although individual managers are often blissfully unaware of this, or pretend to be. Finding some allies at work - your boss, ideally, or someone in HR or Occupational Health, if you have such a thing, would be a good investment of time. If you can get in early and highlight the problems you face and talk through in a collaborative way how you can give of your best at work, that might be a good place to begin. That’s hard to do when you’re in mid-crisis - act pre-emptively if you can.
Gribs, sorry to hear your predicament, I feel for you as I felt same when relapsed last year and could barely walk. I was so desperate for normality that I asked the neuro whilst laid up in a hospital bed if I could " go back to work tomorrow" ( what a div I am) I hassled the GP to sign me back three months after I wasn’t very well and she wouldn’t but instead we went for a phased return and it was great. I am now back full time as a nurse in a GP practice and started a uni course end of last year. I feel knackered for the most part and totally get what u mean about the sensory symptoms and pain. I started reluctantly on gabapentin and to be fair it’s been good for me and it’s my new best friend! Talk to your employer, be upfront and see what they can do to help. Be honest about your symptoms and what they mean to you and if you think that having a break mid shift would be beneficial then ask for it. If you love your job then don’t go changing but maybe just weigh up if small adjustments to your working day will keep you there but without impacting on your MS. Good luck x
Gribs I presume work know of the ms ? If not, then consider telling them. This will give protection of the equalities act (2010). Consider getting access to work involved (see gov.uk). They will work with your employer in making your job easier for you. This could be taxis for work, help lifting / carrying, paying your employer to get extra help for the physically demanding bits. I would consider quitting as a last resort after exhausting all options. Can your ms nurse refer you for physio if this would help. Don’t put up with things. Look at what’s available to help you. All the best Neil
Thank you all for the advice so far. Work do know and they were good about it at first. I started back in a phased return to work and my Assistant Manager was very good about it all. However as the time crept on there was subtle hints of me maybe having to give up my position and move back down a role.
I didn’t want to look at moving back down, so I naturally began to work as hard as possible to prove I was still able to fulfill my role, and in my recent appraisal it showed because I was told that I had come a long way. So even after the Diagnosis I had improved in doing my job. However, it seems that it’s only increasing the amount I’m relied on to do. I’ve occasionally said subtle things about how I tend to suffer after a shift or the next day when i’m still feeling it… but I think either out of ignorance for the condition or because it’s just easier to ignore when i’m still doing the job required I feel it falls on deaf ears. That’s not to say I’ve actually sat down my Boss/s and actually said look this is how it is though. Again more out of fear that they feel I can’t do my role and the suggestion of moving down would be brought up again.
Strangely enough it’s not really during work that I suffer. It’s more after… or even little things such as when I’ve walked from the car to work, my legs start to all tingle, but when i’m working I tend to feel fine. Perhaps the odd moment of dropping something fiddly as I have constant sensory problems in some fingers, but otherwise I sometimes even forget myself.
Theres some days where perhaps I don’t take the correct breaks as it’s a faced paced environment and theres always something/someone that needs my attention. I need to be able to act as duty manager and run the store during certain times. Quite often it’s me who is responsable to make sure the shut down of the store goes smoothly and that it’s ready to trade for the next day.
When I had the diagnosis I went through the usual emotions of anger, being upset etc, but I think denial is still something I may be going through. I threw myself back into work as I wasn’t going to let it beat me. I was determined that I would next make Assistant Manager and I wasn’t going to let MS stop me.
However i’m starting to think that it’s perhaps a little unrealistic. Is it really worth putting my body through this to try and achieve something I know I may never get… or would it be better to move down… take away the the extra responsibilities and perhaps be content with a minimal wage job thats never going to buy me the world… but a hopefully a healthier lifestyle.
Only you can decide what’s best for you Hun. I totally understand where you’re coming from though. I didn’t know whether taking on a uni course and working full time was the best idea but I would have spent my life wondering whether I could have managed it had I of not started. (If you get what I mean) It’s like work, I thought if I don’t go back full time I will never know if I can manage and so far so good, have good days and bad days. I do 2x 10.5 hour shifts and the rest are 8 hours ish. It’s a real dilemma isn’t it? See how you go, be kind to yourself on your days off and stay strong! X
This may sound crazy but have you thought of doing to the gym? But don’t do rowing, bikes or cross trainer. Only use the machines that target the muscles you have that are weak. Over time you can make these and other muscles stronger and even stonger than before diagnosis.
