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CFS/ME/Fibro/spoony support thread 2

447 replies

LivingInMidnight · 19/04/2016 21:57

Old thread here

OP posts:
AliceInUnderpants · 22/04/2016 18:46

I'm not sure exactly what a phased return entails as I haven't worked for 8 years, but please don't worry Dream - go speak to your GP.

DreamCloud99 · 22/04/2016 18:56

My GP is very supportive and I know she will give me a note .

The problem is , I've gone back and then gone home sick again . My boss has booked a disciplinary hearing for next week .

Badders123 · 22/04/2016 19:07

I have read the thread but I'm afraid it's not gone in Confused sorry
Ugh
Am knackered
Had to have some dental work today so that hurt - allegedly he numbs my gum first but it doesn't seem to work
Hip/knee and leg still hurting after physio
Not really slept since dh left on weds
Got to take dc to opticians tomorrow morning then a party tomorrow night
Am hoping next week is a bit less busy!

LivingInMidnight · 22/04/2016 19:09

No you should be ok because on phased return (in my understanding) the hours that you aren't working but are contracted for count as sick leave anyway. So a new GP note that shows you can work 3 hours at the moment covers you.

This isn't your fault, you've tried your best but you were obviously started at a higher number of hours than you could do. Your GP will know it's trial and error.

Your manager sounds like an idiot tbh. Are you a civil servant? Are you in a union?

OP posts:
LivingInMidnight · 22/04/2016 19:10

Sorry that was for dream but I got too outraged to remember to put that Blush

OP posts:
DreamCloud99 · 22/04/2016 19:14

No Union . I'm in retail.

I hope you're right about it being ok Smile I'll look in to it - thank you .

murmuration · 22/04/2016 19:20

Oh, dream - it sounds like they expected too much. Do you have an OH department? Can you talk to them or get your GP to write a note to them or something? Did they expect you to work a full day first day back? What sort of accommodations have they offerred? I'm wondering if you might be able to use the disciplinary, if it has to happen, as an opportunity to present a plan of what you could reasonably do?

Just reloaded - you're in retail? Does this mean you are standing or walking about for most of that time? Three hours is a marathon! Have you got some kind of plan with rest periods, etc.? Have you seen the CFS Ability Scale? I'm somewhere between 50-60. There is no way I could do a full time job that required standing for most of the time.

LivingInMidnight · 22/04/2016 19:29

There is no way I could do it either mur. No way at all.

I agree about occupational health, that's definitely the way forward I think. If anything, today has shown that you need more support from your employer, not disciplinary action. They have a duty of care that they're not fulfilling. You weren't leaving early because you fancied it, you were unable to carry on!

It's managers like this that make it so hard to work with chronic illness. Angry

OP posts:
DreamCloud99 · 22/04/2016 19:42

They wanted me to do 5 hours the first day , then 7 hours the next two days , then back to my normal 10 hour shifts over 3 days .

I did say it would be too much but they said to see how it goes . Well obviously it didn't go very well Hmm

Yes , it's all standing . I was having to lean on the counters to support myself after an hour .

DreamCloud99 · 22/04/2016 19:43

I've seen the CFS scale before and I'm at about 60-70 percent . I get daily symptoms and I'm absolutely knackered at least some of each day .

My boss said shes tired too after being up with her baby all night Hmm

Blueberry234 · 22/04/2016 19:45

Please could I ask what spoony is? As if Spondy then I may have found somewhere to vent

DreamCloud99 · 22/04/2016 19:45

Sorry , that scale is different to the one I've seen . I'll have a read through it now Smile

LivingInMidnight · 22/04/2016 19:55

blueberry it relates to spoon theory, but feel free to vent, we're a mixed bag anyway!

Dream that's not how phased return should work! Your GP sets the hours you can do and how you'll increase your hours (at least that's how it's worked for people I work with). A lot of the time it can take months to get back up to your full hours. I'm impressed you managed 3 hours! The "I'm tired too" people... Ugh.

OP posts:
MushroomMama · 22/04/2016 20:01

Can I join?

Diagnosed with fibro on Monday. The lack of sleep,sensory overload and pain are slowly driving me insane.

Currently having a fight with the consultant to send the letter to the gp so said gp can prescribe me medication.

I have OA too

FlowersCakeBrew for everyone

AliceInUnderpants · 22/04/2016 20:13

Off that list I'd say I'm about 40, 30-40, which is really really depressing Sad

Hi Mushroom. Does your consultant know your GP is needing the letter to prescribe medication?

MushroomMama · 22/04/2016 20:21

Yup they've been calling and emailing all day Sad

The consultant said they'd email the gp when I saw him

The gps been great and got me some temp stuff I'm picking up tomorrow but I feel deflated and still shell shocked about diagnosis so it's not helping my mood I have to say

DreamCloud99 · 22/04/2016 20:31

I'm about a 30-40 on that scale Shock

Sorry for your fibro diagnosis Flowers

ipswichwitch · 22/04/2016 20:40

Hello, mind if I pull up a chair? (Not that I could stand anyway!)
I have been diagnosed with fibro 6mo ago, and also have RA. I had been motoring along ok since the last big flare 2 years ago but now I'm sliding back downhill again. I'm in constant pain everywhere, it hurts when people touch me (not great considering I have 2 small DC) and I've started getting very dizzy and almost blacked out twice last night. I'm struggling in a big way with dealing with this pain, and have zero energy left. I'm struggling at work because of the sleep deprivation and brain fog and terrified I'll do something wrong. I'm not sure how I should deal with this - have a gp appt next week but do t know what they'll suggest. Sorry for the moan, I just need to whinge a bit to people who understand how crap it all is, and that I'm not just "being lazy"Sad

LivingInMidnight · 22/04/2016 20:54

mushroom Flowers it can be a nightmare getting different Drs to talk to each other! Hope the temp stuff works & you get a bit of sleep.

ipswich Flowers I know exactly what you mean about work. This week I've been that foggy that I've redone one piece of work over & over again because I kept thinking I was doing it wrong! Worst thing is I've still not finished it Blush. Hope GP is helpful!

