"You Just Might Be Okay".

If you've been following my blog for a while, you will know that I live with a chronic illness called PoTS. If you're not familiar with this, I explain all about it here. I have been living with this condition for 6 years (since I was 17) and in that space of time, apart from my diagnosis, which took years in itself, I've never really had any answers.

I had 2 failed heart operations, 5 hospitals, multiple consultants, tried many pharmaceutical solutions, been in ambulances more times than I can count and honestly, I'd had enough. In June, I was terminated from my job for being ill (very illegal, I know) but this was the push I needed to do something for me and get things sorted.

I booked an appointment with a private cardiologist (most of my final savings were spent on this appointment, in the hope things would change) and he referred me under the NHS to the National Hospital of Neurology and Neuroscience. He told me they had a few consultants who specialised in PoTS. Now, for someone who's used to explaining to doctors what PoTS is, this almost felt too good to be true. 6 years on and I finally meet someone who isn't just interested in my heart, but is interested in my autonomic system? Until yesterday, I didn't believe it.

I arrived at the hospital in London after 5 months of waiting for an appointment. My consultant was quite stern at first, something I've not really had before and I was incredibly nervous. This was my initial appointment, I was expecting to repeat the same tedious stories about my condition, and leave after 20 minutes feeling deflated - that's what I was used too.

Over an hour later, I was still sitting in that room. Sobbing my heart out. For years, I've never met anyone that truly seemed to understand what I was going through, and believe every word that came from my mouth. There was no, "are you sure your symptoms are like that?", "is your heart really that fast?" - she was knowledgeable, thorough and filled me with something I thought I had lost a long time ago - hope.

She gave me advice. Not "let's pump you with drugs and send you on your way" advice; which I was so certain she'd say. Real, usable advice. For any readers out there of PoTS, here are some of the things she told me:

  • Higher salt/water intake (I'm sure you all know that)
  • Small meals (another popular one)
  • Heel lifts when standing for extended periods of time
  • Drink water before getting out of bed in the morning
  • Drink cold water during a bath to make it more bearable
  • Cross your legs whilst standing to help 

and the one that filled my eyes with tears:

  •  Don't push yourself. Repeat small things you know you can do. For years, I've been told, "well you should be doing this, you should be doing that" and when you can't do it, you sink into a bout of depression. She told me: "if you're tired, you've done too much - it doesn't matter if you walk around the house and you're tired, don't do it and don't push yourself". I was overwhelmed by this. I didn't have to make myself lethargic and ill for days on end to prove anything, to anyone - who knew?

She said in the next few months I will be booked in for extensive testing. I am excited, and terrified at the prospect of this. They put you up in a hotel in London and push your limits. It consists of a 24 Hour Blood Pressure Monitor, whereby you're asked to do some intense exercises and provoke your symptoms. A 45 minute tilt test, in extreme conditions, whilst having ECGs, blood pressure and bloods taken from you (sounds enjoyable, that one). A digestive test, whereby you're given a liquid meal and lay down for 45 minutes and they monitor how well you digest your food.

I'm sure there are things I've forgotten because I left feeling in a daze. Apart from my brief crying outburst in there, I haven't cried about it; not once. I think I just feel numb and in shock. I've never left an appointment feeling positive before - I didn't know that you could. Even after coming round from my operations, I could tell by the deflated looks on my consultants' face that I was still stuck with this. This is new and incredible.

If you don't live with someone with PoTS/have it yourself, you don't truly realise how much it affects the person. Even my mum, my sister - the people I love most, they don't realise how difficult it is because I'm an adult now, and when you're an adult, living in your own home, you kind of feel like you have to cope with this on your own. But I don't, not anymore.

She offered me support groups. I can meet people with PoTS, like me. How amazing is that? I feel like this post is just a long, happy rant about how positive yesterday was - but it's nice to post a positive personal post for the first time in a while. If anyone has any questions, feel free to comment, message, or email me: zoecollins1994@gmail.com. I'm always here to talk, especially with fellow PoTS sufferers.

A little voice that has been silent for so long, whispered to me today, "you just might be okay".


2 comments

  1. This is some amazing and inspiring thing to do when you are going through a troubled life and all you want is to make it better for others. You're strong. Stay like this :)

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