Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

Arbitrary, DH and I often give in to bargain DVDs/games etc, so now we have a personal budget for it instead! It means we can spend it (£20pcm each) however we want without needing to justify it to each other, although sometimes we pool it if it's something we both want, and save it if there's something big we want. Works really well for us - we even record it all in a little cash book

In a way maybe it was good you passed out at work, however embarrassing, as at least it shows them how serious it is?

Maybe, fuzz. I don't know. I'm so tired of all this. I can't really remember what life was like when I was well...I want to be able to get up & take DS somewhere without worrying or hurting. I like your DVD budget idea. And the cash book

Well I don't mind him buying a videogame at all. I wouldn't have minded if it had been a full price one either. We can afford for him to buy one whenever he likes.

The thing that annoyed me was that he's been whinging all month about money to the extent that last weekend he followed me round the supermarket complaining about whatever I put in the trolley and he got really annoyed when I insisted on buying some smoothie despite his protestations. And this week he's been going on about how I need to make the food I bought last week stretch as far as possible because we need to save money. Yet, it's ok for him to just buy a videogame because he wants it (on top of the new shoes, new shirt and gym membership he's got for himself this month, and the haircut he's decided he needs - and the significant sum we paid out to tradesmen for work done in January too).

We either have money or we don't (and we do bloody have money). I am not going to put unnecessary energy into careful meal planning and food budgeting when DH seems to think saving money only applies to me.

Grockle, I agree with Fuzz. When you put everything into performing well at work, nobody thinks "Look how courageous she is!" Instead, they think you're taking the piss with your reasonable adjustments. I fell foul of this; the consequences were very bad indeed for my health (and income). Even if you think in negative terms like 'playing the disability card' and 'milking it' - do it! Pushing yourself beyond your safe limits is not being kind to yourself or at all clever.

Arbitrary - don't let him get away with all this inequality! He's manipulating the finances (or trying to, heh.) Might it be time for a rethink on how you split the money?

Arbitrary, that would bother me a lot. Like you said, either you have money or you don't but the rules need to be the same for each of you. Food is a fairly basic necessity so if there's scrimping to be done, I would have thought that luxuries like games etc would be the first to be hit. Maybe you should make him live on beans and toast for a week

Garlic, you are right... and I need to prioritise DS & my health over my job. I just hate having so much time off- they are quick to complain about that and make me jump through hoops with HR but rarely notice that I am there when I am really not well enough. People always ask how I am, saying I don't look well (thanks!) & I always say that I'm ok or fine. They don't want to hear a list of ailments and problems, do they?

I have a tiny confession, Grockle

I am not a crier or a fainter. I've done both, but have to be practically at death's door. Stoicism can be inconvenient.

One time, I went into work with an opportunistic mouth infection. Was painful; face swollen and grey. Two people said not looking well. Boss heard, gave hard stare, ignored. Already on adjustments AND warnings, couldn't send self home without risking job. Self-referral to company doc disallowed as had regular checkups. I went into the ladies' and lay on the floor until someone found me!!

Well ... they make the rules, you have to play them ...

Well, needs must, garlic. It's terrible that it comes to that... no-one should have to fake something. I often feel that if I faked had an obvious illness, it would be so much easier.

How do you decide when enough is enough & you really shouldn't/ can't go to work?

My legs hurt SO much & I really can't face a day with lots of people, lots of walking around, lots of questions about how I am, why I am at work, what happened etc. I don't want a day where I have to be totally aware & on the ball & where I shuffle around like the miserable cow that I am. But I can't decide if I am just being lame or if I actually need time off. If I can go every day this week, that'll be a whole half-term without any sick days.

Oh, Grockle :(

Get up tomorrow morning and do a spoon inventory while you're in the bathroom. If you can't work you can't work.

