This is all 24 parts of my recent guest serial in one complete story, including a link to the final ‘Author Reveal’ post with photos.
It is a long read, at 18,226 words.
Shortly before Christmas, in 2016, I was unwell with a common cold and sickness. From thereafter, family members began to notice I was mis-hearing words and sentences. I went to see my GP who put my hearing, well lack of it, down to the after effects of the cold I had, and then prescribed me some nasal spray.
After using the nasal spray for over a fortnight and with no improvement, I went back to my GP. Again, she said it was down to my cold and to keep trying with the spray. I persisted until I actually noticed my hearing issues, and this was coming up to a month and a half since the issues began. My GP referred me to an ENT Consultant at Norwich Hospital, which I thought was odd as that’s not the hospital I go to for anything. Then the waiting began…
I was employed during this time, I started a new role as a Sales Assistant in a charity shop, I felt like I was in my prime as I had fought hard to overcome my social anxiety and despite having these hearing difficulties, I was happy, I was content. I felt the best I had ever felt, especially mentally.
But it was too good to be true…
Work started to treat me differently because of my hearing. I remember one shift that made me feel extremely isolated, it was lunchtime and there was about 4 of us sitting around a table, they knew about my hearing difficulties and I watched them, in disbelief, while they were talking and laughing. I spoke up and said “What did I miss?”, to which one of them made the effort to make me understand and replied with, “It doesn’t matter”.
I was devastated. I thought I fitted in well with my colleagues, but it turned out that when I needed their support the most, they were ignorant, they didn’t bother with me anymore. I thought things couldn’t possibly get any worse.
But again, I was wrong.
Towards the end of March 2017, I woke up one morning with blurry central vision, I didn’t think nothing of it as I assumed it was because I had just woken up. When I went into work, I felt different – I couldn’t put my finger on what it was, but I tried to carry on as normal throughout my shift.
The ‘blurry spots’ had not changed, I had to rely on my peripheral vision (side vision) which was really difficult. I kept feeling ‘off-balance’, not to the extent of dizziness but I couldn’t walk at my normal pace without feeling like I was tipping over.
I had no idea as to what was going on.
It wasn’t until roughly 3pm that day, that I reached breaking point, tears filled my eyes and a colleague took me into the office so I could let the tears flow. After telling her everything that had been happening, she suggested for me to go to A&E. She was worried about me, and frankly, I was petrified. That was my last ever shift there.
I don’t like to waste doctors time and I felt guilty about the thought of going to A&E for something I didn’t feel was an emergency, I strongly felt something was really wrong but not to the point that I would have considered it to be an emergency. So, I didn’t go to A&E that night.
The next day, my colleague’s concerns kept going over and over in my mind and I spent most of the day in tears. I told Mum about what had happened at work the day before, and like me, Mum didn’t feel like it was an emergency. I became more terrified, which I didn’t think was possible, and I got to the point where I begged Mum to take me to A&E because I was thinking the worst.
But I should have guessed, they had no idea what was causing my symptoms. All they could do was blood tests and observation tests, which resulted to nothing, but they did send off an emergency referral to a ENT Consultant.
They sent me home, but advised to come back if my symptoms worsened.
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”.
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.
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?
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!
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.
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.
The night before London, I barely slept. Knowing I was about to stay in London, in a hospital that I’d never been to nor heard of before now, for 5 days, to have a load of tests… I can’t describe how I felt, it’s not that I don’t want to describe it but I simply cannot think of a way to describe the feelings I had.
The initial plan was that Mum would be with me from Monday morning until Wednesday lunchtime, then Ewan would stay with me from Wednesday afternoon until it was time to leave on Friday. It broke my heart leaving Ewan on the Monday morning, I just wanted to stay at home, in the warm, cuddled up with Ewan. But I had to go, for the sake of my health.
Mum drove us to King’s Lynn train station, then we had to get the train to London King’s Cross. We got a taxi from the station to the hospital; we had no idea which way to go.
Upon arriving, it didn’t look like a ‘typical’ hospital. The entrance was quite small too. A man greeted us and Mum spoke to him, handing my appointment letter over to him so he could direct us to where we needed to go. He could tell I was freezing so he kindly let me go into a warmer room whilst he took Mum to the reception desk. I had my head down, for some reason, as we entered the room, but I turned to watch Mum shut the doors behind her. When I turned my head back, to face the room, I felt indifferent.
I was in their chapel.
I’m not a Christian, but I do believe there is a God. For the first time in over a year, I felt at peace. I acted selfishly and prayed for myself.
I prayed that by the end of my stay here, that I would have answers. Closure.
I prayed that God, and loved ones who have passed, would give me the strength to get through these tests.
I also prayed, that if nothing would become of my time being here, then I hoped I wouldn’t suffer much longer. I wanted to be free of pain and misery.
I know I was selfish. But all my life, I’ve been selfless and it had got me nowhere. Now was the time I needed to be selfish.
Mum, and the man who greeted us, came back in to take me onto the ward, where I would be staying for the next 5 days. I thought Moorfields was a maze, but this hospital was in a league of its own! Either that or Mum gets lost easily (Love you Mum!)
There were so many levels, corridors, all which seemed small and narrow. Quite daunting, actually.
We arrived at the ward, I can’t remember the name of it, and the kind man went to the reception desk to tell them I had arrived, we thanked him before he left to head back to the hospital entrance.
A nurse showed us into one of the side rooms, which we were told that’s where I would be staying. Obviously, everyone would love to have their own side room, so I was annoyed to then be told I wouldn’t be staying in the side room, instead I would be staying in a bay which was in direct view from the reception area.
Thankfully, it was only a small area which fitted 2 bays. There was a view, from the window, of a church or cathedral, from what I could make out.
The rest of Monday was spent settling in and meeting the Doctor who would be taking on my case for the week ahead. My hearing was at its worst so I asked others to communicate with me via a handheld whiteboard. He wrote down what tests I would have over the course of the week. He also said that he would need to do a blood test shortly.
Is it just me that when nurses take bloods, they aren’t really painful plus they are quick, but when Doctors take bloods, it takes ages and is really painful?
The blood test was enough to wipe me out for the rest of the day. Mum bought a load of crisps with us as, let’s be honest, hospital food isn’t that great! I can’t remember what I had for tea that Monday night. When I was settled in bed, it was time for Mum to go, she was booked into a hotel nearby.
I cried because I didn’t want to be on my own, I was scared.
My sleeping pattern was still erratic so I kept waking up during the night. At one point, I woke up and looked at the chair beside my bed. From what I could make out, it looked like someone had unpacked all of my clothes and just dumped them on the chair. But then, the ‘pile’ started to shuffle.
“Mum?”, I whispered.
She turned to face me and could see from my expression that I was confused as to why she was sleeping next to my bed, she said, “I’ll explain in the morning”.
I was able to sleep a bit better knowing Mum was beside me.
Mum had to go to the main reception, near the hospital entrance to see if they could help her find somewhere to stay. She didn’t have time to explain what had happened before she went so, I had to wait until she came back. In the meantime, I was waiting to be taken, by a porter, to have eye tests.
