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/

I describe it as feeling like you're in the stage between sleep and wake all the time.

Thank you. Theyre all good and, when my brain works, I do use some of those descriptions.

Usually, my main problem is pain & people can see I'm in pain - I walk funny, I look shit. I've been off work again today because I'm so shattered. I was off on Thuirsday & Friday too but went back yesterday. After I called in sick this morning, I slipped down the stairs. I need to go to work tomorrow but I don't know what to say. I am struggling. If I saw my GP, he'd not help. I just feel so bloody lazy - I don't feel terribly ill but bad enough to sleep for 4-5 hours during the day then just lie on the sofa doing nothing - no telly, no books etc. But I can't be off work because I'm tired.

My tiredness feels like lead, as though gravity has been turned up. My brain gets stupid too when its at its worst. Things that should be easy seem insurmountable.

Candy has it eased off today?

Gravity has been turned up! That is brilliant and perfect. Thank you for that.

Charity Christmas cards for ME research are out now, here and here.

Yay, good news here :)
After my DH begged for help the other day, (working shifts and doing everything for me and the kids is killing him :( ) my mum plans to come once a week whenever she is home and help me out with stuff. Shes also having the boys tonight and taking the eldest to nursery in the morning. I'm really struggling atm to get to and from nursery, its a 10min walk thats taking me half hour atm and leaving me dead for the rest of the day.

Proper nursery applications are coming up and I'm stuck. The welsh school (nursery attached) I'd like them to go to is about 20 mins normal walk away. Theres no way that can happen at the mo. Or theres an english school literally across the road. I have my PIP medical at the end of the month, so if I'm extremely lucky they will accept I cannot move at all without huge pain and give me max rate, so I can get a car and drive to the welsh school. But i know what they can be like, so don't want to pin my hopes on that. Hopefully I'll get a decision either way though before applications have to be in... Luckily though, applications for school are still separate even if they go to the attached nursery, so if I do have to go with english nursery, they can still do welsh school if i can get there by then.

Oops, waffled a bit there!

Spoke to lovely pain clinic nurse. Shes recommending me for a longer lasting treatment for the arthritis in my back. It won't help with the inflammatory side of the arthritis which affects me generally but it should help with the chronic pain. She needs to check with the consultant that I'm suitable for it.
Sadly it could be up to a 3 month wait for it. Going to try and see it as a late christmas present.

Ah, i knew there was something else I meant to ask. Both of my feet are bad atm, (toes on one, heel/ankle on the other) so walking is especially awkward and painful. I know it is my arthritis, so should i see the GP? Because theres nothing she can do? And getting there is a pita!

Oybbk, at least 3m is better than 4m. Maybe sooner even if there are any cancellations? :)

Beyond... what a big decision. I hope the PIP medical works out how it should.

OYBBK, that sounds promising.

Dunno about GP. If you can't walk, you need some help, I think! I just saw mine & he signed me off & rereferred me to the ME clinic. Again. Tired of this.

Grockle you are ill NOT lazy.
Beyond the limits if getting there is a terrible struggle can you get a telephone consult? Its probably not suitable but may save you a visit. Good your mum can help.
Ohyoubadkitten, hope it ends up being worth the wait.
When I was first ill it felt like being at high altitude (no energy, limbs heavy, every step an effort, brain fog, headache sore throat - survival only skills) which dh understood!

beyond, when was the last time you saw a consultant? are you under one?

Yeah, i rang earlier, they've made me an appt for asap - beginning of december!

ok. Can your gp get started on the blood tests that might be needed so as to save time?

Candy has it eased off today?

YES! Thank you for asking. The flare only lasted about 5 days thankfully. I'm feeling a lot better. The anti-TNF is really making a huge difference pain-wise and finally, the puking has stopped, so it looks like they'll keep me on it. Praying that I'm on the upward curve again.

Beyond Fingers crossed about the PIP medical and also for the school application. I'm glad you're going to have some extra help. I know it's a struggle with arthritis, I can't imagine how much harder it is for those who are parents.

Kitten Is the arthritis in your spine part of the inflammatory arthritis or osteoarthritis? What sort of treatment is it? It's a shame you'll have to wait so long too.

magso How are you?

Grockle I think most people with fatigue can relate to those feelings of laziness because it's a long-term condition and fatigue is one of the most invisible symptoms. But I can only reassure you that you're anything but lazy.

Yay candy :) that's brilliant!

The spine and si joints is a combo. Osteo is showing on the MRI and I have constant pain through the year. Then on top of it I've got the inflammatory side which affects lots of joints but mostly appears in the winter or when I get an infection and almost always at the same time as my psoriasis flaring. My theory is that the inflammatory stuff has contributed to the osteo developing (I'm pretty young for the osteo side and my back used to only flare when the rest of my joints did)

Pain nurse is going to ask about denervation as the steroid injections were so effective for a little while.

I'm continuing on with the chiropractor treatments, and yes I think it is helping ( but not the bank balance). I think the pain patch helps a little - well it seems to keep the part it is on a little less chilly. Lots of things going on at present.

Hi everyone. I'll need to catch up with everyone's news in a bit.

I went to physio for the slipped disc and she told me I have a thoracic disc which seems to pop in and out and 2 of my ribs had pulled out of place and were rubbing together! Also that I have a frozen shoulder. She gave me exercises to do and to see GP again for more meds. The GP was a bit worried about what was going on but said to wait and see if the exercises helped.

At the next physio appt she pushed on my kidney area and apparently I screamed in pain and collapsed cue an A&E visit!! I have an inflamed kidney, renal colic and kidney stones and the muscles that have been surrounding that area have gone into a permanent protective spasm. So I have been put on 20mg of diazepam a day, full dose co-codamol 30/500, 400mg tramadol a day and the 75mg amitriptyline!!!!!!

I still can't lift ds2, I just feel rubbish and like I am a walking disaster. My brain is all foggy from all the meds and fibro fog!

Sorry I just needed to vent.
Hope you are all having a gentle pain free day

bloody hell helibee that's a bit drastic!

I'm not surprised you are all foggy - its probably only the pain preventing you from being comatose!

Kitten, I do feel like I am watching life rather than participating at the moment. I have tried reducing the diazepam and I am so stiff that I can't even push myself to a sitting position in bed. Reducing the pain meds just makes me cry with the pain!!

How are you? X

At the moment you need to get unspasmed before anything else. Patience grasshopper!

Sore, tired and stupid today. Still I gave somebody the giggles with my muddled words :)

kitten, I keep having the same conversations with people. Apparently I told my husband yesterday that we had to move to Japan because they couldn't defuzzle me there I also told him, after being properly discharged from the hospital in a stage whisper "sssh, don't tell the drs we're escaping" I'm glad he loves me, even loopy me on my high dose meds!

Oh Hellibee! Hope you are on the mend now.

I have been offered a mobility scooter for a week from tomorrow. I'm too embarrassed to accept it, since I can walk a bit. But it would mean I could save my spoons.

Saving spoons is good - hopefully you can use a couple of them for some nice stuff if you can save enough.