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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:
Badvoc · 04/07/2013 07:25

Belle...I am on nothing. I had a dose of bisoprolol and warfarin when I was rushed in but nothing since.
The gp seems to think that hormonal drift could have caused the episode of AF and checking our the symptoms of peri menopause heart rhythm issues do crop up.
I know I have been feeling pretty bad for some time now.
Just hoping the HRT works!
I have had a 24 hour heart monitor and am going for an echo tomorrow.

Badvoc · 04/07/2013 07:25

Fuzz pig...I take a goldy chair to sports day :)

Badvoc · 04/07/2013 07:25

Goldy? Foldy!

Badvoc · 04/07/2013 07:26

I am also looking forward to the hols in a way...no rushing to get anywhere.
Hopefully some decent weather!

educatingarti · 04/07/2013 14:52

Hello everyone and spoons to all!
Daisychicken
5 hours gardening was a spectacular length for me and,to be honest, better that I could ever have managed some months ago. Sometimes 20 minutes has been difficult. I know I have good weeks and bad weeks and my fibro pain is never agonising - just annoying and tiring! I've been struggling much more this week with tiredness than a couple of weeks ago. I think, in general I'm improving a bit at the moment although it is very up and down.

crashdoll · 04/07/2013 18:15

Honest opinions please fellow spooners; does this walking stick look too "oldish" for me? www.surreymobility.com/walking-aids/ergonomic-walking-sticks/ergonomic-folding-stick-pink-flowers/1020

Please don't think I'm being ageist, there is nothing wrong with being an older person but at 25 yrs old, (I look about 17 too!) I would prefer to have something more age appropriate. It is really hard to find a non-bog standard black or grey stick with an ergonomic handle. All the nice ones have the wrong handle for me! I trawled the net for a few hours before I found this one. The crutch is making me lopsided and hurting my shoulder. Also, I don't need all that support anymore which I know is a good thing but I have a mental block when it comes to accepting needing a stick not a crutch. Blush

Badvoc · 04/07/2013 22:18

I like it!

fuzzpig · 04/07/2013 22:32

I like it too.

I have the same worry about using a stick though. I have got away without using any walking aid so far - due to POTS I tend to try and walk quicker, through the pain, because of the dizziness. I also feel that for me (I am not making a comment on anyone else's situation here, purely my own!) it would be like a point of no return IYSWIM? I feel the same way about staying in bed all day. Like if I start, I will end up having to do it all the time. Even though I know that's nonsense really. While I hate my illness(es) I am grateful it's not so bad to have me bed/wheelchair bound and I live in fear of something making it worse. :(

I didn't have the sports day issue today. DCs both poorly and worn out. Had a lazy day including ordering pizza. Blush

I am a bit freaked out this morning. I get those 'head rush' things a lot. They are worse due to the POTS as this causes the low BP and rocketing pulse. Often feel all swimmy in the head IYSWIM. However I had one this evening that was loads worse. I actually blacked out for briefly and fell (thankfully I just managed to swerve myself towards the sofa, I had just got up to put on a DVD). I know lots of people have to deal with that but it freaked me right out. I hate losing control. I ache more now too.

Solo · 04/07/2013 22:50

I like it too!! :)

SelfRighteousPrissyPants · 05/07/2013 07:42

Hi
Staying with my Mum who has long-term neuropathic pain. Nothing much helps her though she's addicted to sleeping pills, she's run out now though.

How can I help her, she has no spoons especially today. Pain clinics say she's too emotionally fragile to be helped (WTF?) and mental health say it's a physical problem despite her regularly trying to kill herself.

Any advice?

gallifrey · 05/07/2013 10:45

I have a stick, I bought a lovely blingy one from Glamsticks, it has diamante's all over it and loads of people comment on how lovely it is and I don't feel like an idiot using it.

gallifrey · 05/07/2013 10:48

I am dreading today we have a picnic at school followed by sports day, I have no idea how I'm going to manage especially with a 2yr old toddler trying to run away at every opportunity!

Badvoc · 05/07/2013 12:48

Well, had my bloods done and echo done....just got to wait and see the cardiologist now...
Been taking HRT since weds and am disappointed I don't feel better yet :)
Am planning an afternoon watching Wimbledon!

LilRedWG · 05/07/2013 13:21

Can I join in please? I have chronic pain but no-one has been able to give me game for it and I feel written off at 39. Currently awaiting a second opinion but not holding out any hope. Sad

neriberi · 05/07/2013 14:07

Afternoon all. I had my meeting earlier today and it went ok, I felt a bit of fraud asking for my hours to re-considered, it was all a bit weird actually. Anyway the HR lady was lovely and very easy to talk too so we shall see.

@Crash, that walking stick rocks! My sister (younger than me) had something similar, she always got lots of fab comments about it.

lissieloo · 05/07/2013 14:14

Lilred, sorry to see you here too. IKHYF, it's shit. My cons is ridiculously unsympathetic.

