Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

Sorry for worrying you, fuzzpig. In the borough I work in, they have been very fussy about the DLA forms. I just didn't want you to waste any effort as I know how draining those forms are.

No probs crash, it just gave me a kick up the bum I needed :)

I have been up since 3am I survived my day at the theme park & apart from my back spasming at the end, I did well. Shattered now though but waiting for tesco deliver so can't go to bed.

Magso, could you try a pilates DVD? A lot of that is lying down.

Glad form is ok, Fuzz.

Hello everyone. I've been searching for the thread as it dropped off my TIO list.

Well, I'm off sick today :( that didn't take long did it?! I'm completely exhausted and had problems at work yesterday getting up the stairs and was feeling very painful. Went to get up this morning and I couldn't get downstairs! Well, I did with difficulty, but my legs and arms hurt so I rang in sick.
Still in my pj's. Got up for about half an hour, but I'm sitting/lounging in bed and I hurt so much.

Grockle a pilates DVD is a good idea. I was going to a beginners mat based pilates class, so I ought to get back to it. I hope your back improves, and you won't be paying for your theme park duties for too long. School trips are exhausting even when fully fit ( I used to have to accompany ds before he moved to sn school).
Fuzzpig I thought it was normal for young females to faint easily. My dsis was the same, so I just thought it happened to everyone. It seemed less of a problem as I got older until that long spell in hospital. I wonder if I have had OI all along and just upgraded it to POTS on getting ill. OI would worsen with long debility (and muscle deterioration)I think. I thought I was doing better but have the familiar weak achy thighs of beginning to go, are back again. I have tried to modify my diet to a paleo diet which naturally has less salt.
I bought an inexpensive BP monitor (mainly to check ds as he is on meds that need this monitored but is very hyped at drs and difficult to get an accurate reading- the new paed got a high systolic reading for him - but checking at home it is fine). Any way my reading definatly drop going from flat to standing, - which they shouldn't do, but the HR increases massively.
Solo nice to hear from you, but sorry you are too ill for work. I always used to use being able to get down the stairs as a criterion for being well enough to work. Now it doesn't work!
Crashdoll how are you today? Is your leg still swollen?

Thank you for the good wishes for my knee. It is still swollen, although I am able to move around more. The GP poked it, confirmed it's a cyst and I have an ultrasound scan in a few weeks. I've got rheumy clinic next week anyway. My other joints are swollen, so it seems the cyst is just part and parcel of a flare up. I'm feeling very low and frustrated at the moment.

Oh crash, sorry about your knee & swollen joints.

I'm struggling to get started on gabapentin - it's knocking me out completely & I've only been taking 1 a day - I need to be on 3 a day

I survived our trip but used my stick which I've never done with people from work. My back went into spasm at the end but I was able to get back on the bus & sit til it stopped.

Busy weekend as my dad is here. Well, he'd staying with my sister round the corner but we've been doing stuff together. Yesterday I went on a date(!) then took DS to the shops, then went to my sisters for a family BBQ then came home & had friends round. Amazingly, I feel ok today. Taking my dad & DS to run around in the woods this morning then chilling out at home, I hope.

How is everyone else?

Ooh, a date! Do tell :o

I'm off to the O2 this afternoon to see Despicable Me 2 and meet some other MNers! I wish you were all going too! At least the journey is pretty simple and I get to sit down for most of the event.

I'm excited but nervous. Yesterday was hell - school fetes aren't exactly my cup of tea but DD's club were performing so couldn't miss it, and DS was a right little monkey and it all got worse at bedtime. I'm really tired and achey now so the plan is to relax as much as possible til we have to leave.

Fuzzpig, me too and I really don't have the energy! I need to put some makeup on so I look half decent. It also worries me that I'm actually off sick from work, so feeling guilty and worrying in case I'm seen IYSWIM?

Hope you all enjoy Despicable me 2. Solo, you shouldn't feel guilty... you're sick, not dead. But I totally understand - I always feel guilty if I do anything when I'm off.

My date... was nice. We seemed to get on well. He's texting me lots. We have quite a few things in common, same sort of values & he seems quite a positive person which is a nice change. I'm in no rush & it feels weird to be in contact with someone more than I am with exP but it's nice. Baby steps though.

Hope everyone else is ok

Were you at the O2 solo?!

Date sounds lovely grockle :)

I know Grockle but I can't help it. Film was good though...glad your date went well. I too am in the first steps of dating a man

yes fuzzpig I was there :) just me and Dd. You couldn't miss Dd, she was wearing a long to the floor cotton dress and had a curly low down ponytail.

Aw solo wish I'd known, it would've been nice to meet you properly! Feels like a missed opportunity! Film was amazing though, we all laughed loads and it was a great day despite being very tiring.

We got there really early and when the huge crowds were gathering round the minions we just sat at one of the colouring tables - me, 6yo DD in floaty yellow dress, both 15yo DSDs wearing different Nerd hoodies :o

Oh and I get the guilt too - even on my normal days off I worry about being spotted - because I got my hours reduced and I worry that people will think if I'm well enough to be out and about I'm well enough to be at work and therefore I shouldn't have reduced my hours... [paranoid emoticon]

Yes, I spent a while sitting by the colouring tables too. I was the last into the cinema as we went to the loo before going in and was almost last in the 'going in' queue anyway.
My Dd is 6, but looks about 10 as she's so tall.
I was hoping you'd pick up the Mn message on your phone, but then when I tried to get Mn on my own phone, it just wouldn't connect in time.
I'll put a pic of Dd and the minions on the D.M.2 thread and you'll see her anyway :)

Hi all,

Well im just waiting for the BIG CRASH after a month of lots to do!! its been a fun month but im ready to slowwwwwwwww right down. My weight is becoming a real issue!! I DONT KNOW WHAT TO DO!!!
Diets aren't working, and I have really tried, its the lack of exercise component... so I have decided I will try add 10 mins a day exercise into my routine... lets see how I go.

