Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

hi all,
sorry have not read all of the previous messages just is kimmed through them. just want to answer confusedpixie re left side pain - I've just been seen by a neurologist & was told this is nerve pain & part of fibromyalgia. i've been given pregabalin 75mg for it but so far it's not been that helpful..I've been told it goes upto 600mg. gotta see my G.P for a review to get it increased. just gotta try getting through the weekend :(

as for snow we got lots of it but it's not settling. the cold Is unbearable & so heating Is on full blast!!!

Grockle i laughed after but did panoc i thought i would have to have a decent conversation the only time i ever ever call her is when i am utterly pissed of with exH. pain......... hello are you new to us.. we are a friendly bunch just a shame we have so much in common!!!!

I can't write by hand either. I had to wear wrist splints for writing at school (and learned to write with both hands so I could give the other one a break), but rarely have o write anything now. It's a good thing, as I really struggle with it.

Apparently voice recognition software is now very good (according to my OH). We'll see. I'm skeptical. I do not have the kind of accent that usually does well with this sort of thing. If there's ever a thread about incomprehensible accents, my home town is usually mentioned in the first 5 posts. I have the generic version of that accent that you hear on the TV all the time now (due to moving around/working in academia) but Siri cannot cope with it on H's phone. It'll be great if it works, as typing is often agonising.

I have no grip strength either. I have to get the kids other people to open jars for me. And I drop things much more than I used to. I just seem to lose my grip on them. I managed to smash both an iPhone and an iPad in one day because of it.

When H finally came home I lied about how much TV we'd been watching took the kids out to hobbycraft to buy tat to make an Easter bonnet. DS2's nursery is having a big party with a bonnet competition so he's very keen. Tomorrow I'll be supervising as he sticks fluffy chicks and stuff all over a hat. I plan to give him plenty of freedom to ensure the maximum made by a 3 year old look.

Arbitrary I bet the 3 year old art look will look lovely!
Grockle I have found the stabilo easy write pens made for children are helpful -I have tiny hands (for an adult) so the grip positions work. They make black indelible refils as well as the standard blue erasable/washable.
Pixie thinking about it I have had vibrating muscles in the past - when literally exhausted ( I used to climb) but to get it all down one side and without an obvious cause, does sound different. Pain for life did you mean you get the juddering limbs too - sorry I'm easilly confused!

magso - yes I get the juddering limbs on the left side of my body too. that why I was referred to a neurologist. she did some reflex checks, some eye sight test etc.... sorry if I dont make any sense I'm soooooo tired today :(

Hi pain. Welcome to our little corner of MN.

I drop things a lot too. Paying for anything with coins is a nightmare. I am clumsy & awkward. I will look for those pens, magso, thank you.

Arb, the hat will be fab!

its a shame we cant have pics on here although we do have a facebook page too..(its closed so u can write on it when off sick!!) id love to see AU hat..... my nick name is dropsy, i drop stuff all the time.and i find pegging put washing a nightmare, i cant hold stuff in place and peg at same time!!

Ooo, yes... if any newbies want to join the FB page, let one of us know. No-one's posted there for a while but it's another safe space to vent & share picture.

Funny that a few of us seem to have the same issues with dropping things.

oh gosh lets not talk about dropping stuff , I thought I was the oyster one

I always feel guilty when a cup of tea or a glass water slips out of my hand....

I thought my weird grip problems weren't related. Kind of relieved to find out so many have it.

We had snow, all gone now though.

Thanks for all your support.

One week to get through until Easter break. Have decided all my first year classes will watch a video. It will be relevant and I think it is more than enough for me just to get through being in front of them. Seniors will be fine, they are nice classes, I can teach sitting down and being quiet if I need to. Second years will be hell, nothing I can do about that, they are awful. I have them four times.

I am also meant to take a school trip in the break, actually I would like to go but it will be too late for me, I won't be able to deal with the kids the next day if I go so I am going to try and find someone else.

Hope everyone is having a decent weekend. I am gong to get an early night

Ah yes I think I am still the admin person on the fb group (which is set to secret) so if anyone wants to join PM me :)

sorry no FB... did have it but it was too much to keep up with.

