From disaster to TRIUMPH, or Life Goes On!

[SimpsonDesert]

Dear Rebecca and other Dry Eye Zoners:

I have not visited or posted on this excellent website for ages. I’m overworked, rather tired and battling to get really fit again. You know what – this is a horn-blowing, drum-rolling, troupe of baton-twirling majorettes TRIUMPH!

It means that life is back to what passes for normal in this neck of the woods. My post-surgical dry eye has improved to the point where I’m now fully engaged with the everyday business of living without my every waking moment being dominated by fear, pain or both. Fear that my life was effectively over, that I would never again enjoy a long hike on a windy day, never go anywhere without a swag of eye-supporting paraphernalia, that I would be severely compromised in my ability to earn a living or to fulfill a long deferred hope to travel. And pain – or constant nagging discomfort that reduced my being to a miserable bloodshot suffering pair of >>EYES<<.

It has now been two years and six months since the sky fell in.

Before posting any sort of ‘triumph’, I wanted to be really sure that recovery was not just a flash in the pan and no false hope or misleading advice was offered. This has been the trajectory:

One year of physical and mental suffering with the condition essentially ignored. It did NOT ‘go away’ by itself!

After receiving proper treatment, some 9 months of gradual improvement to near-normality by subjective feeling and measurably improved indicators such as TBUT, absence of dry spots etc. (for treatment, see thread ‘Dry Eye Clinic – Sydney Australia' in Plug-a-Doc Intnl, or my earlier posts).

Then continued slow improvement, followed by complacency, overwork and the reappearance of itching, redness and dry-spots. Eeeek.

Panic stations resumption of anti-inflammatory drugs and drops for a short period, resulting in a rapid return to almost-normal.

Nasty little setbacks:
Is Dry Eye a chronic condition once experienced? It is so common on this website to hear of people who were doing just fine for years, then experiencing a disheartening and persistent resumption of symptoms. My dry eye Doctor put the likelihood of relapse at a discouraging 100%. So do we panic?

Let’s not. As indicated above, it is possible with good treatment and patience to vastly improve a badly inflammatory condition (can’t speak for other causes). Then the trick I believe is to pounce at the first hint of telltale soreness, itchiness, stinging in water, desire to rub etc. Nip it in the bud! I use over-the-counter single serve anti-allergy drops sparingly (Zaditen), plus omega supplementation, occasional TheraTears and a low dose of doxy. So far so good. Dr says the idea is to learn to identify and control downhill slides to avert the need for medical intervention.

Look after yourselves:
Easier said than done when you feel miserable (or worse!), resentful of onerous eye routines, stressed about pain, money etc. Eating sensibly, resting and exercising can seem an imposition at the best of times but sometimes a bout of serious ill-health can lead to all sorts of re-evaluations, so if flogging yourself consider some long term changes that will also (indirectly) help your eyes, and certainly your sanity. Yeah - I know circumstances often dictate.

Finally – a huge thank you to Rebecca. Countless numbers of people owe you an immense debt for being there for us in desperate times. The best way to repay this is to help one another when and where we can.

I may be contacted via this website. It would be a good idea for Australian sufferers to network a bit. Anyone have ideas? Are there existing mailing lists or newsletters where we could throw a dry-eye lifeline?

Regards and best wishes to All.
Simpson Desert (knee deep in water, flowers, wildlife…)

[Hopeful2]

Hi Simpson Desert,

What excellent news you have to share with us. I can't tell you the number of times I have asked Rebecca where all the triumphs are because there seem to be few posts. Thank you for not being one of the members, who got better, and moved on. Your story is and will continue to offer inspiration, encouragement and hope.

Now I'm going to need to review your post highlighting your treatments. I do think finding a doctor who knows 'dry eye' is really key. I'm just curious to know if your doc also does lasik eye surgery? Are you now able to walk outside on a windy day and worry about wind getting in around your goggles? That would be sooo cool, or rather liberating.

I used to be an avid fitness enthusiast . . . before lasik. I went from watching what I ate so that I could trim down . . . to watching what I ate in order to consume sufficient calories to keep from losing more weight : ( After just about six months, I am starting to think about renewing my gym membership. I am sure that getting the circulation going throughout the body will certainly help to heal the eyes. Also I remind myself of the workout high!!! All those endorphins must help with the lingering anxiety that is waiting guardedly for the next dry eye moment. I've also reintroduced my morning protein shake. I think that protein consumption is key to help repair tissue damage, including the eyes.

I don't know if you still experience any eye pain. The past several days I have had some success with focused eye relaxation sessions. It might be too premature to post about it because it is still so new for me. However, I am quite impressed with my results so far, that I would like to share this with other DEZ members. By consiously relaxing the muscles around my eyes, forehead, neck and cheeks, I am able to experience relief from the sharp pains I was experiencing at the tops of my eyes. A bonus to this activity is that I feel my eyes start to tear. I also notice that my mouth becomes more moist at the same time. I have one eye that is more dry than the other and if I wait too long before doing this exercise the pain returns. Prior to this eye relaxing regime, I had tried, unsuccessfully, an antidepressant in hopes of finding some relief from the eye pain. The eye relaxing technique seems to really help me.