Sometimes we have to let life go where it takes us ... and that can be very far from what we imagined for ourselves. My therapy with CFS team was all about adjustment; it was nasty medicine but (I didn't want to admit) necessary. Where do you & H stand on provisional plans for if it all gets worse? I'm sorry to be asking this. All my financial planning rested on the assumption I'd get better in a year, two years tops - my doctors had led me to believe it In the long run, that assumption cost me literally everything.

Looking at the immediate term, have you been in touch with Shopmobility about renting an electric wheelchair? Costs a fortune round here, but I know in some regions they're readily available. Alongside the energy that could save you, there's the political advantage that you'll "look disabled" at work.

Spoon inventory in the morning is a good plan. I really have so little desire to go to work. It's a hard job at the best of times & when I'm physically & mentally not great, it makes it hard. I have to be very quick on my feet and really aware, so brain fog and pain make it hard. An electric wheelchair would be amazing. I might look into that over half-term. I couldn't use it at work, but I can use my stick. I just don't want to because I'm too embarrassed

I'm so sorry you've lost so much. My finances are ok... not linked to DP at all so if we decide we're over then I'll be ok. As long as I continue to work. I have no idea what happens if that's no longer an option. I daren't think about it.

Grockle i think enough is enough, you have been struggling for such a long time, and with the DP situation, i really think you need to give your self a break the saying that i use at times like this is "stop the bus i want to get off".I really think you need to look after you now!!! and once you are well then you will feel so much better. Go see the GP tell them your crashing and you know from experience it takes a month at the least to recharge.. this gives you a month without worrying... You are such a lovely lady and life is just been shit.................. now is GROCKLE time!

I didn't go in I'm so tired of pretending to be ok when I feel like shit. I need to go in tomorrow, weds & Thurs & then I'm off for half term. I will reasses things then & if I'm really no better I will beg to be signed off for a bit. Life is hard, isn't it?

I stayed home partly because the house is such a tip & I haven't ironed my uniform...I thought I'd try & do it today but I'm already back in bed & feeling sleepy.

I hate feeling this guilty - like I'm skiving. HTF do I clean my house?

How're you doing, Belle?

Don't clean the house! Honestly, no one is going to die of a little bit of clutter and a few more days without hoovering, etc.

Sleep instead and take care of yourself.

My mum and stepdad have just left (they visited yesterday and stayed the night). I feel quite bad because I had to let them sleep on the couches in the living room. We'd been out at the Chinese New Year celebrations in town all day (while DH 'went to work' because he didn't want to spend time with my family). He came home at Ds2's bedtime and as soon as he was in bed announced that he was 'going to the pub with friends'. We have a blow up mattress and stuff for guests but I couldn't find it and didn't have the energy to go searching the garage for it, so I had to issue my mum and stepdad with blankets and leave them to it (while I went to bed).

I have no idea what to do with him. He seems to be getting ever more selfish (and he was never exactly selfless). Although, given the problems you're having with your DP, grockle, DH seems perfectly reasonable.

I'm going to the GP's this afternoon to see if they'll change my medication and get them to sign more off for at least another week. I'm not getting up til this afternoon though because I am very sore and very tired. Annoyingly, getting up might help with the soreness but I'll just be more exhausted (and that lowers may pain threshold). No win situation.

WELL DONE, GROCKLE! :)

Please listen to Belle & Arbitrary.

Arbitrary ... take your own advice

Landlord coming for house check this afternoon and am under eviction notice. Have turned heating up in hopes of cleaning the worst of the dirt without crippling self - wish me luck.

grockle don't worry about cleaning the house, just rest, curl up and watch daytime tv, nap when you need to and order takeaway for tea.

I'm freezing, I've got the heating turned up to 30 but I just can't warm up.

I've got an appointment on Friday with the endocrinologist hopefully he will have some answers for me but I won't hold my breathe

Yes. My life would be much better if I'd just live it as I'd advise others to live their own!

Today I am going to mess about online, sleep, possibly watch a film on sky anytime (if I can find anything worth watching), have a bath and visit the GP.

