Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

morning all and hello to the newbies. I try and read all the posts as soon as they appear, then I go to reply and can't find who I want to reply to it moves that quickly.

I'm ok thank you all, I've had a couple of hospital appointments of late, one for my hands that didn't go too well but its fine, it's a bit too complicated to explain without the help of a diagram, but in a nutshell they can't do anything about the pain without risking further damage to my hands and my health, but I got given some fab advice which I'm now looking into with the help of a specialist hand physio dude (which I'm having to pay for out of my own pocket).

I've also just been told that I have asthma, which despite everything else I've got going on with health, it was the one thing that tipped me over the edge (for some reason), I came out the doctors surgery feeling slightly broken and had a bit of a mini meltdown, which I probably needed because I felt so much better afterwards...

Hi neri...

Grockle I'm just so, so horrified at your situation that I feel like I can't even say anything. I am very glad that you have social services coming round to assess you. I had a look at our council's website after that, and they had a whole section about disabled parents and wanting to meet their needs, etc. I just hope yours has the same and they come round soon and then DELIVER. for you and for your brilliant DS. I hope your sis can be some support as well.

That's exactly it arti, when you are getting by on no reserve whatsoever, something as simple as a cold just tips you over the edge. And I'm sure it is why I felt so sore yesterday. I cried at work today, and although some of my friends knew I was ill I didn't ask to go home. I really don't know if I can go in tomorrow or Friday but I dread the thought of phoning in sick for a cold. With DH doing all his training courses it is just crazy and the school runs are really testing me (especially as DS had a tantrum today) :(

I now have that telltale chest pain that usually leads to a chest infection. YAY

fuzzpig
Try and have as many sessions as possible of inhaling steam. The cold virus and associated infections have an optimum temperature to reproduce that is just lower than body temperature - hence they proliferate in nose and airways as breathing in air makes these areas a slightly lower temperature than the rest of the body. Inhaling steamy air (safely of course - don't scald yourself) increases the temp of the air you breathe, making it harder for the nasties to reproduce while your body's immune system wipes them out.

Also - try and have some honey in some form. The sugar structures in honey are very similar to those in a drug called interferon that is used in hospitals to fight viruses.

Sorry you are feeling rough!

I had a bit of a panic this morning as when I booted up the computer my desk top layout and all my emails etc had been reset and I was worried I'd been hacked/hijacked! I've rebooted everything and it has come back to normal though so I am hoping it was some other kind of blip that won't reoccur. I'm contacting a computer technician to ask advice though just in case!

Heartbeat is slowly slowing to normal!

Thanks arti :) as it happens my dad is up today for school run/babysitting (arranged before I got this bug) and he's gone to tesco with a list including honey - I have it in hot squash/apple juice - and Karvol which I use in steam inhalation! I never knew the reason why those things were good though, that's really interesting!

Obviously I phoned up sick (today and tomorrow) and I am also waiting for a call from the dr about possible ABs. I hate taking them but I always get worried about chest infections - that was how my ME started, with a CI that stayed for 7 weeks.

In other news, my nan starts chemo today.

Sorry to hear about your Nan's illness Fuzzpig but glad she is getting treatment.

I have a friend who is a clinical biochemist. I learn all sorts! He reckons vitamin C is really actually good fo rcolds too (for some random reason that I can't remember!!)

Neri, so sorry that the specialist can't help with your hands, but great you have found a hand physio. Ds had to have hand physio after nearly loosing his finger, and I was amazed it was so thorough. Sorry about the asthma - I am sure you didn't need that too. I have read that vit D is particularly needed by asthmatics, so perhaps a supplement or some extra sunshine would help.
Fuzzpig sorry your cold is making you so unwell. Hope you are resting not trying to work through it.
I struggle to put things away, because my arms go weak/ache so fast. Ds (asd) is forever pulling things out of cupboards in search of things he thinks might be there, so I am forever putting things back- often not very well. Last night DH opened a cupboard only to have half of it fall out on him poor man. He is not impressed by my housekeeping!! I walked too far on Tuesday after taking ds for a haircut. It is only round the corner but he wanted to walk on to the shops- and then through the fields and would not listen to me. He doesn't understand other peoples needs at all, and only understands if I literally cannot stand up. I cannot just leave him on his own - he is 13 (so doesn't look vulnerable as he is almost as tall as little me and certainly stronger) but because of his learning disability needs supervision much like a young child, but can run away faster. After every difficult outing I fear to take him out for a while. Its combination of his disability and my poor endurance that cause difficulties. Even my voice gives out on me!!

Sorry I haven't been around for a few days. I've been whiney and self-pitying and generally just not a fun person to be around.

for all - it's nearly the weekend!

Hi I feel a bit guilty posting on this thread after reading some of your posts I guess my problems are nothing compared to some people's.
I've had pain in my abdomen for just over 6 months now. Had scans and tests and the only thing that they think it could be is an ectopic kidney. Need to have a ct scan to confirm this. However googling the condition it says that there are no symptoms of this.
I'm in pain nearly all the time, my body aches, I feel short of breath sometimes and I'm constantly tired. I work 4 days a week which I find a struggle and my days off I'm usually too exhausted to do anything.
I need to find a way to cope with feeling like this but I guess until I find out what's wrong with me I can't find a way to deal with it :(

Hi Shining, don't feel guilty we all get "IT" fatigue, pain and coping is a nightmare whatever the cause.

