Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

Morning all. My "what hurts list:

neck and back of shoulders
lower back
collar bone area
wrists
hips -especially left one

Had a very tossing and turning night!

Telegraph newspaper

my ouch list

Headache
shoulders, (feel like they are touching my ears!)
3 fingers right hand
both wrists
tummy ache that wont shirt
lower back pain
lead legs

on plus side I have been out of bed and in work all day! ita all work and bed these days

hi all coming to join you on here i have been unwell since January. the Dr is looking along the lines if cfs/me or fibromialga. I've been lucky enough to return to work but do nothing else. i'm very fortunate that my husband has stepped up and taken over most of the work in the house and with the kids. he is out of work at the mo so it makes sense as i need to bring the money in. finances are very tight as i used to do a lot of overtime but can only about manage my normal shifts and i now have to make sure they are spaced out and not all together ( my god that nearly killed me doing them together) i work as a health care support worker on a busy surgical ward so work is not easy. i have 5 children between 17 and 6, one off whom i have been trying to home educated, unfortunately that has been effected by my illness.
my main issues are pain and aching, mostly in my legs, well anywhere between my hips and toes really. this has resulted in a fantastic limp in work and patients offering me their bed lol. fatigue after a 12 hour shift i can sleep for a good 14 hrs, and then still doze in the afternoon and back in bed by 10. i also feel very cold during bad days, have to wear sunglasses to leave the house, everything is so loud now, my brain gets muddled and i forget things i have said or done on bad days there is more but i cant think of them right now. it started with a cold in January, i took 2 months off work, but couldn't afford any longer ( even though i needed it).

anyway enough about me i have another link that was a good read
batsgirl.blogspot.co.uk/2008/04/gorilla-in-your-house.html

i took my gorilla to work for 6 hours this morning. he didn't like it lol.

Welcome foxy - I'm off to read your blog.

I have so many appointments: CAMHS for DS as he's not coping, Psych for me tomorrow then optician for DS then my tribunal. Then physio, exercise group, TAC meetings, transition meetings etc. I'm exhausted. I'm now on gapanetin, tramadol & amitriptyline for pain plus ADs, betahistine & supplements yet I am still in pain.

I feel so rubbish. I can't do this anymore.

Welcome Foxy, but sorry you are ill. My advice with the benefit of hindsight would be to listen to your body and stop/sleep/rest as needed. If needs be involve occupational health (OH). I work in a hospital too (as a PAM) and they were helpful in giving guidance to my line managers in allowing me to stop when I had to, and slowly phase in my return (I never got back to my original hours). That was all 4 years ago, and I suspect I would have done better to heed the advise myself, and stop before I had no choice. I am now very much better than I was, but I think I only really started to improve ( slowly) once I accepted that pacing ( stopping well before collapsing) and acceptance were the way forward. OH may be able to advise shorter hours for a while to help recovery if needed.

Belles good you are up - but take it easy!

Crash and Educating, it might be shorter to write a list of what is not hurting! I think my knees are pretty good today.

Grockle I wish I could send you some extra spoons. I had a busy few weeks with appointments and meetings for ds in the last few weeks, and quite suddenly have a clear day today to get on with much neglected paperwork, and to plan for the summer (childcare and activities). Appointments are so tiring. I am tempted to go back to bed. I was a right grump yesterday with poor ds!! But that won't get the jobs done.

I do think that the D ribose supplement (along with vits B and D) is for me helping. I stopped it for a while due to kidney infection and got worse. Could have been coincidence after all was recovering from infection. If it helps at all it is with the lead legs - and the so called post exercise fatigue. It should be called post doing things fatigue!! Pity it is so expensive.

Anyway spoons to all.

