My Journey Into Blindness
It all started with what I thought was a cold. My Mum had the flu and I had caught it.
As I lay on the couch, my head banging, I asked my Mum if she was having trouble opening her eyes. She told me she was very tired so I thought it was a matter of time.
Gradually things got worse and I realised that this was not normal.
My eyes closed tightly on what became a daily basis. Slowly I discovered that I was not able to open my eyes until at least 11 a.m. no matter what time I got to bed.
Things progressed rapidly from this point on and I found my eyes would close during the day and refuse to open until they were good and ready. What I wasn’t aware of was that my eyes were what I can only describe as sunken – Mum said I looked ‘different’.
It went on for months and I kept thinking things would improve but they got worse. Eventually the doctor referred me to the hospital.
Now, a bit of background is important at this point.
Thirteen years ago I had a dreadful fall down 13 stairs. Much of what happened was a blur but I do know I hit my head – 13 stairs without hitting a single one.
I knew instantly that I had broken my wrist – that was all I could feel. I thought, “I’ll sit up in a minute.”
At that point my mum came down and called an ambulance – I had badly underestimated the damage done to me in that fall.
At the hospital they cocooned my arm in plaster. That was an interesting experience because I have seen it done on television and it looks horrible. Maybe it was the gas and air but it was warm and pleasant. The worst part was when they took the gas and air away and straightened my arm (a guy opposite me was screaming – he was having the same thing done).
Everything was kind of hazy. They asked a porter to take me down to x-ray but I don’t really remember much about it – all I knew was Mum had to wait outside.
What I didn’t know was that they had missed something vital (I only discovered recently that my memory does serve me correctly – nobody x-rayed my head! Now, bearing in mind that I had hit it full force, I would have expected to be x-rayed at once. Mum said she thought they were too interested in saving my arm – the results were shocking and I needed surgery. Stupidly I still thought I’d be home a couple of hours later – it was actually FOUR DAYS.
For a long time I thought everything would be OK. I had a couple of severe infections and needed more surgery (my arm was in plaster for nearly 8 months). I’d return to normal soon, right? Wrong!
Further surgery brought more problems. The hospital decided to take bone from my hip to put into my arm as there were a couple of centimetres of bone missing. Cool … only … it wasn’t.
Not sure what had happened while I’d been asleep but I woke up in agony and my ribs were bruised. I didn’t think too much of it but a couple of days later I tried to walk and got a nasty shock. My hip collapsed! And it’s been collapsing ever since.
The vision problems got progressively worse. My eyes were closing more frequently and for longer periods.
My doctor sent me to the hospital and I had tests for myasthenia gravis. They were the most agonising tests I have ever had in my life and I actually chipped a tooth. Coming out I realised I was still fizzing from all the electricity! Then came the bombshell. The tests revealed I do not have myasthenia.
Don’t get me wrong, I didn’t want it – but I did want to know what was going on.
I got sent to every department imaginable. During one, the ophthalmologist decided to put a stent in my eye – perhaps dry eyes were the problem? This would apparently flood my eyes with water and I wouldn’t need to close my eyes so frequently. She sent me into the waiting room while she found the stents. I didn’t realise she was watching me until she called me back.
“OK, I’m still going to put the stent in but I have just seen you walk. Does that hip collapse all the time?”
“Every few steps.”
There was a pause. “I think something else is going on here – something autoimmune. I’m going to refer you to a colleague of mine.”
This was the next step in a very long and winding road towards a diagnosis (we still have not got a definitive diagnosis – but read on and you’ll discover what they know is happening).
The doctor was lovely. He was very matter of fact.
“OK, you have dystonia. We’ll give you botox.”
He proceeded to do that right there and then. He left me for 6 months. Almost the whole time I could see normally but eventually it started to wear off. The second time wasn’t so successful but the third time was.
I began to notice a pattern. Every other one was successful.
It was all going so well (though I wished he’d bring the treatment forward) until my doctor sent me to yet another specialist. She was worried about my hip and insisted on a referral before I even opened my mouth.
