PH has changed me - or has it?

Dear world,

I have learnt quite a few things about myself since being diagnosed which thinking about it now may have been there all the time, but I had no reason to ask myself about them before. I have learnt that I can face my fears; well, still not the electricity pylon phobia, but I haven’t come across a course where it’s safe to learn to climb a pylon yet and until that day comes I think I will always have that fear! Being told that I will never be able to have my own children and that my life will be reduced significantly, I have been able to handle being told that, and I have come through this a lot stronger than I ever thought I could. I think if you had known me as a teenager you wouldn’t recognise me today. I had always been independent but at the same time I was so insecure, I hated being on my own and I always felt such a weak individual. Having a year out before I went to uni really helped me and by moving away I started to learn who I was really all about. The one positive trait I can take away from having PH is I am glad to know that I am actually quite a tough cookie and I can deal with most things that are handed to me. I have had my dark moments but everything I have been told so far I have found a way through. As my dad has said to me on countless occasions in the past 2 years - put on a stiff upper lip. I’ve learnt to master the stiff upper lip quite well I think. These are probably the most positive attributes I have learnt about myself; unfortunately with most positives, there are some negative traits as well.

Looking at my parents it was always inevitable that I would be some kind of control freak. I mean my dad has to triple check that the garage door and cars are locked before we can go anywhere. What hope do I have?! When I met Andy he was so laid back and just had this relaxed style about him, no worries. I always envied him for that and for the first 2 years of our relationship I followed his lead, giving up my control freak ways and just going with the flow. I even carried on with this style into the diagnosis but eventually I could feel myself slipping from the ‘no worries life’ to ‘shit I worry about everything’. Having any disease is hard, but not knowing why you have it, I think is the worst. You can’t put it down to any reason - Oh I did this when I was younger, or I ate this, or drank that, or this resulted in me getting PH. I am a mystery to the medical profession; they can’t give me a simple shred of insight into why it was me that got this. Therefore, I have become this paranoid woman who over analyses everything, in case it results in me getting worse, or, worse still, developing another disease.

Until August 2015, I was getting to grips with how to live with the disease and apart from the odd set back, I was responding well to treatment. Since then, I have had a very up and down 6 months. In hospital, with many unplanned visits, mainly back on a monthly basis for one reason or another, then there was the talk of transplant which just started to bring all my negative fears to one place. I ended up watching one Friday night three episodes back to back of the ‘Gift of Life’. Whilst it was a great series and showed the positivity of organ donation, it was so scary watching it, whilst thinking at some point this could be me in the same position as these other people. For the last few months, I have found myself getting really impatient and snappy at the slightest thing. I can’t seem to shift the negative thoughts of my future and what this will look like.

Not one to normally cite an America statistic, but I have struggled to find a UK equivalent so bear with me and hopefully you will get the jist of my point. The divorce rate in America is 42%; for those with a chronic illness the divorce rate is 75% and even higher the younger you are to have a chronic illness. Granted, I won’t appear in that statistic for two reasons, firstly I’m not American and secondly I’m not married. However I thought it important to share these statistics as people don’t understand the real pressure and strain living with someone who has a chronic illness. Of course it’s bad for the person that has the disease, but it’s probably the same or even worse for the person who lives through it day in day out. They watch the person change in front of them and whilst they can be there to wipe the tears or carry them to bed they have the daunting future ahead without that person.    

Unfortunately, after a very tough decision Andy and I have split up. I’m not one to normally publicly announce feelings or situations, especially to the outside world, but as this was directly affected by PH and having started to write a blog about PH, I felt I couldn’t not mention it. Since being diagnosed, I have had so much support from family, friends and even strangers who I have never met, but have heard my story and want to pass on their best wishes to me. It’s been a real help and given me this sheer determination that somehow I have to beat PH. (I’m still not sure how I will do it but I’m not going to let it defeat me).  Andy, on the other hand, did not feel this same support, whenever he was asked anything it was “how is Gemma coping with it all”. To date, he has only been asked directly by 4 people “how is HE doing with it all”. I mention this as I think it is important to share. Not for anyone to feel guilty that they didn’t ask, even I didn’t at times, but it’s just the nature of us as human - your emotions tend to go straight to the person that this is happening to, rather than the one who is supporting the person.

I won’t lie; the last 6 weeks have been one of the toughest months of my life. I even think being told I had PH was easier to hear than knowing that Andy and I are over. Daft isn’t it, I can’t change the PH diagnosis but yet I find it harder going through a break up! I am currently going through a whole mixture of emotions, which is exactly what happened 2 years ago when I got diagnosed with PH, but I got through it then and I have no doubt I will get through this. I have had such amazing support from my sister, mum and dad, my best friends Katie, Lyd, Vicky and Amie  and my work colleagues who have been great lending me a sofa during the week. Everyone says to me time will heal. Unluckily for me, I’m an impatient bugger (get that from my dad) so I am removing myself from the situation and heading out to Australia for the next 3 months to go and see Katie with her new addition to the family, Benjamin. Trying to find a positive in the last month has been hard, but I am delighted to say, my health has shown that I am probably at the strongest I have felt since being diagnosed. Ironically, my heart is weak, but even heartbreak can’t make it any worse!! 

I have quite a few fears of which some of them have come to the surface in the past few years. I think it goes back to a control thing or lack of and therefore exaggerates the fear even more. One of the fears is flying. Silly I know, I have travelled the world by myself and been on countless flights alone but still it’s always been something that I hate. Since having PH I have been on a few flights, building up my hours each time to check I am ok on the flight. Physically I have been fine, but my issues have been more mental. When we flew back from Florida last November I got myself into such a state of panic that this in turn affected my breathing which then made me instantly think my PH was getting worse and think how was I going to survive the remaining flight at 40,000ft?? I came off the flight saying I would never fly again! So when I decided I needed to do what I do best and head off to warmer climates I thought I need to face this latest adversity head on. So I booked myself on to the Virgin Atlantic Fear of Flying course. I headed to Birmingham Airport to spend a whole day with 100 strangers all who have a fear of flying. It was a great day and ended with me on a 30 minute flight and I managed to not have a panic attack, and with some controlled breathing techniques I learnt and watching the “horizon” of a water bottle I am ready to board the flight to Dubai and Melbourne and head off to exotic places.

So I have lots to look forward to in the next few months. It just goes to show fate has a weird way of turning things on its head! There was me, planning a wedding and now I’m planning my Aussie adventures, at least this way will be cheaper!! My PH centre at Sheffield have given me the ‘all clear’ to fly and I have my 300 Viagra tablets to take through the airport, will be an interesting conversation if I get stopped at customs! I am back just in time to welcome my new nephew and then will be heading to London for a few weeks to help Leah out with two young ones. I will also get to spend time with my two best friends this summer, who live on either ends of the world, so I have lots to look forward to. If anyone fancies setting me up on a blind date I’m all ears!!  

2016 wasn’t the year I thought it would be. But that’s the beauty of it all, I suppose, life would be boring if it was meant to go the way we all planned.

Lots of Love,

Gem xx

PS. I have a beautiful wedding dress for sale if anyone needs one!