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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:
Solo · 26/04/2013 11:20

Hello! just popping in if I'm still welcome to say hello...very exhausted here.

Original poster
Grockle · 26/04/2013 12:55

Hello Solo. How're you?

I'm in bed for 10 mins (much comfier than the sofa). Beach walk knackered my legs, as expected. I've vacuumed because I thought my friend was coming later but she's not so I put the hoover down & crawled into bed! Now have to face my appointment

OP posts:
buildingmycorestrength · 26/04/2013 13:43

Hope it goes well, Grockle You need their help, remember, that is why you are going. Not to put on a good show or show how well you are coping but to get some help.

fuzzpig · 26/04/2013 18:09

Hello everyone :)

I'm more mentally exhausted than usual ATM which is why I'm not posting as often.

I've had a weird couple of days. DH has been working (doing 4 days straight which is exhausting for him too as he's not fully recovered from his operation last year) so I'm doing, like, proper --Mummy- parent stuff. All the stuff I usually avoid because DH does everything. School runs (a couple of nursery mums actually talked to me today! Shock I felt buoyed up by that :)), trips to the shop, bathtime, taking DCs on the bus, cooking with them, and I even went to the park for the first time since my first flare up last year Shock

I feel a bit unsettled and I'm not sure why, because I also feel like I've accomplished a lot and am being the mum I wanted to be, which I never did before even when I was comparitively well. I don't know maybe I'm just waiting for the inevitable crash. I've been careful with planning trips to make it easiest on myself and reducing amount of walking (especially from school to home as it is uphill) but I have to work tomorrow and I have a feeling it'll catch up with me then. :(

Hope your appt was productive grockle xx

fuzzpig · 26/04/2013 18:12

Strikeout fail Blush

gallifrey · 26/04/2013 18:34

I went to the chiropractor earlier he is really pleased with me and I have had less pain in my back, neck and hip since seeing him. Still suffering with awful fatigue and weakness in my legs though.
He wants me to start walking 20 mins a day, but I know if I did that I wouldn't be able to get out of bed the next day :( I'm only this well because I don't do a lot and know how to pace myself.
The other day I had a couple of child free hours and took myself and my wheelchair to the local garden centre and had a mooch about. Was so lovely to be able to look at things properly and stay sitting down and not worry about naughty small children running away!
I managed to find some lovely birthday cards and presents there, and it was easy to get from the car park to the building on my own.

fuzzpig · 26/04/2013 19:39

Argh 20 mins a day is a big jump for someone with a fatiguing illness! It shows how little people - even medical professionals - understand about illnesses like CFS. (Glad to hear some of your pain is going though!)

In GET you wouldn't necessarily start with that much - you start with the amount you can already do without an increase in CFS symptoms. For my friend it was 2 mins a day on an exercise bike! There was no way she could have gone straight to 20 mins. You do that level for a week and them increase by around 20% so the next week would be about 2:20-2:30. She continued increasing it like that and is now comfortably at 30 mins a day which is a massive achievement :)

gallifrey · 26/04/2013 20:34

I can't even walk upstairs without getting really tired and in pain. I have to lay down when I get up there.

fuzzpig · 27/04/2013 00:09

Aaaargh can't sleep, too worried and upset. DH found out today that his JSA claim has been wrong for the whole time (despite DH providing all info asked for and checking regularly if they needed anything else) and he has possibly been hugely overpaid. Just one more fucking disaster eh :(

fuzzpig · 27/04/2013 00:09

Oh and gallifrey my current dream home would be a bungalow! I hate stairs :(

Original poster
Grockle · 27/04/2013 03:47

Oh no, fuzz. Can it be sorted easily?

Gallifrey, what wheelchair do you have? I'm debating getting a new or electric one so I can manage to get out by myself.

Stairs are awful. I crawl up or use my stick to lean on but still need a rest at the top.

OP posts:
gallifrey · 27/04/2013 07:49

I have a quickie gpv (it's one of those cool lightweight ones with slightly angled wheels) and I also have a Days escape powerchair that folds down and goes in the boot of the car but it's too heavy for me to lift on on my own.
I would love to have a wheelchair accessible car will have to see what happens about my DLA!

gallifrey · 27/04/2013 07:50

fuzzpig mine too! I keep looking on rightmove at bungalows x

fuzzpig · 27/04/2013 07:59

We are waiting for a council house, I would love to apply for a bungalow but they are in short supply and (understandably) meant for the elderly and more severely disabled. I will see what happens if I get DLA though. We can't afford to move to another private rent, we are stuck where we are.

