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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.

smile

Spoon Theory here

icepole Sat 23-Feb-13 02:06:44

I hope so too! I can't believe my seniors have done nothing for so long and they still expect me to get all their paperwork done at all never mind for verification.

My space has been trashed too but I'm just going to have to live with it.

Grockle Sat 23-Feb-13 15:34:30

At least I don't have exams etc to prepare students for. I still haven't done any planning blush

belleshell Sat 23-Feb-13 21:32:19

Hi All, sorry i havent checked in for a while, ive actually been away for DP 40th birthday.... I hired a 1973 VW Camper van and we have been around the Dales...had a fab time but so cold and i am F**Ked now.... i did manage a 4.5 mile walk, with a few pub stops and now i can barely move, concentrate, focus, and today is DP actual birthday and i didnt get dressed till 4pm... he is now at the pub with the kids and im at home!!!!! ACE>

Fuzz, opening up is the right think to do......... i have read a thing today and it went a bit like this....how heavy is this half full glass of water ( it was a visual thing) the answer wasnt how heavy it was but for how long you held it... if you put it down straight away then its not heavy if you kept old of it for a day it would weigh u down but a week or a month........ our inner demons are the same...... this really rang true to me!

Grockle 11 year old chinese girl????

Icepole, good luck with monday..

and to you all spoons to you all

oh and ps we have a krispie kreme drive thru in leeds too

Grockle Sat 23-Feb-13 21:42:17

Do you Belle?! I may have to be in Leeds over the Easter holidays! I will have to Google Krispy Kreme.

Sounds like a lovely trip. Hope DP enjoyed it & that you are recovering.

I live by a language college so there are lots of foreign students around. They are usually 16-18ish & stay for 3 weeks but I agreed to have an 11 yr old for 6 months. I'm registered as a private foster carer so effectively have 2 children to look after now, one of whom barely speaks English. I agreed to do it because it is relatively easy money & DP was meant to be here to help. He's going to come and get the rest of his stuff tomorrow night sad & then he'll be gone for good.

I have mouth ulcers again & they hurt angry

The holiday sounds like it was fun, belle. Well done on the walk.

I get mouth ulcers all the time. They're just awful. I think it's the naproxen, but it might just be me. I'd rather blame the naproxen though. My dentist is always dreadfully concerned about the mouth ulcers, bless his heart. He's always trying to think of ways to help me with them. He's very young too, which makes him seem so very earnest.

I have decided to go back to work on Wednesday. I shouldn't actually have to physically go in til a week on Tuesday (hence my cunning Wednesday return), which further delays the bloody awful commute.

Sorry about your DP, grockle. I can't imagine you're looking forward to him picking everything up.

DH is being odd. He seems uncertain about whether he wants to split up or not. He's asked me to go to relationship counselling with him and I've agreed. I'm dreading it, tbh. Yet, at the same time, he just applied for a job in Bristol. He asked me today if I wanted to go part-time at work. I ended up really upset about it because I will never be able to do so since he's planning on leaving and he asked it in a resentful way. Apparently he actually meant that he thinks that I should go part time if we were to stay together (as it would make things better for everyone), but I think it's cruel and unhelpful to say things like that.

We're going to see the gruffalo's child at the theatre with some friends tomorrow. Or, more accurately, we're all accompanying our 3 year olds to it. It should be fun.

Grockle Sat 23-Feb-13 22:13:21

My rheumatologist suspected Lupus on the basis of mouth ulcers (& a couple of other things) - apparently it's quite common. I suppose we are all run down so more likely to get ulcers etc. I was reading about Fibro being an auto-immune problem (like Lupus, like AIDs etc)

I'm think I'm going to tell DP not to come tomorrow - the last thing I need before going back to work is a big fight with him. Sorry things with your DH are odd, Arb... I do think you need to do whatever you can to remain independent & financially ok, even if you do stay together. I agree that he is being unfair & unhelpful. I hope the counselling helps.

