Living with a Chronic Illness...or two.

Now I know this is a book blog but I really wanted to get my story out there.
Living with a chronic illness? It sucks. I don’t give a crap what people tell you about “it will get better”, “you’ll get used to it”…5 years on and guess what? It still fucking sucks. And acceptance of that is the first stage of getting on with your life. For the first 2 years and first 2 operations, I tried to convince myself and everyone around me that I’d be okay and I’d be “back to my old self soon”. Best thing to do? Forget about your “old self” and embrace the new you.

The new you probably won’t be able to do half the things the old you could do. The new you probably won’t be able to drink alcohol often. The new you probably won’t be able to drink coffee or energy drinks anymore. On most days, the new you will probably struggle going to work. On some days, the new you won’t even be able to get out of bed. In the beginning, you will hate the new you but keep remembering, “Yes, it’s not ideal but my condition is manageable and I’m okay”, because most of them are. For years (yes, years!), I was stuck in the “why me?” phase and the quicker you get out of that dark place, the better. Trust me, I still have odd days where I’ll think it but being stuck in that frame of mind for longer than a few days is definitely not healthy. 

I’m now 22 and my first condition came to light when I was 17. It was a perfectly normal day and I was at work in the dentist and suddenly, my chest felt like it was going to explode. I’d had palpitations before but this was like nothing I’d ever experienced. I rang the doctors and was carted off into an ambulance immediately. My BPM was around 230bpm and 2 months later, I’d had my first operation. I had developed supraventricular tachycardia (SVT).  1% chance of coming back after my operation. Did it go? Of course it didn’t. I was back for round two three years later. For 3 years, the doctors were looking for answers. I had more ECGS, blood tests, tilt tests, running machine tests, 7 day heart monitors, 24 hours monitors, A&E visits, check-ups etc. than you could even imagine. It was in this time period that I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). Oh boy, if I thought SVT was difficult to live with, POTS was off the scale.

When I was first diagnosed with POTS, I honestly thought any chance of a life was over. I read so many stories where people with POTS were wheelchair bound, had to give up their jobs, couldn’t socialise, couldn’t cope on a daily basis etc. I remember coming home from the hospital and me and my mum cried for hours and hours. I changed my entire lifestyle. I was only eating foods off the suggested food list; I was meditating every day, no alcohol, no caffeine, limited exercise and everything else my little book of wonders (POTS: Together We Stand) was telling me to do. I think me and my mum hoped if I followed the book religiously for long enough, by some miracle I’d be okay again. We were wrong.

I was depressed for a long time. I was signed off work. I then quit my job. Then one day I sat there and thought, instead of moping that I’m one of the youngest people my cardiologist’s seen with this, instead of moping that my friends are “normal” and I’m not, instead of moping that I’ve got 2 heart conditions that no one’s ever heard of…I’m going to do something about it. And I did. I raised over £1000 for STARS (Syncope Trust and Reflex Anoxic Seizures) and made everyone I saw aware of what I was going through. I did a sponsored walk and about 20 of us completed it. I was so proud of myself.

By April 2014, my mum and I were sick of doctors and cardiologists having no knowledge of POTS and not helping me improve my lifestyle in any way. Want to know what my wonder mum did? Found the best cardiologist in the UK for POTS and wrote to him. He is the most wonderful man and said he would love to meet me. (Probably because he later told me that he has never seen a patient with SVT and POTS…guess I’m just lucky!) In July 2014, I had my second operation. Guess what? It didn’t work. But this man knew what he was talking about and I am so grateful for him (and my mum for making him take me on NHS!)

He asked me at the end of 2014 if I’d like to have a third operation. I refused and continue to do so. I started medication in December 2015 (I’d been signed off work for two months because of a POTS flare up which left me fainting almost every happens a lot!) and he keeps asking if I’d like a third operation but honestly, right now? I don’t. I’m happily engaged at the moment and living with my gorgeous fiancé and we’re getting married in 4 months. When children are on the horizon, I’ll probably think differently (POTS and pregnancy don’t sound like such a great combo!) but for now, I’m managing and I’m okay.

I’m thinking of doing another sponsored walk soon and I’d like to double, triple, quadruple the numbers of the last walk so please, when I post the details, join me and spread the word. You are not alone.

Here are some links I thought you might like to look at:

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