O/T: I Think I'm Going Blind! Part VII


Getting fit for 30!
Hi everyone,

I've not been here for a long time, but I'm currently building a website and I came by to look at some old post I wrote about the early days of when I had problems with my eyes:

part one
part two
part three
part four
part five
part six

If anyone was around when I wrote them and remembers that, firstly - hi, how are you? Secondly, I felt like you deserved an update.

Reading those posts back almost 10 years later I can feel how jaded I've become - not knowing how to spell or even pronounce ophthalmology - it's second nature to me now! And not knowing what the tests or drops or doctors were for, that department is second nature to me now! I've had all sorts of tests: MRI, CT, Ultrasound, lost count of the number of blood tests, I even had an implant in my eye; fluorescein angiograms, field tests, retina scans, pressure tests, IV steroids, oral steroids steroid drops, lumbar puncture, I could go on.

Unfortunately, things got a lot worse for me and the TL;DR version is that I have lost all of my peripheral vision in that eye and the central vision is restricted, I'll go in to more details of how and why that happened below, but for those who are just looking for a quick update - they eventually put me on oral steroids and a drug called CellCept (mycophenolate) which is an immunosuppressant that they give organ transplant patients to stop them rejecting their new organs by lower your immune system to almost nothing an unfortunately whilst on those drugs I contracted shingles which was ignored. As well as losing my sight it affected other things as well.

I hope everyone is well and still fighting the good weight loss fight, I still think back happily on my days in this forum and the good friendships I made.

Love, peace and happiness to everyone,
P.S You can visit the website at nataliesteer.co.uk if you visit before it goes live the pw is EnterMeNow

The long version:
At the point part six ended things weren’t too bad, it didn’t affect my vision too much, I wasn’t wearing glasses and even though I have to attend the hospital on average once a fortnight, and sometimes as often as 3 times a week, it's all quite tame. I was given high doses of steroids (prednisolone) and the immunosuppressant (cellcept).. So I have to be a little careful, but as I saw it it's just 2 more drugs to add to the others I am already taking.

Things pretty much stayed like that until 2013 when I was at uni in Worcester. I moved into digs there. I was 23 and didn’t drink. I already lived on my own once before. It was all new and novel to them. We had nothing in common, except bizarrely one girl, in the whole university, who happened to live in the same flat in me had a similar eye problem, an undiagnosed condition and was taking the same high dose steroids. She didn’t drink either, she wasn’t one for parties and we bonded over that. But she was still 18 and found it easy to make friends where I didn’t. I just kept to myself.

It got near Easter and I started to feel a bit run down so I decide to go home to see my Mum and as I have my own car (thank you Motability) I can take off whenever I like, without having to wait for the official holidays and home is only 45 minutes down the M5.

Unfortunately, that’s when I start getting really ill - being sick a lot, losing my appetite (which if you recall from my time here - is not like me at all) so we had a doctor come out to look at me; gave me some anti-sickness medication and told me to keep drinking fluids. Of course it was a an effort in futility as I couldn’t keep the medicine down so it didn’t work.

This went on for another week and by this time I couldn't keep anything down, and I hadn't eaten anything solid in around 15 days, but I had also developed a rash down one side of my body. This also meant I wasn't keeping any of my medication down. So late one night an out of hours doctor came out and advised we went to the hospital where I was admitted. They gave me an anti-sickness injection and fluids by IV. This was approximately 11pm. I went up to a ward about 1am, when my Mum went home and I tried to get some sleep. I was woken by a doctor at 3am, so told her my story, being immunosuppressed, the rash, throwing up, etc., she told me to get back to sleep. Another doctor came on the rounds at 9am, I told her the same story again, she asked if I had been sick in the night and I said no, but before I could explain that it was most likely because I was given an anti-sickness med, I was discharged, about 5 minutes later a nurse came in and told me they needed the bed and I had to wait for my Mum to come pick me up slouched on a plastic chair near the nurses station. They never asked if I was okay or needed anything, just ignored me. When my Mum turned up she tried to reason with them, but they just said, "the doctor has discharged her".

