Its hard to think back to the time when I first began to have visual problems and when exactly I realised that something bizarre was going on with my eyes.
I remember struggling to drive along unlit up roads and thinking – well I can’t do that anymore, I must be getting old!
I remember floaters driving me mad but the optician told me I didn’t need to worry I didn’t have a detached retina and my macula looked fine.
I remember frequent changes of prescription and new glasses and still not being able to see properly.
I remember the horizon going grey fading into nothingness.
I remember struggling to fill in forms with faint grey boxes that I couldn’t see
Paperback’s whose print faded into the page
Difficulty in underground car parks, getting keys into the locks at night, finding light switches, deactivating alarms in poorly lit areas.
I remember waking up in the night and feeling that there was a black patch over one of my eyes.
I remember going out on a sunny day and being dazzled by the bright lights
I remember eyes streaming as though I had hay fever something I don’t suffer from now and never did before.
I remember looking up at the sky and realising I couldn’t see the stars.
And then I think back further and I can remember – getting lost trying to navigate at night on French roads – and angry scenes in the car as we drove through the night, because I couldn’t read the signposts at night – nor the map.
I remember getting hopelessly lost on a large poorly lit French camp site and it taking me hours literally to find our tent. My daughter and husband laughing at the idea that I could possibly have got lost.
I remember trying to pitch a tent in the dark in a forest, on my own and having an immense amount of difficulty,
I remember a time when I had a complete sparkling white out at lunchtime and I could scarcely see to drive the mile or so back to my office, having to sit in a darkened room with the computer off and luckily the episode passed.
I remember thinking – well I might as well give up my hobby of digital photography – I just couldn’t look at a computer screen for any length of time, let alone edit a photograph or tell if it was in focus.
I remember not being able to thread a needle or mend a black jumper and thinking well I can’t ever make anything again or be creative.
I started to solve some of the problems. I bought a good reading lamp. I bought some decent sunglasses, I tried to ignore the floaters. I still didn’t know what was wrong.
Then one day, an optician asked me to do a field test, the first one I had ever done. I was on to my fourth optician by this time. I failed the fields test in one eye. I went back to do it again, and again. He offered to refer me. I accepted and three months later I was eventually seen at the local eye clinic.
Unusually my diagnosis was immediate. I was told I had mild inflammation but the treatment was worse than the symptoms. A blood test confirmed his suspicions. He ordered up an angiogram. At the time I couldn’t understand it, but there was a look of excitement on this consultant’s face when he told me my diagnosis. I had no idea just how rare the condition was said to be then and I was bemused by it all. He invited me back to have photos done as if it was some glamour photo shoot. I was to go back every 8 weeks to check that nothing more was going on and told to get back quick if I flared. I was in shock – I did not believe the diagnosis. After the first appointment, the consultant refused to talk to me about it. He kept me waiting hours for most appointments and often I saw his junior staff who did not have a clue and were scared to say anything and refused to answer my questions.
I asked for a second opinion at a well know uveitis clinic. They confirmed the diagnosis and my monitoring continued. Despite everything my ability to read the eye chart through a pinhole remained good. Still no treatment was called for.
At least by then I knew what to ask for and I got regular ERG tests which continued to say things were getting worse and that I should be put on something to control this gradual degradation.
Eventually I was offered immunosuppressants, I said I would think about it and I went for a third opinion. I did not want to take toxic drugs if it was unnecessary, and if I did, I wanted to be sure I would see someone who really understood this type of medication.
The diagnosis was confirmed for a third time and treatment started straight away.
My vision improved and has not got any worse. The choice of medication had to be altered a bit, but we seem to have worked out a solution I can tolerate. My eyes are stable and I am confident I am getting the best treatment available to me for the time being.
I am longing for the day when I can get off the 7mg of steroid I have to take daily and the mycophenolate mofetil. I hope it has not done too much damage to my bones and my liver and kidneys seem to be surviving.
My husband daughter seem to think that the steroids make me behave erratically, but they understand and are still putting up with it.
I have maintained my job. Good thing too – I have a retired husband and teenage daughter to support.
I am told that my right eye is permanently damaged because I did not get treatment for it earlier enough. The left eye has improved and recovered. There can be life at the end of birdshot with the right medication the right ophthalmologist and a positive attitude. I know I am lucky and my fingers are crossed that it stays that way.
Things that help me:
Good reading lamp
Good sunglasses – cocoon fit overs are good if you wear glasses good polarised, yellow tint
Saline nasal spray – helps steroid induced sinus problems
Great sympathetic consultant at a hospital that I can get to relatively easily
Excellent service from the local renal unit
Support forum set up by Dagmar in the US
Sharing information with others who have birdshot and the support I receive
If the Birdshot Uveitis Society helps just a few people get through the horror of the initial diagnosis and helps to make a few people realise that there is life after “the birdshot diagnosis” and it does not mean you will go blind – then we have achieved something.
PS we would love to hear your stories. Email us with your stories at birdshot.live.co.uk and we will post them here so that others can share your experiences as well. You can post your comments as well. I am sorry that they are not displaying properly at the moment but we are working on this!