How to keep going

[justbob]

Hi Justbob, Sorry you are feeling down. Such good advice above. You can see how we all sympathise and care.

Thanks, nobody else does!

Cognitive behaviour therapy (CBT) and mindfulness techniques have helped many people here cope. It is a big help to find any kind of group to join or volunteer, doesn't matter what as long as we feel like we're contributing. Libraries seem to have plenty books bought through the IAPT scheme and there are courses online, including NHS http://www.nhs.uk/conditions/Cogniti...roduction.aspx and http://www.nhs.uk/conditions/stress-...epression.aspx.

I don't think I'm in a state to do much reading now unfortunately .

Samaritans are available 24/7 for advice - 01656 662333 (your local Branch), National telephone: 08457 90 90 90 (UK). If you want to meet people locally, I think there is a Sjogrens group in Cardiff http://www.bssa.uk.net/, and they would know the best docs to see.

You suggesting I go talk to the Sjogrens group or just contact?

Unfortunately, we've found paying heaps of money is no guarantee of success because it depends on the doc's knowledge and skill.

I know .

Thanks for letting us know you live in South Wales - maybe someone will see this (try PM to Hyperhead, dijon84, villfan22 Good-Dry-Eye-Specialist-in-Cardiff-UK&highlight=cardiff).

Both of them are inactive for almost a year+, thread is 3 years old too unfortunately.

The best plan for us was to be seen regularly in the NHS for monitoring - Swansea and Cardiff are regional teaching hospital ophthalmology centres, both 35 min drive away (train to Cardiff 30min, Swansea 40 min). Cardiff uni also has a good School of Optometry with a free easy access public clinic.

I got an appointment in cardiff uni soon. Maybe I should not wait to be disappointed, and make as many appointments as I can?

Bristol Eye Hospital is 1h drive, has a national Cornea Bank and is a centre of expertise for anterior segment conditions, equivalent to Moorfields national eye hospital. We have paid Private when necessary, particularly to get a good diagnosis and observation letter. However, if we only go Private with one doc, we don't get to see the teaching hospital team, available 24/7, and they might have other suggestions. Everyone has different knowledge and experience (like mechanics) and with a hospital team we can take advantage of all of that and get more technical vision tests. As MGD30 says, see an expert if needed and use local team.

But I'll need to wait quite a while if I go NHS? There's also less control over what I'll get?

Why hasn't your GP referred you to Swansea or Cardiff? Some of them are clueless on eye disorders - you can change GP if you want.

Because I haven't asked probably, he's certainly not proactive.

Unfortunately, many eye surgeons like to quick-fix and move on, even though they advertise as expert at assessing and managing the eye surface. It's good to find someone with an interest in 'ocular surface disorders'. Optometrists can give good advice, keeping in my mind they have sales targets on spectacles and eyedrops - why don't you use a high street optometrist for backup? I think most people here do that. They can also do referrals, especially if they are PEARS registered (Wales).

I don't see what a high street optometrist can do right now, I need a clear diagnosis?

Do you have another condition that gave you eye inflammation that could be helped in eg Rheumatology? Hope you feel better soon.

Nothing outside my eyes that I'm aware of.

[justbob]

Contacted Sjogrens group, going to speak to GP tomorrow hopefully (not hugely hopeful though).

[littlemermaid]

Let's hope your local Sjogrens group can give you advice on which consultants treat this well.

Some members set an email alert for Personal Messages (PM) when they are inactive or just decide to get on with their lives - here it is in the Settings options http://www.dryeyezone.com/talk/profi...do=editoptions. If you search and click on those Cardiff names, you may see their stories in View Forum Posts.

[justbob]

Ok, I messaged those 2 just in case.

[littlemermaid]

Good to keep trying new ideas - seek and ye shall find, so they say.

The NHS website is pretty good on reminding docs that dry eyes must be monitored and treated http://www.nhs.uk/conditions/dry-eye...roduction.aspx.

