How to keep going

[justbob]

How do/did you guys keep your spirits up before you made any progress? It's been months I just get told to carry on as if it's nothing, discouraged from seeking more help when I've seen "experts". How do you keep fighting when everyone wants you to give up?

[André Pereira]

Justbob,

One of the most comforting things to me is this forum.

Good to know that here we can talk to people who understand what we feel.

I do not usually talk much about my treatments with others. Most do not understand. I confess I'm not the best communicators. But this way I avoid comments that could shake me.

Discouragement periods will always exist. Try not stop your search this time.

I also talk to some members of this forum by email or private message. It is comforting to have a more personal conversation with someone who understands you.

There are many people here with an unbelievable knowledge. Try to be aware of what they write.

Look for people who have the same cause of your problem to talk.

Read topics or people with the same symptoms or cause.

If you do not know the cause. Is there a good first step.

If it does not to find out the cause, find out all you can about the condition of your eyes. What is wrong? Meibomian gland? Aqueous disability? Lagophtalmos? What is my tBut? Schimmers? What irritates my eyes? Wind? Air conditioning? Any allergies? I have an illness that may be affecting my eyes? Rosacea? Sjogren? My food is healthy? Some food makes me sick? The drops I use make me wrong? Use many drops? use a few drops? Which drops are there? Autologous serum? Eye drops without preservatives? Natural eye drops? Use cold drops? Sleep can affect me? Stress? Physical exercise? How much moisture in the air affect me?

You see, are MANY things that can affect us. I wrote a lot of stuff up there, but there are more.

Knowledge is power. Take your time.

I always tried to isolate a factor to find out if it could help me or hurt. for example: If I'm going to start using cold eye drops, I try not to change anything else in my routine. So I can know more precisely how much it helped me. I monitor even the humidity with a hygrometer. Moisture makes a big difference to my eyes. The amount of sleep. The food ingested.

I see you joined a short time. I do not know how long you follow this forum, but three months is a short time to have a control over your problem.

I will not speak to you not be discouraged by that time it happens.
What I do is: use my moments of sadness to read more. Thus, when passing, my axes will be sharper.

I also work to try to get out of sadness. I talk to people who know what I mean. I also do therapy with a psychologist, which helps a lot.

I admit, sometimes it is not easy. But in the end, you overcome. Believe It.

Good luck!

[Santaklauzz]

I don't. I've felt like I couldn't take it anymore more times than I can count. But you go on. There is no alternative.
You keep searching, trying. Every straw you've got. Hoping you will find something. Hoping it will get better. Until one day it does.
Until then, you do what you can to get by. Trying to cope.

The things that help me the most are:
1. Mindfulness and stress reduction
-> trying to live in the moment, not overthinking things all the time.
2. Social contact
-> talking to family and close friends, not only about your eyes.
3. Taking the initiative.
-> always trying out something new so you feel like you're moving forward instead of being stuck in the same place with no hope of recovery.
4. Being your own doctor
-> getting to understand the nature of your disease and refining those concepts every time you read something or when you try something and it works/doesn't work.

[No tears in ATL]

This may sound almost cynical, but it is not.

Distraction.

Distraction with positive things, or some new goal. Always keep busy with little projects that bring you satisfaction, or read/watch on topics that give you an "aha" moment. Volunteer/mentor others--interact with folks that are worse off, as it can put a lot of things in perspective.

[woodart]

As someone who has suffered with this for over 50 years it is almost impossible not to get discouraged. You are luckier then me as you have the internet now and this board and lots going on about dry eye. You have to keep getting info and trying things until you hit what works for you. There are many things to try. I have seen many docs and unlike years ago I don't hesitate to see new ones. There is a lot of reading in these boards that go way back and you will find many that will sound just like you and what they did. There is so much hope for you now and it may take a long time to try the many things out there looking for the one or combination that works for you it may be soon if you hit it on the next try. And if you get the bulletins put out here which Rebecca does as well as she can as she is a long time sufferer too she is good at hearing about the latest things coming out and research and letting us know which gives us hope. She and everybody else here have pretty much tried it all. I don't know about the others but I am off and on the board depending on my eyes. We are all here for the same thing and you will have to figure out what works for you in terms of relief and coping. People here are eager to help.

