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Original poster

Spoons! Support for those with chronic pain & fatiguing illnesses

931 replies

Grockle · 03/04/2013 13:48

Spoon Theory here

OP posts:
fuzzpig · 10/04/2013 16:56

Couthy thanks for mentioning the tefal thing - is it the fresh express or multifunction thingy? (Am looking on amazon)

Been lusting after the JML version that kind of product for a while. We do have a brilliant food processor but it's heavy and not easy to clean (we have no dishwasher - unless you count DH :o)

Brightlydoesit · 10/04/2013 17:29

Hi fuzzpig

Thanks for the welcome, it's nice to be amongst people who can empathise as they have similar health issues.

Don't know where to start making friends in real life really god that makes me sound sad! The ones I have are all happily married. Just taking things one day at a time for the minute

magso · 10/04/2013 18:07

arianne have you asked for a carers assessment form social services ( disabled childrens team)? Looking after 4 very young and disabled children is a lot-and surely SS will see that. I have not seen your other posts but I imagine you have had a very stressful time if dd has just become diabetic, in addition to everything else. Social services may be able to provide some respite (for older disabled children) or direct payments to pay a carer or 2.

buildingmycorestrength · 10/04/2013 19:59

Think Grockle is having a v hard time of it today judging by her other thread. Sad

CouthySaysEatChoccyEggs · 10/04/2013 21:04

Fresh express. Doesn't like leeks, mind you...

ariane5 · 10/04/2013 21:35

I get carers allowance but have not had a carers assessment.

SS saw us a couple years ago after I contacted them but they couldn't offer any help. I am just exhausted and have hurt neck even more today lifting the baby and the pain is intense but I can't rest. Think I will be at gp (again) tomorrow to try and get some painkillers tgat will enable me to manage day to day stuff as I can't with this pain.

buildingmycorestrength · 10/04/2013 21:54

There's a thread in "parents with disabilities' entitled 'disabled parents help with childcare', it seems to have some useful stuff in it about social services?

BeebiesQueen · 11/04/2013 09:54

Can I please just have a whinge and a whine here? I'm not having a good day and I just want to cry.

I was diagnosed CFS just over a year ago now. Today I am so tired nothing wants to work. I threw my iphone down the toilet, didnt take the pg test I needed to take, dd1 (2 year old) is being naughty, shes now sat on the sofa falling asleep but refuses to go to bed (has full on thumping screaming tantrum) have only just managed to calm dd2 (1 year old) down after she was woken from her nap by screaming dd1.

I really could do with a break today but its not coming. I have so much to do but am going to have to accept today is a duvet day for us.

How am I ment to explain this to my 6 year old brother? I'm ment to be taking his birthday present round later. he'll be dissapointed. but I just cant do it, all I want to do is sleep.

I'm so sorry, I've lurked a bit on this thread but never posted and now I m its jsut a whingy whiney post I'm posting through blury eyes. I've not been this bad for a long time :( I hate this, I hate it. I hate it. I hate it.

magso · 11/04/2013 12:39

Hi BeebiesQueen, its fine to tell us as it is. ((gentle hug)). Is there any one you could ring to collect the parcel and perhaps give you a little help. I hope you got bothh dds knapping and are now resting. Its so hard to pace yourself when children are too young to understand.

I listened to the radio today and heard the talk of having compulsary meetings fo workers off sick for more than 3 weeks. I wonder how this will work? There will clearly be people far to ill to leave their beds never mind travel to interviews. Any way after all the talk I started to wonder if I was treating myself as ill - but then remembered it is only since I accepted that I AM ill and must not carry on till dropping literally that I have started to recover. Just thought I'd say that in case any one else is doubting them selves.

Its a sad fact that SS only offer help when the situation is desparate, but the situation could get critical if the main carer become too ill to manage. They did eventually help us (it took nearly a year after I came out of hospital to get it all running smoothly) -ds (13 +autistic) now gets monthly respite and we get a couple of hours DPs to pay a carer to do things I physically cannot (like chase after him at scary hospital visits) or for support at home. Its not much but it makes a difference.

BeebiesQueen · 11/04/2013 12:58

Both girls have napped and are now awake again. I managed to get a little rest in between my girls tag teeming their nap.

I've just realised its 1 oclock, where has the morning gone!

weve just done a massive house move so that I have family near by to ring and ask for help on bad days, except I'm too stubborn to ring and ask for help Blush I've also made an appointment with the CAB tomorrow (although I also have a dentist appointment tomorrow so dont know about doing both) to see about claiming pip and maybe putting the girls in nursery 1 or 2 days a week or gettign a cleaner so I dont have to stress about that too, but I doubt I'll get far with the claim.