Ive been to see Occi health today......no one as ever told me I have a grip on my condition, and actually I think I agree after talking it through today, what the problem is I know what im supposed to do but hate the sacrifice of doing what I should do.....

they did suggest a 3 month reduction of hours to see if it suits me.cant ask any more really can I.

spoons to you all for the weekend, and willies if you have this horrific rain!!

Don't feel guilty for posting...anyone is welcome, whether symptoms are bad or not, current or not, it doesn't matter. Hoping everyone is ok.

Just come back from my tribunal. I cried all the way through... it was awful. Almost 2 hours interrogation &, nice as the panel were, it was really hard.

And, that is the last time I see exP - he came to court with me. I watched him drive away, knowing I won't see him again. Feeling very sad & exhausted.

Wish I could sleep. Forever.

fuzz did you mean wellies? .

Grockle so glad tribunal is over. Phew. You have done your best.

Saw my consultant today. They suspect I have intracranial hypertension (pressure inside my skull) due to a narrow vein in my neck, and I will have some interventions on that basis. Fingers crossed.

hope the tribunal deciders heard you Grockle.((Hug)) - and that you start getting some support at last. You must be worn out!
Fingers crossed treatment helps Building.

ok ladies (and gents maybe) what would you do.......I stopped taking ami on Monday,i really really need to loose weight and cant do it on ami, I have tried..........BUT now im back on co-codamol 30/500, 2 times a day..... .. Now im bunged up swollen tummy, that is sore............ I HATE ME!

:o at willies/wellies (though I feel I must point out, building, that it weren't me what said it :o)

Welcome shining that sounds incredibly frustrating. We can all identify in one way or another with that, it is (unfortunately) something we all have in common, so please don't feel you don't belong here - you are more than welcome!

Grockle do you have to wait long for the decision? When my DH had his appeal he found out straight away, they gave him the letter as proof on the spot. Though it was ESA not DLA and the 'points' were very cut and dry. CFS/ME etc are not nearly so 'simple'. I hope you get good news ASAP.

Nan has had 5 infusions so far and amazingly no side effects so a good sign hopefully

Got the DCs on my own today as DH is off to work. No way I can take them out, the ABs are working but I'm still really weak. Spoons to all x

oh dear I did mean willies..but hey willies will do too :D

it wont let me type wellington boots it auto corrects to willies!!!

Sorry, fuzz, it was that cheeky belle wot said it!

Overdid jobs yesterday. Must be careful today but this gorgeous weather just makes me want to get on!

I find it very hard to get through crashes by thinking ,'It was worth it.' Nothing feels worth it when I'm flat (even if it was really), but I can't do nothing either. Urgh.

Hello all. I'm not feeling good at all today. My entire body is hurting. I had a date on Friday which was lovely (just a pub), and then on Saturday, I picked up the Auris to do a test drive for two weeks; it has shattered me completely and I even cut out Dd's swimming lesson on Saturday because I knew it was just too much :(
I have to do a long trip two ways on Weds and am not looking forward to it, but no real choice...I just know it'll wipe me out further...back to docs on Thurs and was trying to get back to work next week, but I doubt it'll happen...this is a bugger... :(

I went swimming today! :) By 'swimming', I mean that I floated in the pool and did a couple of gentle stretches for 20 minutes but whatever....I DID IT! I am now in need of a snooze on the sofa but I feel positive determined not to let this bastard grind me down.

I've overdone it too, building. Interestingly, it seems to have triggered my insomnia.

Solo, glad you had a nice date. Will you see him again? Hope you feel better soon.

Well done with swimming, crash doll. That's the kind of swimming I do these days.

Feeling rubbish. So low, scarily so.

Hello everyone

I overdid it last week and still don't feel brill but nowhere near as bad. I'm just trying to catch up on housework whilst taking breaks often....(!)

educating 5 hours of gardening??? I can't even do 10 mins without suffering so I'm in awe but no, that's too much! Please take it easier! Hopefully you are ok (or not so bad) now?

Shining - it doesn't matter where the pain comes from and whether its all over aching or full on screaming pain - it's exhausting and hard to deal with. Take it easy on yourself.

fuzz - how are you today?

solo - are you feeling less exhausted today? I hope you can rest.

belles - how much ami are you taking? I've just had a discussion on the low carb bootcamp ( week 9) thread about it. Views are varied but it seems low amounts might not affect weight loss. I haven't lost anything in 3 weeks of low carb'ing and have only just gone back onto ami (GP reduced the dose as I was otherwise zombified on it), I'm thinking its more lack of exercise that's the problem...

Hi, can I join please? I've been ill for 4 years now, started with teitzes syndrome and now my cons seems to think that I have fibromyalgia, possible osteoarthritis and osteoporosis. But he is so... Unsympathetic. He has sent out a letter which I got today, describing my pain as "minimal" I received it on a day when I can't bloody walk, at all. My hips are swollen and clicking, and my ribs are all swollen and distorted. Needless to say I've spent the morning in tears from pain and frustration, and this has made me feel even worse. I'm so bloody tired. My gp is upping my amitrypaline and I'm waiting for a call about a steroid injection. I'm so pissed off and sore.

Anyway, sorry for the essay/rant.

Hello everyone I haven't been on here for ages but wanted to let you all know that I finally have a diagnosis.

I have liver damage, am still waiting for some tests results to come back to determine what is causing it and where we go from here but blood tests and a scan all show damage to my liver.

Only saw the Dr on Fri and am back there on wed to discuss what happens next