Sticky Blood-Hughes Syndrome Support
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My Life Story: Part 3 - aged 28 (Updated March 2009)

My Life Story: Part 3 - aged 28 (Updated March 2009)

Update: March 2009

I have just re-read my story; it's quite traumatic really isn't it? Sitting here in my office in central London, it's really quite emotional to remember how ill I was. It's a very difficult thing to look back on. At the time you are working so hard to hold everything together and get on with life as best you can, that you don't leave time to feel sorry for yourself. I have met many people who have asked if I ever think "why me?", but I can honestly say I haven't. I'm not a saint and I have wished the whole thing would go away, but I honestly think out of all the people in the world maybe I have Lupus and Huges Syndrome because I can deal with it in the "right" way; that I have the strength of character to be able to learn and grow from this. Maybe? But looking back on the worst times makes me well up now, I think it's partly because I know I could go through the whole thing again and I will not have time to feel sorry for myself then either as I will have a very busy life to hold together. It sounds strange but Lupus and Hughes Syndrome has made me the person I am today and I couldn't be prouder. I am determined and focused and I work hard to make sure that I appreciate the important things in life. I am well aware of the truth behind the saying "life is short". But working out what YOU want to fill it with, now that's the challenge!

So what have I been up to? Well, I bought a house, have been horse riding four or five times a week, changed jobs, got a promotion, attended every party I have been invited to and been on some amazing holidays. I have been living, I mean, I have been really living.

The transplant has made so much difference to my life that in November 2008 we threw another party for Kevin - it is so amazing to see the extended support from friends, family and colleagues. I cannot thank everyone that has helped me, my friends and my family over the years enough. It is not easy to be close to someone going through this either! This year Kevin's party is going to be bigger and better - he will be 5!!!!

It hasn't all been plain sailing though; together Kevin and I have been through, relationship break-ups and make-ups, we've had to deal with a few accidents (I have broken my hip socket and three vertebrae in the last four years falling off aforementioned horse) and numerous numerous hospital appointments and clinics. Somehow the appointments collect and you'll have a few weeks where you are in and out of every different department in various hospitals and it feels like a never-ending reminder of the fact you are 'ill'. In this country we are so lucky that we get this attention from the NHS and that we are so well-cared for but when you are just trying to get on with life it feels like such an inconvenience. My company (in fact every company I have worked for) are fantastic about the lupus, Hughes and transplant, and are very supportive with the hospital absences. But for me it's so frustrating that I can't seem to escape these places. And I have the age old backhanded compliment "but you look so well" almost everywhere I go.

This year I have some serious goals, I want to start competing with Omid (horse) and I want a clear round at show jumping and cross country, and a single 6 in any dressage test. I am also going to Malaysia in the summer to go jungle trekking and scuba diving. It really is true - the world is my oyster. And as long as I keep taking my medication and attending these clinics and being super-aware of any changes in my body, I'm sure it will continue to be.


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