We have reached September, but despite the rare heatwave England recently experienced, we are out of the Summer season and into Autumn. It won't be long before the clocks go back and the morning and evenings get darker! I have already seen the 'C' word of Christmas being mentioned in places and online!
Terry and I have had a great summer this year. And to name a few things we have done... We have visited friends, holidayed to Cornwall and took Izzy with us, tried our hands on the pottery wheel, went on a private helicopter ride, saw the musical Blood Brothers and spent the day in London. Plus I have got involved in a few research studies for Pulmonary Hypertension. Let's also throw in a few PH clinic appointments in the mix too!
Our holiday to Cornwall was fantastic. We decided not to go abroad, but to have a staycation instead. This meant we could take Izzy, there were no travel insurance costs, and having the car meant we could drive everywhere and take the wheelchair wherever we ended up. The weather was great and we had a jam-packed week. To find out more about our holiday and disability access, you can read more on my holiday blog - Cornwall 2023.
Terry and I like to go on date nights, whether it's staying at home playing games or going out doing an activity or having a meal. We feel date nights are important in a relationship and its a time to ourselves, no phones, just us two enjoying each others company. We decided to try something new and tried our hands on the pottery wheel. It was great fun, and we are looking forward to painting our pots very soon. I will post the final outcome, if they're not too bad, haha!
For Terry's birthday, I bought him a private helicopter ride. We finally booked the flight in July and after I got the all clear from my PH specialists, we both boarded the helicopter and enjoyed a flight across the county of Surrey.
As many know, I do love seeing a musical. We recently went to see Blood Brothers, which brought back memories for both of us, as we had to study the storyline for our GCSE English. It really is a fantastic musical, I love the music and I enjoyed singing along to the classic, 'Tell me it's not true' - would highly recommend putting this show on your 'must see' musicals list.
Terry and I realised that every time we go to London, it's for a hospital visit for my PH clinic, so we decided to have a full day of exploration. With my oxygen in tow, we went on the Emirates Cable Car, had a picnic in Greenwich park followed by a visit to the Royal Observatory and finished the day at the London Aquarium. We went to all the accessible friendly underground stations and made the most of the London transport to get to each attraction. The sun was shining and we had a fab day.
I've recently been getting involved in more PH awareness projects, as well as taking part in PH research studies. For the past couple of years, I have been a patient representative for the PVRI and I have been a part of many exciting PH projects, which I'm looking forward to sharing once launched.
We have had a lot of fun! I am very fortunate to have been able to enjoy a lot of things and it is mainly down to my new Portable Oxygen Concentrator, which has come with us everywhere. It is a fantastic device and I get a lot of use out of it. It has definitely helped me get through any busy days. My symptoms are a lot more prominent now and I do get breathless very quickly. I am getting older, so it is something which I have to get used to, but I'm adjusting to it well and know my limits. I have to remember that each time we have days out, it is followed by a few days in bed, with strong painkillers, due to my chronic pain and on oxygen to help myself recuperate.
I have also been on Tadalafil for a couple of years now and it appears to be doing its job alongside my other medication, Macitentan. I still visit the Brompton Hospital for PH clinic every 3-6 months and my PH team continue to be the best - always supporting and encouraging me to live life to the best of my abilities.
We are now heading into Autumn, and my flu vaccination and covid booster are booked for next month. Winter is a nightmare of a season for me and I usually end up catching a cold/cough, which 9 times out of 10 become a chest infection. Fingers crossed I can fight any germs this year and stay out of hospital!
Also this month, I have started a new business venture. I am very fortunate that I am able to work a few hours a week and contribute what I can to the household. Having my own business means I can choose my own hours and work around my health needs and hospital visits. I love working as a Makaton Signing tutor and Music Therapist in Essex. It is such a rewarding career and I am glad I can help and support others in need through my passion of music. If you are able to, I would love it if you could help me to promote my business and share it on your socials.
Thank you to everyone who continues to follow my PH journey on my Instagram and Facebook profiles. I really appreciate your support and interest in the PH community, my PH journey and the PH journeys of other PH patients. If you want me to share any of your posts, stories, fundraisers or businesses to raise money for PH, then please let me know. I will be more than happy to share!
I hope you have all had a lovely Summer and let's make the rest of 2023 a fantastic year!
Thanks for reading!