This evening I decided to go on Pinterest, and like most people I decided to search quotes about bravery…because who doesn’t love a good motivational quote?! However, I realized that most of them were about overcoming fear and as soon as I saw that word I just couldn’t stomach reading any of them! I realized that actually I had a whole ton of fear built up inside of me about what I was going through with my illness on most days and what it meant for my future. This is when I decided that I had to do something about it before the New Year began. I think there is no better way than to get the things that bug me about my illness out in the open in hope that it means a “problem shared is a problem halved” and that it might also make other people who suffer from POTS and other mysterious symptoms feel a like they are not alone! There are so many symptoms in POTS that the doctors do not warn you about, so here are a few that affect me most…
- Reading- I admit I have never been the best at reading and I have a whole bookshelf of books that I have never finished reading, but brain fog is a whole different story. It makes working super hard because any chunk of writing literally makes me shut down because I cannot process what is written in front of me. It is something that comes and goes, but when it happens it can be really demoralizing. Luckily I have an amazing Mum who helps me when I get a case of the fogs, but sometimes it is a case of just looking at the pictures in a magazine or newspaper.
- Feeling tired- I have periods when I have so much energy and then periods where I am like a zombie. Once I described my current state to my doctor as a “zombie” and he found it hilarious and asked me how I knew what zombies felt like. Whilst I definitely appreciated him making light of the situation (and he is one of my favourite doctors I have seen in the past three years) being so tired can mean you are way more emotional, sleepy and it can lead to social isolation because it really cuts down what you can fit into your day compared to a normal person in their 20s.
- Public transport- So this one is partly my fault, because I am a scatter brain and constantly loose my “please give me a seat” badge, but some people think you are having a laugh when you say you are unwell and therefore will not be moving from your priority seat because POTS is an invisible illness. I have also had really nice experiences where about five women and men get up at once when I have said I need a seat, which makes me want to give them all a great big hug!
- Always being thirsty- I am an actual fish! I can literally drink gallons of water all day, everyday! It is great, but after your fourth liter in mid-December, it is a little confusing when you feel like you have been in a drought.
I want to finish of with my biggest plus about having POTS- I can eat all the saltiest food in the world and it just makes me feel better…chips, popcorn and extra salt on everything! Not many people can do that without feeling guilty!
I know I am not the best at writing, but I guess this is a self-acceptance exercise to help me along my journey xxx