Worse after improvement

[brd888]

At the end of May I had two very good weeks. My eyes felt about 95% normal. Great, you may say. I say it is incredible how quickly you get back to day to day life and more or less forget about dry eye.
Now I have had 2 or 3 weeks of normal service. Gritty, sandy, uncomfortable eyes even at night. I seem to find it hard to cope when my dry eye comes back - it is like a short sample of normality before the crap sets back in.
Worse still is the feeling I can do strenuous treatment to get a small window of eye health but the dry eye will always return and keep chipping away for many years to come.

Any thoughts?
Thanks

[rubyslippers]

Did you quit doing something? If I quit either my flaxseed or my eyelid scrubs, I will be worse within 3-4 days. Doctor said to do it for life to maintain control.

[Teri]

The roller coaster

I sympathize. It is so hard to have an improvement or just a few good days and then fall back into the constant pain. It reminds you what it was like before, what you no longer have, and sometimes I think it is harder having an improvement and then a reversal than just staying bad all the time.

I, too, had a good month and then, recently, started to slide backwards. My eyes are drying out at night again, and I don't know why. I'm doing everything the same. It is so frustrating.

Two things I keep reminding myself:

1. eye healing and this disease, neither are linear. It does seem to be cyclical, and that is one of the maddening things about it. The unpredictability and inevitability of the ups and downs.

2. when I have a good day (with my eyes or with regards to the depression), I try not to get excited that I'm "out of the woods" and "the worst is over." I try to be grateful to have a good day, to have one day free from the burden of this disease. I try to view it as a gift, a break in the storm, a vacation. In the same way, I can't think on the bad days that "It's going to be like this forever" or "I'm never going to be rid of this."

If I'm successful in keeping my focus like that, it makes the ups and downs easier to handle.

You will have more good days.

Teri

[eva]

BRD888

Your posting did not indicate if you changed your routine when you were 95% better.

I have Sjogren's and I realise I am different from other posters suffering from DES (some of them are suffering much more than I am so I am not complaining)

Anyway, I really have dry eye under control but keep putting in drops, gels etc at least once an hour during the day even though I don't feel I need them

It seems that I have "insensitive corneas" and my eyes don't tell me when they are dry, so i go by my watch.

If you didn't change your routine when you were feeling so great, my posting will not be applicable but maybe it will be applicable to someone else reading this

Bottom line: don't let "improvement" fool you.... I learned my lesson the hard way.

eva

[Rojzen]

theories/observations about the pattern of healing

Brd888: If you have an interest in the theories of healing, and in various practitioners' observations about how people recover from disease, please consider reading translations and/or summaries of the writings of Samuel Hahnemann and American homeopath J.T. Kent. Today, the practitioner I look to for the deepest and truest understanding of why symptoms return or fluctuate, and of why it is critical for there to be ups and downs in permanent healing, is Rudi Verspoor, a Canadian scholar who has delved into Samuel Hahnemann's original principles, and redigested them for modern applications. Verspoor's field is called Heilkunst. Any google search will get you to the principles of Heilkunst.

Just to convey how useful relapses and fluctuations can be, when one is really on the mend, I'll mention that Verspoor's particular practice, using dilute remedies, is called "Sequential Therapy," reflecting his expectation that there shall be many layers of disease to treat, in sequence, with periodic returns of symptoms along the way, in any given case...

More orthodox homeopaths here in the U.S. tend also to believe that "aggravations," which may appear to be relapses, are CRUCIAL to making a full recovery.. .

Please consider the strong possibility that your relapse may just be a sign of long-term, and lasting, healing. . .

[brd888]

Eva,
To be honest my routine is quite haphazard anyway and there are constant variations in my treatments. I know I should find a set routine which works and stick to it but I am still looking for that routine.

Teri hit the same points I was leading to, more of a psychological thing. Having little holidays from dry eye upsets the routine and gives you a tougher time when the symptoms return.

Rgds,
Bruce

[Judy]

Everytime I stop the nightly rice baggy treatments for more than 1 day, like on an extended weekend trip, I pay for it. My eyes get much redder, sore, dry, etc. and I begin to think I will be doing another round of scripts for blepharitis. My Dr. office will say, use more drops temporarily and get back into your routine before we will prescribe anything. And they are most times right...

[eva]

Bruce

Here comes my 2 cents worth:

You could classify fear as psychological - I am so terrified of having problems as a result of dry eyes that I am like a crazy woman going by my watch regarding eye drops.

Because I had no pain or symptoms, one day I woke up practically blinded by daylight and unable to read the paper - took 2 weeks of steroids to not have light bother me and 3 months to be able to read the paper. I did not know the meaning of dry eyes so I thought I was going blind until the doctor told me otherwise.

I actually have "good days" all the time now which of course is a blessing but "my enemy" is Sjogren's my liability is insensitive corneas that don't warn me about dry eyes, so I can never relax about "good days"

Good days will only happen if I never forget to use drops and gels.

Very ironic since 4 out of 7 days I forget to take my vitamin pills including the Omega 3s that's supposed to help dry eyes.

Moreover, people who take high blood pressure pills, anti-depressants, insulin, whatever, don't get to say "I am feeling ok, I'll just skip the medication" - so that's how I think about eye drops and gels.

Hope you beome a "crazy man" with the eye junk routine, never relaxing about feeling well and that pretty soon every day will be great.

eva

[liz56]

Hi, Bruce.

I have spells like that. Rebecca in some earlier post taught me to look for more good days than fewer as a sign of improvement rather than expect that all days will be good.

I had her advice in mind this past weekend. I went to see my corneal specialist out of state, and it is over seven hours driving. I did not even have to do the driving, and I stayed on course with my drops, gel, and goggles routine. However, my erosion spot felt like a spot-welder had gone after it, though I did not have an erosion. After I slept through the night upon arrival home, I felt back to normal the next day. So, it could be that air quality changes have an effect.

I have a pretty set routine (more advice from Rebecca), so that I can track what is happening. It is easy for me to track erosions but harder to track quality of days. So, I just made columns on a spreadsheet that go in this order: Date, number of erosions; vision quality / symptoms / sticking incidents (ex. "good vision, eye sticks"); and treatment ( ex. "drops to open" / "massage eyes open). I made up my mind that I could put up with raw eyes during the day, but I cannot keep having erosions. So, my spreadsheet reflects that priority. Maybe once you settle into a routine, you could try rating each day on a scale (like of 1-10), then after three months, send it into a graph and see if you can detect a pattern.

I'm kind of picky about keeping track, but once I started to quantify things for myself, I got a better perspective and I was better able to communicate with my doctor.

I hope that your next set of good days is just around the corner!

--Liz