I would like to get an early night too so will be taking my sleeping pill a bit early today. my head is a mess aswell so it'll do me good.

I just wanted to say to all those that work with these condition u all fill me with inspiration as I'm aiming to get to the place where I can so that. I've been bed bound for about 3 years now because of these god forsaken illnesses!

painforlife: thank you :) That helps, probably a similar thing.

magso: That's also interesting to know. I will see if it's eorse on Tuesday after climbing. If it's a delayed reactiont he timing would have made sense as I last climbed on Tuesday and it started on Thursday night.

Hello! Quick drop by from me. Hope you are all ok?

Grockle :) thank you so much for the card! it was a lovely surprise! not sure when you sent it as I had to collect it from the sorting office . It made me smile :)

As you may know, I'm back at work and what a killer! I'm shattered!! I'm not stopping on here for long and I don't know when I'll get back again, but I'm thinking of you all. Take care.xx

See, I can't do anything right. Even when I try to do something nice fuck it up. [Sad]

Aww. Easy mistake to make grockle!!!

I got my card too, thank you very much :) it had arrived a few days before (and my one did have a stamp on it!) but it had got buried under stuff on our messy table

((((Hug))))

morning all,
so I was woken up at 6.30am by a crying DD(poor thing has temp) I think that's the earliest I have woken up in the last 2 years & more surprisingly I actually woke up (really dizzy because of sleeping pill)... now she is running around the whole house in a tantrum. God give me strength to get through today. I feel so sick myself just wanna hide myself under a duve!!! :(

Don't be daft Grockle! it was a lovely surprise :) take my comment with the humour it was written with... please! it was a lovely thing that you did and I appreciate it very much! I admit to almost not collecting it as I wasn't expecting anything through the post and I've been down there twice to collect things that I had cancelled previously, so I thought it was to do with that. Very glad I did though!

Awww grockle don't feel bad, mine didn't have a stamp on either my lovely postman brought it for me the next day but it made me smile to know it's not just me that does things like that.

I sent my aunt an invite to my birthday party and didn't put a stamp on it, it's easily done.

Have just packed my hospital bag ready for tomorrow am feeling a bit nervous now

Grockle..........you are one the kindest people i hanve never met..... You think of us all despite all your own crap.........infact i often wonder how you do it.... I dont think you have evered f*cked up.....

Thank you for just being you.....xxxxxx

I'm sorry. I wanted to do something nice, not cause hassle. I feel stupid. I will, of course, reimburse you all asap.

Thank you Belle for being very sweet. Life is too hard for me now. Everything I do is wrong, I fuck everything up, even the simplest of things. This isn't what I wanted at all. I'm really sorry. I will disappear & leave you all in peace.

Thank you for all your support on here over the past few months. I wish you all love and spoons and much happiness.

Oh grockle. No one here thinks you're useless. Forgetting to put a stamp on an envelope is the kind of mistake anyone could make, even people who aren't exhausted and ill and overwhelmed with work and life. Indeed, my bank has done it to me in the past. And they don't even have to stick a stamp on!

Also, if you go to the sorting office and pay the postage to find a lovely card, then you feel happy (and think no more of the postage). If you get there, pay and discover it is correspondence from your bloody bank, then you are grumpy and have to go into a branch and complain.

I hope everything goes well tomorrow, smiling. I'm sure it will.

Thank you arbitrary.

Grockle please don't feel bad, it's a relief to know I'm not the only one who forgets to do things, YOU DID NOT FUCK UP you forgot something, if anyone can understand about forgetting something it's us, I bet every single one of us forgets at least 10 things a day, I also bet all of us get frustrated with ourselves for forgetting to do things that we do every day.

Please don't feel bad, getting your card really cheered me up it was a lovely thing to do and I am eternally grateful to you for starting this thread because I need you all to get need through this horrible illness.

I can list 100 stupid things I've forgotten to do..........

Last week forgot to shut the rabbit hutch, came down in the morning to a cold wet very grumpy rabbit.

Forgot to pick up my mum's spare key and had to drive a 50min round trip to get them from her at work which I'd past in my way from my house to hers.

Put dp's pain killers on top shelf of medicine cabinet and went to work, Que a frantic dp calling me because he can't stretch and needed his pills