My single occurrence story
I wanted to write this to potentially help others as I found Reddit a great source of help when I was first diagnosed with severe intermediate uveitis and cystoid macula oedema in my left eye.
I was a 42 year old male. Demanding but enjoyable job and busy family life with small children (wife also working a demanding job). I wasn’t particularly unhealthy/overweight but I didn’t do much exercise and ate a carb heavy diet.
I had some mild stomach issues - mainly bouts of nausea and/or constipation - for 6-12 months prior, but no other health issues (past or present) other than lacking energy. I was one of those guys who had barely visited the doctor in 10 years.
Then three things happened:
I got a big promotion at work, in a very different area. I went from having no line management responsibilities to a team of 30 and several personnel issues to deal with. The business was in bad shape and I was now responsible for turning it round, but knew very little about it.
My mother was diagnosed with dementia.
My daughter (age 6) started to go through a really tough time at school, resulting in not wanting to attend / very stressful mornings trying to get her there.
I did what I usually do when faced with stress - just ploughed on. I wasn’t getting enough sleep, was eating lots of convenience food and trying to pretend to myself/everyone that I was coping fine.
My right eye is my dominant eye so I didn’t really notice when my left eye started to have problems, but it got to the stage that I couldn’t read car number/license plates without shutting my left eye. Thought I just needed glasses or something so made an appointment at the opticians for a couple of weeks’ time. Of course the optician realised something was seriously wrong and sent me to the nearest eye hospital emergency department.
That morning at the hospital was one of the scariest of my life. Doctor after doctor wanted to take a look at the state my left eye seemed to be in - I felt like a medical freak. The scans showed severe inflammation in both the front and, more significantly, the back of the eye (CMO). I kept mentioning stress and my stomach issues but no one seemed to care about those. The consultant had a very frank conversation with me that he was putting me on high dosage (60mg) oral steroids and eye drops in the ”hope” that they reduced the inflammation in my left eye. The undercurrent the whole time was that was the start of a long journey and was likely to be chronic/recurrent.
I left the hospital with my head all over the place. It took me two days to even start taking the steroids as I couldn‘t process it all. I was dreading the potential weight gain, moon face, type 2 diabetes risk, etc.
I decided I had to change my recent habits so I changed several things:
- I prioritised sleep over almost everything else - 8 hours a night
- I stopped caring about work. Not completely, but I told myself I was not going to let it stress me out...and somehow/weirdly this worked surprisingly well!
- I began eating much more healthily - avoiding inflammatory foods, fatty meat, white carbs, UPFs, dairy, gluten, etc. - increasing my intake of fibre (lots of fresh/fermented vegetables, beans and fruit) and lean protein (mainly chicken and oily fish)
- I started to meditate, using an app to help teach me
- I made much more effort to exercise - mainly cycling, which I used to do much more of. The steroids actually helped here as I had much more energy whilst on them.
It was a slow process but the steroids started to work and vision started to return to normal. Rather than putting on weight, I lost about 8 pounds, dropping a waist size. No moon face. Blood sugar normal.
I spent more than 6 months tapering down. I was really careful when dropping dosage to ensure it wasn’t when I was stressed/sleep deprived/had lots on at work/etc.
I hated the steroid eye drops - they made my eye dry, sore and (at times) blood shot. I tapered these as fast as I dared.
Every time I visited the hospital the doctors would talk to me about what the options if it came back - implants, immunosuppressants, etc. Even once I was off the medication, they wanted to see me regularly to check it hadn’t returned.
It’s now more than a year since that first trip to the hospital and I’ve been off medication completely for 6 months. No signs of anything returning. I keep eating healthily (but with the occasional cheat meal/naughty snack!), exercising and I’ve recently quit my job to move to something with less stress. I meditate occasionally still.
For me, I can’t help thinking that the uveitis was a symptom of stress and not looking after myself, despite the doctors not really seeing this as the cause. My stomach issues have gone and my eye is (for now) back to 20:20.
I’ve enjoyed writing this all down and I hope it helps others who may be in a similar position, albeit I realise for the majority of people here their uveitis may not go away so easily.
Happy to respond to any questions you may have.