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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:
buildingmycorestrength · 02/05/2013 14:44

Grockle it may be that being in hospital will give the professionals the kick up the arse they seem to need.

I'm bringing you some Thanks and hoping you improve soon.

magso · 02/05/2013 15:34

Grockle hope you get some answers, and hope you are soon feeling better. Its always best to check out chest pain. I hope however that yours is a false alarm so to speak, but that you get all the drs trying to get you properly well.

Original poster
Grockle · 02/05/2013 16:13

Thank you. It's been a long, long day. I have a throat infection again but I don't have preicarditis as my gp thought but probably costochondritis which causes pain like a heart attack & may well be linked to my fibro. Lovely. Home now with meds & bed. My sister is doing karate run tonight so I can stay home & sleep rest.

My legs hurt so much & I'm so breathless when I walk, it's all a bit of a nightmare.

Building, what good news. I'm glad it helped.

Good advice, Parsing Fancy... especially planning in advance what you'll say.

DameFanny, I think we all struggle with pacing.

Gallifrey, I'd be majorly pissed off with DH for that Angry

Magso... I did write to my rheumatologist. I'm sure he'll be thrilled to read my letter!

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gallifrey · 02/05/2013 20:38

He was obviously having a bad day yesterday he isn't normally such an arsehole!!

BreastmilkCrucifiesAFabLatte · 02/05/2013 23:02

Hi again. Grockle I'm glad you werent having a heart attack but sorry you having the pain.

Hi Smile I think weve met on a few threada before. Sorry you're in pain too.

I have fiiiiiiiinallllllllllllly (IYSWIM) made a GP appointment to discuss the pain in my legs. The task now is not to cancel it. I am 98% sure the pain is mostly psychosomatic but there's still the bit of me that wonders if I have RA on top of everything else Sad

BreastmilkCrucifiesAFabLatte · 02/05/2013 23:02

Oops Blush Biscuit

Weegiemum · 02/05/2013 23:48

I really feel a weight has come off me posting here :)

I didn't know there were other people who understood spoons!

Today I used them up by showering, dressing, coming dowmstairs, (then I cuddled the rabbit which probably gave me a spoon back he's a big softy), making myself eat, having to go to the shops (because I really hate having to ask my dc to do that for me, I'm determined they will not be my carers!).

I really try but I'm so tired! It doesn't seem to matter hpw much rest/sleep I get, I'm just always wiped out. Apparently this is common with neurological disabilities. But I had to find that out for myself, the doctors say it isn't (I only trust one doc - my dh! - but he can't treat me. However, he was at medical school in the same year as my consultant, so that keeps posh hospital doctor on his toes lol).

Tonight I'm wiped out but really can't sleep. Go away, leg pain!!!!

Original poster
Grockle · 03/05/2013 01:42

It's lovely, isn't it weegie? I hate that DS is my carer. I don't ask him to do what I'd ask of an adult but still, it's not fair Sad He's going on a respite break at half term with Young Carers. I don't want him to go because that's my time with him but it looks amazing & sadly, I think he needs a break from me.

We have a little private FB group, if any of you want to join us? PM me & we can add you.

I can't sleep. Again.

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gallifrey · 03/05/2013 09:56

good morning everyone, hope you all are feeling a bit better today. Sending lots of love and spoons xx
weegimum I had a lovely bunny rabbit cuddle yesterday from our babbit jerry, not a typo btw he is a babbit ! xxx

lisad123everybodydancenow · 03/05/2013 18:38

This reply has been deleted

Message withdrawn at poster's request.

Original poster
Grockle · 03/05/2013 19:16

No idea, Lisa, sorry. No-one is interested in treating me so I don't bother any more. I have a throat infection which has now moved to my chest but the GP who saw me wasn't concerned & the A & E drs weren't bothered either. It might have been because they were dealing with my heart but if I went to the dr every time I had a sore throat or felt crap, I'd need to move in! Maybe call your GP (or a local one) & explain? Hope you have some luck & feel better very soon. And enjoy your holiday x

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BreastmilkCrucifiesAFabLatte · 03/05/2013 19:18

The GP, probably... whether or not you definitely have lupus/Hugh's won't determine how your throat is tonight.

I'm sorry though you're going through this. Seems as though you've had a crap time of it, health-wise..

Original poster
Grockle · 03/05/2013 19:41

I hope my post didn't seem bitchy... I'm not sure it came out the way I intended. Blush I hope you get it sorted, Lisa. The last thing you need when you are going away is to feel crappy with this kind of stuff. Sending you spoons x

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buildingmycorestrength · 03/05/2013 20:19

So sorry you are having to deal with this, newcomer-who's-name-I-can-no-longer-see-on-screen!

Grockle I knew what you meant. Unfortunately those of us who have lived with these conditions for a while know that you are largely left to get on with managing symptoms as best you can. In the early days it is a nightmare figuring out what is a proper symptom of the condition and what is something passing and what is actually and entirely separate illness!

Having said that, if you (newcomerBlush sorry) need antibiotics or something, not sure whether it would best to try to call consultant (or at least leave a msg with secretary) AND GP.

