The (not so old) Crocks Cafe

The_Dragon

blimey cwta - that is a humungous number of prescriptions! I hope they find out what is wrong soon

TOBRUK

Hi everyone, I have been lurking a little now and then to see what is going on.

I see many of you are suffering from the warm spell. I love seeing the blue skies and the sun BUT can't cope with it at all! I put it down to the M.E. and even if I stay in the house it affects me - I just can't function! If it gets any warmer I may as well stay in bed! Pain is worse with the hot weather as well as the exhaustion!

cwta, sorry about all your problems, you're really going through it aren't you! I have dry eyes (saw a specialist a few years ago as I thought I was losing my sight!) and take the eye drops (carbomer eye gel) but find I can't see anything for a while after. I also have dry mouth and always got a drink in my hand ... no, not alcohol!;)

I had my eyes tested last week and the optometrist decided to put dye in the eyes and look under microscope. He told me that there is a band right across both eyes. He said I should try the new drops 'systane' instead of the carbomer as it is more effective. He put some of the 'systane' in both eyes and what a difference it made, and I could see straight away!

He couldn't give me a prescription but he told me to ask my GP. If I don't get a prescription I can buy it with him, but my GP is brilliant and she gives me a prescription for anything I need - I don't pay for prescriptions as I'm in Wales.

Perhaps you sh1305 and jennihen may like to try this fairly new eye-drop out? He explained that the eye drops like carboner (and others) are gel before entering the eye and the 'systane' becomes gel after entering the eye. The 'dry eye' condition won't get better, but it may be better.

jennihen, hope your sister is ok, I'm sure she'll be glad to see you.

Singlesue, hope you've had some sleep by now!!

Hi to everyone else.

bigzippy

Invasion wrote: »

Thanks CWTA and BZ am already a member of benefits and work

Oh good, that should help then I need to get mine finished up (both IB and DLA are renewing at the same time) so I can recorded delivery them on Saturday... I only need to go through them once more to make sure everything's accurate (cos the CAB woman wrote it for me), copy in a letter from the consultant, get DH to write the carer bit, and then scan it all in...but I'm SO putting it off good luck with yours dude

Trialia wrote: »

I don't tolerate sun very well - I never burn, whether or not I wear sun cream, but it tires me out and as my hair is nearly black, I always need to wear a hat to avoid heatstroke.

I can and do burn, but my hair's really dark and really thick and I get heatstroke easily. I have to wear sunglasses as much as possible too or I get migraine from the brightness

As for the dry eyes, I just end up putting it down to tiredness tbh... It is worse today but I'm not sure if that's just cos I'm thinking about it now lol

Careful_with_that_Axe wrote: »

I REALLY need to see Rheumi as had to cancel May appointment ue to the gf (can't expose other people to that!) and replacement appointment insn't until Sept. Will have to see if I can get cancellation.

*ahem* exsqueeze me Cwta...but didn't you go out on a day trip this weekend? Hmmmm? :cool: If you can expose people for that, I'm sure doing it for medical reasons is more than reasonable!!:rotfl:

jennihen

I did have a lovely day with my sisters LOL - we had a mission to perform (scattering my mum's and brother's ashes) We went to Ham Hill in Zummerset! Lots of happy memories there and we had a lovely time. We took my niece and the baby as well so Nix got to see her great nephew.
All good, all postive and moving on. She'll get her results next week.
Thanks all.
Taking the kids to see the new house in a mo and seeing the mortage guy tomorrow - wish me luck!!

Indie_Kid

TOBRUK wrote: »

Pain is worse with the hot weather as well as the exhaustion!

I get this too.

but find I can't see anything for a while after.

I get this and have been told it's normal.

SingleSue

Ahh pain is worse in the heat.....that would explain why everything is blooming well hurting today!

Tobruk - Nope, sleep was impossible with the boys being on school holidays, now at the dizzy stage of tiredness but with the way my joints are tonight, not sure if I will get any decent sleep tonight either.

Invasion

My neuro appt has sneaked up on me! When it was booked in like, march it seemed like ages away, and now it's less than 2 weeks. He's a special chronic headache neuro who my dr wrote to, so you'd have hoped he'd have just said he couldn't help if he couldn't... but you never know. Neurologists seem to think they're god's, with ridiculous ego's!

He wouldn't do even an initial phone consultation with me, despite the fact it's at least 2 hour journey each way, probably at least half an hour waiting, half an hour appt, then home again! And at the time I was still bedbound at least 20+ hours of the day...

Just hoping I don't get there and he re-reviews the meds I've already tried and tells me he can't help! Trying not to get hopes up, but it's hard.

Careful_with_that_Axe

Invasion wrote: »

My neuro appt has sneaked up on me! When it was booked in like, march it seemed like ages away, and now it's less than 2 weeks. He's a special chronic headache neuro who my dr wrote to, so you'd have hoped he'd have just said he couldn't help if he couldn't... but you never know. Neurologists seem to think they're god's, with ridiculous ego's!

It's that common is it?! The Neuro I saw was lovely with me the first time and, when people said he can be either bad or god, I took it with a pinch of salt until I saw him the next time when he was foul.

Hope you get something good out of it and interested to hear what he says.

Trialia

Weird. I've only seen a neurologist once, and he wasn't that bad. But that was ten years ago.

Invasion

The one that diagnosed me was lovely, really lovely. He goes to the same church as me though, maybe that made a difference?! he was also a paediatric neuro, they tend to be a little better.

I saw another paed. neuro recently as she's also a muscle specialist, the first time I saw her when she thought I could have a myasthenic disorder she was very nice, I heard stories about her pushing people back into school and didn't believe it to be honest! When the test results came back clear and she decided it was "just" CFS she turned into a different person, making out I was doing it to myself....

Very odd. The 2 adult neurologists I've seen have been right idiots too. It seems to be pretty universal that they think they're WAY above you!