OP posts:
murmuration · 22/04/2016 21:51

Wow, dream, that's way too fast! And 'let's see how it goes' followed by disciplinary - no way, that's not right!

Are these 1-day, 2-day and 3-day weeks, so you'd be back up in three weeks? My thought would be that was too fast, but you should talk to your GP and get some advice. I would think doing the lowest amount (maybe 2.5 hours on two days?) for a couple weeks to see how you're handling it before increasing. Although I'm totally not in employment or health, so do get advice.

Do you do your 3 days in a row? 10hrs is a long shift, although depending on how your illness works, it could be better to concentrate it then spread it out - or not. My husband has CFS too, and he's about 30-40 on the scale like you (summed together, me and him almost make one normal person! :) ). He deals better with small bursts of work and frequent rests. So he does a few hours, sleeps for a few hours, works a few more hours, etc. Although all his work is deskwork! He has hobbies where he sometimes goes off and stands for 10 hours a day for 1-2 days, and he totally crashes afterwards; it usually takes him a week to recover. However, for me, I find I sort of 'asymptote' - there's a point where I can tell I've done so much that doing a bit more doesn't make a big difference. So if I'm standing and cooking dinner I will do as much other cleaning, etc. stuff that I can do because the difference between standing and doing that versus just standing and cooking is much less than the difference between lying down at another time because I've done it all versus doing that extra stuff that needs to be done - if that makes sense? But my pattern would make DH much worse, as he has a much stronger response to more effort than me, so he'd do better to do two periods of lesser effort whereas I'd do better with one of more. So you need to figure out how you work best.

moose - oh no, how is your son doing now? Hope your migraine is getting better.

Hi, mushroom - they will get it sorted, it sounds adminstrative at this point. I totally understand the 'reeling from the diagnosis' thing. I'm not quite there (as no one has diagnosed me yet!) but as I'm getting closer to finding out what the actual problem is, I'm starting to feel a hint of it. It's like both a "yeah, knew this all along, why did it take so long for them to figure it out?" and "oh, crap, no, that can't be true, can it?" Because a teeny, tiny part of you was holidng out for an answer was a simple easily fixable, not chronic issue and that hope has now been taken away.

And hi, ipswich - yeah, we understand. I found myself saying today to someone today at work, "You see me standing here, but at home I'm lying down the whole time", trying to make the fact that I can't actually stand and cook a dinner make sense. And, oh, I'm missed so many tiny things at work that I worry I'm going to miss something big. Or I have, and just don't know what it is yet -- so far every tiny thing has been fixable but there is also some stuff I should have been doing and simply haven't, and I worry a bit what the fall out of that will be. Could be nothing, could be a disaster...

MushroomMama · 23/04/2016 08:33

Thanks everyone Flowers

And totally murmur just hoped it was fixable like my OA and to be told it's not and I've got to attend some course to accept my diagnosis was a bit tough!

My mother said at least you're not dying Hmm

living thank you its tough having to argue when you're sleep deprived

ipswich Flowers I know about the pain on being touched thinking of you

sweetkitty · 23/04/2016 17:54

Sorry for the me me me post but I'm in tears and at my wits end, I'm in Blackpool been up since 6.20am been to the Pleasure Beach all day, have had a rizatriptan and 4 cocodamol and my head is still splitting it's a migraine which isn't full blown because of the drugs, everything hurts couldn't go on the rollercoasters like I used to with the DC.

All I want to do every day is sleep 😰

Sorry

ipswichwitch · 23/04/2016 19:44

Thanks all Flowers. It probably sounds horrible, because I wouldn't wish this on anyone, but I'm glad it's not just me (sorry!)

That's exactly it murmuration. People see me at work doing stuff, but they don't see me crashing out at home, or not being able to go out all day at weekends - we do something in the morning, come home for a bit, then go out in the afternoon. I physically cannot cope with being out and about all day.

Mushroom I hope you get your meds sorted soon. It's a right pita when you're waiting on others to pull their finger out. I've had prescription issues before - the chemist keep my repeat and get it all ordered then text me when it's ready. This would be great if the gp could get their act together and actually sign the bloody thing, or at least sign for the right meds Hmm

Living, I keep writing notes to try to remember what I need to get done then forget where I left the note! Now I write on the back of my hand so at least I can't lose that!!

Oh sweetkitty, I really feel for you. It sucks the enjoyment out of things feeling like this. Hope you're feeling in a better way soon Flowers

murmuration · 23/04/2016 21:45

Flowers sweet

I'm exhausted. Friends to visit this weekend. Love seeing them but do exhausted and they've only been here since mid-afternoon. Here sll day tomorrow and then I have a full week of work. This breaks my 'rules' but when friends come from far away I feel I have to see them - and I want to too. I have few enough friends already as I don't have energy to see people.

murmuration · 23/04/2016 21:46

Sorry typos. Phone and tired.

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