I went to gym many years ago before MS on bicep curl machine I could only do 70Ib now with MS I have a weak left arm pins needles numbness in left fingers, I started on 50ibs 2 years ago, 2 years later I can now do 160 Ibs 10 times wait and do 140 10 times.
You don’t say if your over weight if your not get some lean protein shake powder this will help with muscle repair afterwoard and make then a little bit bigger.
Eventually your weak bits should play catch up and you can then do all over body workout which will be more balanced.
I have recently discovered the benefits of Creatine powder, forget redbull when working out you take some an hour before and during and you can last much longer. You do not have to take any where near the amount they say on the back for me its 2 teaspoons total on the day I work out and Tescos sell it. I use to have the tingling and it does go then a year later its back for 3 months then goes again you might just have to get use to that then your hardly notice it.
1 hour in the gym is enough per day, before working I use to go 2 or 3 times a week now I’m back to working full time, I leave at 7am and back home at 7pm so I only go on a sunday and do some weights at home in the evening as a top up
Hi gribs, I too work in a supermarket, in the cash office where it works for me but I to find it really hard at times. I only work part time and look forward to days off and holidays. I do understand how hard and physical it is for anyone working in a supermarket and all the stress that comes with it. As you will find out stress is not good for our condition. Ms is a hard condition to come to terms with and nobody else really understands what you are going through. I should know it has taken me 6 years and have had some really dark days. Be kind to yourself, take your time to think things through. I have found the support on here invaluable. Best of luck! Mags.
Hi Gribs, I am 34 and when i was told i had it in 2009 i tryed to plow through it and get back to work and get on with things but sometimes you have to sit back and say right thats it i am no longer able to do what i have been doing and go back a step, I used to work on submarines and have a very demanding job but over time i found out i was unable to carry on working like i could so had a word with my boss and the HR department and moved back a role, it was hard at first as i lost out on shift pay and overtime and was on flat hours but we had to adjust our life to suit. I do hope that your managment team are ok with you and that you get as much help as you need, i find that people on this site are very helpfull with there advice. Good luck Rich.
Thanks for all the replies. I was having a couple tough days and really needed to rant… I only really have my GF around where I live and I don’t want to feel like I’m always putting on her…
For now I’ve decided to see how I get on for the next couple weeks. If I still find i’m struggling then I think I’ll have to take a step back and think about my next step.
Thanks again for all the advice and for just listening to my rant!
Pacing helps me - taking 15 mins to recharge, somewhere quiet if you can, can make a real difference. I also spend a lot of lunchtimes having a lie down in our medical room - not fun but it means I can get through the day and keep working x Good luck
Hi Gribs I totally I understand what your going through, just before I was diagnosed I got a promotion with lots more responsibilities in my work. When i returned to work on a phase return I tried my hardest to fit back into my job but this was causing me more stress and worry trying to work on with the way I was feeling. I sat down my manager and OH and discussed adjustment I needed for me to continue to work, I went back to my previous job as it was a lot less stressful as lots of dead lines, looking after my team in my new role. We also agreed to reduce my hours temporary for 6 months so I’m current only working 9.30-2.30 each day to see how I am. The difference I feel already is huge,now I am only working whilst my son is at school, I’m not coming in from my work and going to bed with exhaustion. I can spend some quality time with my family where my ms isn’t taking over everything. Speak to your employer and see what help and adjustments can be made as I am sure they will try and work with you to help you to continue to work. I also receive some benefits which I never thought wouldn’t be available to me as I work but I got awarded Personal Independence Payment as there is still a lot of things on daily basis I struggle with, having this extra income has helped me reduce my hours and get some help on days when I need it the most. This may be something you can apply for. Take care and I hope everything goes well with your work. Polly x
Hello, I know just where you are coming from, my consultant wants me on tysabri, but have no fixed abode and very reluctant about any drug! I am in the same poisition with work, except take on temp work, so currently no work. But what to do, if you work like you want you feel so bad and bring on more relapses. If you dont work you feel better, and almost like you can work and also feel a complete fraud. Its such a difficult thing. Went to C.A. B for some advice, and got sympathy and told its a difficult one, with no help if you work part time, basically its an all or nothing situation. Which is no help at all. I hope you manage to work through whats best for you, sorry i cant help.
