Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

On a more positive note, some flowers just arrived from my MIL (who is lovely) to cheer me up.

Sorry about the awful day grockle (BTW I just noticed that your name is now in my autocorrect dictionary :o) WTF is your (D)P playing at?! Hope you get the results you need from the assessment. I need to get round to applying myself

Arbitrary I'm really sorry about the grant. How disappointing :(

I just got off the phone to a physio - I'm only in contact with her because of the research trial I'm in, but this scheduled phonecall was sort of a summing up and also an opportunity for me to discuss anything. Perfect timing really - we talked about reducing my hours. She reckons 24 may be too much and maybe something like 16 would be better - I need to really cut back and focus on getting better (mentally as well as physically - I have put the former off for far too long) and in that sense less is more! I need to stabilise my routine and that is impossible on FT hours. I felt guilty about not being able to do the GET trial properly but she was really nice about it and said it was just bad timing. I do want to try it once I'm on reduced hours. It's scary financially though.

Hi All, and welcome newbies... nice to have to have you here just a shame about the circumstance.... im sorry everyone seems to be having a shit time... id love to hear what they did Grockle at the assessment. Fuzz, my hours should now be back to 30, but i am doing everything in my power not to work 30...thankfully i am on 4 days a week (24 hours) for next few weeks as im using AL to take a day off.... as much as i am feel better than i was before xmas i am dreading 5 days, i really dont think i can do it.. still we will have to see, and if not then i need to discuss reducing my hours, which im not sure is possible, i only have 1 year left of my contract and i have so much to do in developing the service more!!!

oh well i best go do mums taxi duties, ill be back later

spoons to you all

x

oh ho im in trouble......wide awake and watching TV. Legs hurt, head hurts, infact it might be better to list what dosent hurt!!!

That's not good. Did you get any sleep? TV at 4am is generally awful.

It sounds like a great place to work Arbitrary. I'm so glad they are supportive.

Yay for being in Fuzz's autocorrect! My application for seems to have worked well - if it would help, I can let you know what I did or show you some of it or something?

Sorry you've been up all night Belle. I was too.

We've had no milk in the house for days so I went to the shop. It's a 5 min walk. I used both crutches but it hurt so much I had tears streaming down my face. I got the milk and dragged myself home & almost passed out when I fell through the front door. It took me 45 minutes.

I've gone from having a full time carer (I know I was lucky) to no help at all (& a broken heart...I know I'm being dramatic but it's really hit me hard that DP has left and I'm not coping at all well). I know some of you are lone parents... how on earth do you manage? I feel so sick. I don't know how to pick DS up from school.

(((Grockle))) that sounds so hard. I'm just wondering if you do grocery shopping online. I really couldn't manage without it. There's also a company called milk&more who are basically like a modern milkman but you don't subscribe to regular deliveries, you just order as and when for the next day. Worth a google - you need to make things as easy as possible on yourself.

Hope you got some sleep belle, I am lucky that my sleep is usually fairly consistent but now and again I have a night of insomnia. I find DVDs help, if it's something I know really well (futurama, Big Bang theory etc) I can just close my eyes and listen, which helps me relax.

I'm at Victoria about to get the tube round to st barts for the second group meeting. Only just finished my homework

I do grocery shoping online. I can't have milk&more... can't remember why but I trired to get that last year. I'll try again now - thank you for the suggestion. I think I just got used to having help & had never considered how I'd manage on my own.

Hope your meeting goes well.

We can't get milk and more either because they don't seem to cover our area (and we're not rural in the least; we live in a city). You might be able to find an independent milkman though. I think there's a 'find me a milkman' website of some sort where you can search by postcode. I might look into that myself. We've got no milk and DH was huffing and puffing about it this morning because I forgot to get some more yesterday.

We are trying to change our shopping routine to twice weekly deliveries rather than once a week (we have prepaid delivery so no worry about extra cost) - hopefully it will help us not run out of stuff towards the end of the week etc... needs planning though. I just really want to streamline my life as much as possible, because you can't waste energy on the little things like popping to the shops when you have so little in reserve!

BTW I seem to remember milk&more was a new thing when I first got it, so it may be that it was only in trial areas or something. I think you can freeze milk as well so maybe you could buy more and freeze a bit for emergencies? Or could you build the walk in to the school run so you don't have to go out twice? Once DS is older you can send him :o

Grockle I know what you mean about relying on somebody with housework etc, I do virtually nothing - I am lucky DH does it all although I feel a lot of guilt and shame (not his fault at all). Is there anyone who can step in even in a small way - doing a school run once a week, cooking you a few meals or something?

Has he said anything more about the status of your relationship now? And it's not being at all dramatic to be broken hearted, please don't minimise your feelings, they are perfectly valid. Of course it's painful! How is DS dealing with it?

Group was great, we talked about stabilising routines vs boom and bust cycles, and about sleep. Going straight home now but next week a few of us might have lunch after. We are repeating the activity recording thing so I must work harder on it this time - in particular recording specific activities at work, as it varies so much in intensity. It was embarrassing realising how little I do though. Work is so exhausting. I feel in limbo right now - I know I can stabilise my routine, and start building the other elements of life that I've lost, but I also know I don't have a hope in hell of doing that until I've got my hours sorted.

