Guest Serial: My Recovery (Part Seven)

This is the seventh part of a guest serial, in 637 words.

There was no disputing the fact now; I was disabled. A person with a disability.

How did it all come to this?

I was adamant that this was my fault, but kept questioning myself as to what had I done so wrong to deserve all this?

Moorfields had referred me to The National Hospital for Neurology and Neurosurgery, in London, to undergo a variety of tests to, hopefully, find the cause of all that had happened. Hmm… wishful thinking!

Over the next fortnight, I was constantly sleeping on and off, I received an appointment to have hearing aids fitted – at last, something to hope for!

I really tried to be positive on the day of my appointment, I kept telling myself, “This will work, it has to!”. Doubts started to etch in my mind, whilst we sat in the small waiting room, “What if this doesn’t work? What am I going to do?”

A short man came into the waiting room and called my name, I only knew it was my turn as Mum stood up and had taken the brakes off my wheelchair. The audiologist placed my hearing aids in each ear and started testing different volumes, levels, and frequencies, etc. He explained to Mum that, even with hearing aids, my hearing will never be 100% perfect. To me, this just seemed like he was trying to reassure me, if the hearing aids were not to work. I knew, deep down, that my hearing would never be perfect, but I just yearned to be able to have a conversation without misinterpreting or not being able to understand.

The first time he tested, no change apart from increasing the volume of the background noise. Second time, no change. Third, nothing. After a few more attempts, it was clear that hearing aids would not work for me.

What was I going to do?

I slept for the next few days; the outcome of the appointment had drained me in more ways than one. Physically. Mentally. Emotionally.

When I was awake, I looked for disability aids online, to try and restore some of my independence. After scrolling through several pages, I almost threw up. It hit me, like a ton of bricks, that this was it. This was going to be how my life would pan out. A miracle would never happen to me.

I remember one afternoon, Mum tried to help me shower but it was upstairs, and I could no longer walk upstairs, so instead, I had to crawl up. I had central chest pains by the time I reached the top of the staircase which terrified me, I wasn’t sure if it was a panic attack or something else. I dragged myself into the bathroom and tried to pull myself up, by using the side of the bath, but with each pull I felt like I couldn’t breathe. I tried three times but by the third time, it felt like something was blocking my airway.

I gave up trying.

After breathing deeply to try and regulate my breathing, I mustered up enough energy to turn myself around with my back against the bath. I cried like I’d never cried before.

I convinced myself that this was going to be my last Christmas. I was weak, all I did was sleep. My eating disorder emerged from the shadows once again. To be honest, I did want my life to end, what was I living for? My health, my relationship, my job, everything was disappearing, fast.

I even started to write down what I wished for, in terms of my funeral.

Of course, I was scared, but I wanted to be free of all the pain and misery. I had no quality of life.

I can’t remember Christmas; I must have just slept the majority of the day.

Guest Serial: My Recovery (Part Six)

This is the sixth part of a guest serial, in 883 words.

I laid down on the stretcher and the paramedic put a blanket over me then strapped me in. Ewan sat in one of the seats opposite to me. Due to a past experience from when he was younger, Ewan felt very anxious about the journey. I knew this would upset him and I felt guilty, I kept saying “I’m sorry”, even though I couldn’t help what had happened. I always think the worst in any situation, and I asked the paramedic if something really bad was going to happen or if I was dying, she tried to reassure me that it was a reaction to the antibiotic. We got to A&E about 10pm.

I was taken into a side room, the next hour was a blur of blood tests, ECG’s, observations, etc. They asked for my medical history and that in itself had taken about 20 minutes to sum up what has been happening throughout the last 9 months, and even when they left the room, I forgot to mention something!

The results came back normal but they wanted to continue to monitor me for the next few hours. I slept on and off until 4am, we were told that as the results didn’t show anything, they were certain it was a bad reaction and discharged me. Ewan and I sat in the hospital entrance for the next 2 and a half hours as Mum was unable to pick us up until 7am.

While we waited, we watched hundreds of nurses and doctors arrive around 6am. My heart went out to them, knowing they would soon be starting a 12-hour shift, caring for people, saving lives. The real superheroes.

October passed by quickly as I spent more time sleeping than being awake.

The day of my appointment at Moorfields Eye Hospital, in London arrived. Thankfully, the time of my appointment was near lunchtime and didn’t have to get a ridiculously early train. This was my first train ride as a wheelchair user and the first time Mum witnessed my involuntary movements while I was asleep. I kept, without knowing, kicking the woman opposite me – if you ever read this, I’m still so very sorry!

Moorfields is a maze! We were directed to different areas throughout the next few hours while an array of specialised tests was carried out. Some were standard eye tests, but the more I had, the more detailed they were and the more my eyes were put under so much strain that by the last test, I was crying hysterically because I could not handle anymore. All the tests were painless, but they drained every ounce of energy I had.