Grockle........date, wow good on ya.

love and spoons to everyone

xx

Belleshell, may I point you over HERE

Ooo, exciting, solo!

The guilt & paranoia is unfair

I can't advise re weight. I'm not overweight but have put on lots. I've now decided to try to be wheat-free in the hope that it will help ease my pain & fatigue. We'll see.

What we like eh Grockle?!!!

I think I've found a new and exciting way to lose weight...braces!! OMG!

I am outrageously tired this week. I don't think it's because the London trip was physically tiring, but because I am overwhelmed by too many people. On Monday all my little OCD/Aspergers type traits blew up to epic proportions, and I made heaps of mistakes all day, which always happens when I'm about to melt down emotionally. Then yesterday it was the induction meeting for DS (starts reception this year) and the hall/classrooms were packed and hot and loud and I couldn't talk to anyone :( I ended up in tears last night just because I have been around too many people. I hate my brain.

I am trying wheat free too Grockle as part of a stone age diet - not to loose weight (although I would like that too) but to try to get less unwell. Its all fairly new to me. Having failed miserably at giving up everything on the paleo list (dairy, all grains, all pulses, all preserved foods) I decided to scale it down to wheat free for me and reduce the others, we already avoid most processed foods. I am 3/4 stone heavier than before illness. I can't advise on weight loss as I can't loose it either, despite fairly low carbs.
Best wishes with the date. It sounds exciting!

Braces sound like an extra burden for you Solo. ds has finally been approved for braces- twin blocks to start (we have struggled for years to get the above average teeth cleaning required despite ds resistance due to his sn), but his weight is on the 2nd centile so was hoping any decreases in eating ability would be temporary. Likely for ds it will be since if it is a nuisance he will just rip the braces out! Now if I could borrow some of ds energy I'd be fixed!

Belleshell good luck with you exercise plan. Hope you avoid the crash. I collected the walk your waist off plan from the weekend papers, and have good intentions....

Oh fuzz I have times when I just can't be around people. The school run will make me panic because people might want to talk to me & it's so bucy & chaotic (huge school with 2 entrances, so hundreds of people coming through 2 tiny gates)

Hope DS's induction went well for him.

Magso, I thought about the paleo diet but I don't eat meat so it seemed very limiting. I can't give up dairy & pulses but we rarely eat processed foods other than cereal.

May I jump in and join you?

I have Fibro, was diagnosed nearly 2years ago but we think it started when I was 18 after a severe bout of glandular fever. It was bad for about 5 years and then I had a remission period before it started to flare up again 4-5years ago. I'm just about coping at the moment - varying between extreme exhaustion, pain or a fluey ache but "ok", I'm only on co-codomol and tramadol, doc also gave me ibrufen (didn't help at all) and amitriptyline (I prefer not to take as I'm totally zombified). The side effects of the tramadol make me feel worse so I have been avoiding them unless desperate but off to see the doc next week to ask for something else as I'm really needing something stronger..

I'm back on a low carb diet (lost baby weight this way) - to help keep my weight down (I'm not overweight but putting weight on) and also to try and avoid wheat, sugars etc. Have any of you tried avoiding nightshade veg/fruit? I keep hearing them mentioned but not plucked up the courage to limit myself any further(!) I haven't noticed any improvement with avoiding wheat or sugar apart from I get less spots (which only started to appear when the Fibro restarted.... & I'm on medication for that as well)...
I'm trying to keep active by walking the dog but I can't do that and food shop for example... and when the pain is bad in my legs.. I can barely walk at all.

Hello all
Just popping in on Fuzzpig's invite!
I have fibromyalgia. It is reasonably well controlled I think, even though I ache all the time ( I can ignore this during the day, it is just at night it gets me) and need to sleep a lot a weekends to "catch up".
I'm self employed, which has benefits and disdavantages wit hrespect to the fibro.
I'm another one here who has just had an appointment with fibro doc who was pretty patronising and unhelpful. He was going on about exercise. I do introduce exercise when I can but he just didn't seem to get that a lot of days if would be a choice between exercise and keeping my business running or exercise and doing the food shop etc. Still feeling angry and frustrated about it!

I've had problem with any drugs and the way they knock me out. I need to be able to drive for work, so feeling knocked out is a real no-no. I currently take 1/4 of a 10mg tablet of amiltryptaline on nights where I don't have to drive the next day and 1/4 tablet of melatonin on nights when I do. I take paracetamol and ibuprofen intermittently when the pain is bad at night (it helps a little) but can't take either continuously as after a few days paracetamol gives me headaches and ibuprofen upsets my stomach!

Three things that seem to have helped somewhat with energy.

Vit b12 injections - I managed to persuade my GP to let me have them even though I wasn't officially deficient - I was on the low end of normal though.
Feroglobin plus tonic ( maybe placebo? but has lots of iron and other goodies in)
Getting to bed early ( say between 9.30 and 10.00pm) I can't always manage this but if I can do it for the most part it does seem to help. My problem is waking up so much during the night ( sometimes about every 90 minutes) and going to bed early doesn't prevent this but it does seem to mean I am more refreshed!

Hello educatin and daisy..........I have CFS, I totally get the been careful with medication. I need to be alert for work, so I manage with co-codamol when I get back from work, but otherwise it is paracetamol and brufen...I have managed to get my dose of amitriptyline and zopiclone to alevel I can function but I still don't sleep...

I haven't exercised this week :( because I haven't stopped.......work kids house, today my legs are like lead!!