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Spoons! Support for those with chronic pain & fatiguing illnesses

(932 Posts)
Grockle Wed 03-Apr-13 13:48:24
buildingmycorestrength Tue 16-Jul-13 16:55:37

We've migrated. grin

crashdoll Tue 16-Jul-13 16:41:20

Are we still using this thread or shall we migrate to the new one? smile

Solo Tue 16-Jul-13 12:12:58

Hi all. I hope you are all ok.

I returned to work yesterday. I am shattered tbf. I am being sent to the OH people which I hate doing! but I have no choice sad

Many extra spoons to you all.

crashdoll Sun 14-Jul-13 10:27:42

I'm sorry for you loss, fuzz. Thinking of you. thanks

Grockle Sun 14-Jul-13 08:01:25

Thinking of you fuzz. Hope being with your family helps.

I think 12 hours would be a good idea, especially if DH can get something more regular.

I've started a new thread because this one was filling up but no need to move over there yet.

New thread here

fuzzpig Sat 13-Jul-13 14:47:19

Thanks again all thanks not really having much adult conversation ATM as DH at work. Nice to be able to talk about it here. I still don't get it. I keep re-remembering sad I didn't even think of her as old until quite recently (she was 93!) - she was always really fit and active and incredibly sharp of mind for her age, it was only once the cancer hit that she suddenly got frail. I will miss the hugs, she was mad about hugs smile and kisses too - two on each cheek and more if she could get away with it grin

My dad is picking me and the kids up tomorrow so we can all spend the day at mum's. DH working again and I didn't want to be on my own.

About work - I work in a library so it can be quite physical and involves being on my feet a lot. I don't think I'd ever go back to full time now even when (if?!) I'm better as the hours aren't very family friendly. I have now been told I can reduce further to 12hrs (currently on 16) if I want to, I am tempted as it would mean I never have to do more than one day consecutively. Currently I either do two or three in a row and that is too hard, it feels like there's no chance to recover from a shift. So I need to make my decision by Monday, eek. Hopefully DH will pass his NVQ (can't remember if I mentioned it already - fitness training!) next week - he's already passed his practical with flying colours smile - as he really wants to get a part time job in a gym. If he got some consistent work, as opposed to just the casual/unpredictable stuff he's already doing, it would make a big difference.

magso Fri 12-Jul-13 23:16:18

Daisy I now only work one day a week, in a hospital after not being able to return to my pre illness hours. It has taken several years to get to manage a whole day. I could do with doing more now ( well earning more), but I think my employer would have to be very sure I could cope before giving me more than tempory extra hours. There is no way I could work full time now.
I have a friend who now writes novels, travelling around to get material. I doubt it is financially brilliant. She also teaches the piano from home.

belleshell Fri 12-Jul-13 22:42:28

Fuzz..........sending you my condolences. xx

Grockle Fri 12-Jul-13 09:30:25

So sorry, Fuzz. Thinking of you today, with love x

Sorry to hear about your nan fuzzpig

fuzzpig Thu 11-Jul-13 22:53:48

Thanks all xx

buildingmycorestrength Thu 11-Jul-13 22:49:47

I work freelance as a researcher in my field of expertise which I enjoy, but it is too stressful. Am scaling back after this project.

Solo Thu 11-Jul-13 22:44:49

Daisy I'm a prison officer though I'm taking redundancy. I have realised over the past month that I can't cope any more sad and I'm hoping to get a stress free job somewhere.

daisychicken Thu 11-Jul-13 22:24:01

So sorry Fuzzpig xx

Those of you who work, can I ask what you do and how you cope? DH is self employed and we really could do with a little extra income, just a small amount of regular income rather than dh's erratic income would help.. but neither of us can figure what I could do or how I'd cope.. I haven't applied for disability benefits as I'm positive I won't get it. We just feel a bit trapped in a vicious cycle as I'm sure you'll all understand..