Just popping back in while DS is happily playing with Lego. I am really freaking out about the next month. DH is working pretty much every weekend day, and he has his ECDL course once a week (and will need to start doing extra at home if he is to finish by the summer - otherwise he will need to go back in September and that may well be impossible). And now he has an NVQ fitness training course that is 8 full days over 4 weeks. This will all be worth it if he gets a better job of course. But fucking hell it is all happening at once. He also still needs to sign on (not getting JSA now but they still pay his NI as he's not earning enough from his casual job) and with all this stuff going on there is just no time to stop. I'll have to do loads of the school runs. DSS is helping with some of them while I'm at work, but he is working too. My dad can't help ATM as he is with nan (find out about chemo today I think) and mum is working FT.

I've managed my new hours really well for the last six weeks but today I just feel exhausted and sore, yesterday was hectic (work plus DD's birthday) and DH got a surprise extra shift today, my one rest day and both of us are coming down with coldy bugs, we are hugely behind on washing/up laundry, I just can't handle it this week!

Morning all and many spoons today!

I an aching very badly again this morning- I did 5 hours gardening last Friday and I think it was Really Too Much as I have been suffering for it since!

I've got more work than is comfortable to do today so I'd better get on with it -----> (pokes self with pointy stick!)

Has anyone else with fibro/ME looked at or tried any of the suggestions of Dr Sarah Myhill? (Loads online if you google)

5 hours, yikes! Have heard of Myhill but will look later.

I feel so sad today. I've decided to phone DS in sick for no other reason than the fact I can't get him there. I can't walk down for 12, walk home, pick him up at 3 and then go to the park for an hour til DD finishes her club, and then walk home. I just can't. I have only just managed to make him a sandwich and now I hurt all over. I don't know if I'll manage to prepare/eat anything myself today, let alone dinner for the DCs.

I was thinking it will be so much easier when he is at school FT (will happen gradually in September) but I'm sad I'm wishing this time away, it is supposed to be the most important time while they are so little, and it has just been wasted through my bad mental and physical health, and we will never get it back :(

And crying is making my sore throat worse. FFS.

Oh, fuzz. You know we understand.

Stupid bodies, fucking up like this. Smarten up, bodies! We have things to do!

Oh fuzzpig - don't cry!
Make sure you get yourself something to eat as well as ds, even if it is just bread and butter!

It is quite a nice day here. If it is where you are too, could you sit in the garden for a bit with a sandwich and a cup of tea while ds potters outside. Let him ride a trike/dig up worms/ or whatever - that is a really important thing for little ones - being outdoors and having to use imagination to play - but hopefully not too stressful on you. (Hint -they love it if you give them an old house painting type paintbrush (it ruins them so don't use a new one!) and a small container of water - they can "paint" the house wall or patio or "paint" pictures on the wall/paving and it all dries up in the sun and no mess!). Try some calm deep breathing while you are sitting out there!

We don't have a garden, arti - well, we have a lawn in front but it's not fenced in and on bad days I can't catch him if he runs off, which he often does with no warning. On Sunday I managed to take the DCs outside for a bit but it's impossible today. The guilt I feel on days like this is astronomical. At least he will get a mile or so of walking/running when we get DD later. Going to snuggle down with a movie now

fuzzpig
Please don't feel guilty (knows it is easier said than done)1 You are doing what you can. You can't do more than that and feeling guilty will make you feel worse and therefore you'll be able to do even less!
Just feel pleased that he will get some outdoor time/exercise later when you get dd.

Educating, I read a lot on Dr Myhill's site, and is the reason I take magnesium, B12 and vit D. I do think all of these have helped, but particularly the magnesium.
Fuzzpig so sorry you feel exhausted today and worried about a hectic few weeks. I think it is perfectly reasonable to keep ds home whilst he is so little. I expect he enjoys the odd restful day with you to himself. Small children and CFS/FMS do not mix well. We can only do our best, and you seem to be doing rather more than most could. I am lucky in having access to our car frequently (as DH is often away) and ds going to school by school bus (he has sn) but know the school run (even if it wasn't 8 miles each way) would be beyond me most days.
Thinking of you and your Nan today. ((Hug))

Thanks all. We had a nice snuggle watching the lorax (and singing along!) - if there's one thing I do well as a parent, it's cuddles :o

Interesting about the magnesium. I was looking at those when I chose some vitamins but couldn't remember if that was one that had been mentioned on here - I will definitely get some next time I'm in Boots, they were not too pricey so worth a shot.

