Coping with sight loss

Recently, there’s been a lot going on in my life- but that’s nothing new. The biggest new thing that’s happened in my life is that I’ve lost a lot of my sight.

I’ve always had problems with my vision, although right up until the age of 12 the opticians told my mum that I was ‘making it up’ and that I must have just really wanted glasses. Trust me, at the age of 12 when I already had a face full of braces, I really DIDN’T want the glasses to match. Anyway, not long before I turned 13 I was really struggling with my vision, so we moved over to a different opticians. Here, it was found that my eyes were far below what you would expect them to be, and so I was referred to the eye department at my local hospital and given a pair of glasses which would be exchanged for a higher prescription every three months.

The eye hospital could find very little wrong with my eyes physically, and couldn’t understand why my vision was as bad as it was. I was discharged (stupidly), and I continued with my strengthening prescriptions. Around the age of 14 I was on holiday with a friend and their parents, and I suddenly lost around 90% of my vision. It came and went throughout that week, but we just put it down to my medication and/or my pre-existing eye problems. I returned home, and after a few days, I regained my vision to it’s entirety. We let the optician know, and she couldn’t understand why it had happened, but as it hadn’t happened again, that was that. My eyes stabilised thank goodness, and the level of my prescription actually reduced.

Back in January, I moved opticians again, and they (again) were concerned about my eyes. My prescription had increased, and she insisted I was urgently referred to an eye clinic at one of the doctors surgeries. We went to that appointment and he was beyond frustrated that he couldn’t see anything physically wrong (anyone else see a recurring pattern here?) and so we were referred to a clinic at a hospital. The appointment there was inconclusive, and I was told I’d need more tests.

Then this happened.

On the 11th of March, suddenly my vision decreased. The only way I can explain it is like an old fashioned camera, where the shutter spirals from the outside, leaving only Shutter.jpega pinprick in the middle. This was only in my right eye, and would come and go, so I didn’t panic too much. As the evening came, this sight loss made itself permanent. I went to bed, almost certain that when I woke up, my eye would return to normal. Nope.
After some prompting from my older sister (thanks Ange), we called NHS direct. The woman we spoke to made sure I hadn’t had a stroke, and we were advised to go to A&E immediately. When we arrived, the woman we had spoken to had already advised them of our arrival, and so we only waited about 10 minutes without triage (a miracle in England, trust me!). We saw an A&E doctor who knew very little about eyes and seemed more interested in the fact that he’d met someone with a rare condition that he’d never met before (CAH). He did the basic tests on my eyes and disappeared to call the ophthalmologist on call.

After about 20 minutes he returned with the news that he’d called every hospital in Worcestershire and there were NO OPHTHALMOLOGISTS in Worcestershire. He had, however, spoken to the eye department at City Road in Birmingham, and they said that we needed to get down there ASAP, and that it simply couldn’t wait. So we’d wasted an hour in our local A&E, now to be told that we needed to go to the eye specific A&E in the center of Birmingham- around an hour away for us. Off we go to get on the train, googling the directions as we go as we have literally no idea where we’re heading. We get off and then have to get a taxi to the hospital (this cost is really mounting up) and check in, only to be told that there is an approximate wait of 4/5 hours. UGH.

We wait an hour for triage where I’m given a red card (indicating an urgent case), and check in again to be sent to the main waiting area. Why is the waiting time so long you ask? During the hour that we’re waiting in triage I hear someone say that their eye is ‘uncomfortable’ but they can still see fine, and another woman who thinks she may have some grit in her eye. And everyone wonders why the NHS system is so overrun. We spend around 2 and a half hours in the main waiting area which is so busy there’s barely anywhere to sit, talking to a few other ladies who have been sent from hospitals in Solihull and Kidderminster as this was also their nearest ophthalmologist.

We saw a very nice doctor who briefly examined my eyes (again) and put in some drops that dilate the pupils. Half an hour later, when the drops have taken effect, I go back in again. Here he tests how my eyes pick up colour (badly) and how much peripheral vision I have. He AGAIN could find nothing physically wrong with my eyes, but thought that I would need in depth testing. We decided that as we were already under another hospital for my eyes, it would be best to have the notes faxed over to them and go from there. Oh, I also forgot to mention, the doctor we saw there said ‘at least it’s only in your one eye’. Are you kidding me?!

Anyway, we wait for our follow up at our local hospital, and I get an appointment not only for the appointment, but also to have some field testing done. I have the field testing done where the nurse seems concerned and keeps double checking I have an appointment within the next week. She also does some more testing on how I see light and 3D, and off we go to wait for the appointment.

Finally, we go to the appointment. We’re seen by a man who speaks very little English, and all he says to me is that they don’t know what’s wrong with my eyes, and that we need to wait for more testing. I already knew that, but I stupidly assumed that because we’d been sent an appointment, it meant they had a vague idea of what was going on. Nope. He tried to throw us out very quickly but I insisted on asking questions. In response to me asking what would happen if the tests showed nothing (again), he said ‘we probably call it a lazy eye and send you away’- at least that’s what I think he said. I also asked him if I could have a letter of ‘proof’ of my declining vision for the exams officers at college, to which he laughed in my face, and told me ‘that is for the consultant to do, we send them all the information’. We assumed he meant the GP, especially as he is the consultant!

Nearly 4 weeks after that appointment, we’re still waiting for the appointment for electro-diagnostic testing, and we’re none the wiser. My ‘good’ eye is getting worse, more and more blurry, so I had to visit my opticians where the recommended a pair of tinted glasses. I’m also waiting for an appointment with my GP to get ‘proof’, although I’ve been warned it could be too late now for exam arrangements to be made.

Now you know why patients are called patients, we literally have to have the patience of a saint!

 

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