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Spoons! Support for those with chronic pain & fatiguing illnesses

(932 Posts)
Grockle Wed 03-Apr-13 13:48:24
buildingmycorestrength Wed 22-May-13 22:40:57

Prescribed relaxation seems to helping a bit! Have done some much-needed cleaning today. Just hope I haven't overdone it.

Grockle Wed 22-May-13 23:42:24

Hope everybody is resting.

I'm shattered but can't sleep. angry

Had big meeting with HR today - they've raised concerns about my ability to work & my safety at work.

Got dr for DS tomorrow morning then apt for me in afternoon then open day at his new school. Too busy.

magso Thu 23-May-13 20:47:11

Grockle have they given you any idea what HR will recommend? My week has been too busy too. I was doing better but have struggled rather more in the last week or two. Sleep quality has also diminished. Ds has been off school but now back, but I still feel grumpy. In some ways I am looking forward to half term (ds is more relaxed out of school) but I am worried by how tired and forgetful I am.
Hope you don't pay too hard for the cleaning building.

Grockle Fri 24-May-13 07:30:18

HR are going to work with me & senior management to do a risk assessment on me because they are concerned about the children's safety hmm

Also, I was told that they won't reduce my workload but they will meet with me to discuss it.

DS is off on his Young Carers holiday tomorrow. He's only ever stayed away from home with his Dad but I think he'll love it. 6 boys in 1 room & he knows 2 of them anyway. It sounds amazing. They even have a swimming pool.

I'm in so much pain in my calves. I can barely stand up. It feels like I've had cramp but 10x worse. And I have a sore throat & chest again.

Hope everyone has a lovely weekend

buildingmycorestrength Fri 24-May-13 12:52:58

Another CBT session today.

I'm to continue relaxing daily (I've found a YouTube channel called NLP magic which is fab) and also have a 5 min foot massage from hubby and play my ,musical instrument for 5 min daily. For me. Because I like it. grin

Grockle Fri 24-May-13 18:02:21

Building, that sounds lovely. What instrument do you play?

fuzzpig Mon 27-May-13 08:50:54

Playing the instrument sounds like a good plan. It is important to allow some spoons for something we love to do, not just things we have to do! I haven't played my piano for a while but I have been reading a lot more which makes me happy.

It's gone very quiet on here! I'm not doing anything this weekend, but tomorrow we are going to my mum's flat to stay for 3 nights, my friend is getting married on the Thursday. I am so anxious. I hate events like this, or rather the lead up to them, as I get panicky about the travel arrangements, I worry whether the DCs (well, DS really) will behave, I know it will be a really exhausting few days physically and socially. Have to get my bridesmaids dress adjusted and will see nan too (she is home now, still waiting for results of biopsy) and I just feel pulled in all directions when there is nothing left to give. It makes me want to hide away.

magso Mon 27-May-13 10:03:19

Hope the wedding goes well

Grockle Mon 27-May-13 11:17:57

I agree... I think many of us don't save spoons for ourselves but it is important to make sure we have time to do things for us, too.

Hope the wedding goes ok. I don't like things like that, either.

lisad123everybodydancenow Mon 27-May-13 12:38:26

Message withdrawn at poster's request.

fuzzpig Mon 27-May-13 12:43:15

I don't see my GP very much anymore, now that I have a specialist, but what you describe sounds like more than normal symptoms, if you can't swallow it could be something like tonsillitis. Worth checking it out. Moving is so stressful!

lisad123everybodydancenow Mon 27-May-13 13:19:37

Message withdrawn at poster's request.

Weegiemum Mon 27-May-13 13:25:08

I'm now only 12 days from my next IV and I can't wait - today I can't rise my arms above my shoulders, am sitting down every 2 mins and staggered round the supermarket - wasnt easy.

A mn friends will be here soon for lunch. Will be nice!!

Grockle Mon 27-May-13 13:53:23

I don't go to the GP every time unless it is new (and worrying) or very painful. I think you are right to be there. Hope they can help.

Weegie, you sound like you are doing amazingly well. Don't do too much - wait for your IV! Enjoy your lunch.

belleshell Mon 27-May-13 15:37:26

hope everyone is having a rest, we (me DP and 4 kids) are going to spain tomorrow, if today is anything to go by ( everyone sat sorting out ipods, ipads, phones etc) im running around like a lunatic last minute shopping and packing...........I will need a month off the other side of it!!! even my little tantrum went unnoticed!!
grrrrrrrr

CFSKate Tue 28-May-13 09:09:39

If anyone wants to get the 2013 ME conference DVD, it's cheaper until Friday.

lisad123everybodydancenow Tue 28-May-13 09:18:43

Message withdrawn at poster's request.

GallifreytoTrensalore Tue 28-May-13 13:10:36

Hi everyone, I have had a slight name change, for some reason I was logged out and when I tried to sign in again it kept telling me the name Gallifrey was already in use!

