My Health Changed My Life - AMA
This isn't as interesting as the other AMAs I know, but after Shawn hassled and hassled me with tons of questions in my PM about it all as well as others possibly facing the same difficulties.... I thought... why not make an AMA!? So, whether it falls to the bottom of the forum or becomes the next biggest hit... here goes.
As a young child I lived in hospital on a drip and rarely attended primary school, so was home taught by my mum as well as a tutor for when I was 10-12. I was living on a drip because I couldn't talk eat or drink but I still managed to pass an exam to get into a grammar school - my mum is obviously a legend! ;) Over the years this has calmed down enormously to the point I only have three to four in my mouth at any one time and that is it! Never free of them though.
It was going so well.... really well... my grades were amazing, I was in the athletics team, my local hockey team, basketball team, football teal, even netball at some point... gym every day and half way through the recruitment process to join the Navy... my dream, but then at 14 I developed a heart condition called Postural Orthostatic Tachycardia Syndrome (POTS) which means I struggle with the simplest of daily tasks and can't even walk that far now let alone run, but hey one door closes and three more open.
So my life changed, my dreams changed, my health is deteriorating, but without that I wouldn't have met you guys so, ask away!!!
p.s if you are interested in it, the site potsuk.org has a great amount of accurate information on it the spoon theory really applies.
Hannah you are an inspiration.
What is the long term prognosis of your illness?
(please keep hope alive, medical breakthroughs happen often)
Well thank you very much for those kind words - there are far more who experience greater difficulties and cope far better than I, for me they are the true inspirations of the world.
In terms of the long-term look. In terms of the childhood thing, they said I should outgrow it when I was 12, then 14, then 16, well I am 18 now and they barely cause me any trouble so it looks promising! In terms of the heart condition... slightly different story but an exciting one nonetheless! Because I developed it at 14, it is more likely for me to outgrow this than the other two strands by mid 20s. However, it is deteriorating rapidly rather than getting better and quite a lot of people end up in a wheelchair or bed ridden. I will keep trying with my exercises and my water and at least give it a shot. I could cure, I could stay the same, I could get worse. It is still new and every person is different.
Medicine is amazing so I keep my hopes up :)
How have your experiences affected your perspective on life ?
How has this affected your friendships and education now ?
Do you know many other people in real life who face the same challenges or condition?
Do you believe there are any positives to come out of your experiences?
Thank you for answering you are amazingly brave :)
How have your experiences affected your perspective on life ?
Well, initially it got me really down, I kept seeing life as nothing but doors being closed, my education slipping away, my sports going, my dream of the Navy going but as time moves on, it is becoming more and more positive and as you can tell by this thread, something which has done me good really. Before, yes, ok, perfect fitness, really active, really social, but I was also loud, I wasn't listening, I wasn't loving or realise what I had. Now I love every moment and take positives where I can and are discovering the quieter, less intrusive me too.
How has this affected your friendships and education now ?
My attendance was really shocking in the past two years (my final days of college). Initially it affected my friendships as people thought I was lazy, my education wasn't great because I didn't have the support of my teachers. Once it was recognised what I had, the final year was immense. Some of the encouraging and inspirational comments made by both friends and teachers was astounding and I worked my butt off (scuse me :P) to ensure I was level if not in front of the class each time! It actually made me a more independent learner which I am hoping to take with me to university in September. I have actually gained a couple more friends, though I don't see them a great deal, I think they are closer than when I was the sporty me. Sometimes I wake up and I just can't get out of bed that day or do very much, so obviously I rarely go out now but everything has a silver lining!
Do you know many other people in real life who face the same challenges or condition?
I had one other person in my school that I could sort of relate to, but I actually feel quite alone. I don't know anyone in person myself who has this, but on the site there are lots of stories of people who have this. In my eyes, someone can face the same challenges as me from something like severe depression. We all have our challenges and helping on this site makes me realise that more each day. I have it lucky compared to some. One thing I do notice is most people are born with something, or an event happens, mine came on randomly at 14, so it sort of changed my life, that seems a little more sudden and rare.
Do you believe there are any positives to come out of your experiences?
I can only echo my above comments. It let me take a step back and really enjoy life. Allowed me to stop and actually be me and helped me become more independent by becoming more dependent. I think you can see from this thread all the things it has changed :)
Thank you for answering you are amazingly brave :)
Thank you for posting your questions and writing such a lovely word! "brave" is one thing I am not sometimes but you guys have turned my life around in some ways just by being you lot and giving me someone to talk to when I can't go out (most of the time).