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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

magso Sat 05-Jan-13 20:52:07

Hello all. Happy new year to you all. I lost the old thread and have only just noticed this one.
I guess it is good Grockle that Lupus is back off the maybe list. I will confess to disapointment when this happened to me as I just want to get well and anything treatable has to be a start.
I have got rather podgy too- having always been petite in the past. It used to be difficult to find cloths small enough but today I went shopping and all the nice clothes were too tiny by miles. I think I feel faintish and snack because in the past it was a sign of needing food - now is just the ME. Also I think some of the medicines make me hungry! Any suggestions where to start with loosing weight but keeping as well as possible?
Tea at the Ritz sounds lovely*SirBoob*. Hope you are feeling better Fuzzpig.

SirBoobAlot Sat 05-Jan-13 21:08:04

Forgot to say I saw the ME team on Thursday. They were nice, but basically said they couldn't help me. Did tell me to alter my diet and try to eat three meals a day. When asked about it, realised that some days I barely eat anything.

Have managed to eat two small meals today and feel bloated as hell!

smilingthroughgrittedteeth Sat 05-Jan-13 21:09:11

I've also put on weight, I'm only 5ft 2 so any weight gain makes me look massive, I've always been a size 12 bottom and 14 top big boobs and been happy at that, I'm now a 14/16 bottom and 16/18 top sad

I hardly ever eat breakfast, often skip lunch and just don't have the energy to eat dinner so I graze on food all day long, just eating whatever is handy that doesn't take any effort to make or eat.

SirBoobAlot Sat 05-Jan-13 21:31:48

I lost a huge amount of weight when first ill, then struggled loosing baby weight, because I couldn't exercise it off sad

Grockle Sat 05-Jan-13 23:56:13

That's the difficult bit... I do as much as I can but it's really hard to do more physical activity because it hurts & I'm shattered. I really need to concentrate on it now & be firm with myself. I don't like feeling all wobbly.

I don't want to go back to work on Monday! I'm just beginning to feel well again, after 2 weeks off. I know that after 2 weeks at work, I'll be literally dragging my feet & feeling really awful. I don't know what to do about it. If I could stay at home, I think it'd be manageable - I'd still have bad days but fewer of them, I'm sure and I wouldn't have the guilt I feel now if I go to work & can't do much or have a day off sick. But I can't stay home so I have to get on with it sad

fuzzpig Sun 06-Jan-13 00:23:05

Apologies in advance for selfish rant. I am in a bad way at the moment. Can't sleep which is happening more lately and very annoying because getting decent consistent sleep was the one thing I was doing pretty well. For the first time in ages I am in a lot of pain. Was hoping to go back Monday but what's the point really? It is really getting me down now and I just want to shut the world out.

Grockle Sun 06-Jan-13 00:39:50

Oh fuzz, it's horrible, isn't it? My sleep has gone all silly again. I wonder if it's a January thing. No advice really, because I feel pretty much the same as you but don't go back til you are ready. Gentle hugs for you & lots of spoons.

WhereTheWildOnesSnow Sun 06-Jan-13 10:40:02

Hi all and Happy New Year. I'm finding everything really hard work ATM and just want to sleep all the time. I have ME and am waiting for referral for fibromyalgia.
I'm also having lots of problems with my periods, had a miscarriage in may and since then they have been really irregular. I had an internal scan after miscarriage where they said there was a lump/cyst but it was nothing. My periods(when I have them) are extremely heavy so I'm worried I may have some other problems there :-/
I'm hoping that once the children go back to school and my routine (which is key for me) goes back to normal I will start to feel better but I'm dreading the early mornings, it's getting to the point where I can't even get up with the children which is worrying.
Can't believe how much I have just waffled on, think I need to get stuff off my chest.

justcrazy Sun 06-Jan-13 10:53:32

Hi everyone, I am new to mn and have just read through this thread and feel like I am home! I have ME and depression, I work full time with SN children and have two teenagers.

My sleep at present is awful mainly I think from stressing about returning to work tomorrow and how am I going to manage. DH has been off over the hols as well and I have been getting up late and having afternoon naps.