I had a steroid injection today, into my hip. saw the rheumatology nurse who was lovely, I started crying when she pressed my knuckle (which swelled up in front of her eyes) and blubbed all over her. She was so nice and has sent me away with some fibro leaflets and upped my ami to 30mg.

bleurgh

fuzzpig · 05/07/2013 15:09

I feel really embarrassed today. After what I described in my previous post (which I just realised I wrote 'this morning' in, instead of 'this evening' despite the fact it was past bedtime Blush... Getting so many words mixed up recently!) I struggled into work but basically it happened again. Got really dizzy and ended up dropping loads of stock on the floor in front of customers. :(

Everyone was very nice but I feel so humiliated especially as I've only just returned from a week off. Got sent home anyway and am staying home tomorrow. Am trying to console myself from my shame by reminding myself that at least now they have seen what happens when I'm really ill. But still, I'm gutted, I feel really raw and exposed and vulnerable. I don't like the fact that people I usually have a laugh with have seen me like that.

Welcome newbies. Gosh there are a lot of us in similar boats aren't there :( I am so glad we have this thread. It's such a lifeline Thanks

LilRedWG what kind of pain do you have? Have you got any ideas yourself of what it may be?

Gallifrey how was the day at school? I share your dread of toddler wrangling! DS is such a monkey, he is 4 in August but due to his speech issues is more like a 2yo in some ways, he is very hard to handle sometimes when we are out (and other times is an angel). I am so glad he is going to be in school FT from September!

gallifrey · 05/07/2013 17:47

Fuzzpig bless you, sorry that happened but like you say at least they have seen what happens :(

The school thing was surprisingly ok, I had a picnic with my dd and some of the other mums, toddler dd was ok until she spilt drink all over her trousers and then took them off! She was running around in a t-shirt and wellies! DD1 and her friends were all running around with her so that was good. Then I strapped her into her buggy and she sat and watched the events as good as gold! I'm very pleased with her and pleased that I went now :)

DH is away now until sunday lunchtime and dd1 is having a friend here for a sleepover, they are both 10 and I've told them they need to behave and help me but we'll see!

Original poster
Grockle · 05/07/2013 22:24

Crashdoll, I use my folding walking stick all the time. Mine is purple & flowery. I like the one you linked to. Switch sticks do lovely ones too.

OP posts:
Original poster
Grockle · 05/07/2013 22:28

Hope everyone is ok. Especially fuzz. That's how I've felt when its happened to me at work. The first time, work called an ambulance Blush

A week after my tribunal, I have been awarded low rate care which covers the cost of my cleaner & additional food costs which is good.

I didn't get mobility & I disagree with their reason but I am too exhausted to fight again.

Love & spoons to all.

OP posts:
fuzzpig · 05/07/2013 22:38

Grockle I'm really glad you at least get some DLA (and LRC is all I'm expecting to get myself, if anything) :)

Just the fact you receive DLA may open up some other helpful things - my outreach worker described it as a 'passport benefit' in that it can give access to stuff like free bus pass or something (although that might be only if you get mobility - but either way, definitely worth looking into that sort of thing) xx

Solo · 05/07/2013 23:20

Hi all, just checking in.x

magso · 06/07/2013 12:22

I like that stick Crashdoll, its nice and youthful and fun. I use telescopic walking poles which I had long before I got ill, but they are very tiring on the wrist, if you use them for any more than balance.

Grockle it must be disappointing to not be awarded any mobility DLA, Flowers but glad you got at least the LRC element. I hope that other support will now be assessable for you. I wonder what is happening with mobility as I know others who have not got what they would have got a few years ago, so at present the system is very odd and frankly unfair. Its difficult whilst the system is being modified. I do know of course that DLA is going.

I have a cold and was very wobbly at work - forgetting my password and all sorts of sillyness. My brain has enough trouble without running a fever. Fortunately my colleagues were supportive. Its odd how upsetting it is when things go wrong. I suppose it feels unprofessional to be anything less than on the ball, so feel vulnerable to criticism when illness causes difficulties. Fuzzpig you had such an upsetting experience at work. I hope you manage to rest and recover.
Today dh has taken energetic son out, whilst I rest up, and get through the washing mountain at a leisurely pace.

fuzzpig · 06/07/2013 17:46

Today hasn't actually been too bad. DH working but DSD is here (she would've been babysitting if I was working) and I managed to sit outside for a couple of hours while the DCs played. Thankfully DS seems to have accepted that he needs to stay within a certain area etc and hasn't tried running off.

I still feel very dizzy though. I am supposed to be visiting my friends for his birthday tomorrow - haven't seen them since his last birthday! Last time it was when I had already had the first bout of chest infection but it was before it came back and got worse. It's a 2 hour (but relatively easy) journey. I don't know whether to go or not. I miss them :(

buildingmycorestrength · 06/07/2013 19:18

I've been looking at the Gupta Amygdala Retraining program. I had PTSD and it seems like it might be a good thing for me to try,. Has anyone else heard of it?