A woman stood at the end of my bed put her arms up as if to say, “well?”, I asked her to use the whiteboard as I can’t hear. She wrote, “What do you want?”. I thought, “Erm… hold on. I didn’t know this woman, she had nothing with her, no trolley or papers with her, I had no idea who she was”. So, I said, “Sorry, what do you mean?”. She got angry and quickly wrote, “BREAKFAST!!”. I thought, “Wow, I’ve not been here for 12 hours and I’m already being treated like crap!”
It really annoyed me how she just assumed I knew who she was and what her job was!
After taking a deep breath, I politely said, “2 slices of toast with just butter, please’. Then she went. I thought, “Can I go home already?!”. She came back 45 minutes later with a plate that, apparently, had ‘toast’ on it. It looked green! I reluctantly took a bite and I couldn’t even chew it, inedible was an understatement!
Thankfully, a porter soon came to collect me. A few lifts later and I was taken into a room with a lady welcoming me in. She really took my hearing difficulties on board and took her time to help me understand. There were so many different tests done during the next 2 hours. Some were simple but the rest were draining. By the time we had finished, I was nodding off in my wheelchair.
I didn’t have to wait too long before Mum came to meet me. She took me back to the ward because all I wanted to do was sleep. Mum ordered me tomato soup for lunch and when it arrived, it turned my stomach. It smelled vile! Crisps it was again for lunch.
Mum eventually told me what happened the night before. There was someone who kept knocking on her door, in the early hours of the morning and it frightened her. She didn’t feel safe there so she got a taxi back to the hospital, she then explained what had happened at the hotel and the nurse let her stay beside me. Reception couldn’t find any hotel nearby, at short notice so they allowed her to stay for as long as I was there.
I hated knowing I couldn’t protect her and reassure her that everything was OK.
By Tuesday evening, Mum wanted to stay with me for the rest of the week, so Ewan stayed at home.
I told Mum about what happened with breakfast, she only went to Gregg’s to get me a couple of sausage rolls! I scoffed one and a half because I was bloody hungry! That’s what I had for breakfast each morning that week, except for Friday as I was sick of them by then. I avoided the hospital food; I don’t know what oil they used but it just made everything sickly.
Wednesday morning, I had to have nerve tests (again, I can’t remember the names). I was connected to all these different wires, and then the consultant would place this object against my skin which would cause an electric shock. Some I could feel, some I couldn’t feel.
And before you wonder, yes, I did say to the man that I was having a shocking time.
He didn’t laugh so that kind of ruined the atmosphere…
Depending on the different areas of my body, that he tested, some areas would affect my eyes and they would start shaking really fast. It felt bizarre as I had no control over it. After all that was done, he went to get another consultant to see if any more tests needed doing.
About 10 minutes later, he came back with a man. They were talking with Mum and I kept nodding off.
The other consultant wanted to do a blood test, I thought, “But I had one 2 days ago!”. They could sense my irritation. Good! They spoke with Mum for a few more minutes, then she turned to me and said, “They need to do a blood test from your leg”
“My what now?”. “Is that even normal?
“How??”, I said, calmly… I was not calm; I was bloody freaking out! “From your shin”, Mum said. My eyes widened in horror, the thought of a needle going into my shin made every single part of my body cringe.
And honestly? It was painless. I didn’t even know they had done it!
That traumatised me for the rest of the day, every so often I kept saying, “I can’t believe they done that!”. Wednesday afternoon was busy with someone from the genetics team wanting my family medical history. The poor bloke kept running out of paper because our family is so big.
We woke up Thursday morning to discover London was covered in snow. Brilliant, not! We were due to get the train back home the next day, we hoped it wouldn’t cause any cancellations.
Thursday was MRI day, specifically brain and spinal MRI. I laid on the board, to be moved into the scanner. I was crying, the last few days were catching up with me and I felt physically and mentally drained. The nurses didn’t do anything to comfort me. I kept nodding off but woke up, at one point, to find a man injecting this coloured fluid into my IV, and it instantly made me feel sick.
“Get me out!”, I shouted, I thought I was in a horrible nightmare. The bloke looked at me, confused. A nurse tried to reassure me that it was something that makes, if there’s anything wrong, stand out in the scans. I was hyperventilating at this point; I wouldn’t have minded as much if I had of been told beforehand.
I laid back down and they moved me back into the scanner. Thankfully, I slept through the rest of the MRI and avoided any further feelings of nausea.
As we were due to go home on Friday, they tried to do a lumbar puncture on Thursday afternoon, but by the time I had come back from the MRI’s, there was nobody available to do it. I was thankful that it was delayed, I definitely was not ready for a lumbar puncture.
On Friday morning, it was still snowing heavily, which meant all the trains were cancelled. So, we had to stay an extra day. A nurse came by and told Mum that I would definitely be having a lumbar puncture today.
When the woman arrived to do the procedure, I was crying before she set it all up. In my head, none of this was normal. I was anxious as, during the procedure, you need to lay still and I’d been experiencing involuntary jerks/movements for a few months and I was petrified that this would jeopardise it.
I laid on my left side, facing Mum, she tried to keep me calm. I won’t go into detail about the procedure as, to me, it was horrible and I don’t want to relive it. I’m sure you all know what it involves. She wasn’t even halfway through the lumbar puncture before I started shouting, “I can’t do this anymore, I’ve had enough”. Mum had tears in her eyes because she knew I had been through hell and she wanted to help but she couldn’t.
Eventually, it was done. I hope I never have one ever again.
Friday evening, a man with a few students came to see me. It turned out he was one of the top neurologists in the hospital. He spoke with Mum for quite some time.
From the moment I noticed my walking ability deteriorating back in 2017, I just knew it was Ataxia. My step-grandad had Ataxia and I had all the symptoms that he had.
All the tests and scans confirmed it. I had Ataxia and severe nerve damage.
Reality hit me quite quickly and I broke down in tears. I got what I came for, answers. But I left the hospital with no further support or advice.
I couldn’t wait to get home on Saturday. Thankfully, the trains were running. So as soon as we were given the go-ahead to leave, we left in seconds. I was freezing and starving on the train journey back to King’s Lynn, Mum asked the person who was picking us up from the station, if we could pop into McDonald’s on the way home.
Bad choice I know, but I was starving. I felt so sick but I didn’t know what was causing it. The stress of all the tests? The food or lack of it? The travelling? Not knowing where to go from here?
Whatever it was, I couldn’t wait to get home. Hopefully some sleep would make me feel better.
The day after I came home, I woke up with a horrible burning feeling in my stomach, maybe I caught something from being in hospital? It wasn’t long until I began vomiting bile. I’d never experienced this before so it did freak me out. I actually have a fear of vomiting and, each time in the past that I have been sick, I usually say afterwards, “Well, I hope that’s got rid of my fear now!” But it never did.
Once I had been sick, I did feel more myself. I don’t remember any noticeable changes or showed any other symptoms. Although, I remember falling asleep at lunchtime on the Sunday.
The following is spoken by my Mum,
“You slept for hours, which was normal. It was around teatime that I tried to wake you, as I had made you some toast, I knew you wouldn’t have wanted much to eat as you’d been sick earlier in the morning. You woke up briefly and tried to take a small bite, but you fell back asleep. I knew, deep down, that something wasn’t right.
At night, you started getting agitated and began throwing your arms about. I phoned 111 to ask for advice, after explaining how you’d been feeling that day, they advised me to give you paracetamol because they said it sounds like you had a fever. You managed to take 2 tablets.
