The Week from Hell

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

Continuing on from Was this Going To be My Last Christmas?

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 main 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 it’s 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 all over the place so I kept waking up during the night. At one point, during the night, 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 and 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 hotels 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 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. Joy!

How can someone be ready to have that procedure?! I don’t like needles going in places they don’t need to go…and that’s everywhere!

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 jerky 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.

I had to lay on my back for a while to let it heal. I ended up falling asleep.

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.

Wow.

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.

If you would like to continue reading my story, then please head over to I Knew Something Wasn’t Right.

10 Comments

  1. What an awful week – but I’m so glad you finally got a diagnosis at the end of it. I 100% agree with the blood test thing too! Nurses always seem to be better at it 😂 the lumbar puncture sounds utterly horrific and I don’t blame you for not wanting to relive it. You’ve been through so much and these posts have been amazing at gaining some insight and awareness of your condition. It’s such a powerful story and I have so much respect for you for sharing it with us ❤️ xxx

    Liked by 1 person

  2. It has taken me three days to read this Ami as I cant concentrate for long and didnt want to skip through but to understand every word. So well written and I can empathise with all those tests except the shin one. I did have muscle biopsy on thigh but not shin.
    Also I never stayed in hospital overnight. The London Ataxia centre arranged a hotel overnight so more test could be done next day.. anyway that’s besides the point.
    I do understand the anxiety and nausea which I often experience even now … I find asking people on forums more helpful than doctors.
    Looking forward to reading more in your blog.
    Deafness is not something I have experienced and must be very scary.

    Liked by 1 person

    1. Thank you Patsy, I did not know there is an Ataxia Centre in London, I will have to google them! Being hard of hearing is scary especially when you have nobody near who knows how to communicate with you 💚

      Like

  3. This really does sound like the week from hell for you, Ami. Lots of horrible tests which you went through. You have faced this period of your life with such bravery and have come through it. All credit to you! Thanks for sharing with us. x

    Liked by 1 person

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