Enjoy the Gruffalos child. We saw the Gruffalo at Camp Bestival last year & I was drunk I think DS loved it

belleshell Sat 23-Feb-13 22:15:43

its on same industrial park as ikea, and home sense my 2 favourite shops!!!

im sorry tomorrow will be hard!!! but maybe a break will do u both good
xxx

Grockle Sat 23-Feb-13 22:18:27

Oooo, I used to live by there. We'd often go to Ikea for dinner on a Friday night when it was buy one, get one free on meatball meals. Yum!

My condition is an autoimmune disorder too, so it could cause the mouth ulcers. I still blame the naproxen though. I have to take omeprazole with it so that it doesn't destroy my stomach.

DH seems to be eternally annoyed that I get 'all the side effects' of whatever drugs they give me. He can't seem to understand that stronger pain killers tend to have horrible side effects. I tried pointing out to him that all the hideous effects of tramadol are listed as common side effects. If I was pretending to get side effects, it has plenty of even more hideous uncommon and rare side effects. Nor does he realise that I try to minimise how much he (or the kids) knows about how crap I feel all the time, so if I collapse in the kitchen (fr example), I really don't feel good.

fuzzpig Sun 24-Feb-13 04:24:37

You're supposed to take a stomach protector when you take naproxen?! Yikes, I didn't know that. I took naproxen for a while but gave it up - although due to lack of effectiveness, not side effects. I'm not generally too affected by side effects of meds, but then I've not taken anything really really strong.

So much pain ATM and having lots of bad dreams - I was on the sofa anyway as too exhausted to get upstairs last night, so I've put Big Bang Theory on the telly to distract myself. DS (3) has also come down at some point and is now asleep at my feet confused I do really love sleeping with my snuggly little boy but there is so little room on the sofa, and he was sleeping on my head earlier. He's like a cat hmm

I feel like I've done a six day week, having the hospital trip on my day off is just crazy.

fuzzpig Sun 24-Feb-13 04:27:31

Oh and good luck if dp comes over grockle.

I have some friends visiting today, it's usually very low key but DH will be out some of the day and it just feels like too much

That's a very cute description of your DS, fuzzpig. Sorry you can't sleep.

You don't have to take a stomach protector with naproxen. It's apparently one of the more gentle NSAIDs but they can all cause stomach issues, particularly with long term use. I was originally prescribed a longer lasting NSAID but my stomach can't cope with it even with omeprazole. I nearly gave myself an ulcer taking inbuprofen for flu when I was an undergrad. That was hideously painful and my GP at the time said I should avoid doing so ever again. So I wasn't surprised that my stomach didn't like NSAIDs when my rheumatologist prescribed them. Even with omeprazole I still get quite a bit of heartburn.

I have been having weird, very vivid dreams for a while. Sometimes they're outright horrible. I was struggling to go to sleep last night too because I didn't want fall back into the bad dream from the night before. I never had bad dreams before I was ill.

Grockle Sun 24-Feb-13 09:29:54

Aww, your DS is lovely, although I can see how it's not necessarily ideal for you, fuzz grin

Sorry neither of you can sleep. Bad dreams are awful. I often have very vivid & disturbing dreams but I'm sleeping much better now DP has gone

DS wants a pyjama day so we're snuggled under blankets, watching the Penguin programme. My student is out for the day so that helps.

Hope your visitors aren't too demanding, fuzz. I dread having people come over, mainly because I don't know when they'll leave! I have a well-meaning friend who turns up for coffee & is then with me til 11. She came over in the summer for a quick chat at about 2 and was still here at 7, waiting for me to cook dinner hmm when all I wanted to do was go to bed!

fuzzpig Sun 24-Feb-13 09:45:06

Ah thankfully this friend is a very busy person anyway and usually only stays for a few hours because she has so much else to do! smile

I'm her bridesmaid in May so will have lots to talk about, and I am super excited about her hen party - we are having a chocolatier class! grin A bit nervous about how exhausting all the wedding stuff will be but I hope I'll have my reduced hours set by then.