Also, Sjogrens Syndrome Foundation information https://www.sjogrens.org/ and country groups https://www.sjogrens.org/home/get-co...support-groups and local group contacts http://www.bssa.uk.net/. We don't have to have a Sjogrens diagnosis to participate because dry eye can have so many other causes.

Some docs are proud to say they've read the DEWS Report 2007 http://www.tearfilm.org/dewsreport/p...DEWS-noAds.pdf about some of the different possible diagnoses and treatments.

Here are the UK Clinical Guidelines they are supposed to be treating to http://cks.nice.org.uk/dry-eye-syndrome#!scenario

[justbob]

Think my eyes are worse today, hope it's not another apparent perm step back.

[justbob]

How do you all have the courage to disregard "experts", if you're told something you know isn't true? Do you doubt yourself?

[woodart]

Don't think any of us have heard docs giving us the proper advice. Some just may not care enough to keep up with it. Myself being older and run through the mill a few times I don't always accept what they say and now with the internet I can check on the information given me. But it puts you in a better postition being informed as now you know their expertise is lacking and it's time to move on the a real doctor hopefully with real expertise. Sometimes you just have to stick up for yourself.

[André Pereira]

There are several types of doctors.

1. Those who don't care about your difficulty and prescribe the usual. Eye drops.

2 the doctor realistic. He knows he can't help you. And forwards you to another doctor.

3. The effective conservative doctor. He works with tools "light". He can prescribe eye drops without preservatives. But anything beyond that.

4. Those who are great experts in a subject. If you're lucky their illness to be within the area of his expertise. Maybe he can help you.

5. The doctor concerned. He studies his problem and cares for it. This I usually consult regularly. He cares to check all your data and clinical developments. This is essential for me. You must have a doctor like this. But he alone doesn't solve the problem.

6. The innovative doctor. Can prescribe new types of treatments that are not widely tested and confirmed (just because they are new). Ex: Lipiflow; IPL, etc.

7. The experts. Widely recognized for their expertise in a given subject. They are reference. There are few. We usually spend a lot of money and travel to another State or country

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It's not that I don't believe in doctors. But some of the types above do not give to be taken seriously. Until I realized that I could believe, it took a while.

And something else. Our disease is very complex. There are many causes. Many variables. It is very individual. It is impossible for a doctor in a 30 minute consultation to solve something.

Is what I said in the first message. Unfortunately it takes time for us to achieve satisfactory results. But we did it.
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A very important step is to strengthen the mind. That will give us strength to go all the way. And each does so in a way: Faith (religion); objectives; Professional Psychology and stuff ...

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Just answering two things you said up there.

You're not wrong to want fast results. Just need to be aware that it can trample things step larger than the legs. And need to be aware that the result may be coming. If we expect something fast and it doesn't come, then comes the frustration.
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About restless legs. This sucks!
These days I was with restless legs.
But that's because I was without training.
After the first day I went back to the gym, the restless legs are over.

I suggest you to do some kind of physical activity. Besides all can help in strengthening the mind.

Lifting weights helps in two ways.
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And finally, you say you have difficulty in reading.
I think everyone here and I understand that. It's hard to spend a lot of time on the computer.

But there are ways to improve the experience.

I for example I used to read in my bathroom with sauna on. I took the tablet to the toilet, connected the blue filter application (helps in reading). Concentrate so you don't forget to blink. And turn on the steam from the sauna.

Ready. I extended my reading time.

It's weird? Yes, It Is! But it works.

[L8rgator]

I second distraction. I know what you mean by not wanting to do those type of activities because it takes using your eyes. If you are home alone, try making your own moisture chambers that are completely sealed to your face. You could do a simple knee & elbow bandage over one eye, and rotate back and forth. The bandaids can be wetted to keep a nice moist air in there - which helps the eye heal and will make the uncovered time longer and more bareable.

