Spoonies... friendly support for anyone 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.

Spoon Theory Here

Old thread

Placemaking :)

Hope everyone is well x

Hello, I'm new to this thread, but not new to pain and fatigue.

I have a neuro disorder, anaphalaxis buggered back and most recently Kidney stones and PTSD.
After ending up in ICU for two weeks when they tried to remove the stone, there was an infection behind the stone,which caused septicemia,which led to multiple Organ shut down, level two respiratory failure, intubation and full life support, tracheostomy and a nephrostomy bag.
I still have the nephrostomy bag and have had constant infections,

antibiotics and thrush, not to mention the agony of the stone. I have a full time carer and a district nurse who comes out to change my bagthree times a week in theory in practise it can be three times a day,when the bag comes off, leaving me in a puddle of wee.

I've seen the consultant who gave me the options of
1)Trying again with Laser treatment (been cancelled twice due to infections)
Each treatment will be around 45minutes two weeks between each one.

2. Or a stent then trying to remove the stone that way.this would have to be repeated if not successful, kidney stone is 10cm. If I go for option two,I will need a GA and there's a much higher risk of more infections. And even more risk of infection with a stent in place, that's what scares me, it was in trying to move my stone that led me to ICU,

I'm very anxious about both options, but I'm leaning towards the stent.
Which will mean I can finally get rid of my nephrostomy bag.
I would welcome any advice especially anyone who has or had either of these treatments.

Just checking in on the new thread...
I have quite a lot happening at the moment: new pain killers, new orthotics, new grab rails and raised loo seat fitted at home, and most significantly of all, a date for a hip replacement in less than a month!
I am really, really hoping that if I can get rid of this major cause of pain, I can reduce a lot of the other (probably associated) pain and therefore reduce my fatigue too... Fingers crossed!

I wrote a long post that disappeared. Am really struggling atm.

Bloody hell, onlyjoking. I have no advice, I'm afraid. How long does the laser surgery take to make a difference?

Love & spoons to everybody.

Jesus oj, thats awful :( x

Grockle, great news (on the other thread) about the scooter! I've acknowledged that I need something for a while now, just been putting off doing something about it. But i think tomorrow is the day, dh needs to see the gp anyway, so I'll go with him and ask for the referal to wheelchair services (is that what theyre called?) that ss advised i got. Your breakthrough has inspired me :)

hi there. ive had awful fatigue for a long time now (a few years) and going to docs on wednesday. they always fobbed me off before by blaming it on other things, but those other things aren't an issue any more and its still there and getting worse. i am really hoping they take me seriously... if i exercise at all, or had a busy morning or whatever, i can barely function later. my heads sore. i get brain dead at night. i know what i am feeling can't just be normal stressors, i just want it sorted out, i know theres no cure but at least a diagnoses would take the pressure off.

Oh, good Beyond. I didn't think of going to GP. I may buy my own mobility scooter - I don't need it all the time, only for a few weeks every year but it makes such a HUGE difference. I just wish it weren't so bulky.

I can't remember what I've said on here but I'm not on zopiclone to help me sleep - I am now allowed it every night and, although it helps me drop off, I'm waking up between 2 & 4am and then not really sleeping again so I'm still sleep deprived, although my quality of sleep is MUCH better.

I don't know if I could inject myself. My dad used to but he's not a wimp like me! Hope everyone is enjoying the sunshine.

ME fundraising effort on ITV

www.mumsnet.com/Talk/am_i_being_unreasonable/2057029-To-suggest-the-next-mn-campaign-targets-views-on-invisible-disabilities

Oo, cheers kate, I was just popping over to link and you've beaten me to it

Kids away for the weekend and Dh is on nights. I'm enjoying some time doing sweet FA for once

Hello all, I have CFS and dip in and out of these threads.

Encouraged by Grockle I tried a mobility scooter for a day out today and am hoping that tomorrow will therefore be okay and not spent in bed! Thanks for the encouragement.

Hi all. We took a trip over Easter weekend, and I'm completely beat. I planned a week's holiday off work this week, in anticipation. DH is away this coming weekend and I've been invited to a friend's party -- at first I thought it was perfect, as I'll have had a whole week's rest leading up to it.

But now I'm not sure; I'm still so tired. And it will be a 2hr bus-train-bus journey each way. And the day before is DD's swimming lesson, which without DH means it is a two-bus journey plus a half-mile walk to get there. I'm not sure I can do both of those on adjacent days, and with a 2yo. And the party will be being out for 4hrs just for the transport, plus any time I spend there! But I haven't seen this friend in over a year. But I already know work promises to be really heavy going as soon as I get back, and I want to return something less than exhausted. But I hate not doing things! I want to actually see my friends. Argh! Any advice?

Sorry for all of you in pain :( I hope things look up.

Tuesday night is methotrexate night and so yet again i spent a large chunk of last night on the bathroom floor, dry retching over the toilet, dizzy and having weird hot flushes. It is really not agreeing with me.