Imagine my horror when I discovered the consultant had discharged me because botox was ‘difficult’ for me and he did not feel an appointment with another specialist was appropriate – he didn’t feel my hip problem was related (I didn’t say it was). I never made a fuss, just winced with the pain.
The doctor had no clue what was wrong so I somehow ended up being referred to the ophthalmology department – this time to see a new consultant.
She agreed to give me botox again. I received an appointment for about a month later and the botox was superb for the first few times. I had it every 12 weeks – it worked for 6 … she then agreed to bring it forward to every 8 weeks but that was the best she could do. Two weeks in darkness was better than six!
Then, I was sat at home when the phone rang. My friend was alarmed because she had just seen a TV show highlighting sight problems – specifically a condition called GCA (Giant Cell Arteritis).
This is a medical emergency and was identical to my symptoms which are listed below.
Persistent, severe head pain, usually in your temple area – check
Scalp tenderness – check
Jaw pain when you chew or open your mouth wide – check (not all the time but often)
Fatigue – check. I’m permanently exhausted.
Unintended weight loss – check.
Vision loss or double vision, particularly in people who also have jaw pain – Check! The vision loss is the scariest because it happens with no warning (that I am aware of) and can last for anything from a few minutes to several hours. As I write this I have only a sliver of sight. It also happens every single day. The double vision is apparently permanent because it’s been with me for such a long time I can’t see it disappearing now. My left eye lid is so weak I can’t keep it open.
Sudden, permanent loss of vision in one eye – in this case it’s in both eyes.
Pain and stiffness in the neck, shoulders or hips are common symptoms of a related disorder, polymyalgia rheumatica. About 50 percent of people with giant cell arteritis also have polymyalgia rheumatica. Check. This is horrible – it is impossible for me to get dressed before 11 a.m. because of the pain. If I have an appointment that is early (as I do tomorrow) then I am forced to sleep in my clothes – or get up at 4 or 5 a.m. After taking painkillers it takes around 90 minutes for my body to be out of pain enough to get dressed. There are days I dread getting up and facing the pain.
I thought, yes, a perfect description of me. So I went to the doctor. Now, at this point, I was 49 years of age – and just 9 days from my 50th birthday.
“I understand your concern – and you do match every symptom – but you’re not old enough to have this condition. Come back when you’re 50.”
“You’re kidding me, right?”
“No, I won’t even look at you until then.”
So I went back the day after my 50th birthday and, good enough, he (albeit reluctantly) sent me for blood tests.
The results were surprising – but his reaction surprised me more than anything.
“Your ESR and CRP are very important. One should be 5 for it to be PMR and the other, for GCA, should be 10. Your results show 1 and 8 …”
Now, to me, 8 is pretty much borderline but he said no. Maybe you have Chronic Fatigue Syndrome or Fibromyalgia.
What about my sight loss?
“No clue what’s causing that.”
“I want to be referred to the hospital to check that I haven’t got it.”
“Can’t do that.”
Eventually I was seen by a different doctor – one who restored my faith in the medical world. He suspected GCA and PMR and acted fast.
“I’m putting you on Prednisolone for a week to see what happens while we get you an appointment at the hospital.”
Now at this point, I was just about to go away for a family holiday. It was with some trepidation that I started the steroids on the first day – 3 tablets to be taken at the same time in the morning.
The effect was almost immediate!
I had energy, was eating for England, walked normally, could SEE PROPERLY for the first time in months. Phenomenal. I felt well for the first time in forever and was able to get up and dressed at 8 and 9 o’clock in the morning. WOW!
The day I ran out, I had to return to see the doctor who was delighted and said, “There is the confirmation we needed that you do have GCA. Now I’ll be interested to see what the hospital say.”
I received my appointment (I was – and still am – having botox but there is a twist so keep reading) a few days later and went there the following Tuesday. I walked in and the doctor took some notes and said she would examine me. My hip gave and she looked at my mum and asked, “What happened there?” Well, we were kind of hoping you could tell us.
Long discussion during which she didn’t listen to my symptoms. The only thing to come out of it was I’m too young to have GCA.