I'm really considering writing a diary, now that I'm becoming so much more aware of my thoughts and feelings and how my emotional and mental health impact so greatly on my CFS (and vice versa). My dad randomly bought me a gorgeous notebook ages ago (fabric cover with pop art on it), I think it's unruled pages so I can doodle on it too. I've been saving it for something special :)

I love the idea of a diary, Fuzz - the notebook sounds perfect. I'm so glad the group is helpful. I guess there's a lot of things we can do to streamline our lives but it's not always obvious when you're in the middle of it.

I used to have a prepaid delivery thing & I might do that again - could I really use it for a £10 shop or something if I ran out of milk, bread, cereal etc? That would help. Most of the time I can get to the cornershop but after my trek this morning, I know it's not always possib;e. If only DS would pay attention when crossing roads, I could send him. Won't be long I guess, then I'll complain about him being all grown up!

No idea re DP. I haven't told DS anything other than DP is poorly again so can't drive to be with us. I've literally begged DP to come over & help because I love him & miss him etc & he's ignored me, so I think that's a failry clear message. I don't know why I'm so distraught this time - ther previous occaions, I coped really well. Maybe it is being ill that is making me so needy.

Oh, £40 minimum shop. I'll see what milk&more can do - I called them & they said they'd sort out my account.

Yeah it's a bit annoying about the £40 minimum spend, basically though we usually spend around £80-90 a week though so we can just cut it in half.

If he's ignoring you you're better off without him really aren't you :( doesn't stop it hurting though of course. Go easy on yourself if you can xxx

Thanks. I know, you're right.

Grockle(hug) so sorry your dp has left and ofcourse you are grieving. Ds does not have a blue badge - in our area ASD only qualifies for a blue badge if child gets HRmob DLA - ds does not.
Arbitrary sorry about your funding disapointment. I had similar problems post doc and its such a let down after all the hard work. I could not do that now.

Tired! Tired! Tired!!!

Moi aussi! I just painfully dragged myself the 4ft from table to worktop, muttering "Why doesn't anybody get what this tired means?" Then I remembered you lot

Grockle, I've been following your posts and am very sorry for what you're going through. I just can't handle much in the way of a reply, sorry
Don't plead with him to come back.
Do give yourself treats.
Un-mumsnetty xxxxx

Solo & garlic it's rubbish, isn't it. Why isn't there a word for the level of tiredness we feel? 'Tired' & 'exhausted' are used so much by everyone that they have little meaning now

I do one big shop once a month, I keep longlife milk in the cupboard for when we run out of fresh milk, and try really hard not to go near a shop the rest of the month.

grockle I'm so sorry your dp has behaved so badly and that your hurt, I hope when your feeling a little less hurt and upset that you will realise the way he behaves is using to much of your energy and you will actually be stronger without him. Not that, that makes it any less painful so am throwing spoons at you for energy, hugs to make you feel better and to cheer you up x

oh god round two of close friends 40th birthday bashes!!! i did last till 1030 last night.........didnt get up till 1030am today and went back to bed at 2 to be woken up by my dad who came to visit....tomorrow will defo be a duvet day, and maybe monday as well, i hurt today, my head is too heavy for my body, (does that make sense)..

Hope you all have some spoons left to enjoy your sat evening...

Well done. 10.30 sounds like more than late enough to me. Hope tonight goes well and that you enjoy your duvet day tomorrow. I love a good duvet day with the kids.

I usually put some milk in the freezer. And bread. We still manage to run out. We live less than 5 minutes walk from a 24 hour asda, a 24 hour garage with convenience shop and some other small corner shops and DS1 is 12 (so he can be sent for things - as long as I have some cash). The cash is usually the stumbling block; I never have any cash in my purse.

We went to a local NT place with the kids this afternoon. I'm totally wiped out from it. I can absolutely understand the head feeling too heavy for your body thing. Mine feels the same way. And the back of it feels strangely numb/sometimes a bit pins and needley. My poor neck is not happy at all.

I fell asleep before 7 yesterday ended up with nearly 12hrs sleep but still felt like shit today! I cried at work :( just in so much pain and had the walking through treacle feeling (although my arms were the worst). I pushed through though, had some brufen at lunch and managed to cope for the rest of the day somehow. Not moved off the sofa yet!

Poor you. It's absolutely terrible when you end up in tears at work.

DH (who keeps going on about how I we need to watch our spending at the moment) has just been to asda for some cookies and has come back with a PS3 game. Apparently he 'needed' it because I would just be going to bed really early. In better news, our local lib dems have delivered their periodical 'newsletter' which informs me that the really expensive furniture shop next to asda that I'd never even considered going in to is all set to become an M&S food. I told DH that I will be expecting much more exciting treats to be brought in when he decides that we must have some kind of dessert once they've opened that.

I like M&S food shop. We have one opposite Waitrose - 2 of my favourite places. Until very recently, DS(7) would sometimes request a trip to waitrose as a special treat

Fuzz, so sorry work is so hard. I'm not coping with mine either. I don't think I can face it on Monday...not after passing out on Thursday. I'm so embarrassed

We always have bread in the freezer but not milk. I do keep UHT in for emergencies too.

Hope Belle enjoyed the party & isn't too wiped out.