Help me educate certain people

[justbob]

Hi, I have to listen to this argument over and over so anyone who can reply and help dispel it with their experiences would be welcome - "just try using heat less often and if it doesn't work out go back, and everything will go back to how it was before instantly" (paraphrased).

[No tears in ATL]

I'm not sure what that means, honestly. Is someone telling you to reduce warm compresses?

[justbob]

Yes.............

[woodart]

There is a lot of trial and error with this. You have to try things and see what works for you. One compress a day may work for some and others may need six. No one cure fits all with this. Too many variables. I am not sure myself, but just being bearable is a blessing.

[justbob]

I think 6 would inflame my eyes a lot, I'm discouraged from doing more than 2, but comfort is much higher if I do 3.

[Phillips55]

I think warm compresses can be more of an art than a science. I am one of those people who feel worse if I do daily warm compresses, probably because I have roseca. For me at least twice a week seems to do the trick and I've read that even once a week can seriously improve oil flow.

[littlemermaid]

Justbob, if anyone needed a local support group, it's you, buddy... You would be able to compare everyone's regime and the state of their eyes, and find out which docs they are using. When we meet other dry eye people, we realise just how different we are. Did you have any luck meeting up with the local Sjogrens Group? Might as well take advantage of anything available like that.

[PotatoCakes]

Sometimes the easiest thing to do is smile, nod and ignore the 'advice' you are offered or tell them 'yes, you've tried that and unfortunately, it didn't work for you but you are working closely with a physician and following their advice'.

For some people, there is nothing you can say or do that will convince them you don't need or want their advice (try being pregnant!) so barring complete avoidance, you just have to grin and bear it.

[justbob]

I think warm compresses can be more of an art than a science. I am one of those people who feel worse if I do daily warm compresses, probably because I have roseca. For me at least twice a week seems to do the trick and I've read that even once a week can seriously improve oil flow.

I don't think more will help, the oil isn't *that* thick, just a little sticker (particularly right eye). My eyelids are red and there doesn't seem to be much coming out, but I don't know why. Anybody else had similar?

Justbob, if anyone needed a local support group, it's you, buddy... You would be able to compare everyone's regime and the state of their eyes, and find out which docs they are using. When we meet other dry eye people, we realise just how different we are. Did you have any luck meeting up with the local Sjogrens Group? Might as well take advantage of anything available like that.

Thanks, unfortunately support is the last thing I'm getting. No I emailed them but I didn't get a reply, so far I don't ever get replies.

Sometimes the easiest thing to do is smile, nod and ignore the 'advice' you are offered or tell them 'yes, you've tried that and unfortunately, it didn't work for you but you are working closely with a physician and following their advice'.

But I'm not working closely with a physician and following their advice, his advice is to decrease treatment and resume normal life because problem doesn't exist (previously said I had MGD, seems to change his mind a lot).

For some people, there is nothing you can say or do that will convince them you don't need or want their advice (try being pregnant!) so barring complete avoidance, you just have to grin and bear it.

I need help not advice pulled out of backsides, but other people to seem to think that is help. And when it get's worse I'll have to listen to it was self inflicted because I didn't listen to said advice!

[littlemermaid]

Justbob, hope you don't you mind me asking, are you disabled? Are you reliant on other people? There's a new programme 'Inside Harley Street' on BBC2 which helps us understand how when we pay for private medical service, we are the boss. I wasn't used to this at all.

Sjogrens UK are a patient group, not a service, so it will be volunteers only, all of whom will not be well at times. It's self-help and sharing info and tips, so you'd have to want that and be with very vulnerable people, like those here.

[justbob]

Justbob, hope you don't you mind me asking, are you disabled? Are you reliant on other people?

Yes to both, but now they won't help with my eye problems (denial they exist etc), I also have OCD so using PC was difficult even before, also effects reading, sounds like an excuse I know .

[littlemermaid]

Justbob, you are safe here with us and this is a caring community. Your eyes might take some time to heal. If you haven't got follow-up, or you've lost confidence with the private bloke, why not get a GP or Optometrist NHS referral to Cardiff or Swansea, so you can get a second opinion. I'ts amazing how differently docs assess and treat us. Teaching hospitals have access to the best meds too.

Eye Clinic Liaison Officers are there to give us advice and emotional support, for all problems, including eye pain and inflammation eg http://www.sightlinedirectory.org.uk...--eclo-service for the lady in Swansea, and Cardiff http://www.sightlinedirectory.org.uk...--eclo-service They can usually organise patient transport as needed, but it may be volunteer drivers.

Eye Clinic Liaison Officers always have a good inside knowledge of which consultants are good at what in their specialism, so if you are careful and diplomatic when you ask, you will get a secret recommendation! It might do you good to have the opportunity to attend an NHS hospital and lead to local support groups. Be sure to have a list of questions ready.

[justbob]

Justbob, you are safe here with us and this is a caring community.

I'm feeling very stressed.

Eye Clinic Liaison Officers always have a good inside knowledge of which consultants are good at what in their specialism, so if you are careful and diplomatic when you ask, you will get a secret recommendation! It might do you good to have the opportunity to attend an NHS hospital and lead to local support groups. Be sure to have a list of questions ready.

I emailed them, I'm not very good at being diplomatic though.

Got reply from Sjogren's group, they just suggested "any corneal ophthalmologist".

[justbob]

So far all I'm getting from Eye Clinic Liaison Officer(s) is any opthamologist, the standard response from everyone.