Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

And I looked on my bank account and this months pay was only £733. Will be even worse next month as I am now on SSP. The only reason my balance is reasonably good is that we have no fucking life and so aren't spending money on anything but food and bills.

Thank goodness DH has some weekend work lined up. He has been offered some during the week too but he can't really say yes ATM because I am not even vaguely capable of doing school runs myself.

Arb, i think all our problem are relative and certainly not petty.

Fuzz tell them you are too unwell to collect it. and they will get it as soon a u do!!!

Smiling how the flip do u do 32 hour in 3 day!!!

i do 30 and i have tried every combination..... im actually better on a morning, so i hould be doing 5 morning........ im grasping at every way possible to do 4 not 5 days!!

Hi Grockle if your lurking xxxxxxxx

Its actually 33 hours fat fingers on tablet

I work 7.30-6.30 so 11 hours a day

Its hard but I do have time during the day when the children are at school to rest a little, school holidays are really hard but at least I have 4 whole days to recover

I guess so. But the issue of whether or not to buy a first class train ticket (which, now I've checked, are scarily expensive; the website promises from £18.50 but they're really c.£50 each way!) is really not an issue compared to budgeting on SSP.

I am utterly wiped out from work. H looked at me and asked if I was alright. I must look horrific. He's gone to someone's leaving do from work, so I've ordered takeaway and I'm letting DS1 entertain DS2 with sonic the hedgehog on the Xbox. Truly magnificent parenting. The kids are happy though.

I got about 1/2 a seat on the train to work. I was sharing a table with a woman and 2 kids but she decided to sit with her daughter on the seat next to me and I gradually ended up with very little room. I should have been more assertive nd said something but I'm crap at tha sort of thing. So I sat all squashed up and suffered.

Thankfully the doctor sorted my sick note - til 7th April - and I took it in today.

Also had our family outreach worker visit today and she helped us arrange an appt at the town hall to talk through benefits and the changes resulting from changing hours etc. I am definitely going to start the ball rolling for DLA now as I have more evidence.

I'm amazed you can do 11 hour days, smiling. I can see the extra recovery time would be worth it. I think I'd like to work 3 days too, but I'm not sure it's feasible.

Nowt wrong with sonic the hedgehog, arb! Although personally I prefer Mario

I had a similar situation on the bus home, I was hanging off the chair, thankfully it's only a 20 minute journey. I was holding bags though so now my arm feels all shaky and weird. Isn't it annoying how many tiny things suddenly become difficult!

Sorry about the first class ticket being so much pricier. It would be so worth it if it was more affordable. So manipulative the way adverts sneakily get round things like that isn't it

I suspect you can bag yourself the solitary £18.50 ticket if you swoop the instant they release tickets for that date (and want to travel on the deeply unpopular 6.30am train). I suspect first class isn't as much better than standard class as I imagine it is anyway. I'd probably be horribly disappointed if I paid £50 to sit in it.

I tried different combinations....

5 mornings - was exhausted by wednesday morning and slept every afternoon.

5 afternoons - couldnt get up till 11am and was in bed as soon as I got home.

2 long days and 2 short - was so ill I ended up off sick

3 long seems to suit but that doesnt mean its not bloody hard and some weeks I struggle but I cant afford to drop any more hours ive already lost 44 hours a month

My longest day is 8.30-7, thank goodness I won't have to do that now. I think 3 long days in a row would not be good for me, because I would crash over my days off and it would be sooo hard going back each Monday. But then I also dislike the idea of going in every day, even if it is a short shift it just seems so endless. Can't win really can we? Any combination of hours has a downside. I hope my 16hrs will be manageable.

I found out today that due to company policy, we can't actually decide on my new hours until I am back from sick leave. So that means I have to go back for a potentially full day (and if it is a Monday, that means until 7pm) and only then can we decide my new hours. My manager is going to see if she can get round it though I think.

Also, I found out that she has got the go ahead for me to start at 9.30 if I do mornings, rather than 8.30. That will make a massive difference because of the hangover effect I get from the amitryptiline.

And as a totally random aside I have just signed 5yo DD up to a yoga club :o

Oh your DD will probably love yoga. DS2 loves doing yoga at nursery.

My longest day was (if we include time spent on the bloody train): 7.30am (although I's leave the house pre-7am) to 11.30pm (and get home c. midnight). If we don't include time spent on the train, it was 9am-8.30pm, and pretty much constant meetings or teaching the entire time. I am not doing that again. And I'd have to be back on the train again at 7.30 the next morning. Looking back, it's no wonder I utterly crashed at the end of that semester.

Bloody hell. That is extreme. Indeed, no wonder you crashed :(

The whole trying to deal with work thing is so bloody hard isn't it. I contacted my union today then OH. The Dr at OH said she will write again emphasising that she gave the advice for a reason. So we shall see how they respond.

Fuzz how would 1 full dau (not till 730 pm) and 2 half days be... it wouldnt be every day and if you did a full day you would only have to get through half a day the rest of the week

I am in awe of you all managing to work any hours. I used to work ft and commute to London, so was doing a similar 12/13 hours door to door. Combined with the stress of the job, I pretty much collapsed mentally and physically two years ago, and haven't been able to return at all. Every time I think I might be able to contemplate a phased return, I have another flare up and go back to square one.

My levels of activity are pitifully low, although I prioritise aqua classes (very modified!) twice a week, and a very gentle Pilates class. I also walk my dogs half an hour twice a day.

I am very lucky to still be on sick pay with income insurance, but life as I knew it has certainly gone for good.

Happy to see the sun out today, always makes me feel a bit brighter.

Today I feel absolutely awful. And some of my students (a group who did something similar to another lecturer last year) are being extremely difficult and trying to get me into trouble. I honestly don't know why I bother trying to work.

Arbitrary nearly a long weekend. Not long to go, mate. Document, document, document the work stuff. Horrible.

Wish everyone else could feel better too. No advice about the working hours - my freelance work is only about three hours a day and I still often have to have a day or two off to rest. I'm sort of functioning okay at the moment but only because I don't do too much.

Grockle Hope all well and you come back to say hello.

Luckily the student is stupid enough to have sent me an email about it. I honestly don't care about these students any more. I've decided that I'm going to take the only day I'd need to see them ever again off sick. I am sick and I'm not putting myself out for spiteful and ungrateful people.

Im really starting to worry about grockle has anyone heard from her?

Sorry.

I'm here & I'm ok, just not coping well with anything.

Please don't worry.

Hi Grockle, I saw you around on some other threads so I knew you were still here. Am not surprised you are not coping, you are in a really, really hard situation even if you were in good health, let alone this awful condition.

Big big hugs.

Hi grockle thank you for letting us know your ok, I've pm'ed you please use the number I'm laid up at home for 2 weeks so would appreciate someone to chat to if your feeling up to it x

Arbitrary that is horrible. What do you teach? Good you only need to see them one more time.

I've been called to a meeting with HR and management after the holidays. Feel quite nervous about this.

ice pole hopefully this time they will say that they have decided to actually listen to occ health's recommendations!

Hi. I saw this come up on my active feeds and was so pleased! I have ME for 12 years and am a single parent. I'm all out of spoons and seeing a collection of people who understand is a relief.

Knowing what you need to do and being able to do them are totally different things!

Im now going to read back. I just wanted to say hi!