Friday, 5 February 2016

Pension pot or shoes and handbags??

Dear world,

As if this is my 9th blog!!! I never really thought this would last anywhere near as long as it has, the support I have had from everyone has been amazing, so thank you all again. I have to admit though; this blog has been the hardest to write. I’ve had total writers block! Maybe I need to go and find myself in a forest where there are no distractions and then words will just flow out of me. But as life doesn’t slow down for anyone, I will just have to take the respite I am having from staying with my mum and dad.

So belated happy New Year to you all and your families. I hope you all had a good Christmas and New Year, albeit it does feel like a lifetime ago now doesn’t it. We had a busy Christmas, at Andy’s mum and dads on Christmas Day, which was my first experience of not having Christmas at my family’s house, bar the Christmas I spent in Sydney in 2006, where Katie and I ended up having a Greek Christmas meal on Bondi Beach front that cost us more than our weekly rent in a squat that we lived in! Fun times though. And it was the first time I tasted halloumi cheese which I very much enjoyed, even though it does squeak when you eat it, still find that a weird concept. We then spent Boxing Day at my mum and dads along with my sister, her husband and my niece. Marissa is just about at the right age now to get into Christmas. Granted she doesn’t really understand the whole Father Christmas story yet but she was quick to learn that most of the presents were for her and she opened them in rapid speed. New Year we were with friends and their 6 week old daughter. It was a messy affair with the boys and Amie doing shots in between the courses and whilst we didn’t do an official countdown (completely lost track of time) it was still lots of fun. So much fun that it took me 4 hours to get off the couch the next day as the room was still spinning. Good job I’m off the warfarin!

New Year’s Day will always be a poignant anniversary for me, as it was New Year’s Day when I nearly died (not to be dramatic in anyway), and was diagnosed with PH. Funny how quickly your life can really change with no warning, it just hits you. Well I am 2 years into having PH and I am delighted to be able to write that I feel the strongest I have felt since that dreaded day in London when I collapsed. The doctors are putting it down to the increase of the Viagra, I on the other hand have two theories. Since October I have had my very own personal trainer and each week slowly but surely I can feel myself improve. In 3 months I have doubled the amount of cardio I am doing (granted it’s now a massive 4 minutes) but it’s still a massive improvement from where I was last summer when walking up the stairs was a real challenge. My other theory is since the mention of transplant in August and going to meet the transplant co-ordinator in November, I think my body has decided now is the time to show that it can be as fit as it can be so that transplant isn’t on the radar just yet. I am slowly coming to terms that one day it is likely I will need a transplant but if I can delay that in any way by making myself as fit and healthy as possible then that’s my plan.

I stand by what I said in a previous blog, the hardest part of having this illness is the mental side. Granted the physical side when it’s at its worst is horrendous, but the mental side whether you are physically good or not is always there. To be told your life will 100% be significantly cut short is really hard to hear, and even harder when they can’t tell you how long you have left. Will I reach 40 or 50 or 60?? When you are poorly you just think its par for the course and live day to day, not thinking about the future. But as I am finding now when I feel, can I even say it without jinxing myself, “normal” I have started to consider more about the future than ever before. No one ever knows how long they will be on planet Earth for, and I’m sure if Richard Branson has his way we will all be up in Virgin’s Galactic in no time, but everyone assumes at least till pensioner age. So as most of my friends are now starting to build their retirement pot so they don’t have to work till they are 80, I’m at a bit of a cross roads. Do I join them and save all my extra pennies for the future on the off chance I defy all the odds and survive well into my old age, or do I spend my extra pennies on luxury treats as I won’t  be here post 40?! Cos what use is having all this money saved up when I can’t spend it from the grave?! Unless I am in luck and they have designer shoes and handbags up in heaven, then I will be in my element!

I look at this recent conundrum as a positive one. My health is for once stable and letting me get back to normality and to be even thinking about the future and whether I need to be sensible or just totally reckless shows that! I am hoping to whoever I need to pray to that we can find a cure and that I will be one of the lucky ones to hold out until that cure is found.

As always thanks for reading.

Lots of love,

Gem xx