It's going to be OK
Updated: May 27
The beginning of my journey...
On 26th September 2019 I woke up and noticed that my vision was off - the upper half of my left eye was grey and blurry. I brushed it off thinking it's just an eyelash or something but as a couple of days went by and it was still the same I decided to have a look online at what it might be, and though it seemed unlikely being 25 at the time, it looked like I might have a cataract.
I booked an eye test during my lunch break from work on the 30th and I remember being anxious about them confirming my suspicions and stressing over whether I'd need to take time off of work to remove the cataract. As each test was conducted I could see the growing worry on her face. My eyes both appeared to be healthy, with nothing intruding on my visual field so she knew there was some damage to my optic nerve. I was told to go to an A&E at a hospital with an eye unit within 24 hours and so I went back to work and explained that I'd need the next day off - luckily they were very understanding!
I came home and told my mum so she insisted on coming with me. We decided that we'd go to Moorfields Eye Hospital because of their great reputation and set off early the next morning to get the tube into London. It was an exhausting day of being sent to different areas for different tests with long waits at each, but after 8 hours I finally got to see a doctor.
They had all of my test results but wanted to examine me further. Once they took a look at my eye they asked me to hold on a second and went behind a curtain where they discussed my case with various other doctors. I could hear one saying "she's too young for this to be happening to her" and another replied "yeah it can't be can it?!". Then the doctor came back to me and started touching each side of my body in different places and asking if the sensation differed from one side to another. It didn't - but I knew that they were trying to establish whether or not I had had a stroke. They then said to me that they suspect either a minor stroke or a tumour may have caused the change in my vision and they want me to have an emergency MRI as soon as possible. I could see my mum's heart breaking and I knew I needed to be strong. I reassured her through my tears that it's going to be OK though my lack of confidence was evident. On the 10th October I had the scan. I was petrified of what the results would be. I read anything I could find on strokes and tumours which only made me feel worse. I was worried about how my parents were feeling and I wanted them to see me handling it so that they felt I could - even if I didn't believe that to be true. A week passed and I was told to go back to the hospital to see a doctor in the neurology department. When I first sat down I felt as though I was going to implode - my emotions were all over the place and I was struggling to contain them. He started by showing me the images of my brain and pointing out some small white spots. This is it I thought...not one tumour but several. He told me that they were lesions and that I had optic neuritis which was causing inflammation to my optic nerve. Despite not quite understanding I felt instant relief. I'm OK!
He asked if I had ever experienced anything like this before or had any problems with numbness or mobility. I recalled a time in 2014 when the right side of my body felt like I had slept on it for too long (bad pins and needles) and I couldn't grip my right hand or control movement well in my right limbs. The GP just gave me some steroids and it was never looked at further so it couldn't be related could it?
He made some notes and went on to ask me if I had heard of Multiple Sclerosis (MS). I had heard of it but I didn't have the slightest idea of what it was. He explained that he believes I may have MS and would like to send me for another MRI to check for lesions in my spine. He believed that this was my second MS attack (with the first being in 2014).I was told to take vitamin D supplements and wait for a letter with a date to go for the next scan.
On 28th October I woke with numbness in my left hand which spread over the following days to cover my entire left side. I knew it was another attack. I concluded that the stress had brought it on and decided I needed to keep my stress levels down - well try to! I started exercising more, eating well and wanted to make sure I did everything I could to help avoid another attack.
I was back in London for the spine MRI on 28th November. As this was not an emergency scan I had to wait for these results. I spent this time learning about the disease, going down rabbit holes online clicking through hundreds of stories, recommendations, things to avoid - I wanted to know everything! Knowledge is power right? Wrong. I was so focused on being well informed on my condition that I read lots of inaccurate information too which did much more harm than good. I was depressed. Everything I hoped for in life had been ripped away from me. There was no way I could be successful now. It says I'll be disabled within 15 years. No way I could have a family. Nobody will want to be with somebody like me and I shouldn't have children when I will just be a burden - that's not fair on them. I was convinced that my life wasn't going to be worth living. I tried to stay distracted with work and focusing on my diet/fitness. The less I thought about it, the better I felt.
When I received a call at the start of January confirming that there are some lesions on my spine and that it is definitely MS I felt like my last glimmer of hope was destroyed. A part of me held on to the thought that it was just an isolated incident with my eye and what happened years ago was totally unrelated. I know that my family were holding on to that too and I knew that if they saw me crumble with this news then they would too. I decided not to tell my parents right away. I needed to be content with it and go through the motions of processing the diagnosis...then when I tell them I can be confident this time when I say it's going to be OK. I told my brother first. He is calm, level-headed and one of the strongest people I know - his support during that time helped me more than he'll ever know. My friends were my support system outside of home, they were truly amazing. Always knew how to put me back into a positive mindset when I felt myself slipping. After around 3 weeks I told my parents and watched my mum break down as she explained that she is worried about how I'm feeling and coping. I told her I've known a little while and I'm feeling fine - it's going to be OK.
In those 3 weeks I accepted my diagnosis and although I wasn't quite content with it, I had come a long way. The breakthroughs I made in the months that followed are what made me believe with absolute certainty that I can handle this - it's going to be OK.