We noticed that your clothes were wet, you’d had an accident. So, Ewan and I cleaned you and changed you into a fresh set of clothes.
Later on, that night, there was still no sign of improvement. I phoned 111 again and they sent a doctor out to come and see you. He tried to get a reading of your oxygen levels and blood pressure, but he couldn’t get a clear reading. The doctor came to the conclusion that it was best to get you to hospital, to get checked over.
Paramedics arrived and they tried to get you to stand, but you just fell to the floor. You were carried out on a stretcher.”
The following is spoken by Ewan,
“When you were sleeping in your recliner, and getting agitated, I held you in my arms as you were trying to throw your arms about. It seemed like you were having some sort of fit or seizure. I knew something was wrong, but I know you, I knew you were going to pull through.
I came with you in the ambulance, to King’s Lynn, I was there with you all the way.
I continued to stay with you, until the early morning. Doctors and nurses were flitting in and out. They had to put you in the resuscitation area, only because there were no other beds available. It broke my heart seeing you like that, but I knew you were a fighter.
Mum came up in the morning to stay with you, and I went home. I hated leaving you but I promised you I would come back.”
The following is spoken by Mum,
“Ewan got in touch with me to say you had been admitted to Critical Care.
On the Monday, we came to see you, the nurses had made you comfortable. They kept a close eye on your oxygen levels and blood pressure. But over Tuesday and Wednesday, there was still no change.
On Thursday, the hospital rang me, at lunchtime, to advise me they were going to put you on a breathing machine because you were getting very agitated and they needed you to rest, to give your body a chance to survive whatever was doing this to you.
As soon as I got off the phone, I came up to be with you. When I saw you, you had an oxygen mask on, you were throwing your arms about and rocking your head from side to side. The nurses said they were going to put you in an induced coma, to let your body rest.
Doctors took me into the relatives’ room and told me they did not know what was wrong or what was causing this, but they did mention it could be a type of Mitochondrial disease.
After you were asleep, they let us see you. It was very upsetting to see you laying there, with 6 different machines around you.
The doctors didn’t know if you would pull through. They moved you to the other end of the ward as that was where the patients, who are in more critical condition, stay.
A chaplain came in to say prayers for you, he went to your beside and prayed.
We thought we were going to lose you.
Jill and I stayed in the visitors’ room for a few nights, so we could be close to you. The nurses kept you stable.
You developed Pneumonia. You were put on antibiotics. You were also on dialysis.
They tried to remove the breathing tube on the Sunday, but you couldn’t cope without it. They were weaning you off the sedatives that kept you asleep. We had bought up your microphone and headset, which you could hear through sometimes, to see if that would bring you round. I said your name and you opened your eyes.
You woke up on Mother’s Day, that was the best present any mother could have wished for. You knew we were there.”
I woke up to realise I was in hospital; I had no recollection of what had happened since I fell asleep on the Sunday before…
Forgive me, if this post seems to be all over the place. During this time, I was heavily sedated, and I couldn’t tell the difference between what was real or not. Some parts I do remember but some I also remember hallucinating.
I remember waking up briefly, on the Tuesday after I was admitted to hospital, because I recall watching Mum write in a Shopkins birthday card for my niece. I’m sure it wasn’t a dream. Then I realised I was lying in a hospital bed and I started to panic. I don’t remember what happened after that.
I started to panic again, and Mum tried to calm me down as my heart rate was going up and up, which then caused me to struggle even more to breathe. I really tried to calm down but I didn’t have any idea as to what was happening.
When I get really scared, I always tell Mum that I love her. After I said, “I love you”, she said it back. And she has never said it back to me before, so that’s when I knew something really bad had happened but I just didn’t know what.
Possible hallucination – I remember shouting, “I need a drink!”, several times but nurses kept walking past me and ignoring me. I also shouted, “I haven’t had a drink for 15 hours!”, I have no idea where I got 15 hours from so that’s why I think this was a hallucination.
I told Mum, the next day, that nobody had given me a drink for 15 hours, and she replied, “You’re on an IV to get fluids into you”. That’s when I tried to lift my head up and saw the IV. It still didn’t register with me.
The nurses kept trying to get me to cough but I just couldn’t. So, they gave me this big tablet, I think, and I had to swallow it. It caused me to cough and once I started, I couldn’t stop.
Late at night, 2 nurses took me into a small room. I remember screaming and trying to lash out because, to me, it looked like one of the nurses was trying to suffocate me. Plus, they were putting cannula’s in everywhere.
When I next saw Mum, I was really upset and she asked me what was wrong. I told her what happened the night before and, at first, she was genuinely quite concerned, and then she went to go and speak to a nurse. A little while later, she came back and told me, “They weren’t suffocating you, they held up a sheet up in front of you to stop you from getting frightened because of all the wires and tubes that were attached”.
It made a lot of sense.
When I woke up from the coma, from what I assumed was just a nap, I felt very unaware of my surroundings. The first person I saw was the relative who had taken me to my first ENT appointment – I initially thought, “What the hell are you doing here?”, because the last thing I knew was that they hated me. Also, it was how I knew I was still ‘me’.
Then I saw Jill, then Mum. Then my other sister and Ewan came to see me.
I quickly realised that I couldn’t speak, or when I tried, it would sound very distorted. I went to touch my mouth, very shakily, and felt this big chunky object which was keeping my mouth open. I tried to bite my teeth together and felt something plastic. My eyes widened in horror and Mum stood by my beside and said, “It’s helping you breathe; I know it looks scary but you’ve got to try and stay calm”.
I looked at her and thought, “What?!”. That’s when I also discovered how many machines I had around me. I tried to touch my nose, as it felt like there was something stuck, and felt a tube coming out. I thought, “Please, please, I hope that isn’t going where I think it’s going!”.
I didn’t know what day it was but I always kept asking what the time was. I think that’s where my obsession with time started.
Trying to communicate with strangers was daunting. I couldn’t speak, nor hear, and my vision was terrible. Nurses tried to use my headset and microphone, but I couldn’t understand what they were saying. They tried to get me to communicate by pointing at letters, to spell out words I was trying to say, but my coordination was atrocious and combined with my vision loss, I couldn’t see to point at the letters.
The last resort was for me to try and write on my whiteboard, I really struggled to grip the pen. I went to write but I couldn’t control my hand. Tears began to fill my eyes, “why can’t I write anymore?”
Memories of when I had taken calligraphy lessons in school came into my mind, and the tears just flowed.
I can’t put it into words how it felt to not be able to communicate with anyone.
I still didn’t know what was wrong, but I could sense that whatever this was, it was trying to kill me.
Very early hours one morning, I was woken up by nurses, and saw paramedics around me. I thought something bad had happened. I was moved onto a stretcher by a transfer board and all of my things were either put by the sides of me or near my feet. I had no idea where I was going.
I was wheeled out of a set of automatic doors and the cold air instantly hit me. I was taken into an ambulance and a lady sat near me. It felt like a really long journey and I remember coughing a lot and nodding off.
When I woke up, I assumed I was in another hospital, but there were no signs to say which hospital, well, not large enough for me to be able to read them. The corridors were endless, I started to think I had died because it seemed like I was going nowhere.
I was wheeled into a small room, which had about 3 or 4 bays side by side. I was transferred from the stretcher to a hospital bed, again by a transfer board, and then everybody left me. I was in the bay next to the window.
Nurses came by, later on, and was changing the cannula’s and putting new ones in, and God knows what else.
“Nobody will know I’m here, I’m never going to see anyone ever again” I cried. Dying alone really dawned on me and I’ve never been more scared in my life.
I was pleasantly surprised to wake up and see daylight shining through the blinds. A man came and stood by the side of me, he tried speaking to me via my headset and microphone, but he was speaking so fast that I had no idea what he was saying. Despite feeling groggy, I just kept slowly nodding and shaking my head while he was talking to me. I don’t know what I agreed to but I did understand one word.
While he was still talking to me, I thought, “Where have I heard Addenbrooke’s before? I know it’s a hospital and its somewhere in England. So, I am definitely still in the same country.”
Once he left, I thought, “Well, I don’t know who he was, or what he said but at least I know where I am now! But will everyone still not know where I am?”
A nurse came by, not long after, carrying some towels. She bought some shampoo with her too, and helped me to understand that I was going to be washed, and my hair too. She was very gentle and, despite everything that was happening to me, she made me feel really comfortable which helped to reassure me. Then after she cleaned everything up and changed my sheets, she left.
Some time went by before 2 women came in to see me. One of which wrote on my whiteboard, “We are physio’s and we want to try and put a small tube up your nose”. Despite the fact I still had a breathing tube in, I thought, “Well how are you going to do that with everything else that’s either on me or in me! But they know what they’re doing so let them get on with it”.
That’s until they started to put a tube/pipe up through my nose, I’m going to call them pipe cleaners because at the time, I didn’t know what they were, and kept pushing for it to go up further. “What on earth are they doing?! Am I really awake for this?” I winced as it caused a lot of discomfort. After several attempts, and so much more wincing, they stopped. Thank God!
They then started trying to clear my chest by this weird manoeuvre, it was really bizarre!
Anyway, that wiped me out and I fell asleep soon after they left.
Throughout the day, more people were coming in and out, and I still had no idea what was happening.
I was staring out of the window, when I saw two people walk closer to me. It was Mum and Jill.
They could tell I was surprised to see them, and I bloody well was! “How on earth did they know I was here?” I mumbled, and after many attempts, Mum understood what I was trying to say. “You got here alright then?” she asked. I just shrugged because it felt like I was on a magical mystery tour. I think it’s clear that I was still sedated. “They phoned me this morning to tell me you got here”, Mum added. I kind of forgot at the time that we were in the day and age where technology is used.
Like I said, I was sedated.
I was so relieved to see them! Jill kept trying to make me smile by writing random things on my whiteboard. She has a tendency to come out with random crap a lot of the time.
As daylight faded, doctors were standing around me. A male nurse sat beside me watching the monitors. I didn’t know what was happening. Mum and Jill went out of view, and because they didn’t tell me where they were going, I started to panic. I tried to look at the monitors that the nurse was staring at, I figured they were all my STATS.
A man came in with this heavy object and placed it near my feet. After attaching wires and stickers to me, the machine started to light up. It was a heart monitor. I realised that, from nurses and doctors watching the monitors, for which it felt like forever, this wasn’t good.
I asked the nurse if he knew where Mum and Jill were, if the inevitable was going to happen, then I really didn’t want to be on my own.
I could feel my heart break, I needed Ewan and he wasn’t there.
I remember being moved to a bigger ward, it seemed more busier too. It was getting really late at night and a nurse moved a recliner alongside me. They let Mum stay because nobody knew if I was going to make it through the night. She held my hand and I never wanted her to let go.
I kept waking up throughout the night to check if Mum was still next to me holding my hand. Despite everything, I felt safe knowing Mum was holding my hand.
At one point, I woke up to see a nurse talking to Mum. She then wrote on my whiteboard, “You’re being moved to another ward”. I nodded and watched on as the nurse and Mum got everything ready to be moved.
The corridors were really dim at night, but enough light for people to see where they were going. I remember squinting as we entered the lifts, the ceiling lights were so bright.
We arrived in a small square-shaped room and Mum started unpacking my things.
The nurse, who took us there, was talking to Mum for a few minutes, then she started to write on my whiteboard. “They’ve found a room for me to stay in, I will still be nearby”.
I didn’t see Mum for hours after she left, then again it could have been minutes as it felt like time was going so slow.
I remember wearing an oxygen mask, and it was really overwhelming, especially with also having a breathing tube in. When the oxygen mask was taken off, the nurse tried putting a tube up my nose again, and still it was really uncomfortable. She stopped trying after a few attempts.
I know I kept nodding off, I just couldn’t fight the tiredness.
I woke up and was instantly emotional. I knew it was March but I didn’t know the date, I frantically tried working out what day it was, in my head, but I was becoming more stressed out. I was worried that I’d missed Ewan’s birthday. While sobbing, I kept shouting, “I’m sorry!”
I was so relieved when I saw Ewan walk up to my bed, but he was wearing the t-shirt I had got him for his birthday, so that answered my question. I had missed his birthday. The realisation made me cry even more and I kept telling him that I was sorry and that I had let him down. He tried his best to reassure me that it was OK, but I still felt guilty.
Mum arrived shortly after and when she saw me, she started crying. I think it bought back memories of her step-dad (my step-grandad) as he had also had Ataxia, but he died from Pneumonia. Then seeing me in the exact same situation, I guess she thought the same would happen to me. I can’t begin to imagine what it must have been like seeing me like that.
It’s true when people say you don’t know what is around the next corner.
Suddenly, a group of nurses and a short thin woman came up to me. I remember the woman clearly as her glasses were almost bigger than her face. She was actually quite scary looking!
A machine was bought into the room, it looked like a huge robot arm. I thought, “I hope that don’t come anywhere near me, I don’t even want to think what it does!”
And it bloody well was being wheeled over to me.
Eventually, I realised it was a portable X-Ray scanner. I thought, “That’s a clever contraption!”. Once the X-Ray was done, everybody crowded around me again. I looked at Ewan, scared, not knowing what they were going to do. He tried to be strong for me and smiled gently.
The scary looking woman put a new oxygen mask over me. This one seemed more powerful and overwhelming than the last. I was becoming more and more sleepy with each breath I took.
Then it all went black.
I don’t know where I was when I woke up, but it seemed like somebody had put a filter over my vision (what’s left of it) and everything was grey. I remember seeing a bunch of people, I assumed they were nurses, standing around a bed. It’s bizarre to explain, I remember what I was thinking, and it felt real but it didn’t at the same time. It’s clear now, I was very heavily sedated. Bear in mind, I had the breathing tube, IV’s, wires, tubes, machines, NG tube, etc. and I thought to myself, “Do you know what? I feel bloody fantastic!”
As soon as I had said it, I was asleep again.
There was a water fountain, next to the double doors, just in front of my bay and all I wished for was to have a drink. At the time, I was jealous and hated watching people get a drink from there. I was in a bay which was alongside a wall, I was allowed to have photos put on it. Photos of my Guinea pigs, my dogs, nieces and nephews, I could never look at them without crying because I didn’t know if I would ever see them again.
I remember being more unsettled at night, I think the loneliness hit me hard. I got so frustrated one night, that I was violently shaking the bed guard. I wanted to go home; I still didn’t understand clearly all that happened. Why did I have no energy? Why couldn’t I sit up by myself?
Loneliness, and being in a unfamiliar place, with nobody I knew, was beyond horrible.
I was surprised when my best friend, India, came to see me. I had no idea that she knew I was in hospital. She gave me a really big cuddle and all I could do was put my head against her, I didn’t have the strength to lift up my arm and hug her.
India wrote funny things on my whiteboard which made me smile. It was the same day I met my Speech and Language Therapist, Nicki, she was very bubbly. She showed me how to communicate via a tablet, I had to point to words and pictures to practice communicating with it. My brain understood what to do, but my body didn’t, if that makes sense?
Nicki left after she knew I got the gist of how to use the tablet. Mum arrived shortly after. All of a sudden, I wanted to go to the sea life centre, God knows where that came from. Trying to demonstrate by acting like a fish was interesting. I tried saying ‘Sea’ but neither Mum or India could understand me. Until later on, it clicked and they figured out what I was saying.
Still need to go to a Sea Life centre with India…
During the time I was heavily sedated, I had a tendency to wave to anyone and everyone. Along with shouting (well, trying), “NOOT NOOT”. Just imagine a royal Pingu… I’m never going to live that down.
Early one morning, I woke up and realised nurses were cleaning and changing me, and I became really confused as I couldn’t remember the last time I’d been to the toilet. Before I started to wonder if I was no longer able to tell when I “went”, excruciating pain took over my entire body.
My pain threshold, at the time, was extremely sensitive and anything that touched me, I would end up screaming and crying. Not going to lie, I lost all my dignity when nurses had to clean me but I knew I couldn’t help it. I did have a catheter in, which still made me feel like I had wet myself most of the time. But poo-ing myself, that took a long time to get used to. Especially when people came to see me, it was embarrassing.
But like I said, I couldn’t help it.
I can’t remember who arranged it but it was arranged that a dog would visit me, I don’t know the correct name for them but they come in to try and cheer up patients. Anyway, I wasn’t expecting the dog to be HUGE! He was incredibly soft and gentle, and seeing him did cheer me up.
I remember this photo being taken, although I couldn’t see myself clearly when they originally showed me. Seeing it now, it still leaves me speechless as to how far I’ve come.
It was frightening to wake up at one point and see a lot of people crowd around my bed, they were wearing green scrubs and had surgical hats on. I didn’t know I was going to have an operation; a young nurse held my hand because she could see I was scared and confused. She explained that I would be very sleepy while they performed a biopsy on my thigh. I didn’t know her name but I asked her if she would still be there when I woke up. She said she would be.
But she wasn’t, none of them were. Rude!
When Ewan came to visit me one time, the nurses adjusted my bed so I was able to sit up, I cried because I could see the floor. It’s the little things in life.
Another dog came to visit me, I can’t remember if the dog was a girl or boy. It wasn’t as big as the first one because I remember it lying next to me on my bed.
I kept wondering how the nurses were administrating all of my medication, I know they kept standing alongside where my head was, I thought they just put it via my IV. At one point, my neck was quite itchy, but because of my poor coordination, I didn’t know where my hand was so I couldn’t itch it. It was making me very agitated and I tried to demonstrate scratching and pointing to my neck. Thankfully they understood what I meant.
That’s when I found out I had a cannula in my neck… still makes me shudder. My eyes have never gone wider in horror and surprise!
I shouldn’t have said (well, demonstrated) that my neck was itchy because they then decided to take the cannula out and put an A-line in my left arm instead! I don’t mind needles as long as the procedure is quick, but when it takes a while… yeah, no thanks!
I was really hopeful one night, as the nurses were going to try and remove the breathing tube. Yay! They had to check my throat first to see if there was any swelling or irritation, if there was then they wouldn’t take it out.
My throat showed slight inflammation. I was gutted, I really thought it was a huge step forward.
I had my first physio session with a lovely lady, I can’t remember her name, she helped me to do some very small, but effective now I look back at it, bed exercises. I think it was in the next session, a few days later, she got me into a chair (with assistance). It was like watching Transformers, well a slower version, but they took this recliner apart so they could transfer me via a transfer board. I was laying down at all times until I was safely in the recliner and they put it all back together, then they tilted the back rest at an angle I felt comfortable with.
I was impressed! Mind you, it doesn’t take a lot to impress me!
Progress was slow but I was showing signs of improvement! Plus, I was no longer heavily sedated. No more crazy antics!
Day by day, everyone was becoming more hopeful, I was still scared, especially with knowing how close to dying I was.
A tracheostomy was mentioned quite a lot at this point, and when it was explained to me, I was against it.
I was petrified of having a hole in my throat.
The more the tracheostomy was mentioned, the more I was getting freaked out about it.
But I wanted to get better.
It had taken me a couple of days to agree to go ahead with it. My physio was trying her hardest to reassure me by saying how much she loved tracheostomies! Alright love, I think that’s going a bit overboard!
The morning of the tracheostomy procedure arrived; I was petrified. I was moved to a different bay and the nurses started to get me ready to go down to theatre. Ewan and India were there with me and they held my hands to comfort me. Then my physio came to see me while the general anaesthetic was being administrated. Ewan told her about my love of superheroes and she started talking about Marvel, but I fell asleep. Not because she bored me but because of the anaesthetic taking effect. That was the last time I ever saw her.
I woke up to find Ewan and India still holding my hands, but this time I didn’t have a breathing tube in. It felt really bizarre to be able to close my mouth. It felt odd not having this big, chunky thing in my mouth – get your mind out of the gutter!
I went to speak, but Ewan told me to rest, I wasn’t able to speak just yet. By this point, I hadn’t spoken for about 2 weeks. Safe to say, I put my voice to good use now, I don’t shut up! I was able to mouth what I wanted to say, but whoever I was speaking to would have to be very close as my voice was a quiet whisper. Ewan said the operation went well and there were no problems.
Apart from my NG tube, there was nothing else in or on my face, just the rest of my body to go!
I was still sleepy from the anaesthetic throughout the rest of the afternoon and evening. Later that night, I was moved to a different bay, which was opposite the original bay I first stayed in. As I’d slept through the majority of the day, I was awake most of the night and during this time, I became really anxious about the tracheostomy.
The tube was connected to a ventilator, quite a few of them if I remember. What I didn’t realise was that the tube could easily detach from the opening of my tracheostomy. I didn’t think it was possible to reach this new level of fear. The first time it happened was when I finally started to fall asleep and the tube disconnected, I instantly panicked thinking, “what’s going to happen now?” or “Am I going to stop breathing?”
The nurse came rushing over and quickly reconnected the tube, and then held my hand to calm me down. She then wrote on my whiteboard, “I know that was scary but it is normal for that to happen”. That did reassure me enough to prevent any further panicking.
That was scary.
The next day, I was moved into a side room. I preferred having my own room but at the same time, I hated being on my own. That night was rough, I kept coughing a lot and gagging when they had to clear the tracheostomy tube when it was blocked. The process of it isn’t nice at all, but it’s a lot more comfortable than having the breathing tube in.
Ewan came to see me and I was very teary, I really missed being at home with him. All he could say was, “You’ve got to get a bit stronger first”. To try and cheer me up, he painted my toenails while I nodded off. I think they were purple.
