One of the worst parts about being ill is when I am on a decline. For six months I could feel myself deteriorating every day. Slowly being able to do less and less. Slowly getting more and more breathless. Slowly getting weaker and weaker. I felt helpless. It is a scary experience, as you are … More Enjoying Some Good Weeks….
It’s a very strange feeling starting the transplant assessment journey. I feel like my life is in the hands of someone else. The final answer could be a yes and the potential to save my life, or the final answer could be a no and that’s it, the end. I’d deliberately not really thought about … More The Start of Transplant Assessment
My husband is a runner. A crazy, keen, committed runner. He can stumble out of bed hungover and still manage a 10 miler before I’ve even made it downstairs. He can put his suit in his backpack and run a marathon home after a full day at work. He has even twice run one hundred … More The Benefits of Running
I’m a big fan of Gareth Malone. If you’re not familiar with the name, then he’s the young TV choir master that converts the roughest of voices in to a beautiful song. Over the last ten years, we’ve watched him train hundreds of awful singers, and be responsible for the Military Wives phenomena and the … More A Concert for the PHA
When I was working I used to keep track of my life in my head. I didn’t need a diary, I just about managed to work out where I was supposed to be and when. I didn’t really plan too far ahead, so the months calender in my head was sufficient. At the beginning of … More Juggling Fun and Rest
I fear my chances of competing in the Olympics this year have just been squashed. I am now so pumped full of steroids, that I’m not going to pass any drug doping blood tests. And my slowly rounding “moon face” will probably also give it away! When Phil and I lived in Ethiopia, we were … More Pumped full of steroids!
Since I was little I’ve always had active holidays. As children we would always go away to places dotted around the UK and so our vacations were filled with day trips to theme parks, castles and adventures. If we went to the beach, we wouldn’t be creatures of the sun, instead we would be out … More A ‘Relaxing’ Easter Holiday Away
This week marked the third anniversary of my initial dramatic collapse, which turned out to be Pulmonary Arterial Hypertension (PAH). In a strange coincidence, this week will now also be the date when I found out the name of a second lung condition I am also suffering from. At least it makes anniversaries easy to … More A Second Diagnosis
My Mum turned 60 last week. We’ve been awaiting this event for months now, as my Mum has been brimming with excitement about it since Christmas. Having never had one before, she was planning a huge party with nearly 200 people in attendance (200 people- she has far more friends than me!) For the last … More My Mum’s Party
What a difference a week makes. This time last week, I was feeling breathless, sick and weak, everything was taking me so much time to do and my activity level was slowly dwindling back to zero. My transplant referral had knocked me down emotionally, and together they were threatening to steal my hope and positivity. … More Getting Oxygen
We Can Adjust The Sails 