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Original poster

Those of you with chronic fatigue syndrome..

193 replies

worldwidetravel2017 · 11/10/2023 14:50

.. dya mind me asking what you do work wise ?
Signed off at the moment but feeling a bit stuck
Many thanks

OP posts:
Stressybetty · 11/10/2023 15:03

💐 sorry to hear that, it's crap isn't it? Am in the 2nd year of a career break but usually do civil service admin. Work from home 40%, office 60%. Always a struggle. Currently helping DH with a bit of dog daycare/boarding and finding that easier and much nicer.

TedMullins · 11/10/2023 15:11

Freelance digital content. Entirely remote and I can to an extent choose my own hours so take a lot of naps around it.

InMySpareTime · 11/10/2023 15:22

Storyteller, but very part time (~1hr a month).
It's exhausting but I really love it, it's worth the inevitable crash.

BarborousBarbra · 11/10/2023 16:11

Freelance writer. Work from home and choose my own hours so it's ideal.

Original poster
worldwidetravel2017 · 12/10/2023 11:37

TedMullins · 11/10/2023 15:11

Freelance digital content. Entirely remote and I can to an extent choose my own hours so take a lot of naps around it.

Sounds good
Do you mind if i ask how you got in to that ?

Ive spent this morning in bed with pem / .. cfs legs .. as took part in life a little yesterday

OP posts:
Original poster
worldwidetravel2017 · 12/10/2023 11:39

Stressybetty · 11/10/2023 15:03

💐 sorry to hear that, it's crap isn't it? Am in the 2nd year of a career break but usually do civil service admin. Work from home 40%, office 60%. Always a struggle. Currently helping DH with a bit of dog daycare/boarding and finding that easier and much nicer.

Thank you
Yes - its hard :(

I will hopefully be getting some help from a fatigue clinic soon
& starting counselling soon...

I do miss the ' old me ' / old life a lot.

Consultant told me in summer that i need to accept my diagnosis...

OP posts:
Original poster
worldwidetravel2017 · 12/10/2023 11:39

InMySpareTime · 11/10/2023 15:22

Storyteller, but very part time (~1hr a month).
It's exhausting but I really love it, it's worth the inevitable crash.

Good fun

:)

Its so so important that we do some things we enjoy

OP posts:
Original poster
worldwidetravel2017 · 12/10/2023 11:41

BarborousBarbra · 11/10/2023 16:11

Freelance writer. Work from home and choose my own hours so it's ideal.

Edited

Sounds great...

Ideal for cfs life too

Did you always have that background or was it something you moved into ?

I really need to find a path..

Id love to be able to ideally do a few hours a day of something

Any tips , advise etc would be greatly appreciated

OP posts:
riotlady · 12/10/2023 11:50

Civil servant here too, 2 days at home and one in the office. They are generally quite supportive of disabilities

Techno56 · 12/10/2023 11:57

I used to work part time for the NHS (no WFH at all) but had to give up. I work for my local council now and they have fabulous flexible working 90% from home after training finished.

TedMullins · 12/10/2023 12:12

worldwidetravel2017 · 12/10/2023 11:37

Sounds good
Do you mind if i ask how you got in to that ?

Ive spent this morning in bed with pem / .. cfs legs .. as took part in life a little yesterday

Show quote history

I used to be a journalist so I had a big portfolio of written content. I started approaching commercial marketing departments, startups etc as I wanted to move away from journalism and into content marketing. I don’t think it’s something you can do without experience and a portfolio of work unfortunately.

Plinkplonkplinkplonk123 · 12/10/2023 12:18

I am medically retired due to cfs (and other issues) and wouldn't be able to work currently so claim pip, esa and my pension. Its been very hard and 6 years in I've still not come to terms with it, I fought very hard to try and continue to work but even with adjustments it wasn't possible. I find I'm best when I have structure but that's so hard with a very unpredictable condition. I find that I'm at a different lifestyle to my friends very hard, I actually have more in common with people of retirement age than of people my age (40s) but also I don't have the money, health and have the responsibility of dependent dc. I have had assessment from the cfs team but support is minimal (I found ot and physio the most helpful). I'm also currently having emdr for the trauma that caused the cfs which is helping but is not a cure. Its hard, I do hope one day I'll be able to do some work (even just from home would be great) but also I realise fighting to continue to work for several years actually probably made me worse.

BarborousBarbra · 12/10/2023 12:18

I’ve always done that, started while I was in uni, but I’m not an especially amazing writer and I’ve had constant work since 2006!

If you want to get into it, maybe start a blog or write some sample pieces for a portfolio, then get on a site like Upwork and bid for a project that looks manageable. Once you’ve had a client or two, you can use them as testimonials to hopefully bring in more private clients.

It can take time to build up a strong enough client list to earn a decent living, but it’s totally possible if you can string a half decent sentence together, and you can earn a decent rate if you choose clients wisely.

Guesswho88 · 12/10/2023 12:25

I've had a possible diagnosis of ME, though to be honest my doctor wasn't very good - he basically said your tests haven't shown why you are having numbness/pins and needles in your limbs and extreme tiredness, you probably have ME, have a look at this website for ME. That was it.

I think the answer like others have stated and that I hope to move into eventually. Work from home if possible, part time, if you can choose your own hours even better.

I'm near the end of an online maths and statistics degree and am wondering what I can do from home with that...I've seen a couple of data analysis jobs where you can work from home..other than that I'm stuck.

BarborousBarbra · 12/10/2023 12:27

Online maths tutoring? Or do you need a teaching qualification for that? I have a friend who tutors online in another subject and it’s pretty flexible.

