Hi, my names Kelly.
I’m 21 and I’ve been living in Northern Italy for the past 10 years with my parents and younger sister. We bought a wreck in the middle of nowhere which we restored into a wonderful boutique hotel.
I’m writing this blog to tell you all about what I’ve been going through, because it’s not just me – there are lots of people going through the same as me.
I have something called Ehlers Danlos type three, which is better known as hypermobility syndrome, accompanied, as it often is, by POTS (Postural Orthostatic Tachycardia Syndrome), and the recently discovered histamine intolerance.
This trio can sometimes make my life pretty hard, and some days are really tough, but better days do come along, and they’re amazing. I’m working really hard to make the rotten days fewer and farther between.
It has taken me eight years of feeling horrid, thousands of tests, and being passed like a hot potato from one doctor to the next, none of them being able to tell me what was wrong.
So, after years of sickness, hundreds of doctors and no answers, my brilliant gp, in his desperation to get me better, went to a conference of rheumatologists, stood up in the break and said “help! My patients sick and I don’t know why” and they came up with fibromyalgia.
So, one week later, my mum and I were in a flight to see the best fibromyalgia specialist in London. He took one look at me and said “You don’t have fibromyalgia, but I do know what you have.” And so off we went to the right doctors, and finally I had the names of what had been making me so I’ll for so long.
So, imagine my dismay that there is no fast track back to health with these problems. It’s going to take time and hard work.
This year has been, in many ways, the hardest I have had. I was certain that once I knew what was making me so I’ll I would get better right away… How wrong I was!
It seems that this year everything has gone crazy. Blood pressure is low I have had to call out the ambulance, kneecap and hip dislocations, and so much more.
I think I really hit rock bottom this year. I didn’t know how my life would pan out, would I get better or not? Would I have any quality of life back? Would I ever have a social life again?
I found that in the lowest moment I had, I saw myself and thought, ‘Get up and do something about it then! What’s going to change if you start to feel sorry for yourself? You have to get up and change it’. And largely thanks to the support of my wonderful family, I found the strength to get up and start changing things and putting my life back together.
I think this was when I realised how much being sick had affected my life – when I saw how little of it was left to put back together. Then I remembered something that JK Rowling had said many years ago. “Rock bottom was the foundation upon which I rebuilt my life”, and instead of seeing it as something sad, I saw it as a wonderful opportunity.
What do I want in my life? Who do I want in my life? I get to start all over again, without having to change everything. So I have started to build the life that I want to grow into.
I have always been very luck as in I know what I want to do with my life. I want to help people who are chronically ill, because it really does take over your life, whether you want it to or not. I want to help these people get their health back, but not just with medicines (goodness knows they’ve been worse that the actual illnesses at times!), but with diet, attitude and exercise. I want to help them get their confidence back and have support from someone who really understands what it’s like.
The other reason that I’m writing this blog is because wherever I look for support for hypermobility or pots, there seems to be so little optimism, but I want to show everyone that, yeah, being sick is tough, but it doesn’t have to make everything impossible.
There are so many ways that we can get a smile back on our faces and say – today’s going to be a great day! Or, today’s going to be tough, but so far I’ve won 100% of my battles and those are pretty good odds!
P.s. In case anyone is wondering, I chose this title because a zebra is the symbol for rare diseases.
Hi, my names Kelly.