I've still not heard anything from occ health or even my manager about this. Grr. Life is just so stressful at the moment.

belleshell Sun 24-Feb-13 13:07:14

today i want to stop the world and get off for a while (tired grumpy and a bit emotional....not sure why)

Grockle Sun 24-Feb-13 13:38:40

A wedding should be something nice to look forward to, Fuzz. And reduced hours too.

Belle, I do too. I'm tired of life. Not in a suicidal way just a fed up, tired, it's too hard way. I don't have the energy for anything, I'm not interested in anything & I just want a break and for the sun to start shining & i can't help thinking that if I'd died years ago when I should have, life would be better for everyone. Maybe I am depressed actually confused

<Gentle hugs>

belleshell Sun 24-Feb-13 16:22:18

oooooo grockle (hugs) i do get what you mean, but im not sure why you should have died, and am very glad you didnt.... do you take any AD's.... i know you are on amitriptyline, but i mean AD for actual anxiety or depression... You have had so much to put up with lately, and you arent running on full stream, it might answer you loss of appetite....

would the foster thing help you reduce your hours if you did it more often, perhaps with older kids from the language school

i hope you have had a nice duvet day and the mars bar cakes were just as gorgeous as they sound..xx

Grockle Sun 24-Feb-13 17:15:27

Sorry, I'm always so whiney on here.

I'm not on ADs atm. This time last year, I tried going back on them (have been on them in the past for long stretches) & after trying several different ones & them not helping, it was agreed that if I could sort all my physical problems out, I wouldn't be depressed which is what I'd said all along.

Now, a year down the line, my physical problems are not sorted and may never be. Hmph.

I could drop a day's work if I have students here. I think I'm finding it hard to adjust to things. 3 months ago, I was with DP, he looked after me & helped with DS while I tried to go to work 4 days a week. I'm now a lone parent, trying to do 2 jobs, looking after 2 children & not doing anything very well. And that means that I don't have time or energy to look after myself.

belleshell Sun 24-Feb-13 17:30:05

GROCKLE your not whiney at all....

Dear all
if you could change one thing other than your diagnosis in your life what would it be???

Mine would be my job 4 days a week,

Grockle Sun 24-Feb-13 17:59:20

Um, I'd not work. At all. I'd do voluntary work, like I've done before & stay home & bake cakes all day. If only...

smilingthroughgrittedteeth Sun 24-Feb-13 21:37:07

Right now I'd change everything, I'm struggling and would like nothing more than to live on an island on my own where I can just sleep and rest without feeling guilty all the time

If I could change anything, I wouldn't work either (I'd want to keep the salary though!). I'd rest, do fun stuff, do voluntary stuff related to my area of expertise, have fun with the kids and generally be happier. I find work stressful, even more so because I hate not being able to do anything 'properly' (or at least as well as I can). I always feel like I'm letting people down and it is horrible.

Alas.

The gruffalo's child was ... Odd. A bit minimalist for an audience of small children really. DS2 came out saying that he wished they'd had proper costumes. My friend couldn't actually recognise snake at all. I think the kids enjoyed it, but DS2 said the book was much better.

belleshell Mon 25-Feb-13 13:26:28

funny isnt it that its all work related, today i wouldnt work either.... i have been to work, come home and now have a weeks worth of winter camping clothes to iron.... i could cry, i feel like i have blocks of lead on shoulders, and my usual iron trousers..... all this because i had a week away, with no kids, no ties, slept lots, and went for a walk.... my DD is having a minor op this week, so i need to be off 2 days with her.....i cant wait....i seriously need to look at permenant reduction of hours, but really not sure how i will do it finacially................

belleshell Mon 25-Feb-13 13:26:58

Sorry i came to wish you all that are returning to work today a spoon filled day....x

Grockle Mon 25-Feb-13 17:18:54

What a shame about the Gruffalo's Child. I feel like I've been cheated if I've paid for something that isn't as good as it should be.

I've been refused DLA. No surprise but they say it's because I can cook a meal for one (I can't - DS cooks his own dinners mostly) & because I can walk at least 100m. The dr who did my assessment watched me take 4 slow, shuffly steps whilst I grabbed the sofa then fell into the wall. hmm

Hope DD is ok, belle. Enjoy the time off.

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