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Spoons! Support thread for CFS, ME & Lupus sufferers

(938 Posts)
Grockle Mon 24-Dec-12 23:30:26

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.


Spoon Theory here

Grockle Tue 22-Jan-13 19:48:15

oh smiling, how is he now?

Hope you feel better soon, Fuzz.

Magso, it's tricky on myfitnesspal... I never know what to put for my work - it is a very physical job, lots of walking, little sitting, lots of bending down & lifting. I've put that on as slow dog walking but I'm not sure that's really correct.

magso Tue 22-Jan-13 20:27:35

How is DH Smiling.
I silpped on icy steps years ago (knocking the triangular bone above the cocyx out of line) which shocked my spinal collumn and gave me some trouble but the loss of function was temporary. Thinking of you.

Grockle thanks. My job is quite active (no lifting) but as I only work one day a week I put sedentary as I rest as much as possible when ds is at school. However I like that I can put in non exersize activities such as routine household chores I am sure we all do.

belleshell Wed 23-Jan-13 11:14:22

i put sedentary too.......... seen as thou im still in my pj...and the furthest i have walked this week is to car and back....i am on AL! well ladies tonight is gonna be fun fun fun. my dd is singing at young voices, which is fantastic, the fun fun fun not is i get to spend the evening sat with her dad and his fiance!!

smilingthroughgrittedteeth Wed 23-Jan-13 11:20:40

Fuzz glad the dr gave you ab's hope you feel better soon.

DP has a severly bruised coccyx, spine and elbow. A broken rib and possible broken wrist which didnt show on the xray so he may have to go back for another xray in a couple of weeks.

He is in so much pain he doesnt know what to do with himself.

fuzzpig Wed 23-Jan-13 13:56:05

Oh no sad sounds horrible. Hope he gets the right treatment ASAP!

I haven't got my ABs yet, DH went down there today and the pharmacy wasn't open because the pharmacist hasn't turned up!

magso Wed 23-Jan-13 15:58:25

Oh smiling! All sounds very painful - and tricky to find a comfy position with the broken rib as well. Would arnica and cool packs help with the bruising? Hope he has some decent painkillers.
Fuzzpig hope you get your ABs soon. There ought to be a duty pharmacist somewhere - even tonight.
Belles good luck with the concert and company.

fuzzpig Wed 23-Jan-13 16:39:12

Have got them now thankfully - DH went back before picking DD up from school. I now feel more fluey than anything though, shivers, aches etc. GRRRRR I hate this

Grockle Wed 23-Jan-13 20:59:01

Ugh Belle - hope your evening was ok. Lovely to see DD singing though.

Am glad you have them now Fuzz.

Iamaslummymummy Thu 24-Jan-13 13:33:48

Afternoon all. Ive been putting off adding to this thread as I think I was hoping it would go away.

Anyway its not so here I am! I have cfs, thoracic outlet syndrome, scoliosis, hypermobility and depression. I feel likethe cfs is getting worse. I seem to be sleeping more and more. I seem less able to do things now. I've been off sickfrom work since November 2010. Got the letter yesterday saying that my contract would be terminated in may and they that were staying the assessment process for early medical retirement. Feels like everything is falling apart

belleshell Thu 24-Jan-13 13:41:45

Oh mummy welcome, despite the circumstances.. We might not have the answers here but at least we kinda know how u feel.... is your job physical? its so hard working and CFS...i feel our jobs give us an identity and make us feel like we belong, but in reality working and CFS is very difficult..

glad your here, and i hope we can at least empathise x

fuzzpig Thu 24-Jan-13 14:13:33

Hello mummy, sorry you have to join us (IYSWIM) but welcome!

Interesting you mention medical retirement, I have had that mentioned to me but turns out you have to be paying into the pension fund, which I had never got round to opting in (I'd opted out when I first started as my contract was only 1 year). Not sure if I should start paying in now.

What work were you doing? Mine is fairly physical, I enjoy it but it's not right for me at the moment. I don't know why I bother going back in when so far I haven't lasted more than 10 days!

Any idea why you are getting worse ATM? (((Hug)))

Iamaslummymummy Thu 24-Jan-13 15:49:16

I work as a business analyst for a bank so not at all physical. However I have to be completely mentally alert and travel. It seems to have been getting worse gradually. I had three lots of surgery in Sept 2011, October 2011 and March 2012. Infections after the last two. The first two were major (rib removal and Kung surgery). Also ds has been dxed with asd during the time I've been off. Just too much stress all round.

Iamaslummymummy Thu 24-Jan-13 15:50:12

Thank you for the welcome btw. I seem to have forgotten the social niceties!

Iamaslummymummy Thu 24-Jan-13 15:53:03

Not being at work also makes you realise that most people are just acquaintances not actual friends which is hard to take. I'm waiting to start a pain management program which encompasses get, cbt, pain physiotherapist and pacing. An 8 week course of every Friday all day. That should start in April

magso Thu 24-Jan-13 23:09:28

Hi slummymummy, I also have a son with ASD now 13. Sounds like you have been through the mill with your health. I agree a lot of the people you speak to from day to day when at work are colleagues rather than friends and when you are ill and off work ( and too ill to get out and about) there is a void. Sounds like you have a lot of therapy lined up.

Grockle Fri 25-Jan-13 03:35:53

Welcome, slummymummy. Sorry you need to join us. I also have hypermobility & depression & am currently struggling with big emotional problems. So sorry about work. Things sound really complicated and stressful for you. Rubbish, innit?

smilingthroughgrittedteeth Fri 25-Jan-13 09:18:30

Hello slummymummy, sorry you have to join us but everyone here is lovely and have really helped me through the last few months.

fuzzpig Fri 25-Jan-13 15:29:41

Aargh feel amazingly shit today, such a drama queen lying down with hot flannels on my head etc blush NOTHING is working, if I had the energy (ha!!!) to go to a&e and beg for a fecking morphine drip I would.

DH has just run me a hot bubble bath, I have been too tired to take one for weeks, in fact I can count on one hand the amount of showers I've had since new year blush

Phoned up sick again and they are so not impressed, I know it's frustrating having someone off sick but it's not like I chose this less-than-half life is it. I think they expected me to get better after the first 'lapse' in summer, I feel disobedient for not obeying them by being better! I wish I had the guts to just go off sick longer term as I do think that's what I need, but I so want to be there that I keep putting myself through it.

DH has got through the first stage for a sales job 22hrs, for the first time when he said "if I get this job you can quit if you want" I said yes because I just can't bloody do it any more. I don't even want to bother with the PT jobs I've been looking at because what's the point I'd just be off sick from there instead and I'd piss a whole new load of people off sad

Fuck sad

Grockle Fri 25-Jan-13 18:43:12

Fuzz, do consider having some longterm sick leave. It would give you time to slow down, not be stressed and to get better. There's be less pressure on you. By going back each time while you are still not properly well, I think you're just delaying the inevitable - more time off. Don't make yourself ill & miserable for the sake of a job. I know it's easier said than done.

Good news re your DH. Hope the bath helps.

belleshell Fri 25-Jan-13 19:04:14

oh Fuzz, that feeling of guilt is awful, but you arent well...!! and like grockle said log term sick would mean you could concentrate on getting well rather than well enough to get to work.

tODAY I HAVE HAD ANOTHER TO DO WITH MY EX... My DS as got into trouble for sending taxis etc to peoples house ( school boy prank!!) but Ex as gone mad. the trouble is its more to do with his parenting, my DS is left for long periods by himself, whilst ex goes out with GF or works etc. I wouldnt say he doesnt care for him but he does neglect him in other ways. anyway after another "discussion" ( argument) he said he will be more of a dad. I dont actually believe a word he says, hence one of many reason our marriage ended..... spoke to DS tonight and his dad is going t set up a bank account for him!!!!! How the |FUCK does that solve anything!!!!! i am lost for words

fuzzpig Fri 25-Jan-13 19:25:44

Hmmm being charitable I guess he wants to teach him some responsibility? confused Although I guess it depends where the money comes from.

You are both right of course. I was thinking about what I may be discussing with the psychologist on Monday - the whole boom and bust thing. I was kidding myself that I wasn't doing that, because I'm not one to race around doing everything... but I have to admit that I am in a bad cycle. My 'boom' phases aren't particularly boomy (IYSWIM!) but I am pushing myself too much. Oh bugger.

Really looking forward to seeing the psychologist, and I hope I will get a chance to find out whether I can have my dx officially in writing now that my last bloods are clear. Dreading the journey though.

Head still awful so signing off now. We are having a slumber party - because we are all ill we've covered the living room floor in mattresses smile

smilingthroughgrittedteeth Fri 25-Jan-13 19:37:08

fuzz I've just wrote a long reply and lost it but I agree with the others, I went to work for months feeling awful, I did my best to hide it from everyone and ended up making myself so ill that I was rushed to hospital after collapsing, I was forced to take 8 weeks off sick and spent 5 weeks of that doing nothing but sleeping, I don't even remember those weeks, the remaining 3 weeks were spent doing very little but that's what my body needed, I hadn't taken a single day off sick in 4yrs and admiting that I needed to take time was the hardest thing I've ever done, I felt like I had failed but now I look back and know it was the right thing.

I went back to work slowly, doing 9hrs for the first 3 weeks then 12hrs for the next 2 now I'm at 15hrs and for now that's my limit even an hour more leaves me exhausted.

Grockle Fri 25-Jan-13 20:24:29

Belle shock poor DS. Hope you are ok.

Enjoy your slumber party, Fuzz.

I've had a busy day was proud of myself for staying up so late til I realised it was only 8pm.

Grockle Fri 25-Jan-13 20:28:37

Sorry for moaning all the time. I'm really struggling. I've not seen DP for over a week now & he's not made any contact for 24 hours sad I don't know what I did or why he won't come home. Feeling mentally shitty which is a shame because I'm not making the most of feeling physically quite well.

smilingthroughgrittedteeth Fri 25-Jan-13 21:52:52

grockle you havent done anything, from what you have said about your dp he has his own issues to deal with, please dont waste energy or spoons on blaming yourself for anything x

belle your ex sounds like dp's ex , some people miss the point of parenting completely! She brought 9yr old dss a laptop for christmas, then made lots of digs about the toys/books or cheap shit as she called it that we had brought him, in the whole week he was with us he got the laptop out once the toys and craft stuff we had brought was out constantly, some people just dont seem to understand that children need more than money and expensive stuff.

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