This series outlines my first five years of living with Postural Orthostatic Tachycardia Syndrome (POTS) from initial onset to recovery and more! Get my Guide to Living with POTS here which contains tips and tricks for living well with POTS. As well as three personal stories from real people who live with POTS.
Read Living with POTS Part 1 here
Living with POTS Part 2: Becoming a Spoonie
By K W Warburton, The Reluctant Spoonie
At the start of my second year with POTS; I was worse than I was the previous year. I was completely bedridden or housebound every day. I only left the house to attend medical appointments. I spent my days switching between my bed and my sofa which was just another bed where I snoozed my day away. I couldn’t read, so I spent my days trying to watch TV, but I often couldn’t follow the most basic of TV shows.
In the spring I saw my first cardiologist who was only able to do a few basic tests such as an ECGs and a chest echo. They suspected that I had POTS. However, they didn’t have the specialist knowledge to help me or access to a tilt table test. I was then referred to a second cardiologist for further tests.
My quality of life did not improve during this time as I was still waiting for treatment and medication. On top of everything, the lease was up on my flat and I had to move. My boyfriend and I moved to a cheaper part of town where we could afford a slightly bigger flat. Moving was a hassle and we had to hire a removal firm to help us as I was unable to lift anything which seemed excessive as we didn’t have a huge amount of furniture. The additional costs of having a long-term illness were beginning to bite.
A new place to live also meant a new GP who I didn’t meet until a few months after I’d moved (more on them later).
During this time, I was still on medical leave from university and I was desperate to go back. I had already requested an extension on my medical leave twice and my time was running out. I wanted to wait until I had a final diagnosis before I made any final decisions on my future.
Chronic illness was a new term in my vocabulary. At this point, I had been experiencing symptoms for over a year and now fit the criteria for being chronically ill. The thought of being sick indefinitely was not something that I could wrap my head around. I spent my limited daily energy researching POTS, but I couldn’t find what I was looking for: a positive recovery story. A lot of the personal stories that I read online were just like mine; a sudden onset of debilitating symptoms followed by becoming bedridden for a long time. Where were the happy endings I craved?
Luckily, I didn’t have to wait a huge amount of time to see my new cardiologist. I had my tilt table test in July. During a tilt table test for POTS, they strap you to a board and tilt you at an angle and leave you until you faint or have another reaction. My usual reaction to standing up too long is to throw up and that is what happened during this test. This meant that my tilt table result was positive. Of course, I had to wait a few months for the official results.
Get my guide to living with POTS here
It was around this time that I first came across the term ‘Spoonie’ as a word to describe someone with a chronic illness (Find out where the term Spoonie comes from here). This was when I applied to be a volunteer crafter for Spoonie Survival Kits and discovered the online chronic illness community. Did I want to become a Spoonie? No. I just wanted to go back to my normal life (and if I’m brutally honest, a part of me still expects to).
During this time, I had to go and see my new GP for a general ailment. This is when I first started suffering from ‘medical appointment anxiety’ from my past experiences with GPs (see my first post in this series for more details here). Also, I had just been told that my university could no longer hold my place and if I wanted to keep it then I had to return now or lose it. As I had not yet received a diagnosis or started treatment, I did not have a real choice.
I sat in the hot, crowded waiting room with my heart pounding more than usual; eyes on the electronic screen waiting for my name to flash up. A million thoughts rushed through my brain. What if they’re mean? What if that don’t want to help me? Maybe I should just leave. What if? What if? What if? At that point, my name flashed up on the screen and I wobbled my way down the corridor.
I knew straight away that this doctor was different to the others. Unlike the others, he was happy to see me and greeted me with a smile instead of the scowl that I was used to.
‘How’ve you been?’
‘umm,’ I shrugged, as I had not prepared an answer to that question.
Somehow during that appointment, he managed to extract several pieces of information out of me 1) I probably had POTS 2) I throw up a lot 3) I had just dropped out of university.
‘How do you feel about that?’
I shrugged again as I had not yet processed my feelings about it.
I left that appointment feeling better than I did when I walked in which is probably how you’re supposed to feel after seeing a doctor. I had not experienced that before.
In mid-September, I received my diagnosis of POTS and was put on the standard medication of Fludrocortisone (steroid for blood volume) and Ivabradine (heart medication). I was so excited to start these medications as I had been waiting almost two years to try them. Naively, I expected them to work straight away, like painkillers. They didn’t. After two weeks, the side effects kicked in. My heart rate was down, but I could no longer eat due to the immense nausea and stomach pain caused by the steroid.
My GP put me on a new medication to combat these side effects which helped with the stomach pain, but I was still unable to eat a full meal. Unfortunately, this was just the start of my additional problems.
What I learned during my second year with POTS:
- There are some good doctors
- Tilt table tests are horrible
- Medication isn’t a magic cure for POTS