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Spoons! Support thread for CFS, ME & Lupus sufferers

(938 Posts)
Grockle Mon 24-Dec-12 23:30:26

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.


Spoon Theory here

fuzzpig Sun 20-Jan-13 12:53:42

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

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 sad

SirBoobAlot Sun 20-Jan-13 15:51:02

Fuzz have you tried putting an extra duvet under your sheet? Summer duvets have a use in the winter. I have to build myself what DP terms my 'nest' before I go to bed - a cradle of pillows and cushions to support all my painful parts. Bless him, when he stays over, he to kind of mold himself around them...

Grockle Sun 20-Jan-13 15:56:00

I have installed my fitnesspal, whilst eating a wispa gold blush

I think it will motivate me so thank you for the recommendation. I know weighing less will make me feel better about myself mentally but I'm hoping that it will make my body physically better too. I wish i could eliminate a food type or something to fix this.

Grockle Sun 20-Jan-13 15:59:54

I make a little nest too grin pillows at certain angles in certain places.

DP is having yet another bout of bad depression. I never know what to do. He's so different to me when depressed, so passive and helpless. I find it really frustrating blush

Megsdaughter Sun 20-Jan-13 16:02:47

Grockle will do it with you f you like?

SirBoobAlot Sun 20-Jan-13 16:13:04

A lot of my friends have lost weight by eliminating carbs, but if you have a condition like ME it gets more complicated... GAH.

I'm sorry DP is depressed, Grockle. Does he have any professionals on board?

Grockle Sun 20-Jan-13 19:22:02

Ooo, would you, Megs? I'm much more likely to stick to it if I have to be accountable!

belleshell Sun 20-Jan-13 19:32:49

Im doing weight watchers...itsa week 2 but couldnt go cos of i will be good rest of week...i have been shocking last 2 nights (eating toast whilst dishing up tea...etc) but today done ok, gunna have horlicks and my stable rich im happy to support and really really need supporting when it comes to weight loss...

i have 18lb to lose...

just been looking over exam questions and what answers should be.....if i pass it will be a miracle...starting a new job, developing a service, ME/CFS crash 12 months in and a distance learning course i really didnt want to do isnt the right frame of mind to be in...still i have spent last 2 days in college and i have done assignment, so i have given it my best shot, and i have eventually got my head around the angiotensin-renin system!!!! its only taken me 17 years..

Grockle Sun 20-Jan-13 20:13:14

SirBoob, he has been discharged from the MH team so has his GP and nothing more. He's been off work for 18 months with it & I can't handle it anymore. On Thursday, school contacted me to say that DS had been upset because of problems with DP. They've been bickering lately and although I've tried to sort it out DS doesn't listen and DP gets cross because he sees me being stressed & that tends to make me ill. I don't know what to do - I've told DP to stay away for now. I really think I need to end things with him to help me be more stable, calmer etc but he does so much at home (if I write a list), we used to have so much fun together & he was fab with DS. And I love him blush. Why is everything so complicated?

Well done, belle smile

Megsdaughter Sun 20-Jan-13 20:16:24

Grockle have PM you

fuzzpig Sun 20-Jan-13 20:22:57


Buses have been running absolutely fine all day - have been keeping an eye on website despite being in jammies all day! But now they are cutting out half of my village which means a long walk tomorrow, in snow and ice sad I was fine with this last year but this time it will be a real struggle.

Really hope we at least close early as I don't fancy plodding home in the dark. I don't think other people will realise just how ill it makes people like us. It's not like being a bit sore after the gym (which actually I used to quite like IYSWIM as it meant I had worked hard) it could be enough to cause a relapse FFS.

You know what really pisses me off is that on our nearest roads it's not even the snow that causes the problems, it's muppets who try and drive in the clearly impassible snow, and then give up after a few hundred metres because they inevitably get stuck and have to abandon their cars in the road. Means that even when the snow melts the buses can't get round angry angry angry

End rant!!!

Duvet nest sounds good boob - when I was pregnant my mum lent me a huge body pillow and even now sometimes I stick a pillow between my legs blush. I am trying to find a way of propping the head end of the bed up because it's supposed to help POTS, which is really bad ATM. DH had a door under his side of the mattress for over a year due to his back so it's his turn to put up with it grin

Katy, how's your DD doing?

KatyMac Sun 20-Jan-13 20:24:58

Miserable, thanks for asking & she is contemplating starting a MN thread to cheer herself up

Grockle Sun 20-Jan-13 20:27:04

Thanks meg, will read now.

