Spooning into summer - life with chronic pain & fatigue.

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

theory here www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

beyond, that sounds great!

damp, sorry to hear you are feeling bad :( But do you mind if I take a little encouragement from your other thread? The idea that there could be a period in the future without spoon-management is very hopeful to me.

I've been recently realising just how much of my life has fallen away. I think I didn't notice quite because, well, I had been told I was fine, so I think I assumed I was just overly busy and would be back to things soon. But now I recognise the missing things are likely due to this illness, and I keep running across more evidence of just how much stuff I used to be able to accomplish. It's making me feel quite sad.

And argh! I've got the flu! Next year I'm making DH get the jab too. He got the flu last week, and I was feeling all safe having got my jab. But after a few nights of only a few hours sleep and madness at work (these last three weeks have been a nightmare - have barely been able to do anything other than work, including internetting...) it appears the flu finally broke through my immunity. I am just hoping that it will be a milder case than normal (which for me is several months of illness) because of the jab. So far I feel the healthiest I ever have with the flu, so there is hope.

Ugh, and now DH has suggested that we visit his relatives for Xmas - he looked up plane flights and it was less expensive than he had feared. But I feel like I'm on the edge, and was really looking forward to a holiday at home where I could just try to get some rest. I've really run out my spoon budget this autumn, and I'm afraid to continue an even larger debt into spring. And the idea of an 8-hour plane flight with an 19mo is also harrowing. But I feel like I'm always a 'party pooper' and I don't want to be all negative about his ideas. I know he thinks I always 'never want to do anything'. It's not that I don't want to, it's that I'm exhausted. I just want to cry.

Beyond, no I wouldn't mix it with ADs.

Feel terrible this am. Barely slept. Headache and generally crap. I don't want to call in sick as I called in sick last week and I don't want to create a rubbish impression (voluntary role)

I don't recommend 5htp if you have PoTS. It set mine off yesterday. Felt really horrible for much of the day, on the verge of a faint when I stood up for too long.

Does anyone have a cleaner? DH has suggested maybe we get one, as I spend most of my home-energy not quite managing to clean. We can't really afford anything extra at this point, but if a cleaner really means I don't have to clean at all (or just very, very little), I might be able to use the energy I would have cleaning trying to plan meals and budget better, which could potentially make up for it.

I have a home help once a fortnight. She mops and vacuums all the downstairs, (something I cannot do in one go, even though our house is small - its all the moving stuff to do the job properly I can't do) cleans the bathroom and loos and then helps me tidy up and clean ds bedroom which is the messiest bedroom imaginable ( he has ASD), with remaining time or will help me fold washing if needed or change beds - jobs that are hard for me. I still spend much of my energy doing household chores but it helps to keep me on top of things, without causing a major setback. I usually get on with the daily chores whist she is here, although last time I had a bath because my Pots (postural orthostatic tachycardia) was playing up and its a bit unsafe otherwise! It does help with my ME symptoms, I am sure. I was thinking I did not need her any more as I have been doing better, but for various reasons she has missed several visits and I (and the house) started to go downhill again, so its still worth it. I was worried about the cost too, hence going for fortnightly (2 hours) help.
Hope you get over your flu quickly!

ME event in Bristol in February

I'm getting a cleaner, she starts next week and I'm really looking forward to it

Can't afford one right now, but if I get given any pip, thats where it'll be going :)

I finally got DLA so I'm using the money from that, and I picked up my new motability car on Tuesday

Well done at getting DLA tolittle. I use ds DLA to pay for our home help. Hope it goes well. It took me a while to feel comfortable with someone in my home.

I would much rather have someone here doing the cleaning than me struggling to do it xx

Yes I agree. Its that guilt that I should be able to manage! I have to keep reminding myself I am ill not lazy!!

Weyhey, I finally had my pip assessment! My mum came with me, and both of the kids, we were late cause of traffic, there was no parking nearby, so by the time I'd hobbled there from the carpark I was in tears, and my mum was ready to kill someone if they'd cancelled again! Not sure how it actually went, she was treated to more tears when she asked about my prolapse and on the physical bit she said the weakness was obvious and correlated with what I'd told her about pain ( ), but I guess we'll see when i hear back...

Hope you hear soon about the decision, sounds like it went well xx

Fingers crossed for you Beyond.

I forgot about this thread, and have only read last few pages. KinkyDorito, I get cramps and spasms all over with fibromyalgia. I have had them in my feet and hands, and anywhere else you can name. My GP has given me Baclofen which has helped a lot, especially when I actually remember to take them (four times a day).

We can vote for this film about ME, Canary in a coal mine. If it wins it will get a consultation from the Sundance Institute.

Fingers crossed, beyond.

Spoons to everyone.

Have had my latest rheum appt too this week. And she has confirmed my hypermobility, and is wondering if that is causing current pain, as I don't appear to be in a flare atm. Forgot to mention my bloody fainting, but I guess I can speak to the GP about that now the rheum has confirmed her bit.

Xrays and blood tests done, sulfasalazine dose increased to max to see if that helps, so can start mtx/the other one in feb if I need to (now ds2 isnt feeding any more). Depending on what the xray results are, shes preemptivly put me down for scan of my back too.

First proper physio session is this week now. Rheum said she will inform them of hypermobility as they were a bit at my self diagnosis. never mind my 100% correct track record for my hypochondria

No news from DWP yet, but bus pass and blue badge have arrived from the council.

Hello all - buildingmycorestrength here - returning under a new name as I was a bit worried about how much I was revealing online! I'm jogging along, not great, still having to rest a lot and keep to minimal activity really, but as long as I don't do too much I'm not doing too badly unless I get a virus.

Have decided to stop work for a while - turned down a wonderful project recently as it would have been way too much. Am still managing the kids and house (with the help of a cleaner) and that is enough, frankly. DH has a demanding job and I have no family help, so with health problems as well, work just has to take a back seat.

This is obviously terrifying in some ways - I love my job, I'm freelance so if I don't keep up I could seriously damage my career later on, I don't want to do nothing, etc etc, but this is just how it has to be right now.

I feel a LOT better for making that decision. I'm using any spare spoons on things I like now . And one thing I've done (despite being a bit worried about money) is I had my colours done! See Style and Beauty if yo don't know what it is. I don't want to look ill, even when I am ill, so doing a few things to help myself feel like I look better has been great - and fun.

Ooh Face - I really fancy getting my colours done! I've dropped hints to DH but I will be flabbergasted if he heard! Sounds like you are working hard at surviving well if that's the best phrase for making the best of it.

Magso - I told my DH to get it for me for my birthday. I told him the name of the consultant and gave him her website. I'm done messing around.

Mary has been campaigning for ME/CFS for decades.

"So if you want to measure that cardinal symptom of our disease that is often called post-exertional malaise (PEM), or post-exertional worsening of symptoms, you need a TWO-DAY test. Otherwise, we don't come off any different than someone who is not in shape.

Which means that by refusing to do the two-day test, CDC's results will make it look as if graded exercise was a good idea.

And that is bad. Bad enough that I think we are being set up."

Id love to get my colours done too. Maybe I'll book as treat for myself in the New Year.

How are you all? I'm struggling but determined not to crash yet.

I've been on anti TNF treatment since August. My inflammatory markers have come right down, my joints are visibly less swollen, my range of movement has increased and my pain levels went right down. Pain has now increased as has joint stiffness but no swelling which seems weird. Maybe my first mini flare since starting the injections?

I'm exhausted, so so so exhausted but so is everyone else doing my degree which reassures me. One more week left of placement and then we have a break! I need it so badly. I can't wait to sleeeeeeep.