Solo Thu 11-Jul-13 22:14:58

Lots of love fuzzpig

gallifrey Thu 11-Jul-13 21:35:34

oh Fuzzpig I'm so sorry for your loss xx

magso Thu 11-Jul-13 21:22:13

So sorry Fuzzpig.
Gallifrey I have intermittent hair loss but have not found a way to fix it. It comes and goes.

buildingmycorestrength Thu 11-Jul-13 21:02:34

Oh, fuzz, I'm sorry.thanks sad

It is so hard to lose someone even if it was time.

fuzzpig Thu 11-Jul-13 20:59:09

My nan died today sad

Apparently she may have had a stroke this morning. Dad said she was very unresponsive when he visited earlier. He left when visiting hours stopped as she seemed stable but they called him back later, and by the time he arrived it was too late. It was peaceful though. And she has been 'ready' for a while.

I am sad I didn't get to see her - I was working today and wouldn't have been able to get there on time anyway. But from what dad was saying about how she was earlier, maybe it's better I don't have to remember her like that.

Don't think it's really sunk in yet. Sorry I was going to reply to all the other posts but my brain won't really let me settle on anything right now. Going to distract myself with TV.

gallifrey Thu 11-Jul-13 14:58:06

Has anyone experienced hair loss? My hair is coming out in handfuls and I have a bald patch at the back of my head sad

magso Wed 10-Jul-13 22:54:22

That's exciting Crashdoll. Fingers crossed for you. I do hope it works for you and for others and then on to other illnesses. RA is such a horrid illness.

Building I understand. It is far better to understand what is causing your illness and have specialists that know how to work with it. I have come on a long way since understanding some of my unpredictable symptoms (the keeling over) are due to PoTS. My heart is healthy- its the control mechanisms that are dodgy! Now I know that I can work on it. I have been working on building up strength and flexibility whilst already on the floor (don't get dizzy laying down). My logic is that maybe once I have the PoTs under control the CFS will recover more. There is a way forward - rather than the hopelessness of uncertainty and incurability.

crashdoll Wed 10-Jul-13 21:00:42

Fellow spoonies, please could you keep your fingers crossed for me? It looks like me being part of this clinical trial might go ahead.

First-in-human trial of a new drug for rheumatoid arthritis

Researchers at Kings College London are reaching the culmination of fifteen years of work by carrying out the first in-human trial of a new treatment for rheumatoid arthritis. If successful then the two year trial will show that infusions of binding immunoglobulin protein (BiP) will enable the body’s own immune system to help protect it against rheumatoid arthritis.

BiP is part of the body’s normal anti-inflammatory response and although it is found in the joints of people who have rheumatoid arthritis, there are insufficient quantities to have a therapeutic effect. Research already conducted indicates that giving an intravenous dose of BiP will quickly boost the patients’ anti-inflammatory response and will likely also reset their immune system to give a long lasting effect.

“If BiP works as we expect then a single dose should be sufficient to put patients into remission for months,” says Professor Gabriel Panayi, Professor Emeritus of rheumatology at King’s College London.

magso Wed 10-Jul-13 19:44:36

Oh no! Do you have the sort of insurance that sends in specialist cleaners?

Weegiemum Wed 10-Jul-13 17:37:16

Thanks folks. I had an incredibly hot uncomfortable day in hospital today (south facing ward, fans not allowed any more!) but got my IVIg treatment so at least it's over. I've now hit the fatigue wall, which will continue for about 48 hours or so.

I hate this so much, but today I met a woman on my ward who was next to me - had just been diagnosed with my illness and so I think I was able to help a wee bit.

And while I was out my washing machine broke and leaked everywhere.

buildingmycorestrength Wed 10-Jul-13 14:56:17

I'm not too sad about having a possible concrete diagnosis of a physical cause with things they can actually do, tbh! Much better than a mysterious 'autoimmune disorder'...or indeed the muscular dystrophy that was suspected.

Don't know how long I have to wait. Had a LP last year to see if it helped (it did) and waited about ten weeks between deciding to have it and actually having it. During that time I could hardly sit upright for more than an hour or so. Hope I Don t get that bad again but am struggling ATM.

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