Friday, 13 January 2017

A secret to share........




Dear world,

Happy New Year and welcome to 2017. I hope you had a great Christmas and New Year. Celebrating Christmas in 38 degrees is a stark contrast to a freezing cold (sometimes white) British Christmas but it was still good, just different. I was very warmly welcomed for my first Christmas with the Spencers and as a way of my appreciation Juzzy and I cooked most of the food all day. Way too much over indulging both of food and drink, but that’s the whole purpose isn’t it?! I was hoping I would be starting to work it all off, but I had a minor incident just before Christmas which resulted in me hobbling along like a one legged kangaroo!



Following on from our camping trips it seemed my English blood was very much in demand by the Aussie mosquitos and I ended up looking like I had a weird case of chicken pox. I was prepared for my outdoor adventure and had armed with me some cream which is meant to take the sting out of these nasty bites. Unfortunately for me, I made the mistake of putting the cream on one of the bites on my foot in the sunshine and didn’t rub it in properly. Slowly over the course of a few days my foot developed a very nasty burn and it became very swollen and even at one point thought it was infected. After a $100 fee to be seen by the doctor and pharmacist, (thankfully I have travel insurance), 3 weeks later I am just left with a white scar on my foot but at least now I can walk properly on two feet!


I had hoped once this had healed I could start my fitness regime up again but typically I have started with a nasty cold. I have been very lucky over the past year that I haven’t been ill at all, and I was starting to think my immune system had super powers. But being surrounded by lots of people, late nights and over indulging at Christmas I think I have just run myself down. So here I am, laid here in bed writing my blog, surrounded by a box of tissues, hot water with Manuka honey and lemon and a big dose of feeling very sorry for myself. I am willing myself to get better pronto as I have a big trip to Bali in 3 weeks time which I am very much looking forward to.

As I’m sure some of you will have seen I have been having a great time so far here again in Australia. Juzzy and I have really got into the whole camping adventure, although I did question this a bit more at New Years when we were confined to our tent during a massive thunderstorm and when the ground around our tent started to fill up like a bath. Luckily we just missed being flooded indoors! I also massively questioned my sanity of camping a bit more, when I was woken in the middle of the night. What was a sturdy 1m high blow up mattress when we went to sleep, turned into us waking up in the middle of the night nearly on the floor with what seemed like a wobbly water bed. I’m sure our neighbours really loved us at 4 in the morning when Juzzy went and switched the car on so we could blow up the airbed! All in all though our New Years was great fun, wine tasting in the Yarra Valley and hanging out with friends to celebrate. Now we just need to find where the puncture is and repair it before we head off again on our next camping trip.



Physically, albeit the minor cold, I am delighted that I am still able to carry on as before. Prior to Christmas I was pushing myself consistently, aiming to walk 10km a day and I even started to think about doing some basic jogging. You may remember from my last blog I wrote a dream list. One of the dreams was to be able to run 5km. I woke up one morning and just thought today is the day I want to give running a go. Yes, I thought I could be Forrest Gump! Ok maybe not that extreme but I just had an urge to go and see what I could manage. After all, the only time I have ever run before was in athletics at school and whilst the 100m was manageable the 800m we had to do was a different thing entirely. By about 150m I thought I was going to pass out so I would walk the remaining 650m. I was always near the back and just came to the conclusions that I wasn’t made to be a runner.


So we set off early, to try and avoid the morning heat in Swan Hill, and Juzzy suggested I aim for certain places up ahead to get to and then walk a little and aim ahead for where I could start to run again and so on. With water bottle in tow and no expectations of how long I would manage or what distance I would run, I started off with some trepidation. I set myself a goal to try and get to a lamppost ahead but realising once I got there I wasn’t about to pass out I willed myself on to the next landmark without the need for a walk. I managed to run/walk 2.09km in 24:52 mins which according to my Fitbit meant my pace for a km was 11’55”. I was chuffed to bits for my first attempt as even prior to having PH I didn’t run. By no means do I think I could be the next Paula Radcliffe but I am impressed I managed 2km. When I think just 18 months ago I managed to walk 250m in my shuttle test and was relying a lot more on my wheelchair, my improvement to now is nothing short of a miracle.

I’ve just celebrated my 3 year diagnosis anniversary. I will never forget the moment I read on the NHS website when PH was first mentioned to me as a possibility that 2/3 of patients with PH don’t make it past 2 years. I honestly thought my life was over. New Years is a bittersweet time for me. On one hand I am so thankful I am here another year and getting myself further away from that statistic but on the other hand it brings with it anxiety that I never had prior to the diagnosis.

I had such a good year health wise last year, if someone had said to me at the start of 2016 my PH would be categorised as level 1, I was going to come off the transplant assessment programme, I was going to be walking and exercising more than ever and that I would even be able to run 2km, I would have thought they were crazy! So why are you thinking negatively about it? Is what I can hear on one side of my brain to the other. The reason I think is the uncertainty of living with a chronic progressive disease. We don’t know when it’s likely to strike next. We don’t know when my drugs will stop working. We don’t know if I’ll make 40 or if I’ll be able to live well into retirement. We don’t know anything concrete for the future. We don’t know why I developed PH, there’s no reason in the world as to why it chose me. So even when you are doing well, your stable, the doctors are happy with you, there is still that slight negative thought that you will never be able to shift. Not knowing any reason why I developed PH is hard for me to understand why I have it. And in turn if it has happened once to me before there’s no reason why even though I am stable now that it could easily turn around and I start to decline.

Anxiety is such a hard topic to talk about. I really struggle to explain my feelings both writing it down and in person. I have been wanting to write this latest blog the last few months but wasn’t sure how I could articulate anxiety and how it makes me feel. I still don’t think I have explored deeply my feelings of anxiety enough but I don’t want to bore you all with my writing! But I have realised the last few months that I am not the only one suffering in silence with anxiety. I am on a forum for PH and I have conversations with people like me who constantly suffer with anxiety which puts added stress on their already fragile bodies. So in a way it’s good to know I am not the only one who is suffering in silence. I think though for now my coping mechanism for anxiety is fitness. In my head, it’s my way of controlling the disease. For now I am keeping the PH quiet, I know my limits and doing fitness every day keeps the demons away. Hopefully for a long time to come I will keep the PH quiet and I’m sure the anxiety will rear its ugly head now and again, but as long as I am winning the war then that’s my goal.

As always thanks for reading,

Lots of love,

Gemsy xx


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