M.E. CFS Support Thread

ComeTheFckOnBridget · 2023-02-17T15:50:00+00:00

Hi I'm newly diagnosed and noticed a few other people posting about ME CFS recently, wondered if people were up for a general support thread for those of us with the condition? I'd love to connect with other sufferers (requests to join ME forums never get validated!). I'm having a bad PEM day today, weak and very shaky etc so pretty much staying in bed and hoping I'll feel a bit better this evening. It's just all so tricky - trying not to give into the tearfulness I feel too. Does anyone get teary when they're having a bad day?

Original poster

ComeTheFckOnBridget · 21/02/2023 19:26

Just giving this a little bump.

I've spent most of the last week in bed or doing very little. Trying to introduce doing a little something each day but am pathetically wiped out afterwards. Trying to summon some strength to go and make an easy supper and dry my hair.

Have a busy day tomorrow so it could all go completely tits up afterwards. I've things scheduled towards the end of the week that I can cancel if I need to.

Just so shit letting people down.

OP posts:

SnuggleBuggleBoo · 21/02/2023 19:33

Awww, I'm sorry OP. It stinks doesn't it? I was diagnosed at 20, though to be honest had issues for a long time before that with a lot of time off school etc. I'm 34 now and I don't believe I'll ever be 'normal' but I am massively massively better than I was at my worst. I work full time Mon-Fri and sometimes go out for a day out at the weekend too.

What's triggered it for you, do you know?

Original poster

ComeTheFckOnBridget · 21/02/2023 23:42

Hey! It's great to hear you're doing so well, but I'm sorry you've had it so long :(

Amazing that you can work full time - I've not been able to work for ages.

Not sure what triggered it, stress I think. I had severe depression after a very stressful time and then found my body was no longer playing ball.

What has helped you most do you mind me asking?

I'm trying to learn the best way to pace myself, so that I can still live a life but it's...unpredictable!

OP posts:

Original poster

ComeTheFckOnBridget · 25/02/2023 12:54

In the hope that other sufferers - of relatives of sufferers - come across this...Anyone with ME found a way to successfully lose weight?

Don't mind if it's slow - and I think weight can be an issue for some patients because of inability to exercise - but would like to hear from people who've made it work :)

OP posts:

worldwidetravel2017 · 19/08/2023 18:07

Hey
Recently diagnosed with cfs
Any others suffering ?

Original poster

ComeTheFckOnBridget · 19/08/2023 18:21

Yes. Are u very ill?

OP posts:

Bookchildtable · 19/08/2023 18:41

I've had cf for 8 years (following sepsis). I lost my job and was retired on ill health grounds in my 30s. I can pace myself in the day, but I do very minimal. Get dressed then rest, if I'm making food I do it in bits, clean in bits or ask dc to do it. I had to stop driving this year that was hard but know it was the right thing. I rarely leave the house and my biggest guilt is not giving my dc the childhood I wanted to give them. My brain isn't stimulated I went from a professional job to being unable to read a chapter in a book without forgetting what's happened at the beginning.

I think overtime I've had acceptance that this is my life, unfortunately most friends and family have walked away because I can't do the things I used to do.

Re weight I was told by cf clinic to eat little and often (5 meals a day) but I found this too much. I've been eating 2 meals a day and no snacking, I've not weighed myself but dropped a dress size in two months and feeling my new trousers are a little looser.

Things that help are calendar reminders or alarms for everything, moved everything around in the kitchen so things were close, batch cook, slow cook lots, have a routine, meal plan that's same every two weeks so I don't have to think, online grocery shop, prescription delivery, everything in its place always, accept not everything that needs to be done can be done, lower my expectations of self. My dc are great they can cook, clean etc so will take over if I can't do something.

Psm92 · 13/10/2023 11:53

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Littlepinkstarsbyradish · 14/10/2023 05:07

i had glandular fever 2 years ago, and have found it so hard recovering with massive fatigue (40 yrs old)
docs signed me off after i spent almost 8 months not knowing what was wrong with me and trying to work fulltime, undoubtedly making myself worse
Now i have to be really strict with myself and not take on extra projects i want to do, say no to social events, etc
I hate it, i was so busy and active before and ive lost friends because im so flaky. Ive always been the person at work that went the extra mile and now i think my new colleagues think im a shirker and lazy, and i cant keep saying "but when i was well i did this...."
I just feel like my life has ended and im having to create a newer, crappier one :(

worldwidetravel2017 · 14/10/2023 12:08

Littlepinkstarsbyradish · 14/10/2023 05:07

i had glandular fever 2 years ago, and have found it so hard recovering with massive fatigue (40 yrs old)
docs signed me off after i spent almost 8 months not knowing what was wrong with me and trying to work fulltime, undoubtedly making myself worse
Now i have to be really strict with myself and not take on extra projects i want to do, say no to social events, etc
I hate it, i was so busy and active before and ive lost friends because im so flaky. Ive always been the person at work that went the extra mile and now i think my new colleagues think im a shirker and lazy, and i cant keep saying "but when i was well i did this...."
I just feel like my life has ended and im having to create a newer, crappier one :(

I hear you
Have you had counselling?
Have you had help from fatigue services?

worldwidetravel2017 · 14/10/2023 12:10

Bookchildtable · 19/08/2023 18:41

I've had cf for 8 years (following sepsis). I lost my job and was retired on ill health grounds in my 30s. I can pace myself in the day, but I do very minimal. Get dressed then rest, if I'm making food I do it in bits, clean in bits or ask dc to do it. I had to stop driving this year that was hard but know it was the right thing. I rarely leave the house and my biggest guilt is not giving my dc the childhood I wanted to give them. My brain isn't stimulated I went from a professional job to being unable to read a chapter in a book without forgetting what's happened at the beginning.

I think overtime I've had acceptance that this is my life, unfortunately most friends and family have walked away because I can't do the things I used to do.

Re weight I was told by cf clinic to eat little and often (5 meals a day) but I found this too much. I've been eating 2 meals a day and no snacking, I've not weighed myself but dropped a dress size in two months and feeling my new trousers are a little looser.

Things that help are calendar reminders or alarms for everything, moved everything around in the kitchen so things were close, batch cook, slow cook lots, have a routine, meal plan that's same every two weeks so I don't have to think, online grocery shop, prescription delivery, everything in its place always, accept not everything that needs to be done can be done, lower my expectations of self. My dc are great they can cook, clean etc so will take over if I can't do something.

Totally hear you re doing stuff in bits and calendar reminders

Unfortunately i haven't dropped weight - im a foodie
And move less due to cfs / fatigue/ my legs / nausea