Ellie

After years of being ill, after a huge amount of hospital appointments and being told it was ‘just growing pains’ or ‘just my age’ I was finally diagnosed with Fibromyalgia at the age of 14. My first response was relief at the acknowledgement that this was not just something everyone my age dealt with. The pain that kept me awake at night was not just normal.

Fast forward a few years, and with the onset of dizziness and fainting, more testing came my way. I had repeated stomach issues, an unknown anxiety that was drilled into my head about standing anywhere for a long period of time, confusion, memory issues and of course, the chest pains and rapid heart rate. This all resulted in a conclusive tilt table test and this led to the diagnosis of Postural Orthostatic Tachycardia Syndrome.  

At the end of my test, a flyer was handed to me along with a name of a condition I had never heard of, in a room alone with doctors and nurses.  The relief of what I had been told, initially set in, this was not just depression and anxiety, nor was it all in my head. I was left with the realisation that I had a diagnosis of an incurable condition, a list of recommended changes to make and the hope I would find something that would help. Despite naturally being a pessimist, I stayed positive and reminded myself, I was not dying. I was not bedbound or homebound, I was lucky I was still ‘well’. I had the confirmation I needed that I was not just a skiver with a below average attendance. I carried on the best I could and still managed a social life.  

Living two lives

My years of school life had taught me everything I needed to know on how to hide an illness. I had been hiding it from everyone around me for years, and whilst many would say I was always complaining about something, I was only letting on a small amount, in a plea for understanding. I was living two lives and whilst I tried to explain, I admit it’s hard to believe someone is ill when they look well and carry on with life, in public anyway.  

Two years later, the flu hit me, and it hit me hard. It attacked every part of my body. After repeated infections and failed attempts to get out of bed, I was physically and mentally drained. Whilst mum kept my business running, I spent months in bed wondering how I was ever going to get better and carry on with life. This is the point when I had to give up on my dog day care business and close it. It was the hardest thing I had ever done. I had put everything I had into it, and it was all I had going for myself.  It was an emotional time of accepting I was no longer well enough to run my business and made the decision to stop looking after dogs.  

Working at my own pace

With a huge amount of help from close family, I took the plunge to put everything into my new business of making dog accessories and working at my own pace. I needed a purpose, I needed something to focus on and get me out of bed in the morning. I created a business that allowed me to have a day off, if I needed to. I could work my own hours and slow down when I knew I had to. Taking the pressure off myself was the most important thing I could do. I worked from home, focused on my health and created a dream.  

Small things to the regular person were huge milestones for me. I was trying my best to be sociable in public and look well, whilst behind doors I was struggling to shower and get myself dressed. I learnt that I only had limited amounts of energy per day. So, whilst cooking a meal and having a shower is just something many take for granted, this could be my only energy for the day, leaving no energy for anything else, and at the time, my business needed to take priority if I wanted it to succeed. The hardest thing for me was letting my boyfriend help. I was stubborn and wanted to do things myself, but letting someone else take control, allowed me the energy I needed to carry on. 

Everything and anything made me exhausted

I stopped socialising, and an hour conversation with someone visiting the house would put me straight in bed the minute the door closed. Everything and anything made me exhausted. I found it easier for everyone if I stayed at home and let everyone else have a nice time. I became terrified of ruining people’s days as it became harder and harder to put on a disguise and head out the door, so the solution was simple, I just stopped saying yes to things. With the advice from my specialist, it was time to focus on getting my health under control. Socialising was too draining, keeping up with conversations whilst I would stumble on words with brain fog, the heat, the noises around me, it’s often too much.   

I have recently learnt in the last year that this feeling I had eating away at me was grief. I was grieving my old self. Someone I thought I was but still don’t know if I will ever get back to being. I have been told this is very common for someone in this situation and I am not alone. I can now understand why I struggled and still do struggle, feeling like I am trapped in the body of someone that isn’t me, as if watching from above.  

There is a path for you

If you are reading this as someone with PoTS, or as someone who loves someone with PoTS, I hope this can shed some light on why you may be feeling this way. If someone had told me this 5 years ago, I may have felt a bit more ‘normal’ and understood. It’s important to grieve your old self, and don’t look back. Stop comparing your life to when you were able to do certain things. But most importantly, I hope this gives you the courage to know there is a path for you. You may be at your darkest time, and can’t see the light, but it is there. You just have to find it.