I’m very thankful for my wheelchair that day because there was no way I would have been able to stand for more than a minute.

A few days later, I had to go back to King’s Lynn Hospital for the ultrasound and internal scan. The nurses were very lovely and put me at ease within minutes. Both were painless, but cold – the tests, not the nurses! By this point, I had lost track of what results I was waiting for – hearing, vision, bleeding, and possibly more.

The following week, on Monday, Mum received a call from Moorfields, they wanted to see me on Friday.

I thought, “What now??”

Fortunately, my best friend, India and her boyfriend were in London that week and offered to come with us to the appointment. I hadn’t seen India for 2 years and I was worried as to how she would react to actually seeing me. We always were in contact with each other, and she knew about my health, but this would be the first time she actually saw me.

As soon as she saw me, she ran up to me and cuddled me. In that moment, I could forget everything and focus on the love I had for this girl. We always carried on from where we left off. It was a good hour or so until my appointment so we talked and had a laugh, which was refreshing as I had not genuinely smiled in so long.

While we were in the waiting room, I was trying my hardest to hold back my tears – I was scared of what news I would be given.

Time passed and I was called in. The four of us sat there whilst a consultant told them my results. I kept asking what was happening but I just got told that it would be explained to me soon.

It’s frustrating, it was my appointment and nobody would tell me my results there and then.

After ten minutes, we were told to go to an office. But in the corridor before the office, my wheelchair suddenly stopped. I turned around to see what had happened and saw Mum burst into tears with India comforting her. That was the last straw, “What the hell is wrong?”, I snapped.

Mum couldn’t tell me. India pushed me towards the seating area in front of the office we had to go in and sat next to me. She told me, “Your optic nerve is severely damaged, they can’t do anything to reverse it”.

I couldn’t speak, I just cried.

The office we were about to go in, was where I would be registered as severely blind.

Guest Serial: My Recovery (Part Five)

This is the fifth part of my guest serial, in 796 words.

Since March, I had been keeping track of my weight, I was almost 18 stone. By September I was 12 stone.

I thought I had a UTI (Urinary Tract Infection) as weeing was really painful. With everything else going on, health-wise, I knew it was best to get checked. Mum took me to see a nurse and after doing a sample, she tested it and the result was that she “thought” I had a slight UTI, so she prescribed me some antibiotics, more specifically, Nitrofurantoin.

I took the first tablet at around teatime, my instinct, when I first saw the capsule, was telling me that something bad was going to happen if I take this – despite being reassured it was safe to take. I reluctantly took the tablet.

I woke up the next morning to tingling in my left arm, I had a habit of sleeping awkwardly so I put it down to that. I asked if someone could read the side effects in the leaflet. Nobody was willing to read them because they knew I would have been paranoid – I always read the leaflets; they are there for a reason!

My instinct still carried through and I refused to take another tablet. After a short nap in the late morning, I woke up to tingling in my right arm. Now both arms were tingling, and because I didn’t know the side effects, I put this down to not doing much since I first woke up. Still very tired, I had another nap.

I woke up late afternoon and my upper torso was tingling. I couldn’t ring anyone. I decided to try and push myself to walk into the kitchen, I found it very difficult to maintain upright whilst walking – I had already noticed that I had been ‘walking like a drunk’ for quite a few weeks now, so this new symptom really confused me. It took all my energy and a long time that by the time I had got into the kitchen, I had forgotten what I wanted. Frustrated, it took me the same amount of time to get back into the living room. I flopped into my recliner, exhausted and instantly fell back asleep.

I woke up in the early evening to discover my entire body was tingling, even my head which scared the hell out of me! I tried telling my family about how I felt and that this tingling sensation had spread throughout my body since this morning, but my speech was very slurred. I wasn’t sure what was worse, how I was feeling or the fact nobody believed me.

I remember being really angry and tried to get up from my recliner, but as I tried to stand my legs were wobbly, I couldn’t feel any strength in them and I felt very off-balance. After several attempts, I managed to stand up – how I don’t know. All it took was one attempt to take one step and I collapsed.

I landed in our dog’s basket – I know it sounds funny but at the time it really was painful. I was in a very awkward position, my head was against the staircase, the rim of the basket was digging into my back, my arms were flailing. I felt the entire left side of my face drop and I really thought I’d had a full stroke. I’d never been so scared in my life.

Still, nobody believed me.

After a while, I managed to roll onto the floor and remained laying on my front for the next hour. Crying. Wishing somebody would help me or even ring for an ambulance.

It took me over an hour to crawl to our downstairs toilet, which is a 3 second walk from our living room. From thereafter, my sleeping pattern became erratic.

Still tingling the next day, I felt a bit more ‘with it’ so I went onto my iPad and looked for Nitrofurantoin side effects, and what I discovered, sent alarm bells ringing.

