Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

I've not been able to get downstairs today! Dd1 made me a sandwich for lunch before she went to school, my best friend is arriving at 3pm for the weekend (dh has an on-call weekend he can't change).

I'm hoping to make the school fayre, but I've just now cancelled the gala. I can't sit up straight and I have to conserve my strength for another week.

I'm back from the wedding :)

It was great, my dad kindly ferried us around which really helped take away the worry of getting about in the middle of nowhere. DCs behaved pretty well. I even coped in my new shoes - normally I live in trainers/skechers bu. these were sparkly wedges! - and I didn't really flag until the end. We got picked up at 8.30 so missed most of the dancing but my friend is really understanding about it.

It was really nice being at mum's flat, it is so much more spacious than our house! It was quite relaxing and a nice change.

Had to dash out to the walk in today as DS' eczema has got infected so he now has ABs.

Really tired now and I'm sure I will be suffering this weekend (DH is working but thankfully DSD is here revising so I won't be alone) but it was worth it.

Spoons to all xx

And yes my anxiety was, as usual, unfounded. I don't know why I get so worked up. I am glad there are no more big events lined up though. I just want to get back to resting and hopefully seeing some friends in a low key way a bit more often.

yay! So pleased to hear this and that it went well xx

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Glad the wedding was successful Fuzz & that your anxiety was unfounded. Maybe that will help a little next time, knowing that it wasn't anything to worry about? Maybe... I get anxious about social events too.

We had a fab 2 nights camping but I'm so bloody slow today. DS is such a worry atm, I've had his CAMHS referral through so need to sort that but have DLA tribunal on Monday. Am terrified. My key witness can't come so I sort of bullied exP into saying he'll be there but I expect he won't show because he never does. He's ignoring my texts now. I really don't need the stress of a tribunal hanging over me so will be glad to get it over with.

Weegie, I'm so sorry you are suffering. I hope the wait til your infusion isn't too awful.

How was Belle's holiday? Hope DS & the stick insects survive, Magso!

What about building? Solo? Smiling? Still worrying about Arbitrary.

Arb said somewhere she is v busy with work. I'm okay. Daily relaxation exercises are helping enormously, really. As has having a quiet period at work. Have kept going for half term, let's see how I feel next week.... .

Sigh. Last day of half term. I've had a lovely time but don't really feel I've had time off because I haven't been at home for most of it! I did manage a brief trip into town yesterday to get a few things but really want to just stay home today as I'm back to work tomorrow. Dreading it as usual!

We're having a lovely day today - just pottering. My hands hurt so much, I can't do anything & I only had about an hour's broken sleep last night so feeling a bit like a zombie. I daren't lie down because I'll fall asleep.

I'm trying to prepare myself for my tribunal tomorrow. I'm so scared. I really wish I'd never applied. It's totally not worth the stress & anxiety it has caused. It's making me more depressed than ever.

Building, I want some more daily relaxation exercises. My friend is a hypnotherapist & has made me a couple of CDs which are amazing. I need to do them when I can't sleep but I forget.

Fuzz, I've had quite a lovely break & it has felt more than a week but I am dreading this week too... I can just about cope when I'm not at work but that rushing & thinking & just doing stuff is a killer. I hate feeling so pathetic that I cannot face work.

Oh Grockle please try not to worry about the tribunal (I know, pot, kettle, black etc) - it is absolutely worth a try! And if it fails - well, you will at least be glad it is over, and you won't be forever kicking yourself for not having tried.

I will be thinking of you tomorrow xx

Thanks to everyone who voted, we won 100,000 NOK, that's £11,214, to go towards continuing the research. I think we now have enough for 43 patients. Still need more though.

There is another competition running now, you can vote for ME Research UK and the ME Association. First prize is £2000, 2nd is £1000.

Easier said than done, fuzz

Thank you though.

Hope tomorrow goes well Grockle

Tribunal tomorrow? Good luck, Grockle. Soon over and you will have done your best. Hoping for a good outcome.

Try searching for 'relaxation hypnosis' on YouTube. Or meditation, visualization, or guided relaxation, etc.

Someone named Jody Whitely is okay, bit of a weird sounding voice but does the business.

Also the NLP magic channel on YouTube, did I say that?

Meditation for Moms is quite new age but then, so am I.

And also try yoga nidra search, it is progressively relaxing the body. Bliss.

Stop me if I start to repeat myself.

Repeat away, I have no memory at all!

Thank you. Feel sick with panic now. Being sensible, I know worst case scenario is that nothing will change - it won't be worse. So that's good. But still, it's like waiting to do my French oral gcse!

Yeah, I'd be in bits with nerves even though everything you say is true, the worst is that nothing will change!

I haven't even finished my form yet! Eeek.

My appointment was at 11.40. They didn't call me in. At 12.20, the clerk came out and said they'd run out of time & were adjourning my case. Til AUGUST. Fucking fuming does not even cover it.

I cried so the panel saw me to explain that they'd realised my case was too complicated so needed a double slot (90 minutes )

Hope it went well Grockle.

Holy fuck, that is truly awful, Grockle! Pardon my French but honestly, what are they playing at? Feel for you.

I don't know what to do. It's made me feel so bloody depressed. I don't want to live like this. Some level of DLA was a means to making things a little easier, a little more bearable.

I try to do the right thing, to go to work, to push myself, to get help. But there actually is no help. Even when I'm suicidal. WTF is the point? I give up.

Oh Grockle I am so sorry. August seems such a long wait. No wonder you are disappointed and furious. ((hugs)) Very inconsiderate to make you wait about and then not find time.
Please hold in there. It is not a outright no. If it had been a suimple no you would have got it by now. So it could still be a yes. If they need longer its not a bad sign - and they will back date any payments due to you.

August?! That's disgusting of them :(

August... at the earliest.

Too tired to care about anything anymore.

I. Give. Up.