As building and arti will already know (from another thread) I am reading a book called 'simplicity parenting', I actually got it because of the chapters on physical household clutter - I am gradually decluttering on days when I can manage it - but it is really good in general, and makes me feel a lot better about the fact we aren't rushing around all the time to various activities and days out like a lot of families I know, and actually do just chill at home a lot. I am too sore to play on the floor with DS today (did some of DD's birthday Lego yesterday and my legs knees were agony!) so I'm going to read that for a bit. It's a great book.

Oh and later I am also going to do a giant 4 week planner poster for our wall, with all the arrangements on it for work/childcare etc - we did this when DH had his operation last year and it made everything feel a bit more achievable. That said, I did have an epic relapse a few weeks after fingers crossed it won't be so bad this time!

Hi Foxy and welcome, hello everyone else, I wish I had some spoons to send but....well you know the call.
Fuzz, have you ever read a book called how not to be the perfect mother, I have bought it as a gift for all my friends as they have started families, its a little dated now but it makes me feel ok that I don't have to be perfect, and that its fine sometimes to do nothing, to entertain kids...I was talking to my kids the other week saying that when I was little (I don't want to think about how many years ago that was!!) that my mum didn't take us here there and every where, we made dens in and outside the house, we had adventures , and we learnt how to be bored(well I don't think I ever learnt that, hence im in this frigging mess!!) so remember, you aren't alone, and with so much coming up the stress of thinking about it will take its toll........ive just had the month from hell, and I can say that despite it all been nice or necessary things, after my study yesterday that was the last thing I needed to do........I was so relieved..
Grockle, ((HUGS)) for you and DS, and how is the socialising ;) going!!!

My news is I have stopped taking my amitriptyline........not sure now is the best time after I needed 100mg on Saturday to mANAGE pain, but I need to loose weight and I cant whilst I take ami, I have also started my exercise plan........I have walked a whole 10 mins today (im starting slowly!!)

Spoons and love to you all

Ooh Belles I hope you have not gone from 100 to 0 mg especially after such a difficult month! I am trying to reduce my ami too - taking half instead of one every other night. I managed to loose 2 pounds in as many months (of lowish carbs) so its not exactly helping a lot but at least I am not gaining. 10 minutes walking is good! I started on 10 mins 'snail pace' - now I can walk at normalish pace on a good day.

I honestly can't keep up with the pace of this thread!

Neri it is like that sometimes. Nothing happens for a day or two and then an explosion of chat! How are you?

Don't worry Neri, you don't have to read everything or respond to everything, nobody will judge you here :) nothing wrong with drifting in and out, I take breaks sometimes when even reading posts is too much!

ARGH so I have a cold. Feel like crap. I will have to say something at work I think. I hate having 'just a cold' - because to most people it is 'just', everyone else at work manages to work through it, but to people with illnesses like ours it really isn't 'just' anything! I ache all over.

Sorry you have a cold, Fuzz. Everything hits us much harder than people who are otherwise well.

Neri, it's hard to keep up on here some days. Don't worry though, just pop in & post. No-one is offended if you can't read or remember what everyone else has posted.

Belle - my 'socialising' is ok... I met him again for coffee & it was nice. Not sure it can be anything more though. He's lovely & we get on well but I'm not in a good place atm & it seems unfair to start something with someone when I'd rather die than carry on. Really struggling & poor DS is broken.

Morning everyone. Fuzzpig I'm sorry about your cold but I guess that explains why you were struggling so much yesterday. I think that when you are only just managing, even something like a cold demands energy you just don't have, whereas others will have a bit of "spare energy capacity" iyswim.

Grockle, sorry you are feeling so low! Can you get some counselling or rl support of some sort to help you and your ds through?

I am sadly lacking in spoons today. After 2 achy but reasonably ( for me) energetic days, I feel like I've hit a wall! Still I need to get on with some work really!