Last reply 4 days ago
MS and work

Hi,
Firstly, thank you for reading my post.
I was diagnosed almost 5 years ago with RRMS. Due to fatigue I reduced my work week to 4days in 2018. Initially the reduced work week really helped with the fatigue issue but this year I feel back to square one.
Due to MS I am now heat sensitive and found this summer (compared to last) difficult particularly in terms of brain fog and anxiety. I keep messing up at work and feel incompetent. 😭
My question is does anyone else find they make adaptations to their lives to cope with the MS only to find after a while the adaptations are not as effective as before?
Advice is very welcome.

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mak_mill
2 weeks ago

Hi Therese, I have been DX 5 years and worked with my employer for 22 years. Since I was diagnosed I have changed roles 4 times which I don’t like. I also have heat sensitivity, fatigue and brain fog which does not help when managing my staff. I feel that I am slower to process new information but refuse to reduce my hours as this would have a massive effect on my pension when I need it. My work also has a Disability and Carers Association and I was fortunate to be elected to its Executive Committee helping other staff with disability issues and representing them as required. Stay safe


elisabeth_turner
2 weeks ago

@therese i read your post last night and it’s been on my mind that i should’ve replied. I can totally relate to what your saying. Dx 20yrs and have gradually had to reduce my hours. I have no advice for you really, which is why i didn’t reply, but sometimes it’s nice to know that there are people out there going through the same thing. I am 47 years old, have zero prospects of climbing any career ladders. In fact i’m clinging on to the bottom rung :). I simply can’t see myself working to retirement age, and worry about the financial implications of that. But it is what it is, and i do my best to just keep going, one step at a time. Xx


therese
2 weeks ago

@elisabeth_turner I hope this message reaches you. Thank you for your reply. My post was made in sheer frustration. I too am at the bottom rung of the career ladder and don’t see myself climbing any higher. It’s sad but this isn’t what bothers me most. I am worried that I will have to retire early as my brain fog may become too much of a hindrance. 😔
I really appreciate your response. It’s good to chat with someone who understands the invisible symptoms of this illness. xx


stumbler
2 weeks ago

@therese , it isn’t the adaptations becoming less effective, it’s your MS progressing and causing more problems.

The summer heat can get oppressive and really knock the stuffing out of us. But, it’s only usually for two weeks in the year! 🤣🤣🤣

Can you be flexible on your hours, e.g. start earlier, have a longer lunch and finish later? Are you able to work from home occasionally?

Also, contact the MS Society to see if they have any advice regarding any Government assistance available to you.


vixen
2 weeks ago

Hi @therese, I am very similar; diagnosed with RRMS 4 years ago, reduced work last year, and now have reduced again. What sort of work do you do? I am finding that life is one long reasonable adjustment at the moment! Having a general rethink, as I don’t want to make my life any more difficult than it has to be. And this is the first year I’ve really flagged in the heat. Don’t have any real solutions I’m afraid but at least yo know you’re not on your own with this! x


roger_dilley
2 weeks ago

I fin that the heat puts me into a bad brain fog. Feeling like I have mini blackouts and I forget what I was doing or going. I work in a hot environment and that doesn’t help. At home I have ice packs to put on my head when I get too hot or have overdone it


therese
2 weeks ago

@stumbler, @vixen and @roger_dilley
Thank you all for your replies.
Feel all at sea without a paddle.
I guess all I can do is hang on and hope this is a nasty flare up of symptoms due to Summer heat.
Thank you again


jmms
2 weeks ago

@therese Your situation is almost exact replica of mine! I was diagnosed 5 years ago and also dropped my working week to 4 days in 2018. Doesn’t make a huge difference just makes an almost impossible situation a tiny bit easier. I hear you with the adaptations I am constantly chopping and changing in order to meet ms requirements, yeah it seems the MSresponds to it well at first but then just goes back to normal. I don’t think it’s the MS getting worse necessarily, it’s just the MS being so wildly variable. What do you do for work? I am a bridge engineer.


therese
4 days ago

@jmms hi, sorry for the late reply. Thank you for contacting me. I am a clerical officer in local government. I do suffer heat sensitivity and when I reduced my work week last year I wasn’t so affected by the heat. But this year the problem has flared up again. I think you are right about the symptoms being so variable. 😔 I felt so deflated when I wrote the post. Fatigue and cognitive issues were really getting me down. Do you also suffer with these issues? Any advice is welcome.


jmms
4 days ago

@therese yes bone crushing fatigue and cognitive slowness like can’t find the word for things. Have muddled through the last 5 years somehow. Antidepressants (citalopram) help hugely with focus, concentration and drive and are the one thing that are consistently effective for me, so if you can find the right one for you then that could be very helpful

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