Rough day again. Had to be up early to go and wait to be seen by the gp, to sort out my pain meds. As tramodol did bugger all, trying dihydracodiene again. Only one months supply because gp says mtx will be working by then. So ignoring hms problems that will still be there when psa is fixed, ignoring how ill the mtx is making me. I asked what i can take on top if that isnt enough and she pulled a weird face and listed off the meds i take, said i can take them on top. Well thanks, but i do, and it is still not enough
On the plus side, i took ds1 as hes been having growing pains again and shes referred us both to genetics to check for obvious eds. Although i did get the "eds is one of those things that is so rare, most gps wont even treat it once" monologue. She insisted that ds1s legs look fine to her (i say he is knock-kneed, I'll stick a photo on now)
She's normally great, so quite disappointed by todays visit. Did start sorting out wheelchair svcs referral though
Anyway, kids are a nigthtmare and have a headache. DH is in work til about 7

Ds1s knees

I love Spoon theory.

I suffer with a neurological illness -CIDP - Chronic Inflammatory Demyelinating Polyneuropathy. I'm chronically tired (in a way I'd never experienced until 2 years ago) and I've got horrendous foot pain (controlled - partly - by amitryptaline).

Life is really a bit shit. I do my best but there's a lot going on (in hospital every 4-5 weeks for IV treatment, etc) that just makes life hard. I'd like it to be easier but I'm not hopeful!!

I hope it's OK if I am on this thread. I was on a member when it was in general health, I am not a parent.

I have Rheumatoid Arthritis, was diagnosed in 2009. It's fairly severe and has caused joint damage in both shoulders, one hand, both feet and both ankles, in addition to nearly destroying my jaw joint. So, even when my RA is not flared up, I have permanent pain and mobility issues. It is a long and hard slog and I'm on another drug to induce remission. It took them 4 years to get my symptoms settled and then I had a bad reaction to the drug, so I've started new injections today. I'd cross my fingers but they're a bit stiff.

Hi Korma how long since your first humira injection? I had my first this afternoon. It stung a bit but wasn't as bad as other injections I've had.

im sure noone is going to mind candy, there are plenty of nonparent posts in other threads here. Trouble is, theres no disabled adults bit, and if there was, it'd just split the traffic here and it'd be even quieter! I guess as with the children with special needs' area, its either too specialised and too quiet (ie now they have a teens bit too) or too generalised and too busy?

Had a sleep so headache has gone. Still not right, but massive improvement :)

Of course you're welcome candy! :)

Ugh. I tried to explain to my parents again about my fatigue problems. It just doesn't work. Does anyone else just have family that doesn't seem to understand? My mother is saying of course I'm tired, as I have a 2yo. I try to explain that this is beyond that and predates DD. But it doesn't stick. And my father constantly is checking up on things, and is disappointed when I haven't done stuff. I was sorta hoping that telling them this would stop that, but it hasn't.

Still don't know if I'm going anywhere on Sat... DH will now drop me off at swimming on his way out of town, so that will cut that travel in half. But out to my friend's is a big trip. I wish I could just go and be tired the next week, but I know it's going to be tough at work even without being extra tired. :(

Hello I've been around for a while on mumsnet but hadn't found this thread before, ReallyTired mentioned it on the invisible disability campaign thread so I've come to say helloo.

I just printed out a copy of the spoon theory for my carer manual... I hope it helps them 'get it' as much as it clicked for me when I first read it.

Pacing is about being thrown out of the window at the mo though (buggeration and know I'm taking risks)... Moving house and employing new carers and working (they've changed the way they do holiday days and I've run out), and my carer book mostly needs updating for new flat... And then normal life goes on on top and lots of reassuring my ds who's moving house for the very first time. Ooof!

Does anyone else find life overtakes being able to pace and put your body first? X

Hi Miscellaneous. Yes my best efforts at proper pacing can go array especially in school holidays or like yesterday when it took 5 hours to take ds to a hospital appointment and back due to a motorway closure which I did not need to use - but traffic around it just ceased up! Life just gets in the way! Actually I was able to pace better when I was iller due to having not much choice IYSWIM. It must be very difficult moving house and all the changes that go with that. I always find new things more tiring.
I think it is very hard for others (without a fatiguing conditions) to understand murmation. It took Dh a while to understand about pacing, and others further away don't understand at all. I doubt I would have done - until I became ill. It is upsetting when others minimise. When Dh gets cross with me for not doing something I have to remind myself not to take it personally - its the illness that's the cause not me being lazy!
Beyond I hope you are feeling somewhat better - and that the MTX is working- it better be doing some long term good for all the upset it is giving you!!

Just marking my place as this had dropped off my tio :)

to all

Hello

I've been quite ill for 5 weeks now - GP has just signed me off for another 2 weeks and will keep doing so as needed. But this is the beginning of the end for me at work now - I;ve had so much time off, it's dismissal time

I need to reapply for PIP (I get DLA low rate care) but don't know where to start- any ideas? Dr also suggested contacting social services but I'm a bit wary of that. Has anyone had them involved?

Welcome, Face. I'm so glad the scooter helped. I'm debating buying one now but I feel very silly. I can't manage my manual wheelchair.

Yes, miscellaneous, life gets in the way of pacing.

Glad your pain has been better, Korma

Beyond, sorry methotrexate makes you so ill.. I can't tell about DS's knees, I'm afraid.

MN campaign re invisible illnesses is a very good idea.
So glad the mobility scooter helped