I miss my normal life and I hate the uncertainty

[hopeful_hiker]

I find it so painful to remember how just 7 months ago my life was completely different. I could bike in the wind with regular sunglasses on, even back in December. I was going to grocery stores and malls when visiting my family in the suburbs, just this November. I walked the streets of Toronto on cold and dry days and I did not feel a thing. And then bam, within a month I developed a full on moderate/severe dry eye disease. I have never used eye drops in my life before this December and my eyes never bothered me. This disease caught me completely off guard.

The uncertainty is the worst part. If someone told me, you need to do A, B, and C, and continue doing D and E for the rest of your life, and you will be okay in a year, I would feel fine. I can tolerate pain, discomfort, and the inconvenience, if I know there is an end in sight.

Instead it’s a guessing game. Will I get worse? Will Restasis help? It has been 4.5 months. Will Xiidra help? Is it my hormones after all? Do I have corneal neuropathy or is it purely a dry eye? If I add an allergy drop will I be ok? It is impossible to live a normal life in this complete uncertainty.

My my partner thinks I am depressed but I am only depressed because of my eyes. If I have a few good days, I instantly almost feel normal, sometimes even joyful. I am sure if my eyes got back to normal I would no longer have dark thoughts. I would have to work through PTSD, that is for sure though.

What got you through?

[Meibum Ian]

I could have written this word for word (apart from Toronto ).

Thank you for expressing your thoughts so clearly. The shared understanding on this forum is one of the things getting me through..

[MGD1701]

Thanks for sharing. What got me through

support from family

be positive, proactive, curious & with tenacity
this is how I found the pure HOCL spray, the 3rd attempt, which helped me free from constant watery etc (even all 10 doctors said I did not have inflammation - strange, right?)

learn/explore new things ...as dry eye is too new
- I enjoy it a lot as dry eye is a very interesting topic!

My eyes have been pretty fit enough to work again. The problem is it is hard to find a job since I have stopped working for a few years but maybe there would be a miracle! Well, if I try, might be there is still a chance! Wish me luck!

[ehsan372]

Hi. I'm very sorry for you and I understand you completely. I suffer from this illness for 4 years. I've tested all available treatments. Have you tried homeopathic remedies?

[hopeful_hiker]

Thanks for sharing. What got me through

support from family

stay positive, curious and with tenacity
this is how I found the pure HOCL spray, the 3rd attempt, which helped me free from constant watery etc (even all 10 doctors said I did not have inflammation - strange, right?)

learn/explore new things ...as dry eye is too new
- I enjoy it a lot as dry eye is a very interesting topic!

My eyes have been pretty fit enough to work again. The problem is it is hard to find a job since I have stopped working for a few years but maybe there would be a miracle! Well, if I try, might be there is still a chance! Wish me luck!

Thank you. I appreciate you spreading the word on this forum about what treatments worked for you. Do you have any idea what caused your issues in the first place?

As for work... One thing I learned with the dry eye is that health is number one. Whether or not one has an incurable or curable disease, the most important thing is to reach the best possible functioning state. Work, social life, ambitions, all that is within our domain, as long as we are in the best possible health (including mental health).

Personally, I found that informational interviews and job centers are the best starting options. Job centers can help with drafting the best resume. Informational interviews lead to new professional relationships. I did 15 minute informational interviews asking people about their career and advice (not asking them for a job). Also, doing your own projects or volunteering can help to build up skills and a more robust resume.

[Hokucat]

hopeful_hiker, I definitely felt the same as you. When I was homebound for 3+ years, and literally could not even read, watch TV, use the computer, go outside, etc., I was totally depressed too. I was in constant pain, I had no life, and saw no relief in sight. Several of my eye doctors and my rheumatologist said I had the worst case of dry eyes they had ever seen, but no one could help me after seeing many doctors and trying numerous treatments. But once I started getting better, that depression went away completely.

There were a few things that got me through the rough years:

First, is having people around who love and support me. I have a very patient, caring, and loving husband. He basically operated like a single parent taking care of our kids, doing all the cooking and cleaning around the house while working full-time, in addition to taking care of me. I would tell him I could not go on like this not only because of the pain and uncertainty of getting better, but that I felt so useless and felt like a burden. But he always told me he just wanted me to get better, not only for myself, but for him and our kids (lol, semi-guilt trip!). I also had several friends who took turns taking me to all my doctor appointments, and would stop by to chat or bring food over.

Second, is imagining how it would be when I could do just a few things with my family and friends again, and some normal daily activities like a brief shopping trip, watching some of my kids’ sporting events, etc. Thinking about getting my life back a little at a time helped me feel positive whenever I was able to do even a small thing I typically could not do. It helped that I had accepted my eyes likely would never get back to how they were before, but was always still hoping for the best.

Third, was continuing to better understand my condition and probable cause(s), and researching applicable new diet changes and treatments. This was difficult to do since I could not use my eyes for anything, so again this is where my husband and sometimes friends helped. Always looking for the next things to try, and hearing how it helped others, forced me to be just a little more forward-looking.

Fourth, is faith and constant prayer. Often, I personally ended up praying that I would be given enough faith that I could get better, things felt so dismal. I am not the most religious person, but I, my family, and many friends were always praying for a miracle for me. I do try to pray for everyone here in the forum by (screen) name too, as I feel this was key in my journey.