I have no intention of cleaning the house, however. Or anything else housework shaped. It's perfectly fine in here. Quite clean and tidy actually. I could even have people round (although id have to get dressed for that). I'd just like DH to pull his head out of his arse and look around himself occasionally. Last night he seemed annoyed at me that I didn't ask him if I could come to the pub with him. Because going out, sitting in a pub and talking to a bunch of people I don't know sounds like such fun after a day (well afternoon really) out with the kids.

Do you knowhowmany spoonsyou have???i used tohave 12 but after mylast crash imdown to 11...
Gettin up and getting DD to breakfast club 1 spoon.
Getting towork and walking to office 1 spoon
Work4 spoons
coming home and getting DD 2 spoons
Making tea 1 spoon
Getting ready for next day (packups, homework soreting DD) 1 point

1 pt left.....

i use that to do shopping ( which i actually enjoy)
Driving DD to manchester to meet her dad 2 points but its usually fri night so i come home and do diddly squat
Taking DD to guides etc
Tidying round ( bare minumum ie taking washing up stairs on way up anyway etc)

Grockle dont waste any spoons today on cleaning, if everything needs to be tidy like me then short sharp shocks on loo breaks etc

Arbituary, your DH sounds alot like my eDH, i could cope with his selfish ways when i wasnt ill, but as i got progressivley worse i couldnt, in the end i left ( i dont advice that) and as much as been a single parent with ME was tough i knew exactly what i had to do without ever been let down

I now have an amazing DP who gets it, and helps, and if i need to rest lets me get on with it, no expectations, no stress, no pressure...

Work all your spoons out it really helps!

i've been asleep again. I wish I felt better when I woke up though - I just feel groggy & yuck.

Arbitrary - do you have an electric blanket? I have one that is on pretty much every day & it really helps with the achey pains. I'd love a heated throw but they are about £100 so not an option. And yes, take your own advice

Sorry you've got so much to do garlic - I hated renting because of constantly having house checks and leases being ended just as soon as we'd got settled. I'm not good with uncertainty.

I have to get up to iron or neither of us will have uniform for work/ school. I hate ironing - I do it sitting down but it makes my arm hurt so much.

I don't think I have any spoons today. Maybe a couple. I think I'll get up, do the ironing with TV on downstairs then have a hot bath. Then back to bed. I'm feeling so unsettled atm and a future as a lone parent with fibro & lupus seems very daunting & not very enticing. If I wasn't depressed before, I think it's fair to say that I am now.

Thank you all for being so lovely and supportive. I'm so grateful to you...it makes such a difference knowing that someone, somewhere will understand.

Getting up and ready for work 1spoon
Driving to work 1spoon
Getting kids ready and to school 1 spoon
Putting away Tesco delivery 1 spoon
Making and eating lunch 1 spoon
Helping at school 2 spoons
Getting kids home and doing homework etc 1 spoon
Cooking tea 1 spoon
Driving home 1 spoon
Saying hello to dp and dog, eating tea and climbing the stairs to bed 1 spoon

Counting out my spoons gives me 11 too, that's what I can manage on, I don't have a 12th one in reserve anymore and I can't carry spoons over to the next day like I used to be able to, even after a day off I'm
Completely exhausted.

The scary thing is I wouldn't consider myself to be having a relapse right now, I'm actually having a good for me few weeks

I think I'm spectacularly bad at counting spoons. I'm doing ok and suddenly I seem to have none left.

How many I need depends on what I'm doing. If I work at home I need:
1 spoon for getting up and ready
Up to 6 spoons for doing actual work (my brain seems to just shut down often and I become incapable of coherent thought after a while though or I just end up falling asleep)
2 spoons for the exercise I have to do (3 if it involves getting to an exercise class)
1 or 2 spoons for making dinner (which I often can't eat anyway at the moment as I feel a bit sick)
1 spoon for getting tidied up after dinner
1 spoon for getting the kids to bed
1 spoon for helping with homework
An extra spoon if I have to pick DS1 up from scouts (usually because DH acts like it would be unreasonable to let my nearly 13 year old do the c.10 minute walk home at 8.30 through a very safe and well light part of the city)
1 or 2 spoons for interacting with DH/watching TV, etc.
1 spoon for getting ready for bed