Fuzz, I sleep with a pillow between my legs. No idea why it is more comfy but it is! Sorry about work & buses tomorrow. Sounds like a nightmare. I hurt a lot today after my fun in the snow yesterday but it was entirely my fault. If you were nearby, I'd give you a lift.

Grockle Sun 20-Jan-13 20:27:57

She should, Katy. Sorry she's not feeling great.

Solo Sun 20-Jan-13 23:40:59

Back to work tomorrow, wish me luck! catch you all soon.

Grockle Mon 21-Jan-13 01:42:38

Good luck solo x

fuzzpig Mon 21-Jan-13 06:56:18

Best of luck solo! Hope you can ease yourself in gently and that it's nice catching up with people.

Buses are running slightly nearer now, still got a bit of a walk but not nearly as bad. But as I thought the remaining problems are caused by badly parked cars hmm. It's not supposed to be snowing until tomorrow so hopefully the journey home will be ok.

Megsdaughter Mon 21-Jan-13 08:27:33

Grockle have messages you on MFP think I need your email smile

magso Mon 21-Jan-13 10:37:16

Another bed-nest builder here. Our bed is just too heavy to lift, so I have tried to use additional pillows to raise my upper body but its hard to get everything comfortable.

I will have a look at my fittness pal ( thanks Megsdaughter and Grockle) as I need to loose half a stone and more specifically shape up. I am disapointed not to start supervised exersise with the CFS team (modified GET I think) so might start a gentle program myself. Any one know anything about Mindfulness for ME. I have been offered a course.

Good luck Solo and Fuzzpig and every one else struggling to work in the cold. I had a long trip home from work ( train chaos) on Friday and DH (with ds) met me with the car and a flask of hot tea at the station (2+ miles away- no buses running) which was lovely. As Ds school had closed early Dh had come home and had the tea ready.

Looks like a day at home in the snow for ds and I as his school is closed again. The postlady managed to deliver a parcel with winter trousers and fleece for ds and warm hats for both. Ds old winter walking trousers were exposing most of his calves!

fuzzpig Mon 21-Jan-13 13:21:34

My journey was ok in the end, feel really shakey again now though so haven't gone over to the shops as I'd planned - it's DH's birthday and I wanted to get a (gluten free) cake. I hate feeling so wobbly.

Thankfully we have a cafe in the library although it's too expensive to go every day!

Grockle Mon 21-Jan-13 20:36:58

Replied, megs.

Hope you survived Fuzz & Solo. A cafe in the library sounds amazing!

I'm miserable. DS's school called me today & wanted a meeting this afternoon. So, I had to leave work early & go & see the head. She was lovely & so I really hope she can help DS settle & enjoy school again.

DP has kept away & I've not seen him & had little contact for 5 days. DS is now missing him. I'm torn between missing him & feeling incredibly angry.

My knees have begun to ache tonight which is a sure sign that I am too tired & need to stop. But I have a 10 hour day at work tomorrow sad

On the plus side, my scales seem to think I have lost several pounds overnight grin Magso, come and join us! I don't know how my fitnesspal works & am desperately hoping that you can't see what I've eaten. Healthy diet, it aint blush

I've done mindfulness groups in the past, not specifically focused on ME but it was very helpful.

smilingthroughgrittedteeth Tue 22-Jan-13 08:27:12

Bloody hell, could things get any worse? <sob>

DP slipped over on the ice at work last night and was rushed to hospital in an ambulance, he couldnt feel his legs, still waiting for scan and x rays

magso Tue 22-Jan-13 10:02:41

Oh Smiling! Thinking of you. ((Hugs))

Grockle and Megs- thanks -my first day using myfitness and I had too many calaries at dinner! There does not seem to be a way of selecting a half portion so it may not be as bad as it looked. Also had to clear the snow from infront of the car so I could drive it so put that down as gardening as that was the nearest to digging I could find. However my pace was very slow - having to rest between each couple of spades of snow so perhaps it adds up about right. Achy arms today. House work today.

fuzzpig Tue 22-Jan-13 10:43:17

Oh no smiling, hope it's not bad news!

I'm feeling like crap today, really sore throat like I might be getting yet another chest infection sad not sure if I should go and beg the doctor for ABs again.

fuzzpig Tue 22-Jan-13 17:59:51

Mini update - phoned surgery and got a phonecall from a doctor despite the receptionist being a grumpy cow and she actually prescribed me ABs without needing to see me shock she just looked back through my notes and agreed it was necessary. DH is going to pick them up tomorrow but I'm going to still try and get to work. I only had a half day today but it was really hard. The cold really isn't helping the chest pain.

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