The Beginning of The End

This is the second part in sharing my personal experience of battling with ill health.

Continuing on from The Beginning.

Instantly, I felt sick to my stomach.

So many questions were running in my head, “Is it a brain tumour? Am I dying? How long have I got left?” and many more. It was difficult to try and be positive.

I barely spoke to Ewan or Mum over the next couple of days. I even struggle to this very day to explain how I felt. Even though the days leading up to the appointment were a blur, the world just felt very still. This was a completely new level of isolation, it was horrible.

Even Ewan said to Mum, “This isn’t looking good, is it?”

I remember the night before my appointment, I was lying in bed with Ewan, crying. He didn’t know what to say, instead he just comforted and cuddled me. I cried myself to sleep.

I tried to eat two slices of toast, but I felt too nauseous to eat. Ewan cuddled, and kissed me before I got in the car. My head was telling me that this was goodbye.

Mum drove me to King’s Lynn hospital, I was quiet the entire journey. Thankfully, we arrived with time to spare, this meant I could take my time with walking and not put myself at risk by trying to walk faster. Understandably, for a Saturday morning, the waiting room was empty. We sat outside the room I was going to be seen in, and I placed my head in my hands.

I wanted to lash out and scold myself because I was incredibly frustrated. No doubt, whatever was wrong, would be my fault. Everything always was my fault.

The door opened, and a tall man called my name. Mum tapped on my arm to get my attention, I felt like I couldn’t breathe when I walked into the room, “I’m going to be told the worst”, I convinced myself. Given the circumstances, it was easier to think negatively.

We sat down and the man introduced himself, he was a Neurologist. He asked about my symptoms, when did they start, how often do they occur, etc. He was confused as to how I could only understand what Mum was saying, and not him – to be honest, I was confused too. It was easier for me if he spoke to Mum directly as I was getting more upset and frustrated with not being able to hear.

Mum turned to me and said, “Right, the results of your MRI…”
Before she carried on, I thought, “This isn’t right, how can another tell her daughter bad news like this?”. She continued, “…is clear and there’s no signs to show a TIA”. I felt like I was going to explode with relief. I was in shock; I really thought the worst.

The Neurologist told Mum that he would see me in 2 months to check up on my symptoms. One thing he did say was that, apparently, a lot of females my age, experience a phase of hearing difficulties which is caused by stress.

We left and headed to the car. I cried all the way home, because of relief and frustration. I was still left not knowing what was causing all this – Yes he said about stress but my instinct was telling me different. But this appointment, it was just the beginning of many more to come.

In May, I had my first hearing test. Wearing a set of headphones, I had to press a button when I heard a noise, which was at different levels (high pitch, low pitch). Then a follow-up appointment was booked with an ENT Consultant. That quickly come around and I was diagnosed with Bilateral Hearing Loss. Yet, no further forward as to what had caused the hearing loss.

Also, in May, I had to attend a medical to be assessed on whether I was fit to work. The assessor asked me about my Sales Assistant role and what duties I had. After she assessed me, she tried finding a role that I could safely do before giving me the news that I was no longer fit to work. This broke me.

Eye appointments began in June. Initially, I saw an Optometrist who carried out a few in-depth tests (I can’t remember the correct names of them, sorry!), but the results did not show anything so he referred me to an Ophthalmologist. It was also in June that I began bleeding daily, I never knew when I was on my period anymore. I was in no pain or discomfort which worried me so I asked to see my GP who told me to keep a diary of the bleeding and come back in a fortnight.

I had never heard of so many different ‘ologists’!

On the 13th of June, I attended a meeting with my Manager and Area Manager, along with Mum who relayed everything to me. Mum updated them on all of the upcoming appointments and that there was no improvement with regards to my symptoms. They dismissed me.

Could my life really get any worse?!

The Ophthalmologist wanted more tests to be done, but this would mean a referral to a specialised eye hospital. This was when I first learned of Moorfields Eye Hospital in London, and the waiting list was long.