I have since discovered this statement to be untrue.
My GP was incredulous but told me he couldn’t give me any more prednisolone unless the hospital agreed.
Disaster struck for me when he left our surgery. I was gutted and waited to see if he would return. In the meantime I was called in to see my second favourite doctor. She wanted to see me over something else but I brought this subject up.
“Look, you’re too young. Maybe you have something we’ve never heard of – or it’s in your mind.”
Second time someone has said that to me – my consultant being the first!
I was livid. For months my mum had been telling me to change to our local practice – at least it’s easier to get there if nobody can drive me. I was in such a temper, if I’m honest, that I went to register with them on the way back from yet another hospital appointment
Am I glad I did?!
Immediately I met my new doctor I liked her. She’s young, kind and genuine. Her last words as my first appointment ended were: “Don’t worry. We will get to the bottom of this and find out what’s happening.” I actually believe her.
Now, I’m just going to backtrack a little because at this point it’s imperative you understand another – very disturbing – symptom.
It first started three years ago. I can remember it vividly. I was standing in Walt Disney World, in front of the castle. We were watching Celebrate the Magic. Now, i know this show very well indeed. So I’m stood there and Mickey Mouse comes on stage.
Then, abruptly, he wasn’t there any more. Stranger still, nor was anything else. What on earth was happening? Had I fallen asleep, fainted, been momentarily dazzled by the sun? Whatever it was, it was strange.
My friend approached and said, “Oh my God, I thought Wendy and Peter were off the stage there!”
“I … didn’t notice.”
“Didn’t you see what Goofy did?”
“No … and why didn’t Mickey stay on stage for as long as he normally does.”
Then it hit me … I was still able to hear but not see it – I had heard the show in its entirety but not seen it.
That was scary but I put it to the back of my mind. I was on holiday and maybe that was a blip.
But it wasn’t. It happened again when I was sat, waiting for Fantasmic to start the following day.
And several more times.
At first, as a general rule, it was for very short periods. A couple of minutes at most so I wasn’t overly worried. But it began to happen for longer periods and I was scared.
By the time I saw my lovely new doctor, I was having a maximum of 2 hours sight a day – the rest I spent in darkness.
I noticed that a few minutes before the darkness overwhelmed me, I began to get a sharp pain (that’s the only way I can think of to describe it) usually in my left temple. It was so bad I often held my breath until it passed. What little sight I had remaining went blurred and it was as if a gauze came down over my eyes, plunging me into darkness. It was terrifying because I never knew when it could happen – even when I was out or crossing the road. Suddenly nothing was there!
My doctor has taken me seriously. As I walked into her office for the first time, she noticed my hip and was determined to get the full story from me. Then she put me on a new tablet (to me) called pre-gablin. I have had gabapentin and was worried it would be similar but I tolerated it really well. She was the first person to explain why the doctors wouldn’t put me on prednisolone (apparently I would have no bones left).
She changed my meds and wrote to my local hospital who called for me within 3 days!
She also sent me for some blood tests … remember my score of 8 from the CRP earlier? It was now 12! And my ESR had risen too. Yet still nobody would listen. To be fair, my doctor did not say I couldn’t have it – just that it would be unusual at my age. But she’s trying to get a dossier together so she can refer me to a rheumatologist in our local hospital, even if she has to do so privately.
It has now, sadly, been proven to be a neurological problem. When I went to the hospital today the doctor said, “It’s a brain problem … that sounds terrible.” Don’t worry, the consultant told me it was in my mind! He was horrified. “No! What this is, among other things, you have a condition called dystonia which is only going to get worse. The swallowing and sight in particular will get worse. Until recently people were given Electric Shock Therapy for this condition. The basal gland has been damaged and is directly next to the area that gives you Parkinson’s disease. Tell me, have you ever had a blunt trauma to your head?”
“I mean, have you ever hit your head in, say a fall.”
I explained about the fall in 2006 and he asked, “What did the hospital say about the brain scan done then.”
“They didn’t do a brain scan!”