Hugs and love to you all.

smilingthroughgrittedteeth Sun 06-Jan-13 11:12:38

Hi WTWOS and justcrazy

Someone please tell me to get up, I've done so well all week at ignoring the aches and not giving in to the tiredness but can't seem to fight it today.

justcrazy Sun 06-Jan-13 12:13:43

Hi smiling, you've done fab all week and if you can listen to your body today and rest as much as you can. X

belleshell Sun 06-Jan-13 15:59:53

well i survived the night out.... even thou i didnt know anyone and really wanted to be at home tucked up on settee or in bed we stayed out till 10 ish.....not great but its a start at trying to overcome my sat night phobia.......(well its any night that involves going out of house after 6pm)

im also doing well with the weight watchers thing...... planning meals takes the chore out of deciding whats for tea...

i wonder if i will feel any better a stone lighter........probably not but wil fel better about myself..

spoons to you all and welcome new MN...sorry you it into our bunch but glad your here to join the support these fab peeps offer!

smilingthroughgrittedteeth Sun 06-Jan-13 17:43:09

Glad you survived belle I hate going out in the evening and get really panicky about it, the only time we go out is on Tuesdays to a pub quiz, but we live opposite the village pub so if I get tired I can be home in 30 seconds plus we know everyone there so If I'm not overly sociable nobody thinks I'm being rude they know I'm having a bad day.

I slept till 1pm, got up and popped to tesco then slept from 2.30 till now, am going to cook DP a nice dinner to make up for being a useless girlfriend (he says I'm not but I feel it on days like today)

fuzzpig Sun 06-Jan-13 18:08:45

I just realised I haven't been outside the house this year. In fact since I came home from work on 29th Dec.

belleshell Sun 06-Jan-13 18:33:14

oh Fuzz, go down garden or somet........ hope you feel better soon..

Grockle Sun 06-Jan-13 19:48:53

Hi WhereTheWildOnesSnow, sorry you are struggling. Welcome justcrazy...I'm also having a big panic about work tomorrow. It's INSET for me so I am eased in gently but is very, very hard for me (also work with SN children).

Belle, that's the same idea as me - I may or may not fell better a stone lighter but I will certainly feel better about myself which is important.

Fuzz, not being outside for that length of time would make me very depressed. I NEED to get outside. I hope things feel better soon.

fuzzpig Sun 06-Jan-13 20:58:27

I tend to get more insular the more I'm inside. I don't even want to go out (and have no garden anyway). Not decided about work tomorrow yet.

belleshell Mon 07-Jan-13 17:14:49

Hi All just wondered how work was for you back tomorrow.xxxxx

fuzzpig Mon 07-Jan-13 17:16:32

Didn't go. Which means I need a sick note, and can't get an appt til thurs. I am worried they will refuse to write one.

magso Mon 07-Jan-13 17:32:40

Can you get a telephone consultation or just write a note explaining to the GP that you do not feel well enough to work. I needed a sick note after my surgery (the hospital could only give 14 days and recovery needed longer) but when I eventually got an appointment the GP said I could have written or asked for a telephone consultation so yours may be the same Fuzzpig. Hope you feel stronger soon.

Megsdaughter Mon 07-Jan-13 18:14:29

Did anyone hear the bit on Jeremy Vine on Radio 2 today? It was the first time I have heard Lupus discussed on main stream radio.

It was about 1.25 if you listen to it on Iplayer.

smilingthroughgrittedteeth Mon 07-Jan-13 18:14:55

I ended up coming home early I nearly threw up on a tesco drivers shoes, its just
tiredness but I couldnt carry on anymore

SirBoobAlot Mon 07-Jan-13 19:31:01

Struggling with my mental health condition this week. Hoping to read through what everyone has written tonight if I can.

Much love to you all, sending spoons.

NurseJackie Mon 07-Jan-13 22:30:57

Hi hope I can join you? I've had ME for ten years and was functioning quite well working part time as a nurse. I have a 3 year old DS. Since oct I've been going through a relapse although seem to have picked up a bit in the last few weeks and plan to get back to work soon. Have been reading through the thread and can really identify with a lot of what you have all said. I've found this relapse tough looking after my son and trying to pace along with the feelings of guilt and frustration but recently have been trying to let go of all of that and praise myself for what I can do. Look forward to chatting.

Reenypip Tue 08-Jan-13 08:45:06

Hiya everyone! I've posted in other topics on here but never in here.
I've got multiple health problems, one of which is possible ME.
After a spine and foot operation, I caught MRSA which got into my blood causing septicaemia and then I caught C Diff too.
Since then I've never been the same.
They haven't done any tests to rule out anything else. And my GP said it was ME because of the symptoms since I was seriously ill. It's been 3 and a half years since it started.

I have a 20 month old boy and pregnant with my second at 21 weeks.

I joined AYME but now I'm 26, I've had to leave. I haven't joined the graduates.

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