Every person that had commented on this page, regarding the side effects, had experienced a bad reaction to the antibiotic and 90% of them ended up in A&E.

My instinct was right from the moment before I took that tablet. I try not to think of what could have happened if I’d taken the full course of tablets.

I showed Mum the comments and she rang 111 straight away. They sent out paramedics who carried out an ECG, tested my blood sugar, blood pressure and oxygen levels. After Mum had told them about all the symptoms, they said it was best to go to A&E to be monitored. Ewan supported me whilst walking to the ambulance.

This was my first ever ambulance ride and I sure as hell hoped it would only just be the once!

Guest Serial: My Recovery (Part Four)

This is the fourth part of my guest serial, in 665 words.

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.

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 for me, 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 an 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?

Guest Serial: My Recovery (Part Three)

This is the third part of my guest serial, in 675 words.

Instantly, I felt sick to my stomach.

So many questions were running through 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 a mother tell her daughter bad news like this?”. She continued, “…is clear and there’s nothing 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. But this appointment, it was just the beginning of numerous appointments.

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 it.

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.

Guest Serial: My Recovery (Part Two)

This is the second part of my guest serial, in 904 words.

Within a few days, I received an appointment, for the 31st March, to see a Consultant, I was relieved as I thought I would finally get answers. The night before my appointment, I was extremely irritable and restless, I managed to get an hours sleep. Nervous because of the appointment and anxious due to who would be taking me to the appointment.

I slept on the journey to my appointment, which was about 25 minutes. I was struggling to walk without holding on to something and yet the person I was with kept telling me to hurry up and walk at their pace. I was relieved to finally sit down in the waiting room despite this person demanding my phone so they could play a game while we waited.

After some time, it was my turn to be seen. The consultant I saw was lovely, she carried out basic tests to do with my hearing and asked me questions about my health. Most of the time, I tried to answer the questions myself, but the person who I was with kept belittling me and putting it across to the consultant that I do not care about my health.

I never thought a relative would be that unsupportive.

The Consultant wanted me to go to the audiology department to have a hearing test but the relative refused as they had somewhere else to be. I left the appointment knowing that an appointment for a hearing test had been requested and I also knew I was more drained after I left the hospital – but this wasn’t because of the appointment.

I slept on the way home too, a mixture of feeling drained and not wanting to make conversation as I was livid as to how I was treated. I couldn’t wait to get home.

Throughout the rest of the day, I was in and out of sleep. In the early evening, I woke up really confused and mum had noticed the left side of my mouth had fallen. Mum started crying and rang 111, and asked my sister to come round so she could keep an eye on me whilst Mum was on the phone. The operator advised Mum to take me to hospital ASAP.

On the way to Kings Lynn Hospital, the confusion faded but the left side of my mouth still felt like it had fallen. When I was told what had happened, I was convinced I had a mini-stroke (TIA – Transient Ischemic Attack). My Nan had experienced these a few times within the last 2 years so I knew of them and the warning signs.

It made sense with how much stress I was under.

I didn’t wait long, more blood tests and observations were taken and I also did a balance test, which involves trying to walk in a straight line by placing one foot closely in front of the other. I couldn’t place my foot in front of the other without losing my balance. This made me break down in tears as a few months prior to this, I could walk perfectly fine and had no balance issues.

The nurse was perplexed as I was, apparently, too young to experience a TIA but all the symptoms added up. He asked Mum her opinion on what it might be and she replied “a mini-stroke” and the nurse nodded.

We sat waiting in one of the bays as he referred me for an emergency MRI. Half an hour later, he came back to tell us there was nobody available to do the MRI so sent us home with an appointment for the following Monday.

We went back to A&E on the Monday and ended up waiting 2 hours just to be told the earliest emergency MRI appointment would be in a fortnight and in the meantime, I had to be signed off work. The wait felt like forever.

I became really depressed very quickly, everything was just becoming too much.

The day of the MRI appointment arrived; I was so nervous as I’d never had an MRI before. When I went into the room with the MRI scanner, I was taken aback as it looked so much smaller than I had imagined. Not ideal for someone who doesn’t cope well in small spaces. Ear plugs were put in, a button to hold and press if I started to panic and needed to get out, I laid down on the board and the nurse placed this cage-like structure over my head – which did not help my anxiety at all! – and was moved into the scanner.

The loud tapping noises were very loud and daunting at first and I tried to create a beat, from the pattern of the noises, in my head. I imagined myself dancing to the beat – which was interesting considering I could not dance at all! By the time my anxiety had calmed down, it was time to come out. I disposed of the ear plugs and went to get changed back into my clothes. Before we left, we were told that the results would take up to 2 weeks.

The following day, I received a phone call. I had to ask someone else to answer on my behalf as my hearing difficulties now affected phone conversations. After the call ended, the person who had taken the call, wrote down on a piece of paper.

‘That was about your MRI results, they want to see you this Saturday”.