I wish you continued improvement in health and lots of rejuvenating outdoor experiences.

Hopeful2

[SimpsonDesert]

Hi Hopeful2
Thanks so much for your kind words. I nearly called you "Hopeless", Freudian slip or what? To answer your questions first:

Yes my Doc does lasik. I don't know what percentage of his practice this involves, but Vision Eye Institute (a large umbrella organisation) springs immediately to mind as a major lasik advertiser. Now I think of it, the ads may have tailed off in recent years? There is a crowd that advertise lasik in GYMS - I can't think of their names - but I consider this an utterly wicked practice. In my travels I have only found one Ophthalmologist here who explicitly repudiates lasik in her modest advertisements. The term 'selling arms to both sides of the conflict' springs to mind but in this case there is no interest in dry eye for the most part. No money to be made? Or no appetite for acknowledging the downsides of a lucrative trade? Or a bit of both?

Few people can tolerate thinking themselves actively immoral, so major exhibitions of cognitive dissonance (discomfort caused by holding conflicting ideas simultaneously) are on display when these subjects are raised with Drs. Or not raised...

Perhaps you can bring some good out of your own circumstances by discrediting the lasik trade at every opportunity. I have unleashed potted rants on cabbies, shop assistants, persons at bus stops etc on the evils of lasik (much info from this site, as my own surgery was for cataracts). Two young people have told me that I single handedly put them off the idea after they had looked into it properly - and one lady is onto all her friends about it too! A small couple of wins. In this way, public opinion gradually changes.

Wind in my goggles - what goggles? With increasing TBUT counts and healing, I was able to ditch the goggles (once worn whenever outside) and as we speak am doing fine in the gritty pollen-ridden gales of a Sydney spring. Ten months ago I went swimming in the sea without drama, and drove with the window down more or less by mistake, and was astonished. However, I'm not quite 'normal' as in back to the carefree days pre-surgery. The little relapse taught me so, and a couple of indicators are still not robust - schirmers test, and TBUT capable of going backwards. Dr advised not to 'coddle' the eyes and live as normal a life as possible, and psychologically this is winning advice - this was in the early phases of dry-spots, low TBUT and consideable pain and redness. He was right.

That said, I now know to exercise sensible precautions without being ruled by fear - I keep the goggles and assorted drops on hand, keep my eye area clean, run hot water on them in the shower, use dietary supplements and watch the overwork factor in front of screens. Moral of story is to try to get back to near-normal, then stay there. You are so right about getting proper professional monitoring. See my post re the Sydney clinic and the treatments offered. I'd like to encourage you that improvement is possible and I believe (like a cracked record) that inflammation control plus time is the key. Lasik cuts I've been told are more drastic than cataract ones, so maybe a different healing scenario, but hopefully more similar than different.

Pain - no longer, but slight low-grade 'sensation' of dryness on occasions. If I roll my eyes in their sockets there is a mild grittiness as opposed to no feeling at all - for all the world as though a joint needed extra lubrication while still functioning. Redness and veining still (I'm no portrait), but much improved. Itchiness, discomfort or stinging under water, however mild is now a red alert to pay attention and use the anti-allergy drops till it settles down.
I had a mysterious tenderness when pressing on the tops of both eyes - cause unknown, and it did clear up.

Yes, do go back to the gym and get stuck into your old routines, or even push the envelope. It is absolutely all WIN, for the reasons you've mentioned. Ditto with the correct eating. I found that a good cardio thrash did help the eye pain at its worst, at least temporarily, and the sense of control and anger-release was priceless. I know exactly what you mean by waiting for the next blow to fall. That takes up such a lot of mental energy. I found that eased once I'd sustained a pain-free life for a few months, so I reckon slay that beast by trying to improve your eyes to mostly pain-free, then consolidate the gains. Oddly I lost the fitness plot once the worst was over - fell off my perch and put on lots of weight. This post-stress collapse is common apparently - how often to you hear of people getting sick while on holidays, when they are at 'liberty' to do so?

I'm cautiously hopeful that I'm now totally back on track and have resumed fitness and travel plans shelved for a couple of years! As regards your success with eye exercises - I'd keep it up for a few months then post if success is consistent. One of my gripes is the way people will over-enthuse about short lived improvements, that may be attributed to chance, or placebo (which is a true 'effect'). These are often the posts that get the most 'eyeballs'. Just my two bobs worth. :-)

If you get a good Doc in Canada, post a plug-a-doc here. The more we can encourage good practitioners the better. Must go - to see Dr Chan as it happens. I'm a fiend for measurements and hope the TBUT of 5 (brag, brag) from last visit holds or even improves. Thanks again, and hey I reckon you'll be hiking in those gales once more - but you have to get aggressive with seeking out the best treatment. I got absolutely nowhere till that was sorted...

So all the best to you too.

Simpson Desert

[Rebecca Petris]

WOW! Can't believe I missed this the other day.

It means that life is back to what passes for normal in this neck of the woods. My post-surgical dry eye has improved to the point where I’m now fully engaged with the everyday business of living without my every waking moment being dominated by fear, pain or both.