So, I was back in bed for another 2 weeks, and over this time I started to get the most horrendous headache, if I moved from any position other that completely flat - it was unbearable, and even then I was in a lot of pain. I was still throwing up once or twice a day, despite not eating anything. At one point I had my mums massage chair cover folded up under my pillow to shake my head – anything to distract from the pain. We called another out of ours doctor who said to take the anti sickness meds and fluids - they still gave me nothing for the rash.

Another two weeks went by. I was still being sick daily. My head throbbed so hard and so painfully I could feel it move. And then my eye stopped opening. So, my Mum called my GP, someone who knew me personally and made sure it was only him who came out, not someone from the surgery, not someone on call. He could see straight away I was out of sorts. He did (what I later learnt) were neurological observations on me, as I followed is finger across the room with my eyes I said to him “I know this eye won’t open, I can’t get it to open on it’s own” and then took my Mum aside and said “take her to hospital – now”. It had been 6 weeks since all this had started.

The rash I had was shingles, most likely caught from having my immune system suppressed. And my eye wasn't closed, it was paralysed, fixed facing outwards, I had a 3rd nerve palsy. I was also suffering intracranial hypertension with an opening pressure of 48 - if memory serves (normal is under 15) - that had been the pain in my head. The worst part was that while I was in hospital, coming to terms with all this, feeling sickest I've ever felt - even at one point seriously considering that I might die, being given oral drugs, IV drugs, tests, scans, just generally trying to recuperate - the doctor that first discharged me came in during rounds, looked at me, saw that I had the palsy and said "you always had the squint, didn't you?" I was so exhausted, and yet so angry.

It turned out I suffered encephalitis and have been left with no peripheral vision in my left eye, the remaining vision is very blurry, and bright. The nerve damage is permanent and irreversible. I also have damage that is as if someone has turned the saturation and brightness down on my entire vision, again this is permanent and expected to get worse. They still don't know what the original problem was/is so I still have it, and I am still on the steroids, but no longer take cellcept. I was also left with neurological damage. I lost sensation in my fingertips, an my upper thigh. I get spasms in my hands and legs. I lose concentration and forget my words. I struggle to find the words I'm looking for - I will be able to describe an object beautifully down to the finest detail but can't find the name for the common object - I could describe a cylindrical-tube-like, plastic vessel, made for the transportation and consumption of water before I could find the word bottle. Other times I can see the word clear as day in my mind, it is screaming at me, yet it won't come out my mouth. I have the intracranial pressure as a diagnosis too now. I have to keep an eye on the headaches - when they get too bad and I start vomiting then it's a sign it's time for another lumbar puncture and the fluid to be drained. I could go on

I left uni and had to learn to do a lot of stuff again from scratch. The world was a scary new place and I ended up dealing with agoraphobia and not leaving my house for 2 years. I fought to get some form of independence back.
Oh my god Natt, what an awful time you have had. How are you doing now? with your eyesight and with your neurological damage?
Thanks for asking :)

Things are rough. I had to learn to do everything again. I lost all the peripheral vision in my left eye and the central vision is damaged. When I first came out of hospital it was really hard, I kept bumping into stuff and knocking things over in shops, missing the table when I went to put a glass of water down, things like that. But over the last 5 years, I've adapted to the lack of sight, I can drive with no problems.

The neuro damage is a little bit more annoying as its unpredictable. I drop stuff all the time, go into spasms, lost the feeling at the top of my leg at my inner thigh, I'm lucky that it's somewhere that isn't really that much if that makes sense. The biggest problems I have come with not being able to concentrate very much and I'm nowhere near as articulate as I used to be. I forget things easily and can struggle with simple tasks, and it gets much worse if I'm tired.

They found I have intracranial hypertension, kidney stones, and a cyst on my ovary, all things that they say will get better if I lose weight so I'm trying my best. Unfortunately, steroids don't help, even if you don't give in to the cravings and you don't retain too much fluid, you get a side effect called moon-face which makes you look like you ate the entire fridge and the freezer and the cupboard too!

I miss being here, I think I might start lurking back round!
Hi - I was very sorry to read about all your problems - you make some of them sound quite matter of fact yet they're serious medical conditions - you seem like a determined person - I hope that will help you with your problems. I hope you do more than lurk - and keep posting - I'll have a look at your blog too - take care. :classic_smile: