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I Nearly Died at the Hands of My Own Doctors

If I could count the number of doctors I have seen, I would be a rich man. My BPD caused me to attach to the doctor I have been seeing and although she made mistake after mistake, she was kind and gentle and genuinely cared about me.

In June last year, I had a shock diagnosis of Parkinson’s disease by a specialist in the field brought on by the years of psychiatric medication I had been on. Life got very tough, very quickly. I started to go downhill quite fast and every time I would see my neurologist, he would increase one of the meds I was on and I would just get worse and worse, to the point where I struggled to walk or drink anything without spilling it everywhere. I also started to fall over; in the months from August to June, I had fallen 34 times, requiring stitches in my head, and was covered in bruises. I and my family all put it down to the Parkinson’s getting worse, which was a huge concern for my future. So I had two doctors in the picture, one prescribing lithium for my mental health and one for my Parkinson’s disease. I was taking around 15 tablets a day at that stage.

Around the beginning of April, I started getting very forgetful and confused about things like what day it was and whether I had been to appointments or not. I also started to hallucinate about people appearing out of the corner of my eye, and when I would turn they would disappear. I told both of my doctors about all these symptoms and they seemed unperturbed.

I also started to lose my eyesight slowly. It became difficult to read anything even with my glasses on. I struggled to read emails and text messages and even went and got stronger glasses, which didn’t help at all. I didn’t understand what was going on, I was so confused and my mind was so jumbled up that everything seemed like some sort of strange dream that I was stuck in. I was forgetting to shower, sometimes for a week at a time, thinking I had had one yesterday and my self-care just went out the window. I continued taking the medication, hoping to god it would help in some way.

I will never forget a day when my sister was at my place and I said to her “Michelle, I am going to fall today, I am 100% certain of it.” My legs were shaking uncontrollably and I had a sick feeling in my stomach, because I knew it was going to happen. We sat at the table and had a cup of tea and I got up to go to the bathroom, I only took about 10 steps and yelled to Michelle as I hit the floor. She raced over to me, but there was nothing she could do. It took what seemed like hours to get me up and onto the sofa. She had her kids at home so needed to go, but she got me everything I needed on the coffee table so I didn’t have to get up. By this stage, I was using a walker, so we put that nearby so I could use it to get to my bedroom.

I sat in silence after she left, completely in shock at what I had become. As the night progressed, I mostly sat in a haze of confusion. I then decided to just go to bed. It was at this point that things became truly awful. I tried and tried to get up to the walker, but the sofa was too low and I didn’t have the strength in my legs to pull myself up. I panicked; I was literally stuck where I was.

I called my sister and told her I couldn’t get off the sofa. I was in so much shock I could barely get the words out. She came over straight away and we tried everything for her to pull me up to the walker but it just didn’t happen. We both didn’t know what to do. She wasn’t strong enough to take my full body weight and it was as if my legs had stopped working entirely. With my head down, I knew there was only one option and that was to crawl on the floor using my upper body strength down and long wooden hallway to my bedroom. I will never forget the look on my sister’s face as she watched me struggle to go a few feet and take a break and then go again and again. I finally made it to my bedroom and with the last breath of energy, pulled myself up onto the bed.

In the coming days and weeks, my mental state deteriorated more and more. I can’t remember, but I was acting like a completely different person. I was saying the most incredible things to my family and friends, simply outlandish stories like my stepfather running away with the Queen while my mum was at the shops. My sister came to the house to find me setting up all the chairs in the house for a press conference I had apparently organized. It just got incredibly out of control. Some of the things I can laugh at now, but it is a strange feeling to know I acted so unhinged.

Soon enough, my parents and sister made the decision to call an ambulance after a couple of days of complete mayhem. I was taken to the hospital and admitted to the emergency department. They immediately rushed blood tests and it came back that I was experiencing Lithium toxicity. My kidneys were almost failing and the combination of the Parkinson’s medication and the critical level of Lithium in my system was the reason for all of this happening. It turned out later that my Lithium levels had been left off all my blood tests and had not been checked for over a year.

The doctor ceased the medication and then made the decision between dialysis or trying first to flush my system. Thankfully, he went for the latter and it slowly started to work. I don’t remember the entire first week in the hospital even though I was conscious and my family visited every day. I was still telling them fanciful stories about the hospital and the special missions I was being given. I finally came to in the second week, wondering what on earth was going on and what had happened.

It has been a long and painful recovery since I left the hospital. The space my delirium was taking up has been replaced with depression and severe anxiety. I can’t help but feel like something bad is going to happen. I also feel so many emotions towards the doctors that were involved in putting me there in the first place and the months of torture I went through beforehand. The neurologist treated me like I meant nothing and just kept increasing the medication even though I was clearly getting worse. My GP failed me in a huge way by prescribing me Lithium but never testing the levels.

I have felt lost for a very long time. I lost myself for months and now I have lost my faith in the very people who I turned to help me. I am grateful for my physical recovery, but it has come at a huge cost. My medication has been changed but I feel empty and hopeless inside. I usually like to end my articles with something positive, but my message to you all is that if something doesn’t feel right with a doctor or a specialist, don’t think you’re not strong enough to see someone else. I was naive about the Parkinson’s situation because it was such a shock and I was seeing an expert in the field. But looking back, I knew I was getting worse each time I saw him.

So I am hitting the restart button and am so far proud that I have managed to write this article, because taking writing away from me was and is one of my worst fears. I’ll keep going, I always do.

Getty image by Johnny Greig.

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