Can't hurt? GP might know what to do, but if the consultant has advice so much the better.

buildingmycorestrength · 03/05/2013 20:21

Lisa, sorry for calling you 'newcomer'. Hope we can help a bit here. Blush

lisad123everybodydancenow · 03/05/2013 21:52

This reply has been deleted

Message withdrawn at poster's request.

magso · 03/05/2013 22:54

Lisa sorry to hear you are unwell again. You've had a horrible time by the sound of it so I wonder if it would be best to see a local GP or out of hours service in the morning. In the meantime gargling (rather than swallowing as normal) dissolved pain killers (preferably the soluble type) might be helpful for the sore throat. Sounds good to be tucked up warm! I had a horrible year (4 years ago now) with long hospital stays for pneumonia and everything going wrong -which took ages to pull back from. Its so frustrating with all the ups and downs.

Grockle how are you today? Hope the ribs are behaving better. Have you found leaning forward (or other positions) helps?
Weegie sorry your leg is still so painful. sprained ankles can be so painful. I presume with a doctor DH a break has been ruled out?
I am still taking the D-ribose - it is a much higher dose than in the mito support tablets you tried Arbitrary (or was it building I'm easily confused) but I have not got to 6 weeks yet (when benefit ceased for you) so will reserve judgement. I would like to loose weight and deliberatly taking 3 spoons of the stuff (ribose is a sugar)seems contrary!

belleshell · 04/05/2013 04:39

marking spot.... need to try that thing called sleep again will be back at a more normal hour!!

Original poster
Grockle · 04/05/2013 07:45

How are you today, Lisa? I don't have a everything, heat thing thankfully but in bad awful chessboard last week & spent a day in.hospital whike they worked out what it was

have woken up this morning feeling like I have been in the washing machine with a pile of bricks. I guess I did too much yesterday. My chest feels terrible & my voice has gone. I never get chest problems. I am breathless before I've even got out of bed. I am not convinced that the drs couldn't have given me something to help.

OP posts:
fuzzpig · 04/05/2013 11:12

Sounds like you need to go back, chest problems can be viral so untreatable with ABs, but equally they might not be! I got fobbed off last year when I went to the urgent treatment centre with breathing difficulties, after 2 rounds of ABs not working. Mardy cow Triage nurse told me to take paracetamol Hmm - I went straight to the walk in GP centre, where the GP said she was really concerned and thought I may even have pneumonia and gave me stronger ABs and steroids as well as booking me an urgent X-ray. Wish I'd complained about the triage nurse now. That was the illness that triggered the severe ME symptoms :(

Welcome Lisa, sorry you have been through such a scary and horrible time with your health. Hopefully you will find some comfort in our friendly group Thanks

I feel so crap today. Not in much pain (particularly compared to yesterday when I was working my 3rd consecutive day) but just sad and listless. I was so looking forward to a day of just being at home with DH and DCs but he got asked to work at a far away store. Good opportunity to make an impression - turns out the neighbouring area manager asked for him specifically Shock - not bad as he's only been working a couple of months! - and of course we need the money but I feel ridiculously lonely and clingy and pathetic and unable to do a damn thing :( DCs are whingy as hell. DH asked DSDs to come over to take DS to a party as I can't get there Blush I feel so embarrassed asking them to do it and embarrassed that the house and I are in an even worse state than usual. Thankfully DSDs are old enough not to need entertaining (quite happy with use of the laptop :o) and they are lovely girls and great with the DCs but it feels like such a boring waste of a long weekend (for them as well as me and DCs), and I can already envisage that I won't feel in the slightest bit rested by the time I go back to work on Wednesday.

Rant over Blush

DameFanny · 04/05/2013 11:19

Anyone read this today? I'm very tempted....

BreastmilkCrucifiesAFabLatte · 04/05/2013 11:28

Hello. Lovely sunny day here this morning. I've got a friend up for the weekend which is fab except that her fantasticness sends the DCs all hyper - DS has been up since 4. I need more spoons...

BreastmilkCrucifiesAFabLatte · 04/05/2013 11:35

And yes, I am very tempted by modafinil. But it's a risk I wouldn't take whilst breastfeeding.

belleshell · 04/05/2013 17:48

im back at much morte normal hour, been wide awake all week at about 4 am, but actually got up this am cos i wasnt in work..........my plans to try discuss alternate fridays has gone to pot, as i have been asked to cover a session in the gym for the heart problem patients... fab opportunity crap day for it to be on....

we have a house full of kids all weekend which i love but actually all i want to do is go to bed.... all girls from work are out on a night out around town tonight.god i miss my old life but a night on the town would put me in bed for a week!!! oh well a glass of wine and early night it is then!!

what have you all got planned this weekend xx

Original poster
Grockle · 04/05/2013 18:55

Oh fuzz, that's shit. Sad I sometimes think about complaining but then it seems like such an effort... I do always make a point of reporting & thanking really good treatment or service. Great that DH was specifically asked for.

I won't feel rested by Tuesday either. We have no plans for Monday - maybe a slow walk around a national trust garden nearby but nothing strenuous. And on Tuesday, I have a school trip to a farm/ soft play place... all day out. And, with my children, it is stressful being in public all day as they are prone to spitting, biting, kicking, hitting & lying on the floor and refusing to get up and people tend to stare Sad

I now have a chesty cough... I told them on Thursday that I had it coming - I could feel it.

Hope you all have a lovely weekend.

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