February 2020 marked five years of me living with POTS and I realised that I have not published my full POTS story on my blog. In this series of posts, I chronicle the past five years of my life and how I learned to live well with POTS. If you want to find out more about how to live well with POTS, my debut ebook ‘The Reluctant Spoonie’s Guide to Living with POTS’ is out now on Amazon. It contains lifestyle tips such as POTS fashion tips, dating with POTS in addition to personal stories from real people who live with POTS. Read a full review here by Claire from Through The Fibro Fog
These posts come with a *TRIGGER WARNING* for medical trauma and negligence, so please read with care.
My POTS Story: Part 1- Maybe It’s Just Stress?
I began 2015 with January exams, as I’d done for the past 5/6 years of my life. This time it was different. I felt exceptionally tired which I attributed to doing master’s level study, working on my final dissertation and revising for exams. I remedied this with caffeine in the form of ProPlus and coffee. I powered through my exams and dove straight back into my research afterwards without taking a break. A few weeks later, I was struggling to get out of bed. I missed lectures, which was out of character for me. I had always been a diligent student. I always attended my 9 am lectures, even in my first year after a boozy night out. I was passionate about my subject (Chemistry) and got good grades. I had won two hefty scholarships totalling £4,000 between them in my first and second year. I was fit and healthy. My course was physically demanding and required several full days of lab work per week. Lab work became more difficult for me. I couldn’t open solvent bottles by myself any more. I used to memorise the method before the lab session and now I could barely remember one step.
I quit my part-time job as I thought that was the source of my ‘stress’. I slept in until noon most days, missing all of my morning lectures. I bought a pregnancy test. It was negative. I pushed through, trying to attend as many lectures as I could. I was also applying for PhD’s at the time and had several interviews to prepare for in addition to my other work. One day, everything came to a head. In the lab, usually my favourite place. I struggled to lift my arms and kept losing my balance. I stood at the sink, washing out some centrifuge tubes and I couldn’t squeeze the solvent bottle that I was using to wash out my tubes. I didn’t feel safe, so I went home and made a doctor’s appointment for that evening.
The first doctor that I ever saw about my POTS symptoms was an out of hours GP. They took my vitals and told me that I had a heart rate of 150 bpm which was not normal. She told me to go straight to A&E for an ECG (Electrocardiogram). I went with my boyfriend. I didn’t really know what to expect as I had never been to A&E as an adult before. We sat in the waiting room for hours. I was triaged. I had blood taken and an ECG. A medical student questioned me first.
‘Have you taken any illegal drugs?’
‘It’s okay if you have. We need to know.’
‘Are you in a relationship?’
A nurse came and put a cannular in that they never used. I was then left in the cubicle for another hour by myself. An orderly came with a wheelchair and took me to a ward. I got a bed in a single room. I did not sleep though as nurses kept waking me up to take my blood pressure or take blood. A real doctor finally saw me at 2 am. He spoke more to my boyfriend than to me.
‘Has she been eating?’
‘Not so much.’
‘I will schedule more tests.’
After that, my boyfriend went home to get some sleep. I did not get any sleep. In the morning another doctor came to see me.
‘I’m going to test you for HIV. You have some of the symptoms that we look for. Don’t worry, we’re testing everyone at the moment.’
That was the first and only time that I have cried because of my illness and it was mainly due to sleep deprivation.
A chatty orderly took me for a chest x-ray and parked me in a queue with a bunch of other people. I had my first of many chest x-rays and was then taken back to the ward. I then waited for hours to see a different doctor. At this point, I had not eaten anything for around 12 hours. A friendly nurse put some lunch in front of me and told me to eat. 10 minutes later, another nurse came along and pulled my tray away as she needed to take blood from me. She failed as my veins were no longer visible. I then had to wait for a more experienced nurse to come and take the blood.
At 4 pm, I was discharged with the words- ‘your vitals have returned to normal, maybe you were just stressed.’
I went home, with a prescription for vitamin D tablets which was the only blood test that was off (HIV was found to be negative) and crawled into bed for a proper sleep.
I took a week off from university and then returned as if I’d just had flu. My GP told me that I would be feeling better ‘in three weeks’ after I’d finished my course of vitamin tablets. Of course, I did not feel better after three weeks, I was getting progressively worse. A doctor told me to take further time off university. I refused as I was almost finished with my master’s year. I was no longer attending lectures or doing my lab work. I still tried to attend my PhD interviews. They did not go well. The first time that I experienced brain fog was during a PhD interview. I could not answer most of the questions as my brain had stopped working. I couldn’t remember basic things about my research. I could barely remember my own name. After that, I arranged to take medical leave from my studies for 6 months.
During those 6 months, my doctor repeated his ‘you’ll be better in 3 weeks’ mantra, but without any treatment or other help. I started to research my symptoms and came across POTS (Postural Orthostatic Tachycardia Syndrome). I tried a different GP. They were even worse. They told me to ‘go for a walk every day’ even though I could not stand up for more than two minutes. Being young, naive and still trusting doctors I followed her advice. It was a mistake. I forced myself to get out of bed every day and go for my walk. On the third day, I crashed and was no longer able to stand. This is the point where I became bed-bound. I only left the house to attend medical appointments with assistance from family.
Towards the end of 2015, my health had declined considerably. I continued to see the bad GP as there wasn’t a lot of options for me. I went with a list of symptoms and her response was
‘What do you want me to do about it?’
I told her to make a cardiology referral for me and she said that she would think about it and phone me later that day. A week later, I had to make a telephone appointment to follow up.
‘I think that you’re obsessing over your symptoms. This is why you’re not getting better.’
I disagreed with her and continued in my quest for a cardiology referral. After several appointments, I persuaded her to give me a heart rate monitor. The results spoke for themselves and the doctor quickly changed her tune.
‘You shouldn’t go outside by yourself, you could blackout!’
My cardiology referral was made in December 2015. I thought that I was approaching the endgame, how wrong I was.
What I learned during my first year with POTS:
- Doctors don’t always know best
- Trust your gut when something feels wrong
- Do your research and educate yourself on what tests your doctor should be doing
Find out more about the importance of taking charge of your own healthcare in this post from Illness to Ultra here.
Is this similar to how your POTS started? How did medical professionals treat you when you first started getting POTS symptoms?