I am so tense today - and the last couple of days has caught up with me :(

Really don't know what to do about the JSA supposed overpayment thing, just have to wait til Monday. I've remembered why I don't often start my own threads about benefits etc because I get really anxious that people will give nasty replies and I can't stop worrying about it! Blush

fuzzpig · 27/04/2013 08:56

Bloody hell my skin looks terrible. I mean I've never been particularly bothered but this is ridiculous, I look like a zombie :( my feet are actually grey FFS.

I feel really clingy and pathetic today, I know that's really lame, I am so used to DH being here all the time.

awaynboilyurheid · 27/04/2013 09:52

wondering if anyone can help not diagnosed with ME but seem to have most symptoms apart from pain, tired every day but some days completely exhausted , yesterday v frightening as tried to walk dog round park but couldnt really do it, had to keep stopping.This is a park I would a few months ago have walked round with no effort probably speed walking after doing early morning swim Sad All tests have come back normal low iron and vit d3 but nothing drastic have treated those now but still no energy not the improvement I hoped so much for.
Should I go back to GP ask for diagnosis? feel in limbo people in work say feeling better? (I had a few weeks off complete exhaustion in every way) so its hard to say yes as long as I do nothing! I try to pretend I am fine very busy job, but weekends and evenings I am shattered. Gp said just say med investigations ongoing on certificate but he has mentioned ME on several occasions but really dont know what to do now just no real improvement any advice anyone?

Original poster
Grockle · 27/04/2013 12:17

away, yes. Go back. Getting a diagnosis for something like ME/ Fibro etc is a case of eliminating all other probelms. So it means test after test after test, all coming back normal. It;s a long & frustrating & depressing process.

Thanks gallifrey. I think I need to get a better chair. I really need it now & just can't manage mine. I will google your later. I have the same problem with the car & mine is tony but I'll worry about that later. Being able to get out & not need to go to bed for hours afterwards would be brilliant.

Fuzz, the anxiety re benefits & what other people think is horrible. No-one has openly judged me for applying for DLA & I've never been on benefits (apart from tax credits & child benefit) yet I feel like a fraud & like the powers that be see me as a cheating scrounging single parent who is too lazy to work hard. I wish I could work hard Sad

I feel hideous today. All fuzzy & spaced out & lots of pain. Not sure if it is the effect of AD which I started yesterday or what. I need to make a list of current problems to talk about with consultant on Monday.

OP posts:
Original poster
Grockle · 27/04/2013 12:19

Oooo, I had a question that I forgot to ask.

If any of you had a cleaner who could pop in now & again for an hour here & there, what would you have them do?

One of my neighbours is a cleaner & I asked her if she might be able to help. I don't want one every week, only when I'm really struggling which she seemed happy to do. So I need to work out which jobs I should leave to her.

OP posts:
NeedsTherapy · 27/04/2013 12:22

Away I'm just posting to say I didn't (until recently) have pain.

So tired today do and I just took the girls for a walk along the beach. I walked for less than 5 minutes before going back to the car :(

NeedsTherapy · 27/04/2013 12:25

Bathrooms, giving the kitchen a thorough clean and hoovering the stairs. All things I leave till I'm feeling better and it never comes. Also if you have hard wood floors mopping thoes

NeedsTherapy · 27/04/2013 12:28

I would love things like mirrors and windows to be clean but they just aren't that important!
Cobwebs in ceiling corners there's one that's really annoying me at the moment (just sent dh off to get it!) just little stupid things that aren't everyday stuff.

I'm hoping against all hope (although I fear not) my dal application will be accepted as that's one thing I would try and do with the money. Hire a cleaner!

NeedsTherapy · 27/04/2013 12:28

Oh Blush I name changed btw, not that I posted much before

Kormachameleon · 27/04/2013 12:34

This reply has been deleted

Message withdrawn at poster's request.

buildingmycorestrength · 27/04/2013 13:25

Grockle how was appointment yesterday?

My cleaner hoovers, does bathrooms, dusts every other week (when the clutter has been moved), mops, and does random stuff in the kitchen that I can never quite remember to do (inside of microwave, for instance).

HandDivedRaspberries · 27/04/2013 13:28

I have a cleaner one hour a week, initially paid for with DLA, and she's transformed my life.

She sanitises kitchen and bathroom, changes the bed, vacuums or mops maybe two rooms each week, puts out rubbish and then does odd jobs like accessing a high cupboard, or moving something heavy (even just getting the vacuum cleaner upstairs).

It's definitely most efficient and least effort for me when she does regular jobs though, as she knows what she's doing and where the materials are, and just gets on with it. So even though I could now do some of "her" jobs, I leave them to her and save my spoons for more complicated stuff.