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

Have you seen a rheumatologist consultant?

Online maths tutoring?
Some advertise for free on c h i l d c a r e . C o . U k

( without the spaces)

I work full time in the private healthcare sector. I live on redbulls and nap during my breaks.

I'm unfortunately not in a position to claim anything and the LA in my area aren't even do PIP applications atm due to such a long wait list so I'm struggling and killing myself with no help. I have a private diagnosis and my work place have given some time off recently but it's hard.

Random but nationwide currently have a 200 free gbp switcher deal

( tax free, free income)

I did some bank switcher deals via u switch lately .

I know money can be tricky 4 those with energy limiting conditions

Those of you with a diagnosis, please PLEASE sign up for the Decode ME/CFS Research Study! They have funding but need 25,000 participants with a diagnosis!

PIP isn't done by the LA! It's done by the DWP! My PIP has just been renewed and I know someone who was just awarded if for the first time. Whoever told you that was very mistaken

I have a blue badge 4 disability/mobility yet they still havent given me pip 4 mobility
#cfslegs

Did it ages ago in the first wave

I got PIP on my first try with only an ME/CFS diagnosis and a statement from DH saying how he helps me day to day.
Only standard mobility but that was enough for a blue badge, which has really helped me as now I can get DH to park near things I still have the energy to do stuff when I get there.

Getting the blue badge was not an issue
But pip wont help me

My family wrote a letter too

Also my diagnosis - from a consultant specialist
( not even a diagnosis from just a gp but pip still not listening / helping )

My diagnosis was from a consultant too. I didn't apply the first 5 years I was ill but this year I have deteriorated significantly and am housebound most days. Whether PIP is awarded or not is so hit and miss, it depends whether your particular struggles fit their definitions in specific categories, and whether that's more than 50% of the time. It also depends whether your assessor understands what ME/CFS is, many don't.

How is everyone?
I wish it was easier for those with energy limiting conditions to find flexible work

Im waiting to have help from fatigue services

Wish i could find suitable part time / flexible work

I'm self employed and very part time. Like an hour a month part time.
I build in rest days before and after work days and DH drives me as close as possible to the location and carries my stuff in for me.

Had to get up early since Monday as we are having decorating done who come early (9am) and I'm so so tired.

It's so frustrating that so many of us can't work (I have worked P time the last 10 years but I do wonder if pushing has just made it more entrenched) but can't access benefits. What are you supposed to do? It doesn't recognise that whilst you may be able to spoon food into your own mouth, or walk 50 yards that doesn't equate to doing a job 5 days a week.

I applied for PIP and got the transcript. Lie upon lie. She was just making stuff up ! They have financial incentives to find applicants to not be eligible.

I would have gone to mandatory reconsideration but I was too ill and broken (and had a 3 year old at the time) to fight.

Now, it seems every time I get Covid I'm back to square one and unable to function for weeks/months.

Civil service is becoming very flexible now.

Aw.
Hope youve had some little spells with a little bit more energy

Mornings are tricky 4 me too

Sorry to hear this

How have things been this week ?

Yeah - i went to mandatory reconsideration but they still said no

When the rung me they asked if i hada consultant @ fatigue clinic yet - i said no but will be getting one - im in the system - ( wasnt a good enough reply)

They were interested in the fact that I'm starting counselling soon but less interested when they heard its not nhs - but private due to some insurance i have in old work field

I really want to work part time - ideally flexible like 5 / 6 hours a day from mid day or such but its hard

Was at hospital today 4 a ct scan as other stuff going on too

Thank you - will try and look later this week

Just resting after hospital today

Lifes been a lot the past 6 months

Thanks for asking @worldwidetravel2017. Been rather down this week, lack of energy plus endless struggles with DS EHCP. Council being their usual time wasting selves (more faff means they have to pay out for speech therapy less time - so they are ignoring consultant report - we are going to Tribunal next year).

Just feel utterly worn down. Said to DH last night, I want to go to sleep and not wake up. I don't actually want to end it - I wouldn't do that, but that sheer desperation for the chronic stress to stop so we can just have normal family time, and not always be filling in forms/going to unproductive meetings. I am signed off for a month now. It is needed, but I'm going to have to figure out a strategy for head as well as body!

For your head - little slow walks ? Music ?

Hope theres some easier times soon

Sorry to hear they arent listening to consultant / baring in mind consultant report re your childs ehcp :(

Childcare was my profession and yeah - thats bad of them

Been listening to upbeat music tonight.

Did a 10 min walk today, just to the corner shop to get my sister a card for her birthday. Baby steps. 10 mins is about my limit. Got to drop prescriptions off tomorrow so that's a little challenge. Also trying to do course work (am retraining) and I feel its unravelled - due in mid-Dec and so I should be cracking on - I know I will exceed deadline now, but work is snails pace.

Sleep now, and tomorrow's another day.

How are you doing this week?

I’m thinking about doing this, was it good?

I'm not sure if what I have is CFS (I've never pursued a diagnosis) but I do get the symptoms and haven't been able to work more than a few hours per week for the past few years. I used to work full time but was in an RTA and was signed off with a head injury. I felt so fatigued, anxious and disorientated that despite trying my best, I never managed to go back to work full time. I then went through a load of awful trauma and a bereavement and was diagnosed with PTSD. Both my mental health and the debilitating fatigue has made life so difficult, and on top of that I've developed a couple of physical health conditions that also cause fatigue.

I've spent the years off studying for a degree. I desperately, desperately want to work full time again but sometimes I even struggle with part time hours. I get in such a panic about it. There's a graduate programme (with a large employer known for being supportive and flexible) that I really want to go for but I'm so scared of taking the plunge because it will mean coming off benefits (aside from PIP) and what if I crash and burn? I wish there was some sort of benefits safety net. I'm currently on legacy benefits which I won't get back if I have to put in a new claim, so if I realise I can't do it I would end up a lot worse off. But if I don't try I'll never know

Could you talk to company/graduate scheme and explain situation? Ask if you are able to do an unpaid secondment or volunteer. Then you can keep financial security (hard won - I know for a fact), and also see how you do working x hours a day/week?

Then after a year you may be in a better position to decide about taking the plunge.

I feel for you - the govt don't help people with disabilities enough to support them in finding and keeping work without the threat of loss of benefits. Not helpful in the slightest.