WaningCrescent · 12/10/2023 12:27

Another freelance content writer here, I don’t have CFS because my debilitating fatigue is attributable to various autoimmune conditions, but it’s a similar deal.

You can probably expect £25-£40 an hour for SEO (search engine optimised) content in niches such as finance, medical or tech. It’s actually relatively unskilled too. I had zero interest or experience in my niche but use AI to generate the brief and it’s like painting by numbers, but with words.

goldennavy · 12/10/2023 12:29

Work as an artist
Really helps with mindfulness and I can pick and choose when I paint

capabilityfrowns · 12/10/2023 12:30

Following with interest

I've had a very debilitating illness that has left me with cfs. Im currently signed off and am worrying about even attempting work again .

Quercus5 · 12/10/2023 12:38

I realise fighting to continue to work for several years actually probably made me worse.
^This point which @Plinkplonkplinkplonk123 makes is so important. Far too many of us made ourselves worse by pushing through because we felt we had to.

I’m too ill to work - I had to take ill health retirement. But that enabled me to take as much rest as I needed, and now I have regained a bit of energy and use it to do whatever brings me pleasure. I’m even well enough now to do a bit of volunteering with an ME charity.

It’s hard work learning to accept your diagnosis, but if you can get your head around it then life becomes altogether happier.

TravellingT · 12/10/2023 12:41

I was diagnosed age 10 along with other conditions so I'm well adjusted to what I can manage, which makes working somewhat easier (not easy though!)

I am a PA to my husband, I manage his calendar, schedule and plan events, attend events and travel with him. I can do most of this from home, when I'm in the office with him I have my own office with a sofa, comfortable chair options, standing and sitting desk. I manage my own time there so I can nap if needed, work lying down etc. The most physical work I do is coffee runs, trips to the printer, break room etc. Travel events usually fit around me, I don't go during flares but manage with seat adjustments, leg room etc.

volunteersruz · 12/10/2023 13:13

I used to work in healthcare but unfortunately not worked now for about 13 years and it’s looking unlikely I’ll ever work again …..but I know it’s hugely variable and individual and I have met people through the CFS service who have been able to return to work ,albeit with a very different perspective on life! I wish I’d stopped and had those realisations earlier on in my career when I may have turned things around.

Original poster
worldwidetravel2017 · 12/10/2023 13:18

Plinkplonkplinkplonk123 · 12/10/2023 12:18

I am medically retired due to cfs (and other issues) and wouldn't be able to work currently so claim pip, esa and my pension. Its been very hard and 6 years in I've still not come to terms with it, I fought very hard to try and continue to work but even with adjustments it wasn't possible. I find I'm best when I have structure but that's so hard with a very unpredictable condition. I find that I'm at a different lifestyle to my friends very hard, I actually have more in common with people of retirement age than of people my age (40s) but also I don't have the money, health and have the responsibility of dependent dc. I have had assessment from the cfs team but support is minimal (I found ot and physio the most helpful). I'm also currently having emdr for the trauma that caused the cfs which is helping but is not a cure. Its hard, I do hope one day I'll be able to do some work (even just from home would be great) but also I realise fighting to continue to work for several years actually probably made me worse.

Hey

Many thanks for all replies guys - please keep them coming .

" but also I realise fighting to continue to work for several years actually probably made me worse"

^
Can totally relate to that ..
I had glandular fever before etc -
& pushed too soon after
And covid before that etc

Im only a little younger than you - can relate to being in a different place to friends of that age

Unfortunately they wont give me pip but thats a different story - they aren't doubting my cfs & consultant evidence but i dont score enough points

They also wont give me ESA , long story - basically i did the morally right thing but have kinda had it thrown back in my face. Its a broken system. Theres a period of time that they look @ re ESA and where i I didn't claim anything or work for a period (. Consultant says i was already unwell @ that time) - they wont give me anything as didnt pay work ni paye at a particular little time.
Mad system
The 3 years before that are paid in full but its Irelevent
Equally - had i claimed 2 years ago - time line / contributions wise theyd of given it then.

I thrive on structure
Missing working so so much
Would love to do some flexible / part time from home work

OP posts:
volunteersruz · 12/10/2023 13:19

Ps if u r waiting to get support from CFS services for the first time I highly recommend starting mindfulness whilst you wait. I also highly recommend the alignment programme from www.cfshealing.com ….it’s donation based so you can do it for free.

Everything about Chronic Fatigue Syndrome- CFS Healing

Find out everything about chronic fatigue syndrome. Causes, how the body develops symptoms and how to reverse your body to health with a successful approach.

http://www.cfshealing.com

Original poster
worldwidetravel2017 · 12/10/2023 13:19

capabilityfrowns · 12/10/2023 12:30

Following with interest

I've had a very debilitating illness that has left me with cfs. Im currently signed off and am worrying about even attempting work again .

I hope you have some brighter times soon
Have you had input from a fatigue clinic?

OP posts:
Original poster
worldwidetravel2017 · 12/10/2023 13:22

BarborousBarbra · 12/10/2023 12:18

I’ve always done that, started while I was in uni, but I’m not an especially amazing writer and I’ve had constant work since 2006!

If you want to get into it, maybe start a blog or write some sample pieces for a portfolio, then get on a site like Upwork and bid for a project that looks manageable. Once you’ve had a client or two, you can use them as testimonials to hopefully bring in more private clients.

It can take time to build up a strong enough client list to earn a decent living, but it’s totally possible if you can string a half decent sentence together, and you can earn a decent rate if you choose clients wisely.

Thank you
Years ago i did some writing in a work field i used to work in - was paid in gift vouchers but yeah.. have always enjoyed writing

OP posts: