Alyx, 26

Hi, I am Alyx. I’m a positive 26-year-old who was fit and healthy up until December 2019 when I was admitted to hospital and diagnosed with pneumonia and flu. I went to the gym five times a week and worked supporting victims of domestic abuse. I lived a very active lifestyle. 

After discharge I continued with an uncontrollable tachycardia and other symptoms. Following multiple tests, hospital admissions and ECG tapes, the day after my 26th birthday, my cardiologist wished me a happy birthday and gave me my diagnosis of POTS. 

This is Quote

This is how my POTS story started. 

My medical team continue to be truly amazing

Many medication trials later and still managing to find what works for me, my medical team continue to be truly amazing. Having to rely on them has not been an easy skill to learn but they are remarkable. They were there every step of the way, even when symptoms were so severe, I was unable to get out of bed. 

Two months of living with my diagnosis I have seven top tips I would like to share:

• Talk to people (this includes your dog!). Share how you are feeling emotionally. We all have good and not so good days, do not hold in the tears. It is normal – us POTS guys can cry too! 
• Choose your support bubble around you. Build your team with people and things that are most important to you. Realise that friends can change when we are given life changing news. It is not up to us to force ourselves to be able to do the things we used to do to fit into old friendships. 
• A medical team you trust, who are honest, who hear you and who are available to you. If you are unhappy with your medical team it may be possible to request a 2nd opinion.
• Cool packs are my best friend- a lifesaver for migraines and night sweats.
• Alcohol free wine nights and virgin cocktails are a must – celebrate those good days!
• A total change of lifestyle isn’t always a bad thing. It provides us with the opportunity to learn something new and for our lives to take a different direction.
• Don’t let POTS define you, it’s one small part of you. 

On the 20th February, my 26th birthday gift was a POTS diagnosis. Yes, it’s a gift that has changed my life. It has given me the opportunity to learn a lot about myself, tested relationships close to me and made them stronger. 

Has it changed me?

I’m frequently shattered and some days are terrible but… 

I am still Alyx, I’m still 26, I’m still positive about my future. I’m learning patience and building my future with my POTS gift.