Those of you with chronic fatigue syndrome..

[worldwidetravel2017]

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

Sorry to hijack the thread, but do you mind me asking how you were diagnosed with cfs? Was it due to blood tests or eliminating other possible causes?

I have CFS, chronic pain plus crohns.

I work for the frontline emergency ambulance service. It’s exhausting !

I swapped to only night shifts (3x 10hrs a week) as couldn’t cope with a full time mixed rota.

I sleep A LOT !!! I’m exhausted to the point of feeling physically sick but yet I have to keep going as can’t afford not too :(

Thank you. Yes, it took a long time to get a sense of financial security and I'm very frightened of losing it. I've thought about asking if I can do some unpaid work but have been unsure of how to phrase it. Is it a bit weird that a woman in her mid thirties would be asking to work for free? I genuinely have no idea. I currently only work half days so I do realistically need to have some sort of trial run, even if it's just, say, three full days a week, over an extended period of time before taking the plunge.

I was seen by a rheumatologist consultant...

( also had glandular fever last year - common to have cfs after various other issues )

Had many investigations and tests - many

Exactly re tomorrows a new day

Im glad today is over , i cried at the hospital - had been nervous of todays scans for about a month

Some kinda trial run sounds like a good idea :)

I haven't worked since 2010 when I retired age 44.

@halloweensweets I went to GP after 4 months of unrelenting tiredness. Had all the NHS tests then tried BUPA (free through DH's work) and had more tests. After ruling all the other things out and showing my Fitbit data to a BUPA endocrinologist I was diagnosed with ME/CFS as she said the PEM was very clear in the data.
Went back to NHS and got a referral to the nearest ME clinic, but they just saw me twice and referred me on to CBT.
There's no magic in getting a diagnosis as ME is a dustbin diagnosis anyway, and there's no specific markers and no treatment.

@JewelleryCat it's really easy, just spit into a tube and fill out a questionnaire (you can do it in several chunks if long text is hard for you).
You do need to apply soon though, I think the study ends in a couple of weeks.

Consultant who diagnosed me said i need to ' accept ' the diagnosis..
I need some way of making / earning some kinda living though

Did you have an illness or virus or ' event ' before getting cfs ?

Did they check 4 b12 deficiency etc before saying that ?
Not meaning to minimise anything at all , just asking as you said dr waa not v good

Aww
Its hard...
Id like to do 30 hours over 5 days of something
But something that doesnt make me worse

2020.autumn i was working 60 hours a week

Medics said i over did things after previous illnesses in last 2 - 3 yrs

I started with fibromyalgia after a traumatic birth with ds, which over 6 years developed to CFS.

Sorry to hear that .
Woop 4 motherhood though :)

I fell ill at 13 and I've never been able to work. I'm currently studying a degree via the OU, and I finish soon. I have been wondering if there's anything I could do from home afterwards, so this thread is helpful :)

Kudos 4 degree studying

And lovely to virtually meet :)

Life can be feel isolating with cfs at times - its so important that those of us with energy limiting conditions connect

Can i ask what your studying ?

I start some counselling next week
Not sure how il find it
Depends if i click a bit with the person i guess...

Has anyone found it overly beneficial?

Some friends of mine have found it kinda upsetting / draining

Freelance editor so I pick my hours. When I feel ok I increase hours and when I feel exhausted I scale right back. At my worst I worked about 1-4 hours a week. In the past I have worked 60-70 hour weeks. An even keel now that I am not so ill is 10-25 hours a week. At 25hpw I get very tired though. 20 is my optimum when I am well.

Did you always work in that professional area or did you manage to get into it ?

TY & hello.
I'm studying English Literature and Creative Writing

Yes they checked for that along with anemia, thyroid etc x

I am also a freelance editor. I did a course through a training college but the editors and proofreaders association run them online too (the CIEP). I've also written content for websites, which I didn't need any training for. I would suggest you have a look at Upwork - it might not be very well paid (although you set your own rates, but if you're too expensive then people will pick someone cheaper). But you can start off small and take on only what you can cope with. I've had some interesting projects from them.

I did a bit of it before I got ill, more as a side income. But when I could barely move it became the only reliable source of income as I could manage it in small chunks of time. And I love it.

How is everyone?