Spooning into summer - life with chronic pain & fatigue.

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

theory here www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Yep steroid. Still no relief yet, but I remember it didnt kick in as quick as they said it would last time either. Dose this time is twice what I had last time, so hopefully it'll be worth the wait... :)

Not doing nice things here, sorting out the floordrobe that has been surrounding my bed. Relatively easy job that I can sit down while I am doing...

supposed to be busy packing for our holidays here, but feeling a bit crap. tired and listless and no enthusiasm at all. Missed my meds yesterday and didn't take any till lunchtime today, so no surprise there. Not looking forward to a fortnight of bickering children in a teeny tiny cottage with virtually no garden

I have an extensive floordrobe as well Beyond! It's the must have bedroom furniture dontchaknow

Hope the depo kicks in soon. I usually start to feel better after a couple of hours and have total relief within 24 hours. My disease is mild though, so they keep telling me

Hi, haven't been here for a while... last few weeks have been busy and busier with the kids home. Am still trying to sort my meds - stopped tramadol due to horrible side effects, lowered amitriptyline dosage to 5mg a night (which doesn't knock me out thankfully) so am sleeping better. Tried Buphrenorphine instead of Tramadol - like taking water for me! Just started Dihydricodeine but again.. doesn't seem to make any difference. Apparently sometimes what works is due to genetics and whether we have certain receptors... guess it does make sense when you think about it.. Anyhow, need to go back to GP as co-codomol and amitryptyline isn't enough on its own...

I don't want to wish the school hols away as I love having the kids home but I need a rest(!)

How is everyone today?

Beyond Make sure you rest! I rushed around (work was manic ) but when I relaxed, I got some relief.

Today I went to a shopping centre!! I only lasted 35 minutes but for the last few months, I wouldn't have even entertained the thought. I'm still walking on the backs of my feet but I'm hoping when the swelling goes down, I'll be able to walk properly because it's making my calves ache.

I did bugger all yesterday, am only folding and putting away some clothes and I just spent about half an hour picking hair out of my Big Hair

Has anyone here done a PIP application yet? I'm quite good with paperwork type stuff, but hearing all the horror stories about people being turned down is making me panic a little!

Just checking in. Hope everyone is ok.

Not done PIP but DLA was hard enough. I won't try for PIP.

Made it through the work week, nightmare. Did confide in someone else at work, and turns out he will be my new line manager for part of my job. Good luck that, he was very sympathetic.

My Mum is visiting next week. That is going to be very hard. Woke up early this morning to clean while baby is asleep, because I had a sore throat last night. Sometimes I can nip things in the bud if I clean extensively at first signs of a potential cold -- just praying it works!

hi everyone hope you are all feeling good.
I've been using my wheelchair loads to go out its amazing how much more energy I have left so I can cook dinner etc aftee being out all day. normally if I walk round anywhere I'm exhausted by the time we get in and can barely function.

Hi all.

I'm back and I'm completely knackered! I hope you are all overflowing with spoons.x

Aaaaaaaaaaaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Tired, oh so tired!

Well, thought long and hard about getting my head around applying for ill health retirement . Made a call to the advice line ( turns out a lot of info I'd read on the web was wrong) and turns out I had to do it through my former nhs trust employer. First I discovered they had entered my exit code as voluntary resignation...they fired me for ill health!! Furious and got on the phone to Pensions guy. Turns out he was pretty helpful and filled in all the forms on their side with lots of input from me(!). All on the same day.

Next form I have to do.

Last form is filled by GP so called and offered appt with my favourite GP two hours later! She understands the system and will do her best. Have asked specialist for a report and may ask physio, too.

I know I'm in for a fight even though I know I deserve it. Nice to have such good support. I wasn't expecting it. Any hints gratefully accepted.

Sending spoons, energy and peaceful sleep to you all.x

so fed up with this, we are going on holiday tomorrow to stay with my dm who lives in the algarve. The flights were astronomical £1500 on crappy easyjet and they were the cheapest!
So instead we are getting the ferry from Portsmouth to St Malo and driving the rest of the way, it will take about 17 hours with an overnight stop near Pamplona. DH will probably do most of the driving (I hope!)

I'm really looking forward to it, can't wait to see my mum too :) but I'm not taking my wheelchair and now I'm worried that I'll be needing it and if we are going to be doing lots of walking.
My mum rents her garage out to someone that hires mobility scooters and I'm wondering if I could borrow one while I'm there!

Hope you have a good time gallifrey

Hope the journey is ok & you have a lovely break, gallifrey.

I'm amazingly well but struggling with terrible insomnia. I'm having 2 hrs sleep often & it's making me feel awful.

On Monday, I did something that I feel really uncomfortable... I was out for the day & used a mobility scooter to get around an arboretum. I felt ridiculous but it meant I could whizz around & see lots and still have energy to get home. It was a real eye opener.

Have a lovely time galifrey!

thanks everyone

Grockle I know exactly what you mean and why I tend to use my wheelchair most of the time when I know I'll be having to walk far.
The other day I used it all day and still had the energy to cook dinner, and for the first time in ages my legs didn't hurt when I went to bed xxx

Grockle, my sleep pattern has gone to a few hours too right now. I know that it cycles: No sleep. Sleep all the time. Sleep a little. Feel like a zombie.

If I'm in a 'normal' sleep pattern, I dread going into the cycle and I've been fortunate in that I've not had too much of it for a while. Til now :(

gallifrey Wish you a lovely break.
Matildathecat I hope it's not too much of a fight. It's so unfair that we have to fight for what we are entitled to. It uses too many spoons. Wish you luck!
Everyone else

I have a favour to ask you all please. As it appears crutches are going to feature long-term, which colour do you peeps prefer?

Pink - www.thegermancrutchcompany.co.uk/#/shop/4566316327/Closed-cuff-?-anatomic-soft-grip-?-pink/2958107

Purple -
www.thegermancrutchcompany.co.uk/#/shop/4566316327/Closed-cuff-?-anatomic-soft-grip-?-blackberry/2958114

I prefer the pink ones but I don't want to look unprofessional at work. I work with service users.

Pink is rather nice. Will it work with your wardrobe? I guess you will need to coordinate shoes, bag?! I'm sure elegant crutches will meet with the approval of your clients.

My lovely GP filled in my forms double quick and have asked physios for reports, too. Feeling determined. Actually it's only me that hasn't completed her section. Need to do it really well though. I want my pension.

Pink is rather nice. Will it work with your wardrobe? I guess you will need to coordinate shoes, bag?! I'm sure elegant crutches will meet with the approval of your clients.

My lovely GP filled in my forms double quick and have asked physios for reports, too. Feeling determined. Actually it's only me that hasn't completed her section. Need to do it really well though. I want my pension.

I obviously really mean that! Not sure why it posted twice...

I prefer the blackberry - colourful but slightly more subdued than the 'in your face' pink!

I'm shattered and in so much pain.... I don't want to wish the school holidays away as I love having my boys home but oh, I could do with a rest! Having children home all day uses too many spoons!!!

I cant look at the links on my ipad, but think I'd go for purle over pink as it goes with more?

Daisy, i know how u feel, :( DH has gone back to work off sick leave and i've been struggling the last few days. Hes been on nights too, so literally no help apart from the hour or so between him getting up and going back to work. I'd forgotten how hard it can be.
Nearly chopped my finger off yesterday atempting to peel a bloody potato! I havent cooked a meal in months