The (not so old) Crocks Cafe

jennihen

Careful_with_that_Axe wrote: »

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.

They call me 'factor 50'! I used to get sun bloc on perscription but TBH its so cheap in the supermarket and really high factors.
Have you normally got dry eyes? I used to get recurrent eye infections but, touch wood, that phase is over.
Hope its better soon x

jennihen

sh1305 wrote: »

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.:(

I've had really strange episodes after days out in the sun - I think I ruined every foreign holiday we ever went on as a kid through being hospitalised!! Add to that a complete over- reaction to insect bites - each one can be the size of an orange and the mozzies love me!!
Its a bummer not being able to enjoy the good weather. I wish I could party after dark but I'm usually all aches and pains by the evening and one night out takes two days to get over!

Careful_with_that_Axe

I only started getting dry eyes n thre last few months and was gonna mention it to gp when I came down with this. You've given me the reminder I needed to mention that to gp tomorrow - thanks! *g*

Invasion

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

jennihen

Careful_with_that_Axe wrote: »

I only started getting dry eyes n thre last few months and was gonna mention it to gp when I came down with this. You've given me the reminder I needed to mention that to gp tomorrow - thanks! *g*

Google 'Sjorgren's syndrome' - most rhemy's don't test now but look for dry margins around the eye, persistant mouth probs, untimely tooth decay and more intimate probs. Relief is available - I had artificial tears as well as AB's. Why suffer - life's too short!!:)

Indie_Kid

jennihen wrote: »

Google 'Sjorgren's syndrome' - most rhemy's don't test now but look for dry margins around the eye, persistant mouth probs, untimely tooth decay and more intimate probs. Relief is available - I had artificial tears as well as AB's. Why suffer - life's too short!!:)

I use artificial tears and could never get the hang of putting them in - I would always miss and look as though I'd be crying.:o

The gel isn't as bad.

SingleSue

bigzippy wrote: »

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

Thanks for that, Eldest had to put his shoulder back in after I gave him a brief cuddle tonight! It wasn't even a bear hug sort of cuddle, just the usual gentle little hug type.

Me and the sun don't get on, I get a headache if I am out in it for too long, my skin doesn't like the sun and I can get a rash from very little exposure and to make matters worse, my skin doesn't like sun cream and I get a burn worse than any sunburn around when I come into contact with it!

Trialia

SingleSue wrote: »

Thanks for that, Eldest had to put his shoulder back in after I gave him a brief cuddle tonight! It wasn't even a bear hug sort of cuddle, just the usual gentle little hug type.

That's how it is with me. I can never sit with my left shoulder to an aisle anywhere because if anyone coming past happens to knock it, even just a little bit, it's right out.

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.

Careful_with_that_Axe

jennihen wrote: »

Google 'Sjorgren's syndrome' - most rhemy's don't test now but look for dry margins around the eye, persistant mouth probs, untimely tooth decay and more intimate probs. Relief is available - I had artificial tears as well as AB's. Why suffer - life's too short!!:)

Yes, that all fits! I am constantly thirsty and even have to have "wet" food - lots of gravy or sauces etc.

I did buy some Viscotears after speaking to Chemist but they actually irritated my eyes more and made them itchy.
Could be why the eye glands are affected with the glandular fever - shall add it to mental and, soon to be written list, to take to doc.

Many thanks.

Indie_Kid

Careful_with_that_Axe wrote: »

Yes, that all fits! I am constantly thirsty and even have to have "wet" food - lots of gravy or sauces etc.

I did buy some Viscotears after speaking to Chemist but they actually irritated my eyes more and made them itchy.
Could be why the eye glands are affected with the glandular fever - shall add it to mental and, soon to be written list, to take to doc.

Many thanks.

I use viscotears and have no problem with them. Is yours the gel or drops?