[justbob]

There are many people here with an unbelievable knowledge. Try to be aware of what they write.

Look for people who have the same cause of your problem to talk.

Read topics or people with the same symptoms or cause.

There's so many posts, it's overwhelming when you can't use pc freely, I've made it worse using pc before which makes it extra stressful, hurts a lot sometimes too and have to rest.

If it does not to find out the cause, find out all you can about the condition of your eyes. What is wrong? Meibomian gland? Aqueous disability? Lagophtalmos? What is my tBut? Schimmers? What irritates my eyes? Wind? Air conditioning? Any allergies? I have an illness that may be affecting my eyes? Rosacea? Sjogren? My food is healthy? Some food makes me sick? The drops I use make me wrong? Use many drops? use a few drops? Which drops are there? Autologous serum? Eye drops without preservatives? Natural eye drops? Use cold drops? Sleep can affect me? Stress? Physical exercise? How much moisture in the air affect me?

I think it's MGD, started when my eyelids got red during a course of steroids. I've had varied TBUTs (drops using probably effecting it), not really getting any consistent or meaningful answers for a lot of stuff.

Knowledge is power. Take your time.

Isn't it important to find out and do something quickly? And I might be doing wrong thing, pressure?

I see you joined a short time. I do not know how long you follow this forum, but three months is a short time to have a control over your problem.

I know that, but I can't make any progress at all only stay the same or go backwards .

1. Mindfulness and stress reduction
-> trying to live in the moment, not overthinking things all the time.

I find it very hard to do, probably easier to learn before your stressed.

2. Social contact
-> talking to family and close friends, not only about your eyes.

I don't really have anyone, people I thought cared didn't want to know once I got ill.

3. Taking the initiative.
-> always trying out something new so you feel like you're moving forward instead of being stuck in the same place with no hope of recovery

I'm ending up with a longer and longer list of things to get by, e.g. supplements, heat. Think supplements (and probably stress) are putting me off my food, losing weight, can't sleep etc (my eyes wake me up somehow, and I have restless legs too).

4. Being your own doctor
-> getting to understand the nature of your disease and refining those concepts every time you read something or when you try something and it works/doesn't work.

Can't write my own prescriptions though, and some things I'm afraid to try on my own. Quite a lot of the things I see people try I know I can't because my situation has what appears to be an ununsual twist (typical).

Distraction with positive things, or some new goal. Always keep busy with little projects that bring you satisfaction, or read/watch on topics that give you an "aha" moment. Volunteer/mentor others--interact with folks that are worse off, as it can put a lot of things in perspective.

I've used to use distraction for depression before, but now I can't use my eyes freely it's not very effective since a lot of those distractions are possibly bad for me, which I can't help thinking about when I'm doing whatever is supposed to distract!

[Guest]

Hi justbob,

Firstly let me just say you're not alone, please know I'm being sincere when I say I'm putting my heart on this page as I know what you're going through. I really do. I read your first post, it's very similar with what happened to me. I was very run down and very ill - not last December but the one before that - I got a virus that somehow infected my eyes. This triggered off my blepharitis and in turn, caused issues with Mgd. My eyes went from clear and white to a network of angry red veins. My eyelids went bright pink and I struggled continuing the computer work in my job as it just burned. I was prescribed drop after drop after drop, I was desperate and, at the time, didn't know I had blepharitis or Mgd (I didn't even know what it was!) my gp kept fobbing me off with more steroids and my eyes got worse and worse. It took months to finally persuade my gp for an eye appointment where I finally got a diagnosis. By this stage it was too late. I panicked and was pouring all sorts unnecessarily into my eyes, disrupting and angering my tear film and causing myself more physical and emotional pain. I quit my job, became severely depressed, I became obsessed with my eyes - in particular their appearance.

This all sounds very bleak but I have to say this is a blip in my life and it will be in yours too. I'm 70% better and you will get there too. So many people have been and gone on this forum because they have managed their symptoms and moved on.

