It’s been a busy few months since my last update, and I’m excited to share what we’ve been up to. We’ve been enjoying some time with Terry’s aunt, Fille, who’s over from Australia. Our first adventure together, with her friend James, was a lovely weekend away at the end of September, staying in a beautiful farmhouse in the New Forest, Southampton. It was very peaceful with morning visits to feed the neighbour’s horses, forest walks with Izzy, and plenty of delicious food. The perfect little escape.
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We celebrated Fille’s birthday with the Call the Midwife tour at the Historic Dockyard in Chatham. As avid fans, Fille and I loved every moment, from the sets to the costumes. Terry enjoyed himself too, especially exploring the ships and submarines. The venue is very accessible, and because it’s a 90-minute walking tour, Terry kindly pushed me around in my wheelchair. With the right documentation, the venue also provides a free carer/companion ticket, which is always helpful.
November is always a meaningful month for me, beginning with PH Day UK on the first Friday, in this case, the 7th. It’s a day where the PH community comes together to raise awareness of Pulmonary Hypertension, our rare and complex condition. I always hope that something I share helps someone learn even a little more. As I wrote in my closing post: “Your support really makes a difference! Pulmonary Hypertension is a rare, complex condition, so every bit of awareness matters. We will continue to pray and hope for everyone bravely battling PH, for better treatments, and in memory of those we’ve lost. Together, we keep hope alive. Remember, PH is a part of us, it doesn’t have to be who we are!”
The following week, one of my mum's best friend's celebrated her 80th birthday, so we joined her for an afternoon tea to celebrate. And on the 12th, I had my six-monthly PH clinic. It was a long day of the usual tests, but overall my consultant was happy with how I’m managing. I’m not great, not terrible, but I'm doing okay, and for me that’s enough. My diuretics have been increased to help with water retention as the bloating is so frustrating! My blood tests showed I was low on iron again, so I’m having an IV iron top-up this week. Hopefully that will keep me going until my next clinic in May.
Then came my birthday on the 13th. Every birthday is a milestone when you live with PH, especially after being told at diagnosis that I wouldn’t reach 18. So turning 35 felt emotional, incredible, and something I’m very grateful for. Again, thank you so much to everyone who sent cards, messages and birthday wishes, they were very much appreciated.
To celebrate, we went big! This was our first trip abroad since Paris for my 32nd birthday. Travel insurance is always the main reason, as mine is about five times the cost of Terry’s, but it’s essential, and we would never travel without it. We booked Premier tickets on the Eurostar to Amsterdam for a long weekend and travelled with my portable oxygen concentrator and wheelchair. The Eurostar staff, both in London and Amsterdam, were fantastic. They were very helpful, friendly, and made the journey seamless. As an accessible ticket holder, we were able to relax in the business lounge, and boarding was easy with ramp assistance. We also enjoyed a delicious meal and a few drinks each way.
In Amsterdam, we stayed just outside the city. We explored museums, wandered through the Red Light District during the day, went to a Stroopwaffle making experience and took an evening canal cruise after fine dining at a traditional Dutch restaurant. The food was wonderful, the city was beautiful, and the weekend was everything I hoped for. It was another bucket-list destination complete.
I am stepping into 35 hoping for good health, happiness, and lots of memories waiting to be made. For now, Terry and I are staying busy, my business is doing well, and we’re looking forward to joining in some festive events. We have some very exciting plans for the year ahead, and I can’t wait to share them with you soon. Finally, I leave you with the poem I wrote for Invisible Disabilities Week which reached over 20,000 people! Keep safe and warm and hope you all enjoy the run-up to the Christmas festivities... It's never too early for a glass of mulled wine and mince pie! 😁
To celebrate, we went big! This was our first trip abroad since Paris for my 32nd birthday. Travel insurance is always the main reason, as mine is about five times the cost of Terry’s, but it’s essential, and we would never travel without it. We booked Premier tickets on the Eurostar to Amsterdam for a long weekend and travelled with my portable oxygen concentrator and wheelchair. The Eurostar staff, both in London and Amsterdam, were fantastic. They were very helpful, friendly, and made the journey seamless. As an accessible ticket holder, we were able to relax in the business lounge, and boarding was easy with ramp assistance. We also enjoyed a delicious meal and a few drinks each way.
In Amsterdam, we stayed just outside the city. We explored museums, wandered through the Red Light District during the day, went to a Stroopwaffle making experience and took an evening canal cruise after fine dining at a traditional Dutch restaurant. The food was wonderful, the city was beautiful, and the weekend was everything I hoped for. It was another bucket-list destination complete.
Thanks for reading!