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My Uveitis Journey - living with flare ups

Back in October 2020 my eye felt weird. It was itchy, my vision was blurred and I had a headache which was strangely only happening in the right hand side of my head. Over the course of a week the pain intensified to unbearable levels but local opticians, A&E and call-out doctors couldn't work out what was wrong with me, so all I could do to survive was a cocktail of pain killers and bed rest. When a rash appeared in the top quarter of my head, it was clear that I was suffering with Shingles in my eye.


It was quite emotional to finally get a diagnosis - I thought I was going mad after just getting sent away and told to take pain killers! I was exhausted coping with the pain but happy to take Antivirals and stronger pain relief to start to remedy my illness. I went for a drop in appointment at Wolverhampton Eye Infirmary where they discovered the pressure in my eye was at dangerous levels and the shingles had caused a condition called Uveitis.


Once they had successfully reduced my eye pressure, they sent me home with drugs to reduce the swelling in my eye and also reduce the inflammatory response that kept triggering and causing problems.


I finished the course of drugs and patiently waited for my follow up appointment with a consultant. I called them every month to check when I would be seen again but unfortunately due to the Covid Lockdown and a backlog at the Eye infirmary, they couldn't give me a new appointment and I just had to wait. During that time my eye gradually felt worse. It was permanently red, itchy and I just felt generally flat with sub standard vision


It was when I woke up one morning and found the shape of my pupil had changed was when I knew I had to push to be seen by a specialist as soon as possible.


I called the hospital and eventually managed to get an appointment in March 2021! Five months after I contracted the condition!


What I thought was a problem with my pupil was actually connected to the iris. The iris is made up from a series of muscles and the mis-shape is due to damage to the muscles in the iris and unlikely to rectify. I was devastated to hear this as my eye will permanently look strange although how my eye looked should have been the least of my concerns!


Fast forward to June 2021. I've been using my drops and I thought, coping well with the issues I have with my eye. I'd pretty much stopped wearing eye make up and being very conscious to protect and look after my delicate eye.


It was working on a project to revamp a mirror that caught me out! It was such a lovely day I decided to sand, prime and spray a mirror for my Mum. I spent most of the morning in blazing sunshine working on the mirror.


When I cam back inside I realised immediately that the bright sunlight had caused me to have migraine like symptoms - but only in the right hand side of my head. The pain throbbed and all I could do was close my eyes and rest.


After doing some research I found the damaged iris had lost it's ability to expand and contract so it was unable to protect itself from bright sunlight. This condition is known as photophobia. All I could do was think about, how was this going to affect my future holidays! I love being in the sun!


Thankfully I found a solution in some Blue Light Blocking glasses from Amazon. The sunglasses block a specific high frequency blue light that can trigger a range of conditions such as Migraines, eye strains and photophobia.

It's hard to explain how it feels to put these glasses on whilst suffering with Photophobia. They have a very calming effect and definitely bring a comfortable feeling to being out in the sun.


I haven't tested these glasses on holiday yet but I'm hopeful they will do a great job.


If you have any experiences with Shingles, Uveitis, Iritis or Photophobia I'd love to hear from you so leave me a comment.


Thanks so much for dropping by.

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