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Author Topic: Jobs and hours - an understanding.  (Read 1338 times)
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Kristinb
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« on: February 01, 2017, 09:30:40 AM »

Hello,

As someone who has always worked tirelessly and furiously hard at any job I'm obviously finding M.E. a struggle to reconcile with.

I'd love to know if you manage to work and if you don't. Anything on this would be a great help to me and I'm not after specific answers.

The sort of thing I am after is  If you do work, what do you do and how many hours? What does the job involve? If you don't how long did it take you to stop working? What do you do now? What did you do and what couldn't you cope with?

I feel like I'm now questioning the work/job decisions I've made the last couple of years, leaving jobs due to not liking them or depression when really it may have been M.E. Maybe if I'd managed it I may have been quite happy there!

Thanks in advance!
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There is a crack in everything,
That's how the light gets in
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neptuno
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« Reply #1 on: February 01, 2017, 10:15:32 AM »

I battled on regardless, kept reducing my hours until I crashed and was rushed into hospital. I haven't been able to return to work.
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agapanthus
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« Reply #2 on: February 01, 2017, 03:52:22 PM »

I am now 64 and officially retired 2 years ago. I was on ESA for around 4 years, but before that I did work with mild ME for around 4 years. Actually before that I was ill but not diagnosed, and did some part time temporary work, and was gradually getting worse over the years.

I think that if you do manage to work, and it sounds as if your symptoms are too severe at present, then it's much more manageable to work part time. If you set yourself up for full time work with ME then you are more likely to fail. In my case I had reduced from 22 hours to 16 and was advised (by and ME specialist) to try to leave a day between each workday, but initially I worked for 2 long days, and eventually I worked for 3 shorter days.

Like you, I worked as a receptionist - not with animals, but on a very busy NHS dentist reception. The phones rang a lot, and there was a lot of pressure in the job. I tend to suffer from anxiety and the job was hard in that respect and got worse as I got more ill. I had to take 5 months off after a major eye op due to the symptoms I got re the ME as well as not being able to see the screen properly, and then I caught whooping cough soon after I went back and that was the end of my working life, as the illness gave me a bad relapse.

This is a really useful booklet for anyone trying to cope with ME and the workplace
https://www.actionforme.org.uk/uploads/pdfs/me-and-work-2016.pdf
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satmanbasil
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« Reply #3 on: February 01, 2017, 11:13:20 PM »

Hi

when I first started feel ill with this condition it was one of having to take longer periods off work to enable my body to recover, this was followed with phased return to work doing so many hours a day or so many days a week.
the only problem with this was my employers idea of it being black and white so I was always under pressure to commit to doing so many hours or days in the week although at time my body wouldn't allow it.
Anyway I found as my condition got worst having to renegotiate with my employer on hours or days due to my recovery taking longer, In the end however I had to except redundancy due to ill health, since then I have not returned to the work place and been told I never will by the consultant and GP so life now days is spent managing my illness and living within my energy levels trying not to crash and burn.
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Kristinb
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« Reply #4 on: February 03, 2017, 09:11:29 PM »

Neptuno - Gosh! You have my sympathies and I think I was headed this way but I thankfully have an aware Doctor. Whilst she doesn't profess to be any sort of expert on M.E. , she has a family member with it and knows the risks of pushing on through.

Agapanthus - Thank you!  It's good to have a perspective from someone in a similar role.  The company I work for are really fantastic (Times top 100 small business) and they really are aware of rewarding you as a person. This year, they also pledged to not just improve their healthcare but the mental and unknown illnesses. I had a 2 weeks off (my first proper crash) at the end of September last year and when I went back I took up reduced hours; four 6 hour shifts a week. I still did my 1 in 3 Saturday.  So I think they will be accommodating if I need to temporarily or permanently change my shifts. The issue lies with the work itself. For the most part everyone tries to be understanding and take up the more physical or mentally taxing work but it doesn't really work out that way. I was supposed to do middle of the day shifts so I wouldn't have to battle rush hour traffic or get caught and have to stay at the end when emergencies were brought in (we aren't an overnight vets so we have to stay until the client is stable to go home/be referred).  But due to staff shortages or it being generally busy I'd end up on a different shift and go from a 6 hour with commute to up to 10 hour! It is also tricky if someone rushes in a pet and needs help moving them and you are the only one available. Or if I need to sit down but the only people to cover me are nurses who are assisting in a surgery! Its not surprising I crashed again! I also think I didn't take enough time to recover the first time as I am considerably worse now.  I did read that booklet way back in September but memory permitting it is time for a re-read.

satmanbasil- Many thanks for sharing your experience!I may end up with a similar situation as yourself. I think work will want consistency from me and understandably due to the job, they need reliability but I'm not sure I'll be able to provide it. At the moment, I am trying to manage my symptoms and energy day to day. I keep a diary to help me figure out what causes my lower points and what helps. I haven't been doing this for long enough to get any useful information from however.  I am trying to remain positive but I am finding it a bit harder everyday!
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There is a crack in everything,
That's how the light gets in
- Leonard Cohen
Anne56
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« Reply #5 on: February 08, 2017, 03:51:27 PM »

My story is very similar to satmanbasil's. I was on sick leave for about 18 months in the two years prior to my finishing work. I had reduced my hours (on the recommendation of occupational health) but I still struggled. Eventually my contract was terminated as my employer couldn't give me flexible working hours, also recommended by OH. After two years I managed to get Ill-health retirement but I still have to live on ESA. If they hadn't changed the State Pension Age I would be in receipt of my state pension now! 38

My personal belief is that if you have anything other than very mild ME/CFS, it is impossible to work. For me, even part-time hours would not be suitable as I couldn't guarantee an employer how I would be at any particular time of the week. My work now is managing this condition and getting some quality of life back.
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Mike94
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« Reply #6 on: June 12, 2017, 11:11:00 AM »

I've just finished a medical degree which has taken it's toll on my health. I was without CFS until I started my degree. I'm hoping that rest over the summer will lead to enough recovery to take up a stressful job, but if not, I'm not sure what I'll do
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