Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

I have been excused from jury service, they have just rang, I am so relived I actually cried, dp thought they had said I had to do it and was all set to march down there and demand they excused me until I managed to croak out that it was ok

Im still exhasted, I dont think its helping that im 7 days late for my period and feel bloated and crampy (sorry tmi)

Oh thank goodness smiling! What a relief. :)

We got sent home early and I am now sitting on the sofa with the heater on, eating chocolate and listening to my newly-bought Corrs album while watching DH and the DCs play in the snow.

And THAT my friends is how you do a snow day. :o

Megsdaughter, sounds lovely. I walked the dog but only a very short walk. It's been lovely snuggled at home with DS. His school was open but i kept him home since the other 300 schools in the area were closed. I'm a teacher so should know better than to let him have a day off but I figured he'd benefit more from a day in the snow with me than another day in school.

Fuzz, I agree with Megs. And your day sounds lovely.

Great news, smiling. Phew!

I am actually thinking of applying for another job too BTW

It's in a school office, so better hours and school holidays off, and all seated without the physical exertion of library work. I really don't know if I should or not (and TBF I may not have a hope in hell of getting it anyway) but it doesn't close for another couple of weeks. I wasn't even really thinking of trying to change jobs but I saw it on the council website.

Oh and in really exciting news I think I have actually made a RL friend she is relief staff at work so not in regularly but we really get on well. Normally I'm so guarded these days and don't let myself get close to anyone in RL but I don't have that worry with her as she is very friendly and affectionate.

She actually had suspected ME before and does still get fatigued easily so it has been really nice for us both to be able to talk about it too.

Now all I need is for you lovely bunch to move to my town and I'll be all set :o

No fuzz you are all moving here, I have it planned we are going to live in a huge house and look after each other, share dog walking, cooking and cleaning and when anyone tells one of us to work through it we are going to band together and beat them with umbrellas

We still havent got any snow so no snow day here it is -5 though so im huddled under a duvet

snow just startig here....im hoping i cant get to bradford tomoz for my exams.................. oh when we moving in

Hi everyone - I've had CFS since '95 but I cope really well as long as i don't get too ill

But now DD is post viral & I'm a bit panicky as I don't want her to end up like me

Is total rest or graduated return the current thinking?

Sorry to hijack

KatyMac, no idea what current thinking is, I'm afraid but welcome.

Lovely that you have found a friend, Fuzz. The school office job sounds fab - that's what I'd love to do.

I love the commnue idea!

Hi everyone, hope you're okay.

Katy, read recently that the suggestion of 'graded exercise and CBT' may actually be more damaging for CFS sufferers. I think, do what works for you, though, as everyone is always affected differently.

Anyone else dreading going out at the moment for fear of falling on their arses?!

SirBoob I just did :)

Oh no, are you okay?

D'oh! Hope you're ok.

I'm not too worried myself but I can really sympathise with the worrying because for the last couple of years DH was on crutches and it was quite scary. This time is ok so far though which is lucky as I now work FT so DH has to do all school runs.

DH has just taken DD in to meet her big [half]sisters who are babysitting for the first time ever! They are 14 and said last week they'd like to take her to the cinema with some other friends :)

As for me I offered to go into work today (even got up early and had a shower just in case) but they don't need me (yet) so I am eating carrs water biscuits with salted lurpak - purely to increase my salt intake of course :o

This year's London ME conference, discount registration has started

Neither DH nor DD are taking the need to rest seriously

I am terrified tbh - she is only 15

Thanks for that, Kate, but seriously out of my price range... Surprised at the cost of the tickets, tbh. Seeing as the majority of ME sufferers are on a limited income, £45 as a concessionary rate is going to be impossible for a lot of people.

Hi KatyMac I would suggest rest, thats the only thing that helps me when I'm in acute stages (I never want to admit defeat but it really is the only way). It must be very difficult though at 15 to slow down when all you want to do is be a 'normal' teenager. CBT seems to be helpful sometimes. I'm familiar with CBT (im a nurse) so I use it on myself! But I would be cautious with Graded exercise. Action for ME have a site specificially for under 25s - might be worth checking out?
Smiling - glad you dont have to do jury service - what a relief!
Fuzzpig - the other job sounds good, I would go for it. And glad to hear about the friend you have made
Belleshell - we have all made mistakes, glad everything turned out ok. The cognitive part of ME-CFS is awful

Hi to everyone else!

Well my haemacromotosis (high iron) result isnt back yet, that was taken well before xmas!!! This GP is convinced there is something physical going on thats causing the fatigue but I'm not convinced. Having had it for ten years and it waxing and waning and also having lots of bloods done at other times, I think they would have picked whatever it was up by now! I'm going back to work phased return on wed and actually feeling ok about it. I seem to have picked up a bit in the last few weeks thankfully. I'm probably up to about 60/70% now which is a big improvement on the 30-40% I was in november.

Sending you all spoons and hope you are all as well as possible

Oh NurseJackie - she doesn't want to be a normal teenager; she is a competitive Ballroom dancer with Ballet scholarship

I'm panicking unnecessarily as we are only a week in - but with my history you'll understand why

Just caught up - hope everyone is ok. I worry a lot about DS being unwell (either mentally or physically) like me. He's not doing very well at the moment & I worry about him being depressed. At 7.

I've managed a lot today. A lovely walk with DS to town for a coffee with my family & then a drive to the Forest where we did a big, snowy, muddy walk, looking for places to sledge. Then out for dinner but we had to come home because by 6.30, I was falling asleep.

Supposed to be going to (wait for it...) exP's mum's cousin's grandson's birthday party tomorrow. What actual relation does that make him and DS?! Never mind. I love the family, but I am so not in the mood.

Sounds complicated sirBoobs. Do you get on with exP & his family? Hope it is ok.

I've woken up in pain all over. I think that hiking through a snowy forest may not have been a good plan.

And I'm wondering how best to shift this extra stone I have put on. I can't believe I weigh so much

Snowed in, can't get there. Relatively relieved The family are lovely, actually, and I see them way more than exP does but I feel really rough, physically and mentally. Can't form a comprehensive sentence today, much less have a discussion.

Hope pain eases off Grockle :(

Grockle, Myfitnesspal! Ive lost a stone in a month with it. And Im never hungey or do without.

Example to day its homemade Chicken Casserole, followed by Apple Crumble and Custard for lunch, breakfast was porridge and tea will be Tomatoes on toast.

Plus fruit through the day as and when I need it.

Sitting inside again while everyone else enjoys the snow felt reasonably well yesterday until the evening when I fell asleep early, but woke up in massive pain

My hips hurt a lot lately, especially at night/early morning, like I've been sleeping on a bed of concrete instead of a mattress?! What's that about?

Am watching our new futurama DVD though so not all bad - just hate hurting so much. Dreading tomorrow now as I'm doing 8.30-7 :(