Hi everyone, I’m newly diagnosed although it’s been on the cards for the last 7 months. I currently work full time with 2 days a week at home. Despite this adjustment, I have found the last 7 months very difficult due to fatigue and symptoms associated with it. I just wondered if others work full time or if it’s something people have had to change and reduce hours etc…I’m due to start DMDs within a few months and really wonder if these will help as much as I’m hoping. I eat well, don’t drink alcohol or smoke but still I’m struggling. I want to try more exercise but after a day at work this currently feels impossible. Any ideas/advice would be good. Thank you.
hi joey have a chat with your occupational health worker at your place of work. they will be keen to help you cope. i have read on here a post by a teacher who has been given a quiet room with a crash mat to take a nap when it gets too much. as for exercise, see a neurological physio who will give you exercises based on pilates. pilates is fantastic or strengthening the core.
Thank you. Just trying to get all the help I can as I really don’t want to have to give up working or reduce my hours if I don’t need to.
hi joey
you are right to stay in work and in full time hours because, depending on your employer, you may be eligible for early retirement on medical grounds eventually when the time is right for you.
hope the path is becoming clearer for you now.
carole x
Hey
I was diagnosed officially in June this year with RRMS although been experiencing symptoms from Spring the year before. I still continue to work full-time. I do find I don’t have enough time to look after myself i.e. exercise, meditate etc so it may be that in the future I drop my hours but have no intention of doing so at the moment.
I suppose it depends how you feel working full-time - would you benefit perhaps from an extra rest day?
Hi Joey
I had to reduce my hours, and am able to work flexi-time. Not having to start at a specific time really helps, as it means I can shift my hours around if I happen to feel too done in to work. If you’re worried about losing money, you may be able to qualify for the disabled component of working tax credits.
As Carole says, speak o your work;s occupational health/HR. Get in touch with Access to Work as well. It’s a DWP thing to help people with disabilities to stay in work. They can proved an assessment and see what could help, like specific equipment or funding for taxis to & from work.
Dan
Still working full time (office based) think it helps with my sanity but a 4 day week would be nice
I was diagnosed nearly 3 years ago and still work full time, with zero lost time for sickness
Hi Joey
I was also diagnosed just over 3 years ago now with RRMS.
I hold a senior position in a reasonably large business.
I am lucky enough to have never had a day off since diagnosis. To be fair it almost happened on Wednesday as I was worn out but I stayed positive and thought NO it’s not getting the better of me today. I actually thought I’d be regularly Ill once I started Tecfidera but I seem to be very lucky. I had a few weeks of flushing but not too much else.
I suffer with weak left leg, week left arm and a bit of fatigue.
I decided to tell my employer the same week as my diagnosis as I couldn’t do with additional stress of trying to hide it and had a welfare meeting with HR about a month later.
I went armed with letters from my consultant and MS Nurse and ended up with working from home 1 day per week and changed my company car to an auto. I also do non rush hour commuting to avoid undue stress.
i do find that colleagues and directors don’t really know how to handle disability in the workplace. A bit of fear of the unknown I suppose.
i do however find that there appears to be a lot of support from government agencies, NHS and employment law.
i recently attended a local MS course about working with the condition and understanding your rights. This was very intuitive and showed the Citizens Advice Centre in a great light and I for one will make contact with them if the need arises.
i do feel that still working goes a long way to keep me positive and I dread the time coming (if it does) of when I have to give up.
until that point though “onwards and upwards”
all the best
Joey,
I’ve been very fortunate with my MS in that I was still able to work full time almost 20 years after my first attack.
Then in 2016 I was off work, for the first time ever, for about 6 months. Went back part time for a few months and then full time.
2017 was almost a repeat of 2016.
I reviewed different options with my employer and retired on 31 December 2017 after 25 years with the company with a reasonable severance package.
This was great for me as the fatigue which was a killer in the previous 2 years is still there but is no longer a problem.
I’m doing some consultancy work which is great as I can choose to do as much or as little as I want. Also 90% of the work can be done on the computer at the kitchen table.
Life is much better now.
,
derek
So much depends on how much luck you have with how your MS behaves plus how much luck you have with your employer. I technically worked full time for about 5 years post dx and then 3 more years at 0.6 of FT hours. To be honest, it was only the patience of my employer that allowed me to last that long - after dx, I don’t think I ever truly got back to full steam at work, and by the end I was neither use nor ornament, quite honestly. A less understanding employer would have put me out to grass years earlier.