If I have to go into work, the number of spoons required massively increases. My work day is much longer (I have to teach in the evenings, so sometimes I don't finish until 8.30), I have to teach, squeeze in as many meetings as possible with people and generally interact with people all day, and I have a 2 hours each way commute (plus a bit of waiting around and walking between places) which requires many spoons, especially if the weather is bad or the trains are late. I usually have to borrow these spoons from the next few days. It was worse when I had to go into work for two consecutive days every week, but now I would only have to go in once every week (but there are always other meetings/events/etc that I have to go to).

This is mostly why I'm off work at the moment. I could probably manage to do some work if I never had to go in to work (or deal with students, who require so much of my energy) but not going in is not an option. We can't move either because the kids are settled here (we've had to move around a lot and I couldn't force yet another school move on DS1, particularly not one that involved changing school system again), DH's job is here (although he's always complaining because he works at a new university and periodically talks about applying for jobs at the other end of the country) and property prices in the city where I work are ludicrous. Then again, if we did move, I'd be expected to go not work all the time and interact with people/go to meetings/all the other bits of work that really exhaust me.

I am so lucky with work, my bosses are very understanding and as long as the children are happy, dropped off and picked up from school on time and fed they generally let me take things at my own pace, some days I manage to tidy up, make beds etc other days I drop the children off and sleep.

In some ways the timing of me getting ill was perfect as my youngest charge started school so I have been able to still work whereas if he was still home all day I couldn't have coped. Next week is the first time I have had to work a half term since becoming ill and I'm dreading it, the last few I've only had to work mornings as grandma has covered the afternoon's but she's on holiday.

I didn't really have any notice of getting ill I was a bit tired for a few months then suddenly I collapsed and couldn't get out of bed, I had 8 weeks off not ideal for a nanny to be off for that long when I was
Ready to go back my bosses took al so that I could return gradually I did 1 morning the first week then 2 mornings the second then 1 and a half days the third week which we stayed at for about a month, we finally had to agree that Im nowhere near ready to do my normal 4 days so my boss arranged to work 3 days a week and a day working at home so I could stay at 3 days for the foreseeable future we have to reassess it in may so she can speak to her bosses again but she has never complained or made me feel like I'm not pulling my weight.

I work 7.30-6.30 and even half an hour more is too much.

Im not working today so spoons are spent slightly different, the 4 work spoons have been spent on batch cooking, shep pie etc. we usually have a ready meal once a week. crap i know but it just gives me a break from thinking about whats for tea.....well after the horse meat saga ( im so fussy with meat) i have cooked my own instead, plus im on use up, i cant believe i dont get paid for 2 weeks, im skint, so im eating the freezer down!!.. sorry back to the tale, i have walked the dog 2 spoon, one cos i needed milk two because the poor thing was fair asking for a walk...now i am sat on settee, hot water bottle and blanket, and neededing a rest...

work out your spoons properly, honest if i leart one thing from the CFS group it was that, and i know 11 is my limit...i use them all every day and i cant carry them over, this is why i am so crap at socialising anymore, and if its after 7pm pffftttt not a chance, cos i have used all them spoons on something else.......

so my survival guide to get me through the party weekend was sleep as long as possible that way then i wont use spoons.......... but i was stillk tucked up by 11pm both nights, (late i know but for a past party goer i was usually just getting going at 11pm.....

When I count spoons, I use mine for much smaller activities when I am really poorly:
getting out of bed = 1 spoon
walking/ crawling to the bathroom = 1 spoon
Climbing into the bat = 1 etc

When I am better I suppose each activity takes fewer spoons. So ironing today took 1, taking DS to the childminder was another.

And crying seems to use a lot... I don't know what's wrong with me - I just can't stop. Maybe my weight loss is through tears.

The snow looks really pretty.