BeebiesQueen · 11/04/2013 13:01

magso I know about the doubting thing. Its only recently I started admiting to people how ill I am and turnign things down because I'm ill. Before I would push myself too far or make up an excuse because I didnt want to seem so weak. although they knew I was ill, no one knew how ill.

and it was only on monday I told my therapist who I've been seeing for a year about my illness! I think I'm finally starting to accept and come to terms with my illness.

Badvoc · 11/04/2013 13:23

Argh
Nw my teeth are falling apart too!
Got an em appt at the dentists tomorrow :(
Bugger

magso · 11/04/2013 14:20

Oh no! Badvoc. Hope your teeth can be sorted without too much work. Are you sensitive to ?adrenaline too - I now ask for an adrenaline free LA if needed. Well I think it is adrenaline - now I come to think of it I'm not sure. Good you got an appointment so quickly.
Beebies I hope you can get some help from your family.I know how difficult it is to ask, when you are not critically ill, but chronically ill.

Badvoc · 11/04/2013 14:24

Yes I do have adrenaline free.
Still makes me feel wired though :(
I have a feeling it's a big job :(

fuzzpig · 11/04/2013 15:09

Oh no badvoc! I have nightmares about that - at least once a week. Every time I think "all the other times it was a dream, and this time they are really falling out!!!". Shudder. Hope it's easily fixable.

Welcome Beebies. Hopefully you'll find this thread really useful in helping you come to accept your illness. Moving must have been really stressful.

I've done two days (4hrs each) in a row and am done in. Off tomorrow but on child wrangling duty as DH is working the next three days.

Badvoc · 11/04/2013 20:09

Thanks fuzz.
It's really throbbing now :(
Bloody hell.
Can't afford root canal. Itll have to come out :(
Gah.

fuzzpig · 11/04/2013 20:43

Oh no that sucks :(

Can I ask a seriously TMI period question please. Am very Blush.

So my period arrived at last (4 days late!) and for the first time I had a bath as DH ran me one (usually I stick to showers during period).

Erm... Blush there were a few clots in the bath... Only little but I was Shock and a little grossed out TBH. Normal?! Or...

CrapBag · 11/04/2013 20:47

I've never actually posted on this thread before although I did find the spoons therory very interesting, shame that when I posted the link on my facebook page no one was interested. Sad

I have had M.E./CFS for about 11 years, been on incapacity benefit for a number of years now. Had assessment for moving to ESA and they have told me I am fit for work without me even having a medical or them getting a report from my doctor. Angry

Has this happened to anyone and what did you do or do you have any advice for me? I really can't work!!!

CrapBag · 11/04/2013 20:48

fuzzpig I have noticed some small clots before during my period. I do think its pretty normal, I did have endometriosis though so I don't know if that is linked to it.

buildingmycorestrength · 11/04/2013 21:13

Pretty sure it is normal to a) have clots and b) be told to go back to work first time and have to appeal.

Badvoc · 11/04/2013 22:23

Fuzz...I have always had them.

Ledkr · 12/04/2013 07:17

Do you mind if I hop on board? I have hyperparathyroidism which causes me huge fatigue and depression too.
It's taking a long time to treat as its bit straight forward as you are supposed to have a tumour on one of the para thyroid s but of course I don't so now waiting to see endocrinologist in may.
I work part time and have an 11 and 2 yr old dds so just have to push on.
I have had some success with supplements but very expensive.
I'm just trying to haul myself out of bed now as I can hear the day has begun Grin

fuzzpig · 12/04/2013 08:07

Welcome crapbag (friends fan? princess consuela banana hammock? :o) and ledkr Thanks

Thanks for reassurance re: clots!

That really shit about the ESA and yes I believe it is very common. Somebody did tell me the statistics when DH went through it (he had a prolapsed disc) and I was pretty shocked. It's like they are trying to screen out potential scroungers who won't bother appealing Hmm never mind that having to go through appeal causes massive stress to genuinely vulnerable people. Angry They also review it regularly - by the time DH had his tribunal (and won, thank goodness, or we would've had to pay it all back) he got a reapplication letter literally the next day!

buildingmycorestrength · 12/04/2013 08:58

'If you have trouble remembering my name just think of a bag of crap.'

Man, I loved that bit.

CouthySaysEatChoccyEggs · 12/04/2013 09:51

Ugh. I'm going through a DLA appeal at the moment. I applied, waited 4 months, got awarded MRC LRM, then just 4 weeks later they did a 'reconsideration' and stopped ALL my DLA.

Have a letter though now that might help my appeal. Am posting all the bits out today or tomorrow.