I went back to my GP to show my diary, she examined me, took some swabs and arranged for a follow-up appointment in a week or two to discuss the results and where to go from there.

A kind woman offered to pay for me to go to the private Moorfields Hospital, and with how fast my vision was deteriorating, I accepted. An appointment was made for 17th August.

Mum and I had to leave between 3am and 4am to get the train, my appointment was at 9am and didn’t want to chance any delays. The walk to the entrance of King’s Cross seemed like it had taken forever. I really struggled and the more I tried, the more it was affecting my balance. All I could do was hold on to Mum’s arm tightly.

After a while, we eventually found the private clinic. The next few hours consisted of a variety of assessments and in-depth tests, and then I was to see a Consultant at the end of my appointment. She was really lovely and took her time to help me understand everything she was doing. After a few tests, she discovered my Optic Nerve was pale, and again, more tests needed to be done.

Mum told the Consultant that I had been referred to the main Moorfields Eye Hospital and was on the waiting list, she then sent another referral to request if I could be seen any sooner. That’s all she could do, she wished she could have done more for me after seeing how upset and frustrated I was.

The walk back to the platform seemed to take twice as long as the first time round. Within seconds of settling into my seat on the train, I was asleep.

A week or so later, I received a appointment at the main Moorfields Eye Hospital for the 3rd of November to see a Professor. I never thought all of this would get so complicated.

Again, I went back to my GP to find out the results from the swabs, thankfully they were all negative. So, she referred me for an Ultrasound and an internal scan.

By this point, I had more referrals than I had hot dinners during my years at school!

At the beginning of September, my walking was deteriorating rapidly, I couldn’t do anything myself, I couldn’t go to the toilet without assistance, or using a shower. I could no longer hold a cup without dropping it or spilling the drink. My hearing difficulties were driving me insane, as were my ‘blind spots’. The bleeding continued and my mental health took a bad turn.

The moment I hit rock bottom, was when I became wheelchair bound. I’m not going to lie, I was suicidal. Was this really my life now?

Things couldn’t possibly get any worse, right?

If you would like to continue reading my story, please head over to To the Point of No Return.

About Ami

Hey fellow superheroes! I'm Ami, I'm 24 and I live in Norfolk, UK. On my blog, UndercoverSuperhero, I openly talk about my recovery journey which stemmed from being in hospital and a specialist neurological rehabilitation centre for 9 months. I talk about how I maintain a positive mindset whilst coming to terms with my disability. I love superheroes, so much so that my partner and I are having a superhero themed wedding! I generally like to talk about anything and everything on my blog, I also have an ongoing series called "The Reality of..." which allows readers and bloggers to raise awareness of the disabilities, mental illnesses, chronic illnesses, impairments, that they live with as it is so important to raise awareness! Everybody has a voice! 💚

19 Responses

  1. You are so brave and I genuinely feel frustrated for you with all of the referrals you had to deal with! Dealing with all of those horrible symptoms is enough but to also having to deal with the stress of waiting and not knowing the answers is awful. This is such a powerful story and I’m in total awe of you ❤️

    Liked by 1 person

  2. You have been through so much, Ami, and have coped brilliantly with it all. You are one strong, determined lady. Your writing is so heartfelt and honest. Your journey is an inspiration to anyone. x

    Liked by 1 person

  3. Mark Kent

    very very well done for talking about it.people never see the every effects .there views/judgements are very Snotty Nosed ..it does help a great deal too have a good cry ,IT HELPS ME ..i have anxiety
    migraines .ibs ..allergies M.E . long list health issues .i take part in a lot lot research
    my blog,http;//mark-kent.webs.com
    twitter,supersnoopper

    Liked by 1 person

  4. Aww love,y you are so brave and inspiring you are completely amazing, you might think it but you are. It sounds like you have had a year from hell but you are still here to this day and I’m glad you are because you are such a supportive friend. I can’t comprehend what you have been through but you are so so brave. Such an inspiring post you are one lucky person you might not think it but you are still here today and I’m glad 💗

    Liked by 1 person

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