I've started cutting the middle out of these bandaids, and adding a duralar plastic sheet peice to the outside with tape. Works great as a total seal. Previously I had discomfort from the outer whites of my eyes even without the scleral. With a bandi-eye patch I feel no discomfort at all even with the lens out. Does get a bit foggy though with the true seal. But much much better than any moisture chamber I've ever had. The eye feels normal with this. But if I get an itch, I can't really scratch it under the bandaid so that drives me nuts. I wear this in public with an see-through eyepatch over it (http://www.ericksonlabs.com/Adult_Me...es_p/ap-br.htm) - which I can do since I only have one bad eye. Big sunglasses also do the trick . I made a vido of the patch making process, but I don't know what I did with it.

[justbob]

Don't think any of us have heard docs giving us the proper advice. Some just may not care enough to keep up with it. Myself being older and run through the mill a few times I don't always accept what they say and now with the internet I can check on the information given me. But it puts you in a better postition being informed as now you know their expertise is lacking and it's time to move on the a real doctor hopefully with real expertise. Sometimes you just have to stick up for yourself.

Thanks, that's both reassuring and not. This doctor has done me a double disservice because now my family think it's in my head, having mental issues makes it so easy for people to dismiss me, so if it doesn't work out now it's my fault for not listening to the "expert".

Is what I said in the first message. Unfortunately it takes time for us to achieve satisfactory results. But we did it.

Got to survive till then though, can't just put my eyes in a plaster cast.

A very important step is to strengthen the mind. That will give us strength to go all the way. And each does so in a way: Faith (religion); objectives; Professional Psychology and stuff ...

I've delt with depression before, but all the strategies I used won't work now!

You're not wrong to want fast results. Just need to be aware that it can trample things step larger than the legs. And need to be aware that the result may be coming. If we expect something fast and it doesn't come, then comes the frustration.

Well it's been months and it's getting worse, and I don't know what to do. If lubrication drops too much the problem under my top eyelid will get quickly worse again, and I'll be back on steroids, no pressure.

About restless legs. This sucks!

I've tried some exercises for it, but I'm not eating enough to support proper exercise really, lost a lot of weight on previous nasty steroid.

And finally, you say you have difficulty in reading.
I think everyone here and I understand that. It's hard to spend a lot of time on the computer.

But there are ways to improve the experience.

But even if you keep eyes comfy anything with reduced blink rate can effect MGD? And I keep seeming to go backwards.

I second distraction. I know what you mean by not wanting to do those type of activities because it takes using your eyes. If you are home alone, try making your own moisture chambers that are completely sealed to your face. You could do a simple knee & elbow bandage over one eye, and rotate back and forth. The bandaids can be wetted to keep a nice moist air in there - which helps the eye heal and will make the uncovered time longer and more bareable.

I'm not supposed to have anything press against my eye, also I've been told having eye closed for long periods is bad too, I can't win! I've got goggles though (also discouraged from using them! I'm allowed to breath though).

[justbob]

Talked to GP, he seemed to think everything revolves around drops though...

[justbob]

Saw another optometrist, basically just told me to see an opthamologist because my history is complicated. And we all know how keen opthamologists are to treat dry eye.

[justbob]

I saw another ophthalmologist yesterday, but made a mess of the appointment, I was too stressed and didn't ask right questions so I don't know if he's any good at all. He was dismissive of lack of progress over last few months (and going backwards) saying he can't comment since he wasn't there to observe it etc (was a bit funny about me going to diff doc). He doesn't like expressing/massaging glands in general, he mentioned plugs and only mentioned doxy (when I asked if there were other things to try such as), he wants me to come back in 3 months if there's no progress with continuing using just wc, supplements, drops, but I can't imagine how I'll last that long. I also saw an optometrist a little while back who prescribed doxy (without prompting), but I delayed taking it. Now I'm unsure what to do, suffer for 3 months, take the doxy, look elsewhere, any thoughts?