But your experience is your experience: I’m not sure that anyone else’s path is going to help guide you. Some people do miles better than I did, others don’t: it’s the luck of the draw. I hope that things work out well for you.
Alison
I’ve negotiated 2 days a week working at home and more flexible hours on the other days in the hope that the commute will be easier. Working for a charity I feel very lucky that they are being so accommodating. I don’t want to be a diva but now realise that I need to do whatever I can to help myself. Thank you everyone for your advice.
I’ve been diagnosed 2 1/2 years I worked full time till redundancy in Feb and am looking actively for full time at the moment when I can get past the too experienced objections as I’m trying to take a bit of a step down to lower stress. I’m lucky in that my type of works largely meetings and polishing a chair with my bum.
Only thing I’d say is be aware of what challenges you in my case it’s balance and avoid having to do the simple things that are a challenge for no reason. So take the lift and not the stairs for example in my case MS plus size 14 feet plus stairs meant I was conscious of people seeing me struggling and their concern which however well meaning doesn’t help your confidence at work.
Also if you start to doubt your cognitive abilities and feel it’s the end of work for you, speak to your neurologist/doctor I thought it was the end for me as brainpower and memory were shot but a very small dose of Citleapram (a happy pill) and Donepezil a altsheimer drug and things are back to normal (I never could spell) it turned out to be a very easy solution to the thing that was giving me the most worry and stress about working and make me wonder if it was time to give up.
stick with it as it sounds like you have a supportive employer
20 years since PPMS dx and still working full time. Luckily I work in an office, so even as my condition progressed and I adopted a wheelchair and added hand controls to my car, I haven’t really had to change the work I do. I think if I had pain or fatigue, or my work was physically challenging, things might be different, but for now I am thankful that I am mentally engaged and mixing with people every day.
My physical strength does really suffer when I’m stressed. For example, if I’m running late, there’s no point trying to rush because I’ll only go slower! This translates in to the workplace, too. Thinking about it, I guess I’ve adapted my style so as not to be stressed. Of course, the difficult work situations are still there, but I can approach them in a more measured way. Which reminds me, for the good of my health I avoid the mood hoovers and the joy vacuums as much as possible - those people that have a knack of draining my positive energy. I really do feel physically much weakened after an encounter with them.
1 Like
Amen to all of that. It is very heartening to hear stories of people who carve out a way to make it work long-term.
Alison
Hi. I work full time at work and I have to say my employer has been amazing. I was diagnosed 12 months ago this December with RRMS. Work arranged for me to see occupational health and they offered a lot of advice and support. I have also been able to amend my working hours to suit as i have quite a long commute and have recently put forward to work one day from home. I drive a 50 mile round trip every day which is tiring. I too need to exercise but an too tired by the end of the working day. I am determined to continue working full time for as long as I am able but I do understand how you feel. Speak to your line manager or HR person about your concerns. As MS is classed as a disability then they should do everything reasonably practical they can to assist. Good Luck.
Hi Joey, I work full time and have done for the 11 years since my diagnosis of RRMS. I guess I am quite lucky in that I have a supportive boss and the company has a good OA policy which provides a great support. The key for me has been communication, sure I understand that many people don’t like to discuss how they feel and how their symptoms are affecting them but I found that by being honest and admitting when fatigue was getting too much or when cog fog was kicking in colleagues and managers were more understanding. To be honest more often than not they had already noticed and were keeping a quiet and tactful eye on me ! I am not suggesting shout your dx from the roof but perhaps tell a few trusted colleagues and then work towards setting up a few different plans in conjunction with your managers. Example- normal everyday working, when I am struggling a little but can still work, when I am really struggling and need some support ie won’t be in the office at all . And finally a plan for when you are just not able to work for days / weeks however long. Good luck and remember dmd’s affect us all differently so prepare but be positive:)
Oh, I forgot when I posted earlier. There’s a Government scheme called Access to Work which helps employers fund changes to the working environment. I tapped it to it to get a decent wheelchair - hospital gave me a voucher to the value of the standard one they’d provide, employer put in some, and this scheme put in the rest. It can be used to make adaptations to help the employer pay for such things as building access and workstation changes
Worth knowing about if ever needed.