Last reply 1 year ago
Reducing hours / stopping work

So I work full time in London (I commute from Essex) and I love my job but since the end of last year I became quite ill – my meds weren’t working. I’m now 3 months post Lemtrada and getting better but I’m only managing 3 days a week. My work are brilliant and are helping me to eventually get back to 5 days but I hav a question. When someone makes the decision to stop working or reduce days/hours, do you wait until you physically can’t do it, or do you say to yourself “I don’t want to wait until then, I want to live my life while I can!” So in this example, is it not better to work but still allow yourself to have time off to enjoy your life to the max?! Just curious

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1 year ago

Tricky one! If you can afford it i would carry on part time. And if you can still walk….. oh man!!!…. take the most of it now. Go to beaches mountains camping etc!

I stopped working when i started using a walker so i was there full time for the first 4 years! Now that i stopped i realised no one is indispensable at work and it was a bit too much full time with 2 young children. Time flies take the most of it.

1 year ago

@gates1989 , if only we could see into the future, eh?

But, it’s not a simple yes or no question, as @mmhhpp alluded to, there are several factors that go into this decision.

– Could you afford to reduce your hours?
– Would you have things to do in this additional leisure time?
– would your feeling of self-worth suffer?

etc, etc.

I suppose it does boil down to a quality of life issue. And you are the best person to judge that………

1 year ago

Difficult issue, I work 3 weeks then have one week off, being doing that since Jan 2015, I would struggle with physical and mental fatigue but this works for me.

It is not easy keeping working but this helps for me.

So my wife and I both work and when she was dianogsed my first instinct was for her to stop working and reduce stress since we were financially able to do so. As we talked through it, I think she isnt the kind of person then can just be at home and not do anything without creating stress in other ways.

She now works from home a number of days and allows her to take a short nap if needed and makes her more productive for the rest of the day.

@gates1989 I dont know your situation, but since your employeer seems really willing to work with you, are there any non standard arrangments that could be a win-win for everyone? Would being able to have more flexibilty in the projects you take on or working remotely or anything like that be an option?

1 year ago

I’m 5 days a week 40 hours Nothing’s changed here since before Christmas iv bot even had a sick day yet ( Odv been to appointments tho)when I started with mobility problems and everything else I’m a stubborn bugger and have three kids to think about. It’s not a option for me iv been hobbling/crawling at times round work and at home I’m determined to fight ms it can kiss me t’hasshoyal. Iv been offered lemtrada yesterday and I think I’m going to go for it so I can provide for me fam for as long as I can. But if I win the lottery it’s a different story il be sat by the equator being served the OMS diet by 23 topless servents 😂 doing what I want when I want and spending as much time with the lovely wife and kids as possible. If anyone has a winning ticket to donate please feel free to do so (shit eating hopeful cheeky grins) 😃

1 year ago

If you can get by Gatey lass reduce your hours even quit and do what you want to do with your life. Some things are more important than work. Iv have to work at the moment for me sprogletts. Is what I should have answered with 😂

1 year ago

Have a look at your employers policy regarding ill health retirement/reduction in hours. You are still very young and probably the thought of staying home all day would drive you insane, but your employer may have a policy that might let you use flexi hours or something similar…ie work say 980 hours a year which you do when you are able, but they pay you a regular monthly wage so you know where you are financially. Worth asking!!

1 year ago

My work are brilliant and I’ve decided to drive into work as of next week to see if that helps with the physical fatigue, I’ll carry on doing 3 days and increase it as and when I can, if it gets too much I’ll speak to work and see if I can drop a day or work from home, I would much rather go back full time but I’m struggling to justify working until I physically can’t and then reducing days and still not being able to do anything! It doesn’t seem right lol but we don’t live in a perfect world and money doesn’t grow on trees lol thanks everyone x

1 year ago

@gates1989 thank you and others here for sharing about this it’s something I have wondered about myself.

I don’t work in a job any more as my fatigue can be overwhelming and I also have other health issues to deal with. I don’t regret giving up work because I rang in sick a lot with ‘exhaustion’ after being out for a miles walk on a Sunday. Hope they didn’t think I was drinking (!) but they probably didn’t think that.
I am helping nowadays to look out for my 80 yr old mother who I live with and help her run the house and garden so there are always jobs to do and time to rest, read books, listen to music as well.

I have much less money than when I was working, so have to budget very carefully. I have to pace myself with tasks and I am unable to mow the lawn unless I just do half and my mother or brother does the other half. I sometimes do crochet but can only do about 3 rows in a day! I smile at life a lot because it eases the burden to do that.

I guess I have been smiling at life for years really because I had a lack of energy for about 30 years before being diagnosed with MS. I don’t feel bitter about that because I always suspected I had it after listening to an MS-er give her testimony many years ago. She listed the early symptoms which rang a bell for me. I had twitches in my muscles and tiredness and tended to drop cups etc. I worked on being healthy after that and read books on nutrition etc. and went walking regularly too.

I have one 1cm lesion on one side of my brain and a few ‘white dots’ that showed on the MRI. My neuro seems to think I am okay now and hasn’t scanned me for a couple of years. I don’t want to take meds as I had bad experiences with psyche meds and hated side effects from the psyche meds. I am on a med for my issues now that doesn’t seem to have side effects but I will go on meds for my MS soon I think as I get a lot of unexplained pains, especially along the right side of my body and down my right leg. I’ve had an unltrasound scan but it didn’t show anything. I still have an ongoing fatigue and general feeling of something ‘wrong’ with my body especially in my chest area and upper abdomen. I also get ‘tight’ feelings in my neck but I suspect stress to be the cause of that. I don’t watch the news if it stresses me and I’m glad I have a choice of company now instead of listening to work colleagues who weren’t always full of the joys of life.

Sorry for being so long. I guess I needed to get out my ‘stuff’.

Wishing you all the best in everything.

1 year ago

This week I brought up reducing my hours to my work and am waiting for a response. I currently work a 40 hr week and find that I feel largely, like a zombie, by the time I get home there’s nothing left of me, for me and I don’t want that to be my life. I’ve asked to go down to a 35 hr week, I just hope they allow me to. It would enable me to hopefully regain some energy and be able to do “me” things which I’m really losing grasp of.
I’m glad you posted. x

1 year ago

Hi @cedelle one of the best things I did was to reduce my hours at work and take Wednesday off. It helps me a lot to manage fatigue and I find I am not just giving all my energy to work which I was with full time Financially it’s slightly tighter but it’s worked well for me. I also do exercise on Wednesday in a day time class which I wouldn’t have the va va vroom to do after work (I just have a walk)

All the best

Hi @doubleo7hud glad to hear about the Lemtrada. I’ve sent you a request would you mind messaging me as I am interested what they said and where you went thanks

1 year ago

Hi @gates1989 oops got your name confused with Cedelle – got to love MS memory

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