I promise I’ll get on to telling you what MS actually is at some point soon – but for now I want to tell you the story as it has unfolded for me.
In June 2017 I was at Poppy’s play date. As is typical in the UK, the fact that it was June, didn’t stop it from raining. I was stood on a hill watching Poppy play with her buddies, Dexter and Til when I got (what I thought was) some rain in my contact lens. I wiggled it around a bit, sometimes that fixes it, but no luck. I’d slapped my make up on in a hurry as well that morning so perhaps I’d managed to get some foundation or mascara on my lens. That certainly wouldn’t be a first.
Once I got home, I gave the lenses and my eyes a good clean with saline solution, and popped it back in. No change. Enter the excuses. “Well it could just be the new prescription. It always takes a while for my eye to adjust.”
I carried on with this irritating, slight lack of focus into the next week. Making excuses such as “oh, I’ve just put them in back to front”. It wouldn’t be the first time I’d put the left lens in the right eye and vice versa. I have different prescriptions for each eye so this obviously causes me problems.
On the Thursday, I was trying to read the serial numbers off some computers and was really struggling. I REALLY knew there was a problem when in our team meeting on Friday I found myself having to walk right up to the projector screen on the wall to see what was on it.
Saturday, we were back at Poppy’s play date and I could tell that whatever was up with my vision had got worse. Those of you that are contact lens wearers will appreciate it feeling like I’d not bothered to put my contact lens in the left eye. If I covered my right eye up, everything went grey in my left. I had limited peripheral vision still but I couldn’t see straight ahead. If I looked directly at you, I could see you from about chest downwards.
The gravity of what I was losing hit me like a ton of bricks and I broke down in tears once we got home from Poppy’s play date. I was really lucky and managed to get an appointment to see my Optician within a couple of hours.
When trying to read the letters off the wall out of my left eye, I couldn’t see a thing. My optician said based on all the photos he took of my eye, he couldn’t see anything wrong with it, but also said there was clearly something very wrong because I couldn’t see. I felt so relieved at this – at least I wasn’t dealing with a detached retina.
He referred me to Boston House, a branch of the hospital and the eye specialist in Wigan, for further tests. He also suggested, if it got any worse in the meantime to self refer to St Paul’s eye unit, at Liverpool Hospital.
By Tuesday evening, I’d still not heard anything from Boston House about an appointment, and I was pretty hysterical. Following a conversation with mine and Dave’s line managers, it was agreed we could take the day off from our respective jobs to go to St Paul’s in Liverpool.
That first day in outpatients, went on and on. After going through Triage, I was eventually seen after almost 1.5 hours. They prodded my eye about, putting every drop in my eye you could imagine, and making me (attempt to) read coloured blobs with numbers hidden in them, and the letters off the wall. Where my left eye was concerned, I failed every single test miserably. My least favourite experience is where they dilate your pupil. They put a drop in which opens your pupils right up, so that they can get a good look at your eye. Kind of like this guy, except waaaay less cute!
Your pupil being dilated, means that there is a hell of a lot more light going in than usual, and you’re in a brightly lit hospital waiting room. It REALLY hurts!
Anyway, I digress. After all that prodding I was informed I needed to come back the next day as the department that could take a photo of the back of my eye wouldn’t be in until then. But not before I’d been asked if I had any tingling in my legs.
Now, if you’ve been following my blogs so far, you’ll know that yes, I did have tingling in my legs. So obviously I lied and said no. To ask such a seemingly unrelated question frightened me. One, why are you asking me that and two, how do you know that?!
I duly arrived at the hospital the following day for an appointment to have photos of the back of my eye taken. I was then introduced to an opthamologist. She informed me that I actually had lovely looking eyes that were pleasant to look at, whilst asking me if I’d been Googling my symptoms. I told her that I’d stopped as Google may as well have just told me that my eye was going to fall out, and I didn’t have any interest in that rubbish. She laughed and asked me if I was experiencing tingling in my legs. There it was again.
It didn’t really enter my head that this might be a really important question to answer and it definitely didn’t enter comprehension that lying about it wouldn’t change it.
She told me she couldn’t see my optic nerve, the bit behind my eye, and she wanted to send me for more tests to uncover any problems there. She assured me that just because she suspected my problems were nerve related, it didn’t mean anything sinister.
Just a day later, on Thursday, I got a call from the hospital asking me if I could go in for an evoked potential test the following Monday. I couldn’t do Monday. I needed to be in Nottingham for a really important meeting, so I asked for the next available appointment, which was in two weeks time.
I got off the phone and Deb, who I work with, told me I was an idiot for not putting myself first and to get back on the phone and see if I could take the Monday appointment. As it turned out I could, so on Monday I found myself back on my way to Liverpool to have a bunch of electrodes put on my head, around my eyes and in my eyes.
The electrode, it just felt like an eyelash stuck in my eye. But honestly, if you stick something resembling a stray eyelash in someone’s eye and then tell them not to blink, you’re asking for trouble! I couldn’t stop blinking, and I’m pretty sure I made the nice Irish doctors job very difficult. He stuck electrodes anywhere he could on my head, and then made me watch these really weird moving images. They looked a bit like those magic eye things we all used to do as a kid. You know, with the hidden 3D drawing? The idea is that the images put your eye under intense stress, and the doctor gets to see how it responds. I was pretty sure that the images would hypnotise me or something!
Maybe he did hypnotise me or something, because when I was asked (yet again) if I had tingling in my legs, I answered truthfully.
Apart from an invite to an MRI scan on my head, this was the last I heard for a little while. Whilst I understood that the MRI was on my head, I just thought of my eyes. I never actually made the connection that it was on my brain. Perhaps if I had, I would have realised what I was dealing with, but I simply didn’t.