Hope you are all well smile

I am exhausted today, did loads over the weekend went to cuckoo fair on saturday all day, on sunday we went shopping and had friends over for a BBQ and yesterday we went to camber sands and had a picnic on the beach, nice if you like sand in your food! Thought i was doing really well but this morning I am aching from head to toe and stiff as a board. It's raining here so hopefully a nice day at home. Tomorrow dd2 goes to nursery all day so dd1 wants to go to bloody Thorpe Park! We are going to Harry Potter studios on thursday so I don't think that's going to happen!

Has anyone been to the Harry Potter thing? If I go in my wheelchair will it restrict what I can see?

gallifrey Tue 28-May-13 13:29:28

managed to change it back again today!

smilingthroughgrittedteeth Tue 28-May-13 17:01:38

Hi everyone

Grockle I got your lovely card this morning thank you x

I'm doing ok now but I had a tough few weeks after my operation and when I came back on here there where so many new people it just felt to overwhelming trying to catch up.

I had my operation and was really unwell for the first 3 weeks, I could barely get out of bed, I had a post operative infection and that took ages to clear then I started having other problems which have led to the Dr thinking I may have kidney problems, I'm now waiting for more tests but my urine shows high protein levels and my blood tests confirm there's a problem.

I don't have addisons disease but my cortisol levels only just made it into normal range so it looks like I have adrenal fatigue.

I'm struggling a bit to remain positive and the exhaustion is bad at the moment

Grockle Tue 28-May-13 23:47:29

Hope you enjoy your holiday, Belle.

Gallifrey, we went to HP studio tour in December. I used my walking stick & staff were really helpful. They stopped me before I joined the queue to go into the intro talk bit & said I could sit & wait on the bench with DS & they'd let me in first. I think a wheelchair would be ok, just a bit awkward if it's busy. I think you'll be ok though. Have a fabulous time.

DS came back from his Young Carers holiday today & had a wonderful time. We're going camping tomorrow. Not sure how I'll do!

Glad you got it, smiling. I'm so sorry you've had such a rubbish time. How worrying, waiting to find out what the problem is. It's impossible to be positive sometimes, especially when you are so exhausted and unwell anyway. I do hope you get some good news soon.

magso Wed 29-May-13 06:13:21

Lisad hope you are feeling better. You seem to be having a rough time. Don't despair. You have been very ill and it will take time to fully recover. Its miserable when you go from one chest infection to another. Could your vitD levels be low? Correct amounts of Vit D is supposed to help lung health.
Smiling so sorry you had to cope with a postoperative infection. I hope that all the investigations shed light on your health issues, and most importantly lead to an improvement in your health. Nice to see you back. I agree there is nothing like feeling rubbish for life to seem rather negative.
Belles hope you have a lovely restful holiday.
Grockle sounds like your lovely ds had a lovely time but I hope the weather picks up and your camping goes well. Will there be lots of on sight things for your ds to do?
I'm a bit off colour at the moment (kidney infection). Feel so flipping uncomfortable and ill that it puts the CFS down to second! Still I am hopeful the antibiotics will soon have me feeling better although I know I will pay for the pacing up and down.
Hope the wedding went well Fuzzpig and your worries were unfounded. I always worry about occasions - mostly because ds has sn and has no awareness of etiquette etc.
We went to HP Gallifrey, but I did not use a wheelchair. However I do notice slopes (wobbly legs) and there were a couple of small shallow ones, changing from one area to another. I think you can phone ahead if you have a disability, and certainly see if you can avoid the queue. I went in as ds carer so it was less expensive. I found waiting in the queue very difficult, which wore me out. I don't remember any where that would not have been accessable -except the castle bridge which you don't have to cross.
Weegie wishing you as well as possible till your next infusion.

Grockle Wed 29-May-13 08:29:01

Oh magso, kidney infections are awful. Both mine were infected when I had one & it was Terrible. Hope you feel better soon.

At the campsite, there's a small playground & tree to climb. DS should be ok pottering. He's very excited. I'm trying to muster some enthusiasm!

Hope everyone is ok.

CFSKate Wed 29-May-13 14:53:22

Facebook vote to win money for more Rituxan research, vote once before Sat. (scroll down a bit for the English!)

Weegiemum Thu 30-May-13 13:04:43

I've hit the wall. My IV is already overdue but they can't book me in until next Friday. Today I got up before dh left for work, because I wasn't happy on the stairs by myself, I'm lying on the sofa. My pa is here cooking a pasta bake for tea, bless her, I don't know what I'd do without her.

There's something different about this tiredness. No matter how much I sleep it doesn't help. I'm sure I'm tireder than when dd1 was a demanding all night feeder!

I've got stuff I absolutely have to do this weekend! Mainly dd1 has a stall at the school summer fayre, selling her cards etc, and dh is away with work. My best friend is coming for the weekend to help. I'm supposed to be storytelling at a local gala day on Sunday but I'm not sure ill make that!

Go away, tiredness!

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