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/

Might be worth a try Grockle, although I think I would react the same- we all try to hide our difficulties I suspect. Would it make some journeys easier? Its only worth it if it doesn't cause extra hassle.
Have had a very tiring day. Hope everyone else is doing better.

Oh wow, the scooter is great! We 'walked' the dog this afternoon... I sat on the scooter, DS sat on my knee & drove whilst the poor dog spent the whole time trying not to get run over. But it meant she got a walk - a proper, long one, for the first time in days. And DS got to go to the park. And I could sit down & not want to cry. It was so liberating.

I feel stupid and lazy and like I'm being dramatic & attention seeking but I honestly didn't care today. Going to see what else we can do with a scooter tomorrow. Although, at this rate, I'll have had no sleep at all and won't manage to get downstairs let alone out.

Hoping everyone is ok - love & spoons to you all x

Grockle I was hoping you'd try it! It isn't just the benefit for you, it's the possibilities for others as well. Brilliant news.

Not great here. Have a cold which means gravity has been turned up and oxygen has been turned down. Still trying not to judge whether lp has worked.

Grockle, if its a choice between being locked away in your bedroom all the time or being able to get out and greet the world with your ds then you've taken the best choice :) . Take it easy today though, it is bound to have been tiring yesterday.

Been awake since 4ish until just before the alarm went off. Typical. I cannot find a position to sleep in that doesn't seem to make things worse. On the plus side I got to enjoy the storm we had :)

I can take it easy for much of the day. Hooray!

Grockel A wise lady told me that accepting mobility aids is not admitting dependence (as I felt) but rather, gaining independence but you can often do so much more with the aid of a crutch/stick/scooter/whatever.

I used a mobility scooter around a shopping centre after my ankle surgery. I am not the most coordinated person and got stuck on a rail in H&M and didn't realise until I'd dragged it across the shop with me.

I was sorely tempted to borrow a mobility scooter yesterday at the NEC as I could not really enjoy the show with my family. My legs got too wobbly early on so I had to wait in various coffee spots, when I fancied looking around. Very frustrating. We went to the camper van show as we are thinking of getting an old camper to customise, so ds can be safe and secure and I can rest up when needed. I can't rest properly without a bed to lie flat on. Dh likes travelling. We hired a van once a couple of years back and it was a brilliant compromise for us all. I was not sure if I would be allowed to borrow a scooter as I don't get DLA or have a visible disability or injury like your ankle Candy. First time at the NEC since becoming ill - it is enormous! Looked at electric bikes too, but they are quite heavy.
If the scooter works for you Grockle can you borrow it for longer?

Hope everyone is feeling relatively okay. Helibee, hope you are on the mend!

I have my PIP medical this week. I am shitting myself about it :( does anyone have any tips from their DLA one? I'm half tempted to purposely overdo it the day before to make sure I am rough as... I'm so used to minimising my problems, I'm worried I won't be able to express them accurately.

Hope all goes well for your PIP medical, Beyond. I wonder if it would help to have someone else there (if that is allowed) to stop you minimising? I am sure we all do this. I had some help filling in the DLA form for ds (who has SLD and ASD) and I had 'normalised everywhere!

I had my dla medical last week, what would you like to know?
I did the same as you and overdid it the day before and didn't take any medication so I was in agony. The doctor that came was actually really nice. He just went through a form with me about my daily routine. Then he looked at my legs and feet , did a peak flow and that was it.
I haven't heard anything yet he said it would be 5 or 6 weeks!

I don't know what I want to know exactly, the whole thing just makes my anxiety go through the roof, fear of the unknown I guess, so the more anyone can tell me, the better. It's at home, so DH should be here, and probably both DSs too.
I'm seeing the gynacologyst in the morning (first appointment, for my rectocele) then pip in the afternoon, so am pretty much dreading the entire day.

I am dying my hair a more natural colour before too, so as not to come across as a scrounger...

To give you an idea of how much i am overthinking it. :(

Hoping tomorrow goes well.

I don't think you usually need any proof of anything to borrow a scooter - I never have. I'm going on a cruise on Saturday and am now dreading it. No idea how I'm going to manage DS on a very a big ship with no wheels or anything. Lots of sitting down I guess. I know this is a very minor problem but it's the first proper, non-Uk camping holiday DS & I have ever been on.

Hopinbg everyone else is ok.

Good luck today Beyond.
Grockle I hope the cruise works well for you. I know what you mean about dreading your holiday, but I hope it surprises you. Are there organised child activities for ds to join in with? Hopefully the crew will help out if you get accidently separated from ds. They must be used to passengers getting lost and have safety systems in place for children. It sounds exciting!
Thanks for the information on borrowing a scooter.

It's tomorrow :) I know I said in the morning, but I meant the morning of that day, lol
Today is the very weird task of using as many spoons as possible

Beyond Enjoy using your spoons - make the most of making yourself ill

They no showed! I hobbled around dying all day and the bastards didnt come! I rang 45mins after they were supposed to arrive and there had been "an incident" so had to rearrange.

WTF

No way :( utter bastards

I know!

And that was after the utter shitness of my gyn appt this morning.

Fucking awful day. Can't wait to go to sleep and it be over.

Oh, beyond... that's shit. I have no experience of that kind of gynae issue but have dealt with horrid drs. What happens next?

Hope you get some sleep x

I expect what will happen next is they will phone you up and ask to come the next day which apparently is what happens a lot.

I have an appt made for two weeks time to see my GP. She diagnosed it in the first place so I'm crossing my fingers that she'll be pissed too. Then, second opinion I guess? And depending on what she says at my appt, complaint to PALs. Hell, maybe even a sadface for the fail

And re the medical, they're also coming out again in two weeks (not the same day though)

Oh Beyond. So sorry about the cancelled medical, what a pain in the arse. Ditto the gyn and yes, do complain. Regardless of the diagnosis, she sounded very rude.

Hope the next medical is ok and that they actually turn up!

for you x

:)

Meant to ask something else too. I seem to have quite a bit of weight sneaking on, probably not helped by "comfort" eating (not in the wah I need chocolate sense all the time, anyway , more still being able to enjoy something I used to)

I need to get in control before it gets out of hand (im extra annoyed at it because I lost all the baby weight after ds2 and got rid of all my bigger clothes). What can I do? I thought swimming, cause of the weightlessness, but whenI tried it recently I still felt dead the next day... :(