A nurse encouraged me to try and drink some water, I’d forgotten what having a drink was like. I was only allowed some via a syringe to begin with, due to prevent any choking. It was so nice to be able to finally have a drink, but one syringe-full was enough. I’m still not overly happy about what happened later that day, when my mum came to see me. The nurse kept telling me to show Mum that I could take some fluid orally, but I really didn’t feel like having any. I kept shaking my head to get the message across that I didn’t want any.
But the nurse wasn’t having any of it, and put the syringe in my mouth, I didn’t have the strength to keep trying to get my point across. I reluctantly swallowed the water and waved my hand to say ‘No more!’ but she continued with 2 more syringes. Not long after, I threw up. No surprise. Thankfully, that was the last time she looked after me.
A couple of days later, Mum and Jill came to see me. I was feeling really low and anxious that day. A nurse administrated some medication that would, hopefully, calm me down. Within seconds, I suddenly started to feel like I was vibrating, which terrified me. I quickly tried to get it across to everyone that I really didn’t feel right.
But then it was too late.
I opened my eyes and realised Mum and Jill were no longer in my room. I looked at the nurse and mouthed, “what happened?” She replied, “We think you had a reaction to the medication”. I just stared at her, bewildered. I mouthed, “Where’s Mum and Jill?”, the nurse replied, “Outside, do you want me to go and get them?” I nodded.
Seconds later, they came back into the room. Mum had been crying, which worried me. Again, I mouthed, “What happened?” Mum replied, “Your eyes rolled back and your arms were flailing, like a small seizure”. I started to cry and Mum gave me a hug.
Throughout the next several days, whenever I nodded off and suddenly woke up, I would panic and then the nurse would rush over, I try and ask if I’m OK, the nurse would then reassure me. It was a long, continuous cyccle. I was too scared to go to sleep, and very anxious if I suddenly woke up. Even with visitors, I would need reassurance. I was beyond petrified of having another seizure, and even to this day I am still scared.
Despite the very disrupted sleep pattern, I continued to make small improvements. Ewan came to see me, while he was there, I was transferred into the recliner. I really wanted to try and drink, but I was still skeptical after the last time. I was offered a syringe of lemon squash, I had never tried it before but as soon as I finished the first syringe, I wanted more! I’ll never forget the first taste of lemon squash; it was like having a drink for the first time.
I could not get enough of it, I ended up having nearly 3 syringes, thankfully I didn’t throw it up!
Although I was making small improvements, I was still coughing and was constantly hot. I needed the fan on non-stop, if someone turned it off then I would tell them to put it back on. Manners went out the window when I was drenched in sweat. Even if I nodded off, I could sense if someone had turned the fan off, so I would instantly wake up and point at the fan so the nurse would put it back on. Demanding even when I can’t speak.
I still had no idea I had double pneumonia, with all the coughing I just assumed it was a bad chest infection.
I was moved to a smaller ward with 3 bays and a side room. It seemed to be more quiet, ironic considering I have hearing difficulties, but you get my drift. I thought I would prefer less people about, but it made time drag on even more.
The next day, I had physio. This was the first session where I tried to sit up, with 3 physio assistants. This was also the first session where I realised, I couldn’t sit up by myself without a lot of support. I had no control or sense of balance whatsoever. I only managed a few seconds before I really struggled to breathe and felt very dizzy. They helped me to lay back on the bed and then manoeuvre me using the sheets.
Later on, that day, I was moved to the ward below, it was the exact same layout as the one I had just came from, which confused me. Then again, it doesn’t take a lot to confuse me.
By this point, I was no longer on any sedatives so I was very aware of myself and my surroundings. The first night on this ward seemed to be OK, I think physio had completely wiped me out so I did have a long sleep. I kept waking up during the night but I wasn’t overly distressed.
After being washed in the morning, the nurse wrote on my whiteboard, “As you’ve been improving, we want to try and wean you off the ventilator. If you become too tired and find it difficult, then we will put the ventilator back on”.
I didn’t feel ready, I’d been dependent on a breathing tube, oxygen masks, and ventilators for what seemed like forever, but it was actually 3 weeks. I admit, I felt more aware of things but I still felt very unwell. I was very hesitant but if they had been closely monitoring me and I’d been improving, then maybe I was getting better. I trusted them so I agreed.
The first time, I lasted 2 hours without the ventilators. Boy, did I know about it! I thought I couldn’t get any hotter than before, but damn! I was coughing so often that I lost count how many times they had to clear my tracheostomy tube. This was also when I started to realise how ill I had been, the number of times they had to clear my tube, which basically collected all the crap from my chest.
That really shocked me, and still does.
Tests for Mitochondrial Disease were ongoing, Mum had to have a blood test which would show, if anything, that I could have inherited. I just had to wait for someone else to be tested.
With being constantly hot and sweaty, I hated how my hair felt and looked. One afternoon, a nurse washed my hair and I genuinely felt like I was being pampered! Head massage and a thorough wash, it was lovely. I ended up falling asleep because the head massage was so nice. I could really do with another massage, especially my neck and shoulders.
Mum came to see me but I could tell she wasn’t feeling well, she was more tired than usual, and kept nodding off. I’d been struggling with being off the ventilator that day and I thought I was going downhill again. I was convinced I was dying again. The anxiety of it all made me really tired so I fell asleep not long before Mum had to leave. I panicked when I woke up later that night, realising Mum had gone and I didn’t get to say bye to her.
I was very upset and the nurse spent ages reassuring me that Mum did give me a hug before she left. After how I had been that day, and feeling really anxious, I convinced myself that I would never see Mum again.
The next day seemed to drag, I wondered where Mum was as it was nearly 6 in the evening. “Maybe she’s had enough of seeing me’, I thought, I felt really low again and had quite a lot of horrible thoughts in my head. It was hard not being able to talk, about how I felt, purely because I was still recovering and could not speak.
When a nurse came over to me, I mouthed, “Where’s Mum?” The nurse took a while to write on my whiteboard, “Your Mum isn’t able to come and see you today as she’s not very well, but she sends her love”. I was devastated. I wanted to be at home to help her, but I was also selfish and wanted her to be with me. Yes, I’m a mummy’s girl. It was my first night without any visitors and it scared me.
The next day, Mum had already phoned, before I woke up, to say that she wouldn’t be able to come and see me, but her friend had arranged for another support dog to come and visit me.
I managed 6 hours without the ventilator that day!
I met Merlin, the Labradoodle, in the afternoon. He was very soft and friendly. He even licked my nose, bless him!
Meeting Merlin did cheer me up for a while, but the man, who visited me during my first morning at Addenbrooke’s, the one who I didn’t have a clue as to what he was saying, came over to me with a group of people. He wrote on my whiteboard, “These are my students, do you mind if we examine you?” At this point, I just wanted all the examinations to stop. In the space of a few weeks, hundreds of different people had seen me, cleaned me, washed me, examined me. For someone who doesn’t like to be touched, I’d just had enough.
‘But how would that make me look if I refused a simple examination?’
I nodded and thankfully, it wasn’t invasive. It was a standard test where they bang that circle thing against your wrists, elbows and heels. Plus, the sharp end they run across the soles of your feet, they’re lucky they didn’t get a kick in the face because my pain threshold was still oversensitive!
After they left, I got very emotional. Nothing had been explained to me, I still didn’t know how I ended up in hospital. I still assumed I had a ‘bad chest infection’. It all just got to me and I wanted answers. It took me a long time to get the nurse to understand what I was saying, but she arranged for someone to come and see me to give me some answers.