He was horrified – that should have been the first thing they did.
“Well, we can’t change that. Look, I can’t save your sight but what I can do is help extend it for a short time. I can give you a tablet which will affect your brain – but also work on other parts of your body which may not be desirable. Or I can do an operation and partially strip away the muscles that close your eyes. Or I can give you a half dose of botox.”
“OK, will any of that stop my sight from disappearing?”
“Sadly not. That will continue – and may get worse. That’s nothing to do with dystonia. What they should be looking at is damage to the basal gland which, according to some, looks like a tooth in your brain – and according to others, a butterfly.”
I knew exactly what he was referring to.
“If they had picked up the damage to the basal gland – you must have hit your head hard to damage it! – then this would likely never have happened. All your sight problems are coming from your fall, the fact you do have GCA -“
“Excuse me, but my consultant said I don’t have it.”
“I’m sorry. You’re symptom for symptom and I would say you had it. And the fact that your dystonia is worsening. We can only slow the process down.”
I was heartbroken … but I’m strong and I still have a tiny bit of sight at the moment. I’m also lucky that I’m surrounded by wonderful friends.
I have already mastered braille and met a guide dog and a medical alert dog.
What was interesting was they were both fantastic at picking up my health problems – for example, the Labrador noticed I had low sugar (which I was completely unaware of) and the puppy (who was no older than 20 weeks) noticed my sight was about to go – before it went!
A medical alert dog is incredible because it can smell changes on your breath which you are unaware of and alert you that your health problem is about to occur. I have seen medical alerts who can warn of oncoming migraines 15 minutes before hand. They give the person concerned peace of mind and a new lease of life. By that I mean they can go out, safe in the knowledge that the dog will protect them and warn them when they are about to experience a problem. What I love is some are trained to approach a bus driver if I’m on the bus (I almost never travel by train) and in his harness he has a card that tells the driver that I have lost my sight (using me as an example) and where I need to get off the bus. I had a go at walking with one and was surprised at how comfortable and easy it was. There was no danger of me banging into the hazards or falling downstairs (which is my greatest fear now, after everything that accident caused).
You know, people tell me that accident must be the worst thing that could have happened to me but I beg to differ. It was the best thing.
This accident has given me problems, there’s no denying that.
It has also given me opportunities I would never have had.
I am now a published author (with my latest book coming out at the beginning of last year)
I have several more books in the pipeline.
I am using my disabilities to try and show others that life may be difficult but there are so many things you can do. I now work with children, teaching them to read. Apparently kids fight to work with me. I show them that even though things are difficult, if they try hard enough, they can reach all their dreams.
At the moment, my whole life has become a radio show. Even the soaps. But in my quiet times I practice my braille and also make audio books. If anyone could see how I do it, they would laugh, but I challenge anyone to identify that when it’s complete and edited, it’s done by someone who is essentially blind.
People have also asked me why I’m not screaming, “Why me?”
Well, why not me? I have a strong faith and trust that God has a better plan for my life than I do. I have no idea why I have been given this health issue but I do know I am strong enough to cope with it. I just want my sight long enough for me to enjoy my holiday to Disney in June!
Life is full of riches that are ripe for the plucking. I just have to look and don’t necessarily need eyes to find them. I will follow every opportunity that life throws at me. Life is certainly more challenging but it’s not over for me – or for anyone else suffering like me.
To those who have taken the trouble to read this blog, thank you. I know it was a long read but I hope it helps at least one person.
Let me know if I have helped you. I will update this blog as events progress, especially as I learn braille and work with the dogs.
Incidentally, on a small side note, I used to believe that Guide Dogs for the Blind received enough donations. It was not a charity I supported (although that’s not to say I didn’t think they did great work). Now I have seen that work first hand. It shocked me to learn that it costs £55,000 a year to support a guide dog from puppyhood to retirement. There is a breakdown for where the costs go on the guide dogs website. Check it out.
Have a wonderful 2019 everyone! Remember to treat yourself to something special as a reward for getting through the everyday trials and tribulations.