I don't want to dish out tons of advice (I know how much it makes your head hurt!) I'll just tell you what helped me. Firstly, encouraging natural stimulation in the eye without overdosing on eyedrops. I used a heated blephamask (a brand) on my eyes for ten solid minutes each night, doing gentle massages to encourage those little oil glands in your eyes to work! Also, keep your eyelid and eyelashes clean at all times, this means no bacteria will get into your eye and prevent future infections. There's eye scrub brands like ocusoft but I just use tea tree foam and gently 'scrub' over my lashes and rinse well with cold water! If you use drops ensure they are preservative free but try not to use them anymore than you have to.

About how you mentally pick yourself up from this, if things seem too overwhelming then stop reading. Turn off the computer and get yourself into a 'safe space' where you can clear the contents of your head. I've had very dark days where I had to forbid myself from dwelling any more on the subject. Just taking a bath, making a cup of tea, sitting outside, stroking a pet - anything small to relax yourself.

Also have faith. You're obviously determined enough to reach out and get help, that's why you are on here, so just know on your bad days that, when you're feeling stronger, you do have the strength to fight this through. It took me a while to figure out where I was going wrong with my eyes and when I felt like I was at giving up point I just reminded myself that I am a lot stronger and braver than I give myself credit for.

If you don't have anyone offline who shows support then find it here. I've made friends with some individuals on this forum and they have been amazing. PM me if you like. Last year I felt like this was it, no hope, just bright red painful eyes. Now when people look at me they can't tell there's a problem. That's progress and you'll get there too! X x x

[justbob]

As someone who has suffered with this for over 50 years it is almost impossible not to get discouraged.

.

You are luckier then me as you have the internet now and this board and lots going on about dry eye. You have to keep getting info and trying things until you hit what works for you. There are many things to try.

Doctors don't say that of course .

I have seen many docs and unlike years ago I don't hesitate to see new ones.

It's hard when everyone thinks your crazy and should just get on with it. Did you just see anyone and everyone you could? Aren't that many different hospitals near me and travel is now difficult.

There is a lot of reading in these boards that go way back and you will find many that will sound just like you and what they did. There is so much hope for you now and it may take a long time to try the many things out there looking for the one or combination that works for you it may be soon if you hit it on the next try. And if you get the bulletins put out here which Rebecca does as well as she can as she is a long time sufferer too she is good at hearing about the latest things coming out and research and letting us know which gives us hope. She and everybody else here have pretty much tried it all. I don't know about the others but I am off and on the board depending on my eyes. We are all here for the same thing and you will have to figure out what works for you in terms of relief and coping. People here are eager to help.

Thanks.

[justbob]

Firstly let me just say you're not alone, please know I'm being sincere when I say I'm putting my heart on this page as I know what you're going through. I really do.

I believe you .

I read your first post, it's very similar with what happened to me.

I should update it, but I felt so disheartened I couldn't face it. And I didn't think anyone would read it anyway.

I was very run down and very ill - not last December but the one before that - I got a virus that somehow infected my eyes. This triggered off my blepharitis and in turn, caused issues with Mgd. My eyes went from clear and white to a network of angry red veins. My eyelids went bright pink and I struggled continuing the computer work in my job as it just burned. I was prescribed drop after drop after drop, I was desperate and, at the time, didn't know I had blepharitis or Mgd (I didn't even know what it was!) my gp kept fobbing me off with more steroids and my eyes got worse and worse. It took months to finally persuade my gp for an eye appointment where I finally got a diagnosis.

You have an awful doctor .

By this stage it was too late. I panicked and was pouring all sorts unnecessarily into my eyes, disrupting and angering my tear film and causing myself more physical and emotional pain. I quit my job, became severely depressed, I became obsessed with my eyes - in particular their appearance.

I totally understand that, eyes make you panic, other people don't know what that's like. Doctors should never let it get to that stage.

This all sounds very bleak but I have to say this is a blip in my life and it will be in yours too. I'm 70% better and you will get there too. So many people have been and gone on this forum because they have managed their symptoms and moved on.

It's the lack of support from family, friends, doctors, and being left to self treat, feeling your just broken for rest of your life is what feels bleak.

I don't want to dish out tons of advice (I know how much it makes your head hurt!) I'll just tell you what helped me. Firstly, encouraging natural stimulation in the eye without overdosing on eyedrops. I used a heated blephamask (a brand) on my eyes for ten solid minutes each night, doing gentle massages to encourage those little oil glands in your eyes to work!