Finally, hopefully within the next few days, I would know the truth.
Mums’ friend, the one who arranged for Merlin to come and see me, visited me and stayed with me for a while. She was the closest thing I could get to having Mum there with me, and I’m grateful for her visit. She was writing on my whiteboard, telling me of her recent trip, with her son, to China (I think it was China). I remember Las Vegas and riding in a helicopter being mentioned, I can’t remember how they got into the conversation.
Her hugs were what I needed. They were comforting and reassuring, and they meant so much to me.
The next day, I was transferred into the recliner, and this was the first time I used a hoist. It felt really weird to be swinging there (not like on a swing at a park). I don’t like being off the ground anyway, so it was a bit nerve-wracking!
From where I had been lying in bed for weeks, even though I was supported with lots of pillows, sitting in the recliner made me very sore. I could only manage about 15 minutes before I started crying and wincing in pain. Before they tried to transfer me back into bed, a group of people approached me. A tall man knelt down in front of me and began writing on my whiteboard, “I have been asked to see you, to explain about Mitochondrial” I nodded, then mouthed (several times), “All I’ve been told is that its genetic”. The bloke nodded.
With everything that had happened throughout the past year, I felt like my time was limited and if Mitochondrial was the cause of it all, and with how quickly my health deteriorated, I assumed it was just going to get worse and worse.
“Am I dying?”, I mouthed. I started crying, dreading his answer. “No”, he reassured me, shaking his head.
As much as I wanted to know more, at that moment I only had one question to ask, and it was answered. I just needed reassurance.
The following morning, when it was handover, I met Will. He was absolutely beautiful, not that I liked him in that way, but you know when some men are just beautiful. He was. Anyway, he was an incredible guy and one of the best nurses that had looked after me.
I had done really well with being off the ventilator, I can’t remember how many hours I had managed but it was steadily improving.
That night, Ewan stayed a bit later after visiting hours. That was the night the nurse had to change my NG tube. I wasn’t awake when they put the first one in, so I had no idea what it felt like. I think the nurse’s name was Dan, he was lovely. When Ewan explained to me that Dan had to change the tube, I just laid there shaking my head. Nope. Not having it.
But I had to.
To my surprise, when the NG tube was removed, it wasn’t painful, it felt satisfyingly weird! But then the dreaded moment came when Dan tried to put the new one in. He explained to Ewan what I needed to do, then Ewan repeated to me, “When Dan puts the tube up your nose, he will tell you to swallow so the tube can go down into your stomach”. Mental images did not help at this moment but thanks to my brain, they sure appeared in my head!
The first attempt, I struggled to allow the tube to make its way up through my nose, more like my brain was telling it to go back where it came from, it wasn’t exactly painful, it was really uncomfortable.
The second attempt, the same again. Third time lucky and I was brave! It finally went in, hooray.
I hope I never have to relive that again.
Jill came to visit me at the weekend, she always knows how to make me smile. She loved writing on my whiteboard, what made me laugh (well, silently) is that when she writes, you can see in her expression what she is writing, if she’s happy about something then she will smile or laugh while writing, or if she’s annoyed or being sarcastic then she writes really fast. Anybody who knows her will know what I mean.
There was this male nurse, and he just sat on the reception desk not doing anything. Anyway, the nurse who was looking after me asked if I wanted to be transferred into the recliner. I nodded, as I wanted to show Jill because all she had seen of me in the last few weeks was me lying in bed. I was safely transferred into the recliner, all for about five minutes as I became really sore and it was more painful than the last time. Back up in the hoist I went.
The male nurse, who was sitting on the desk, had control of the hoist, and the idiot looked elsewhere while I was being lowered back into bed which meant he didn’t stop the hoist from lowering further, which as a result, squashed my hand! I couldn’t scream as nobody would hear me. Thankfully the other nurse who was assisting noticed before it could completely crush my hand. That left a bloody bruise though.
I kept giving him the evils when he walked near me. I was not happy. Thankfully he left not long after.
Jill left a few times to get some fresh air. But the second time she came back in, there was something different, not about her but about me.
While she went out, a nurse came over and wrote on my whiteboard, “Shall we try you with a speaking valve?” I looked rather, hesitant. She knew what I meant from the expression on my face. “Don’t worry, it doesn’t hurt, it’s the same as changing your tracheostomy tube but with the speaking valve, you can try to speak, but you might cough a lot” she wrote down, reassuring me. I nodded.
The nurse was right, as soon as she connected the speaking valve, I couldn’t stop coughing. I really tried my hardest to stop myself from coughing so I could surprise Jill when she returned. But I was still coughing by the time she got back, thankfully she didn’t notice any different. As she sat down, she started looking in her bag.
“Hello” I said, very husky, huskier than Rod Stewart.
Jill looked at me in surprise and put her hands up as if to say, “What the??” I tried to reply with “They let me try the speaking valve” but I couldn’t manage all them words without choking. The nurse quickly rushed over and changed the valve back to the tube that was helping me breathe.
Talking, well saying a few words, really wore me out! Some random nurse came over to Jill and asked if I was Jill’s Mum! Cheeky sod! Bear in mind Jill is 7 years older than me – I thought, “Bloody hell, have I aged that much being stuck in here?!” Jill told me what was said, after laughing so much. Well, revenge is sweet, the nurse came back and asked if Jill was my Mum! Ha!
I hope that nurse doesn’t create family trees as a side job!
In the 6 hours that Jill had spent with me, she went through 3 whiteboard pens! 3!!
Ewan came to see me on the Sunday. I cried when he came to visit, I just yearned to be at home with him. He sat beside my bed and held my hand. He hadn’t heard me speak since the day before I was admitted to hospital, he must have enjoyed the peace and quiet. I was hoping, at some point during his visit, that I could try and speak to him. So, I was relieved the nurse came over to ask if I wanted to try and speak to Ewan.
I’m not going to lie, while the nurse was changing my tube to the speaking valve, I had butterflies. I knew what I wanted to say.
Within seconds of the valve being connected, I was coughing. Once it had calmed down, I turned to Ewan, and said,
“I love you”
He put his hand over his mouth in shock and closed his eyes, blinking back tears. The nurse bought over some tissues and I just laid there in disbelief. I never thought he would cry because of hearing my voice. This was a turning point for me, it made me realise what the odds were against me, how ill I was, but most importantly, it reminded me that Ewan still loved me and still thinks a lot of me if hearing my voice made him emotional.
Finally, he said, “I love you too”. I still remember that moment like it was yesterday and it’s definitely one I’m not going to forget in a hurry.
A few hours later, Ewan found my iPad – I couldn’t believe I’d had it with me this whole time! Nearly 3 weeks without it, blimey that’s a world record for me! Anyway, he turned it on and tried to see if there was any WiFi, thankfully there was! He did ask if it was OK to use my iPad while in ICU and it was fine.
Ewan held the iPad as I didn’t have the strength to hold it, I really struggled to type even with one finger. This was going to be a long recovery, learning to write again, type, sit up, stand up or walk, it all overwhelmed me but I tried my best to fight back the tears. I tapped on my emails, in my 3 weeks of unforeseen absence, I had accumulated over 600 emails. Wow.
I dreaded to think how long this would take me to go through them all.
Even though I was still coughing a lot, I was slowly getting better, I was weaned off the ventilator more gradually.
There was hope.