Cartwheels time for me. I really needed to hear something like this today. THANK YOU so much for coming back to post in so much detail. I am so thrilled for you and really pleased to see a well-articulated story of your trajectory and the all-important hope it brings!!!

In this way, public opinion gradually changes.

How very, very right you are. I think of all the people I've had a casual conversation about who mentioned that among all their acquaintance with good LASIK outcomes, they knew JUST ONE person who had had some kind of problem and knowing this seemed MORE than enough to give them pause. Not everyone reacts this way but many, many people remember when they hear about a poor outcome, even if from a total stranger.

[Hopeful2]

Hi Simpson Dessert,

I have been sending out the lasik alert to anyone who will listen. The other day I was telling a new acquaintance about my lasik experience and how preexisting rosacea and dry eyes can increase the likelihood of post lasik dry eye. Well she nearly fell off her chair! As she regained her composure she explained that her husband had had lasik done a while ago so she figured it would be ok for her to have the procedure. Having heard my story, she exclaimed that I had saved her from a possible bad experience, as she could only wear her contacts for four hours at a time and she has facial rosacea. I do love it when people are open to considering new information!

I too love numbers, statistics, data. One of the things that I have found so unsettling about the dry eye business is that when it comes to getting a TBUT I have often gotten diverse results. Having done a little more research, I realize that both of the professional who have calculated my TBUT, have actually used different methods. The one doc who put a drop of dye in my eye said, 'your TBUT is not that bad, about 8 to 10 sec.'. The other doc, using a moistened paper strip to administer the dye, described by TBUT of being 2 to 3 sec. I was devastated . . . from 8 and then to 2 sec over the course of a week! Since this time I have stumbled across something called the non-invasive TBUT test. You can do this yourself by blinking and calculating the amount of time that passes from the blink to the first sensation of burning. I have started to use this procedure to get a number assessment of how I am doing. I have decided that I would like to see how my TBUT fairs over the course of the day. So far, I only have data for a couple of days, but there are no surprises. I start the day with a longer TBUT and find that it gradually diminishes over the course of the day. Using this procedure, I can easily tell that my drier right eye (the one that was first operated on), consistently has a substantially shorter TBUT. As an aside, I wonder how many other people out there have more dry eye issues with the eye that first underwent the surgical procedure?

I am learning what a HUGE difference adequate sleep can make. The other night I was tossing and turning because I knew I had to get up early to go to the hospital to get blood drawn for serum tears. The anticipation of the procedure was enough to disrupt my usual light sleep. I ended up with a terrible eye day the next day and needed to remind myself constantly that this was a reflection of the poor sleep from the night before.

I will certainly get out to the gym again. I have learned that exercise increases testosterone levels (in males and females) and that testosterone is important for good meibomian gland function in menopausal women. Anyway the increased circulation has got to be helpful with the healing process.

Out in the wind with no goggles!! . . . I am soooo happy for you! I gaze enviously at people who are out jogging in the wind, without goggles or semi closed eyes.

Thanks again for your detailed victory post and supportive words of encouragement!

Hopeful2

[SimpsonDesert]

Hi Rebecca, if you're still reading -

Always glad to have made someone's day! I agree with you that followup is so important. I terrified myself witless with dreadful stories when I first encountered this site - and while this validated my experience (I wasn't just a sook, a neurotic complainer etc) and gave a wealth of solid information, it also desperately needed to be balanced by realistic tales offering hope - these were in much shorter supply.

I think even the word of a stranger can 'crystalise' or make conscious a suppressed doubt, and that is the value of intervention. How often do people say they could have bailed out of lasik, often wanted to but were almost hypnotised by the trajectory they were on...

I'm meditating a later post on depression - a subject with which I'm only too well acquainted as a lifetime sufferer. It can really bowl people over when combined with pain and suffering, esp if never before experienced in full intensity. This for later.

Hi Hopeful2 -

I think your idea of a personal dry-eye test is fantastic and I might even pinch it. The burning sensation will eventually start with any eye. Dr Chan told me it is quite hard even when doing it all the time and using the same dye to standardise the test. He said with his dye and method that 8 seconds is excellent and he has never seen 10. So results will vary greatly with practitioner/dye/occasion.

The temptation (like the scales when trying to drop weight) would be to do it every 5 minutes! I'd do it with a stopwatch (or something similar) every month and record the results - never mind the actual 'count', just try for consistency of measurement and see if you get improvement. Do it at the same time of day, and before using any drops etc.

Another good indicator with the dye is the presence or absence of 'dry' spots - this is quite objective. I had moderate-severe dry spot staining, and I was thrilled when they all disappeared even though discomfort persisted for some time.

Agree with everything you say about the gym and exercise. If anything, it's even more important after menopause as you do need to work that bit harder at everything. I'm now seriously back at the gym, battling tiredness and complaining knees, but keep thinking about how I so want to lead an active life again.

Here's hoping you get a good doctor who will treat and monitor your healing. I really would like to hear of you turning the corner, so you can always PM me via this site.

Regards, Simpson Desert