I've used heat and massage (or is it expression, same thing?), can't seem to make progress though.

Also, keep your eyelid and eyelashes clean at all times, this means no bacteria will get into your eye and prevent future infections. There's eye scrub brands like ocusoft but I just use tea tree foam and gently 'scrub' over my lashes and rinse well with cold water!

I want to try stuff, but I've still got a chronic inflammation problem (mostly healed supposedly) and I don't know how safe it is *, so I have to go with what my doc says. And unfortunately he says there's nothing wrong now! And I shouldn't decrease treating my eyes and resume normal life, but he's said a lot of things that don't make sense or contradicts himself.

* Used saline drops to rise after warm compress ONCE a month ago before bed, been worse ever since, pain in particular, doesn't seem to take much.

If you use drops ensure they are preservative free but try not to use them anymore than you have to.

Don't have a choice, only 1 kind I can use, see above about dangerous saline.

About how you mentally pick yourself up from this, if things seem too overwhelming then stop reading. Turn off the computer and get yourself into a 'safe space' where you can clear the contents of your head. I've had very dark days where I had to forbid myself from dwelling any more on the subject. Just taking a bath, making a cup of tea, sitting outside, stroking a pet - anything small to relax yourself.

Difficult to forget about it when I have to keep doing stuff or it hurts though!

If you don't have anyone offline who shows support then find it here. I've made friends with some individuals on this forum and they have been amazing. PM me if you like. Last year I felt like this was it, no hope, just bright red painful eyes. Now when people look at me they can't tell there's a problem. That's progress and you'll get there too! X x x

Thanks .

[woodart]

I don't know the area you are in. We have lots of eye docs here in Boston. But good ones for dry eye are hard to find. I don't know if you posted your area but maybe doing so will find someone here who may know someone to try. The last two eye docs I saw were both good in their own way. The visits were anywhere from 3 to 5 hours long. And I didn't get the usual just use eye drops routine. One I had to give up as I didn't have the money to keep going. The one I see now I have insurance for. He is pretty much up to date. I can tell he knows what he doing. Learn as much as you can.

[justbob]

No such luck for me, I live in south wales uk, no good doctors here that I know of. Travel would be difficult now but if that's my only option I'd have to.

[MGD30]

No such luck for me, I live in south wales uk, no good doctors here that I know of. Travel would be difficult now but if that's my only option I'd have to.

Travelling in general is difficult or travelling to USA? There have to be good doctors in London. Finding the best doctor and listening to them is the most important thing you can do. There is no reason why shoulnt be seeing the best doctor in the country if your problems are this serious. I flew half-way across the country to do this. The doctor that I found worked with my local eye doctor so that I woulnt have to go back often. I'll be going for a second visit after almost a year. Do whatever you can to find the best doctor in the UK and go see him/her.

[justbob]

Travelling anywhere is difficult now. I'm sure there are good doctors somewhere, but how to find them, horrible to go all that way and get a bad experience.

[woodart]

Guess I cant help out there but I have seen posts here from the UK. Hopefully someone will jump in here with some names. Unless these is a forum here for finding a doc in the UK here or maybe starting one.

[littlemermaid]

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

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

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.

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 just read Dr Phil Hammond's new book 'Staying Alive: how to get the best from the NHS - advice from a doctor' (audio may be available). Most of what he says has been my experience - that we can collect our own medical records, ask questions, coordinate our own treatments, join patient groups to get the latest experiences and study our illnesses. It took years of me asking whose job it was to coordinate treatment - paediatricians, consultants, GPs - until eventually I accepted that no one was going to do this for me and that the choices were mine.

Families are difficult. I guess we have to think how we behave when other family members get ill, what our expectations are, and be thankful for anything we have. My husband pays the house bills, thank goodness, but has been to only one doctor appointment in 6y. Maybe it was better that he did not have to take time off work or get involved. People pay me to attend hospital with their elderly relatives now because they just can't get time off - this includes emergency admissions. It's not ideal. We just have to cope however we can. And thank Rebecca for this forum.

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