Ewan came to visit me again on Monday, Mum was slowly getting better but still unable to see me. I already had the speaking valve connected before he arrived. After we had a long hug, I asked if we could FaceTime anyone, I wanted to try and speak while the coughing was minimal.
First, we spoke to Mum, my Nan was also with her. They were shocked when they heard my voice and cried. Secondly, we spoke to Ewan’s Aunt, I remember crying when she appeared on the screen – I will refer to Ewan’s Aunt as Auntie J – ever since I met Auntie J, we’ve had a close relationship and she’s an amazing woman. She helped me through some of the darkest of times. I managed to say “Hello” but Ewan spoke throughout the rest of the video call as I couldn’t stop crying. I can’t remember who else we called.
I had a little nap not long after we finished speaking to everyone. I felt really overwhelmed with how tired I was from just saying a few words. I woke up an hour or so later to realise that Ewan had gone, but it turned out he just popped outside. Another nurse had appeared during my nap, not sure why I ended up with 2 nurses.
The male nurse began writing on my whiteboard, I was looking at Ewan thinking, “Oh God, what now?” When the nurse turned my whiteboard around, so that I could read it, I was taken aback and tears filled my eyes as I finished reading what he had written.
“Do you want to go outside?”
I really couldn’t believe it, the thought of being able to go outside, to see different surroundings, to feel the cold air, it made my heart fill with so much joy. It’s the little things we take for granted, my head was telling me this would be the last time that I would get to go outside, but it was my heart that was saying, “No, this is a new beginning”.
Ewan held my hand as I gathered my thoughts, and truth be told, I was excited and I didn’t need to be asked twice. I nodded, as my speaking valve had been disconnected before I had a nap earlier, and the nurses rallied round to get everything prepared, I was wrapped up in a blanket, had 2 small oxygen tanks beside me on my bed, a portable monitor that was placed by my side. Once all set, we headed down corridors, and lifts, until we approached a door.
I’d never been to Addenbrooke’s before, this was all new to me. The female nurse opened the door, and the male nurse pushed my bed outside. We were in the middle of a small garden with a few benches, lots of greenery too. The garden was empty, it was just the four of us. The nurses moved my bed into the centre of the garden, put the brakes on and then walked around.
Ewan leaned on the bed rails to be closer to me. He looked at me, and I to him. His eyes were the most beautiful colour of blue, he leaned close enough so I could see all of his facial features. These little moments felt like we were back on the bench, 5 years ago (now nearly 8), where we shared our first kiss. It felt like the world around us had stopped and it was just the two of us.
I may have been slowly getting better, but looking at all the equipment, and the tubes, it bought me back to the reality of how close I was, to losing everything. But this moment, with Ewan, right here, if this would have been my last then I would be happy.
Our gaze was averted as the male nurse approached my bed; he had picked a few flowers from the garden. I think they were purple. He handed them to me, I looked up at him and smiled, and mouthed “Thank you”. I had lost the use of my grip and I found it difficult to hold the stems, but I really tried.
I didn’t realise my iPad was on my bed, I thought it was left inside. I turned to Ewan and mouthed, “Can we get a photo, please?” he smiled and asked one of the nurses if they could take a photo.
Once the photo was taken, the iPad was placed back on my bed, I wanted to wait until we got inside to see the photo. I looked up at the buildings around me, only to find out 10 months later that this was only a small part of Addenbrooke’s, it was huge! and despite all that had happened in the last few weeks, all the scary stuff and not knowing if I’d make it, I made a promise to myself that things would change.
I would make things happen from now on.
I started to believe I was a survivor, a fighter. This was just the beginning of showing everyone how strong I was, what I’m capable of.
I was taken back to the ward, checked over to see if I had to be cleaned and then I could rest. Ewan stayed with me for a few more hours and then it was time for him to go home. Despite an emotional start to his visit, it had been a nice day and I continued to make progress with being weaned off the ventilator. Plus, taking in the fresh air for the first time in a few weeks was beautiful.
India came to visit me on the Tuesday, she’s the best friend I could ever ask for. This was her third visit, I was able to use the speaking valve throughout her visit, even though I spent most of it coughing. I’m not sure if she noticed, but whenever I coughed, I farted. I couldn’t help it; I blame it on all the medication I was on. It was embarrassing but funny at the same time. India kept telling me to sleep if I needed to, which I’m glad because she kept making me laugh and it was tiring me out! When I woke up, she was still by my side, I really appreciated that.
On Wednesday, I realised this had been the longest that I had not seen Mum for, it felt strange and it upset me. Like I’ve said before, I’m a mummy’s girl.
A familiar nurse came and stood by my bed; it was Will! He was looking after me again. Despite a few tears beforehand, the day started off well. I had been off the ventilator for… I lost count how long. Then Will appeared, and a short while later he came over and told me that Mum was able to visit. I was so pleased!
All this joy quickly passed as it made me tired and I soon nodded off. But not for too long, I was awoken by Sam, a neuro-physiotherapist. She was lovely and funny. They wanted to try and get me to sit on the edge of my bed again. Once hoisted and placed in position, there were so many nurses and physios around me, supporting me. I still felt very wobbly, and this was the first session without the ventilator.
I thought it was going well, I was slowly leaning forward to help control my balance but I became panicky, which in affect played havoc with my breathing and had to quickly be connected to the ventilator. The session didn’t last very long at all, but it was a lot more than I could have done a few weeks ago!
Sam said that she would come back later in the day to see if I wanted to sit in the recliner.
Soon after Sam and her team left, Mum arrived! She was looking a lot better too. It was nice to be able to speak to her, even though my voice still sounded like Rod Stewart. After a while, with Mum bringing me up to date with things that had been happening at home, Sam returned. She asked if I felt strong enough to sit in the recliner. I nodded as I really wanted to show Mum.
When I was hoisted into the recliner, I was sitting on a pillow to help take the pressure of my sore, and I had a couple of pillows propped up behind me. I was quite comfy. Everyone was chatting amongst themselves for a few minutes before Sam came back over to me and asked if I would like to go outside in the garden.
I quickly replied, “Yes please!” The sun was shining through the windows which made me excited that I would be able to experience sitting in the sunshine again! Oxygen tanks prepped, everything else that I may have needed was ready to go. I felt like the Queen being pushed, in the recliner, throughout the hospital!
It was early afternoon so there were a lot of people about, but it was refreshing to see. I was pushed towards just in front of the bench. The sun wasn’t directly on me, which was good because the heat quickly caught up with me! Nevertheless, it felt lovely to feel the warmth around me. Mum wanted to take a photo of me.
I started to feel really sore, and I tried my hardest not to let it show because I enjoyed being outside, and taking everything into consideration, I didn’t know how much more I would get to go outside. But I could only endure being uncomfortable for so long, I told everyone that my sore was playing up, and thankfully they swiftly pushed me back onto the ward.
While I was being hoisted back into bed, Will had to dash off to receive a phone call at the desk. He came back over and told us that was King’s Lynn Hospital on the phone, there was a bed available for me!
I was going to be closer to home!
This is the end of the guest serial. Although, most definitely not her recovery.
If your readers would like to ask any questions then I would be happy to answer.
(If you would like to read the ‘reveal’ post to find out who the author is, and how she is doing now, please follow the link. You ill be rewarded with more of her personal story, and some lovely photos too.)