The (not so old) Crocks Cafe

Indie_Kid

Ouch! Went to the gig tonight as planned. Now, if I stand still for too long, my knees hurt. After the first band came on and finished, I walked around for a bit and felt fine. I am now home and have poorly knees.

jennihen

Off to Somerset to see my sister - its a long way to go but I think she'll appreciate a hug.
She said that seeing how my condition was managed and I'm still working she's not too worried. Being ill and scared is worse!
Have a good day everyone
Jenni x

Oscar_The_Grouch

Good morning all

Off in to town with Mrs Grouch today. One of the Grouchettes bought a poster last week. Got it home and it was ripped. I'm going to go shout at someone until they give her a new poster whilst Mrs Grouch hides in the hairdresser.

suep

sh1305 thats why I always book seats at gigs or go in my wheelchair if Im really bad, who did you go and see ?

My dh and dd are off to the Isle of Wight festival next weekend, not together though, they go with their own groups of friends, my days of festivals are long gone now

Jennihen I hope your sisters going to be ok, shes lucky to have such a caring sister as yiu.

Oscar the grouch good luck with the poster lol

Im off to my Fibro meet this morning, theres just a few of us now, but we meet on Wednesdays for lunch and a natter. We hardly ever talk about our health anymore, its too depressing and the reason I left another group, all they did was winge, it was almost like a competition to see who could winge the most :eek: Im so glad the suns back :j Hope everyones ok.

Invasion

Jennihen thinking of you and sister!

Sh1305 Hope your knees are feeling a bit better now!

SueP, know what you mean about the moaning! Me and mum set up a young people's ME support group and there were a couple of people who came who just used to moan (both able to do more than me and a couple of the others there as well!). Luckily they don't come anymore!

It's "only" a once monthly thing, we normally have between 3 and 7 of us there and we use a lovely building that our church recently had built, and we use the beanbags and floor cushions from there too, comfy meetings! I'll be needing to re apply for our funding again soon.... Eek.

Just waiting for DLA renewal to drop through the door now... I need that all sorted by November (expecting to have to appeal!) as that's when I go from IB to ESA... Expecting a struggle with that! Someone at ME support group mentioned benefit answers, who basically do the forms for you, write to your dr's/OT's etc to get "good" letters from them to use as evidence and do the whole thing down to appeal for you. It costs, but I think it's worth it to avoid the stress and possible relapse! Might do first forms myself, and get them to help if it gets rejected.

Careful_with_that_Axe

Invasion I am having help with my 1st ever DLA application from the Financial arm of Social services. Yes, I now have a social worker! lol
My ex-SIL (who came to stay this BH weekend) told her brother (my 1st ex-dh) that it was because I have an ASBO!! *g*
Have you tried contacting them to see if they could offer you help?

suep I am still there or thereabouts. Still a bit carp. Worst thing I think is that I've had infected eyes for the last 2 months and likely not to clear until I shift the GF. Ah well. Could be worse. I have my knitting to console me but hate not being able to sit outside in the sun.

lw agree with suep. You don't have to explain. Is there anyway that Mr LW could put grab bars near the loo so you can use them to lever yourself up?

bigzippy

Careful_with_that_Axe wrote: »

Invasion I am having help with my 1st ever DLA application from the Financial arm of Social services.

Yes MIL just had that - Welfare Rights they were called - but you can only use them if they're referred to you through a Social Worker (I asked for myself). I used Citizen's Advice Invasion but they vary from area to area. A lot of people pay about £18 a year to benefitsandwork.com/co.uk as they have comprehensive guides on what to say for certain dx/symptoms etc...that might be worth a go if you're thinking of doing it yourself first? They have insider info on what guides ATOS use to judge you by too etc...

I actually came on to post this video abuot EDS for singlesue as I thought you might find it interesting. I know someone else who has it now, and they'd posted it on their profile so had a nosey. My HMS is not that bad, but I did just have to pop my finger tip back in while I was typing LOL

Cwta how come you can't just sit in the sun?

I've just come back from the GP and now have my physio referral underway...should only take 6-9months before they'll see me

jennihen

Cwta how come you can't just sit in the sun?

Can I leap in here? Is it Lupus Cwta? If so, or any of the autoimmune illnesses, UV light which normally stimulates the immune system should be avoided. Its impossible to predict if sunlight is going to heighten a flare or even bring one on but in general anything that stimulates the immune system in a healthy person could have serious implications for someone with Lupus or similar. The same goes for massage and echinacea in my case!
I always joke that I'm a vampire as I avoid the sun as much as possible - chances are I could be okay but its not worth the risk of another setback!

Spent the day with my sisters. Poorly one is in good spirits. She rang the consultant for her results but they wouldn't give them over the phone (they have in the past!)

Indie_Kid

jennihen wrote: »

I always joke that I'm a vampire as I avoid the sun as much as possible - chances are I could be okay but its not worth the risk of another setback!

A friend has ME and I'm sure people have said similar to him too. I get odd looks because I can't deal with the sun either. I made the mistake of going out today and came home with migraine.:(

Careful_with_that_Axe

I normally ignore the not sitting in Lupus-related not sitting in the sun but usually use a really high strength prescription sun cream, but it's because of my eyes. I've had conjunctivitus for the last 2 months, since the oset of the glandular fever, and the bright light hurts my eyes.
Shame as it's the sun that's the only thing that makes me feel really alive.