Amber
Hi, I’m Amber and I am 21 years old. For me, my PoTS journey began in December 2021. I just remember going from a healthy, cheerful person who was loving life and finally finding what it was I was wanted to do in my future, to someone who began to feel unwell and face so many debilitating symptoms every single day.
Being told about PoTS
At first I was bed bound with just an overall feeling of being unwell, I felt like I had the flu, but the flu didn’t want to go away! No matter what I did, how much rest I had, it was still there and I just felt awful.
I saw my doctor as I knew something was wrong and as I said, it just wouldn’t go away, leaving me scared and confused. I was being told that even though my symptoms were all over the place my tests were all clear, so it must just be a virus as it was the time of year. I started to believe this and began to think it was my fault I wasn’t getting better; maybe I was doing something wrong.
After several appointments which consistently showed that my heart rate was high, I was finally sent to the hospital for some further testing. Although most of my tests were heart checks etc, which other than the heart rate would come back clear, a lovely doctor at my hospital mentioned PoTS.
A weight lifted off my shoulders!
I remember getting home and searching to find out what PoTS was and coming across the PoTS UK website. When I read about the symptoms, other people’s stories & how PoTS can be triggered, it was honestly like a weight was lifted off my shoulders, I knew straight away that this was more than likely my answer.
So, after a few months of feeling as if I was in a dark hole with no answers, a GP finally referred me to a specialist. I was diagnosed very quickly, and was so relieved that I finally had some answers.
Covid and my symptoms
For me, COVID definitely did trigger off these horrible debilitating symptoms, but when I look back I definitely do think I had symptoms beforehand that just didn’t affect me as much. I was always a very tired person and I would often say I must have got up too quickly as I would get lightheaded and my vision would go fuzzy. I just assumed this was normal for me as it never interfered with my life until after I had COVID.
Grateful for all the help and support
As relieved and thankful I am to have answers and treatment in place, PoTS still really affects me and has hugely changed the quality of my life. I am unable to do a lot of things I was able to do before and I also have to rely on a lot of support, which is hard to come to terms with at such a young age. I am forever thankful to my amazing family and support network and of course to this amazing charity, which helped me in my loneliest of moments.
My advice
My advice to anyone newly going through this is to remember you are not alone. People do want to help and there are answers out there. We know our bodies better than anyone else and we know when something is not right. But most importantly, this does not mean your life is over. I can assure you, things can be so incredibly tough and completely the opposite to how you want your life to be, but you will find your new normal. Your new happiness. There is always hope, even in the darkest of moments.
For me raising awareness of PoTS is my coping mechanism and something I feel so very passionate about. I try to look at it as a positive thing as much as I can, although I will admit that this doesn’t always work out! I think of all the amazing strong people I have had the pleasure of meeting, finding the strength in me and getting through every single day. I also like to focus on creating goals for when I am stronger, such as doing a walking fundraiser. It truly has made me realise what is most important and how precious life really is.