I will always have some degree of dry eyes because several glands atrophied, in the process of trying to find what helped me. But I am able to manage well and enjoy life again, mainly after getting probing, making the right adjustments to my diet, and wearing sclerals. It is a lot of trial and error so can take time, but once you find what you need, you could notice a material improvement quickly. When I started adding fresh lemon juice to my green tea 2x daily, in less than a week, I went from having constant debilitating dry eyes to moderate dry eyes...for me, that was something my body really needed. It was totally unexpected. So your resolution can be just around the corner, hang in there.

[hopeful_hiker]

Thank you for sharing, Hokucat. Isn't that crazy how different the treatments can be for different people. Do you know what lead to your dry eye issues?

Meibum Ian, sorry to hear we are in the same boat. I keep rereading recovery stories. People like Amy09 used to sound just like me, but have gotten better (Restasis helped Amy09 for instance).

ehsan372 Thank you for responding. I am going the conventional route first. What have you tried?

[Hokucat]

No problem. Probable causes for me are Sjogren’s Syndrome (likely, never tested positive), and reduced blinking from years of excessive computer use on the job and 2+ hour daily drive to/from work. I was also a long term contact lens wearer.

[MGD1701]

Main causes

partial blinker - office work.

+ use of ointment for some years (as instructed by doctors) without lid hygiene (none of 8 doctors told me). When I learn more, I now know ointment, specially with mineral oil etc can block glands & without lid hygiene makes it worsen - so terrible. Before LipiFlow, only ointment gave me relief in the day time. I told doctors, none of them warned me.

Done all necessary exams all ok. I do place health on my 1st priority as I am a firm believer that no healthy, we have nothing & prevention is better than cure.

In fact, my dream job would be something to do with dry eye, my new passion, so I could help others and myself. Maybe one day I could realize it.

Dont let negative thoughts control you.

[ehsan372]

ehsan372[/USER] Thank you for responding. I am going the conventional route first. What have you tried?

Yes. I have started homeopathy treatment six months and got very positive results.
Regular use of tea tree oil has also helped a lot. I use tea tree oil shampoo every day.

[ehsan372]

Main causes

partial blinker - office work.

+ use of ointment for some years (as instructed by doctors) without lid hygiene (but none of 8 doctors told me). When I learn more, I now know ointment, specially with mineral oil, can block glands & without lid hygiene makes it worsen. Before LipiFlow, only ointment gave me relief in the day time. I told doctors about this, none of them warned me.

Visited two rheumatologists and did all tests. All ok. One doctor is pretty sure I do not have Sjogren’s Syndrome but I will monitor it.

I do place health on my 1st priority as I am a firm believer that no healthy, we have nothing.

In fact, my dream job would be something to do with dry eye so I could help others and myself. Maybe one day I could realize it.

Dont let negative thoughts control you.

hi.I also found that using ointments and drops makes drying my eyes worse. Even the drops without the preservatives would get worse if I had consumed too much.

[Rebecca Petris]

My partner thinks I am depressed but I am only depressed because of my eyes.

I totally get what you're saying and yet... I think it's a mistake to see the two as chained to each other. Even when dry eye precipitated the depression and is ongoing, they are in some ways parallel semi-independent courses to be run and I think we really benefit from addressing them individually to some extent.

What got you through?

When I was in eye crisis, one of the most helpful things for me was deliberately embracing a short time horizon. I looked at the outlook based on what I knew at the time (I had received an unpleasant vision diagnosis rather abruptly - my eye pain had barely started them) and said to myself, whoa. Way too much going on in my life right now - I cannot deal with long term implications. I'm going to bite off a really short piece to chew on. I decided to ignore everything except the immediate future, like a few months, and I focused on getting all the tools I needed to cope in the short terms. It was rough time in my life, but taking it in small increments very deliberately was helpful to me.

[diydry]

Support from family has been huge during my most difficult days. Cannot emphasize this enough.

Otherwise, I think Rebecca makes a great point. It’s helped me immensely to reduce my time horizon. Normally I’m always thinking about the future, planning ahead, what’s my life going to be like in 1 year, 5 years. Very “type A” I suppose, very anxious and worrying. When you’re perfectly healthy, that is to be expected, but when living with a chronic illness, thinking about the future can generate a lot of fear and anxiety. It’s best to just focus on your life right now (and maybe a few weeks or months in advance, max). The uncertainty becomes much more manageable.

I believe the more you can focus on the present and embrace the uncertainty the better (easier said than done, I struggle with this every day). It’s a very Buddhist mentality. I also recommend meditation (check out a great iphone app called “insight timer” and a great course on that app on managing pain and illness)

Thanks for starting this conversation! So important.

[Guest]

First off I'm so sorry you feel this way, I still feel this way 8 months after my accident that lead to this condition. My eyes are getting better and I have a solid plan now, so the uncertainty isn't as bad, but it's always there.

Im not sure I can offer much help as I'm trying to get over this thought as well. Just don't give up fighting for better care. Keep doing your routine if it's working. Just don't give up...that's what I keep telling myself...you have people that need you and love you. I have to push forward for them...life isn't about me anymore. That may be the hardest thing I've personally had to come to terms with.

Good luck, I wish you the best.

[MGD1701]

I can not agree with more that dont give up are so important.
There are more new tools/treatments available, such as TrueTear works really effectively, many top doctors in USA are actually very surprised - it can increase production for all layers and no side effect.