Hi Everyone I would like some advice on what to do. I’m currently working. I have a 50 minute commute to and from work everyday and work for 6 hours. I was dx with ms 18 months ago. I have good days and bad days. I’m constantly tired. I feel I’m constantly battling to pretend I’m normal and ms doesn’t affect me. I worry that I will keep working until one day I will be so bad I’ll have to take illness retirement and will have never enjoyed whatever healthyish time I have left. It is so hard not knowing how this disease will progress. Financially I don’t need to work as I have a great husband who supports and looks after me but working gives me that feeling of self worth. What do you think? Many thanks everyone x
I was in you position when I decided to cut my hours, I just work Tuesday and Wednesday now and feel my quality of life is much better. I was just working and resting before but now I still work then have time and energy to see friends and feel like I have a better life as I’m not dragging myself to work any more. I should of done it years ago
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This is not for me or anyone else to opine upon; it is entirely up to you.
The things you speak of are not limited to those with MS; everyone needs to seek out a favourable ‘work / life’ balance, otherwise what is the point?
If you have financial security enough to cut back on your hours, and this is something you consider would be beneficial to your state of mind, then why not?
The not knowing what the future holds is also something not limited to those diagnosed with MS. People will work tirelessly towards a rainy day, which for them never comes. People will forever be getting hit by buses!
But with all this being said, there is a tremendous weight of evidence to suggest that adequate rest is required if one is to live ‘happily’ with this disease. Anyone would be unwise to ignore a body which screams for an extra few hours of sleep each week, and this is especially true for MS’ers.
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Feelings of self-worth are so important, I agree. There are more paths to it than paid work, though. Voluntary work and contributing to your local community, whether formal or informal, becoming immersed in creative pastimes, engaging with the natural world, being a good and involved friend and neighbour. All nice things and all rewarding things, but not easy to do when on a work schedule like yours. Paid work is not the only show in town.
Good luck.
Alison
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I found stopping work hugely beneficial to my overall sense of wellbeing. I have heard others say the same - although I know the financial challenges for many can be huge. I find that I can pace myself now in a way that helps me manage my MS and keep symptoms under control (for now anyway). With my job that was impossible.
The other benefit has been leaving behind all the stress that work can cause. If I get stressed now, which is rare, pins and needles and other ms type feelings start up immediately - but they don’t last long. At work they were almost permanent. Fatigue is much easier to manage too.
As for that feeling of self-worth, I know exactly what you mean but there are lots of things that you could do - some new learning, voluntary work, those pursuits you always wanted to try, places you wanted to go, but never had the time. Sometimes, I wonder how I found the time to go to work - but the difference now is that I am in control. If I am fatigued and want to lie down, I lie down. If I am out somewhere and feel rough, I go home.
If you have worked for many years (I had worked constantly for 40 years) it is hard to imagine a different life without a day job - and a bit scary too. Personally, I am so glad I did it.
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Vivster,
this is always a toughie and as stated above is entirely your call. I will happily share my experiences. I stayed in work and my employer supported me in many ways to try and keep me going and being productive. It was also very important for me to feel useful. I pushed myself hard to keep going (which was ok for me, but might not suit everyone in different circumstances) When I finally did go for Ill health early retirement (IHER) it was the right time for me. I did find that when I stopped work and changed my fight with MS my symptoms got a bit worse! I then undertook some low impact voluntary work and felt a bit better again.
So I wish you all the best whichever way you go.
Mick
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Hi Vivster
I think it’s very much an individual decision. As Alison said, your feeling of self worth is important, and that’s what people often get from their paid work.
If you are managing/enjoying the job and the commute and feel it’s worth it, then continue while you’re able to and still want to. But if you’re finding your fatigue level is too great, then maybe you could look into cutting your hours, or getting a job that’s closer to home.
Personally, I had MS undiagnosed for 5 years while I worked full time and travelled a lot for work. After diagnosis, I continued to work full time for another 4 years. I got immense satisfaction from work and was happy with the physical effects of working away from home a great deal, as well as the intellectual challenge from my work. Earning a decent salary had a massive effect on my self confidence as well.
I stopped work when I felt too fatigued and had too many relapses with ongoing symptoms and long lasting disabling effects. This was 10 years ago. I too am lucky enough to have an OH who earned enough before his retirement 3 years ago, to be able to support me and we didn’t have to make any big changes to our way of life as a result of my income dropping so much.
it’s certainly a big adjustment to make. And only you, together with your husband can make that decision. Best of luck with it.
Sue
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