On Sunday 13th November, I reached another milestone and turned a year older. I am very fortunate to be nearly 15 years post PH diagnosis. How has it been that long?! I can't believe how much I have achieved in that time, despite being told at diagnosis I only had months to live.
For my birthday, Terry and I went to Paris. We had a wonderful time and a huge thanks to Terry pushing me around in my wheelchair. It meant I was able to enjoy and experience Paris without getting too tired, too quickly. We went by Eurostar which was a very pleasant and stress-free journey! Travelling with PH isn't easy, but travelling by train was much easier. We took my oxygen concentrator and my wheelchair, but we didn't have to worry about a fit to fly letter and filling out oxygen forms. We, of course bought travel insurance for both us, me being over £100 more than Terry, but it's important and a must for everyone when travelling abroad. Thanks to the PHA UK website, they have a list of recommended travel insurers and I shop around to find the best deal.
We went up the Eiffel Tower and highly recommend booking your tickets in advance. The views were amazing and we were very lucky to have clear skies and sunny weather. On Saturday night we had booked a 3-course dinner cruise with Bateaux Parisien Cruises. We got suited and booted and enjoyed a very luxurious and romantic cruise down the River Seine. The food was amazing too and again, we highly recommend this, don't forget to book in advance. On the Sunday, we got up early and went to The Louvre. We took the standard, "touch the tip of the Louvre" photos, haha and headed on in. Terry and I aren't big art lovers, but we appreciated the art we saw in the museum and enjoyed the experience very much. We saw the famous Mona Lisa and the Venus de Milo statue. We also saw the Notre Dame, due to the horrifying fire, it is still being reconstructed and so we wasn't able to visit. It says it will reopen in 2024, so let's hope tourists will be able to visit this magnificent building again soon. Overall, we had a fantastic weekend in Paris. The French were very welcoming and friendly and if we came to a few stairs in the streets, we were asked by many strangers if we needed any help with my wheelchair. Many memories made in the city of love with my Hubby. Paris, you were beautiful!
Here's some disability info which I feel you may find helpful for a trip to Paris:
I haven't been too well lately, so I was pleased we were able to go to France. I went into hospital on 18 November for a CPET (Cardio-Pulmonary Exercise Test) If you ask any PH'er, they will agree that this test is horrible and very difficult test. I did the best I could and will get my results at my next appointment at the Royal Brompton this month. “𝘈 𝘤𝘢𝘳𝘥𝘪𝘰𝘱𝘶𝘭𝘮𝘰𝘯𝘢𝘳𝘺 𝘦𝘹𝘦𝘳𝘤𝘪𝘴𝘦 𝘵𝘦𝘴𝘵 (𝘊𝘗𝘌𝘛) 𝘭𝘦𝘵𝘴 𝘺𝘰𝘶𝘳 𝘥𝘰𝘤𝘵𝘰𝘳 𝘴𝘦𝘦 𝘩𝘰𝘸 𝘺𝘰𝘶𝘳 𝘭𝘶𝘯𝘨𝘴, 𝘩𝘦𝘢𝘳𝘵 𝘢𝘯𝘥 𝘮𝘶𝘴𝘤𝘭𝘦𝘴 𝘳𝘦𝘢𝘤𝘵 𝘵𝘰𝘨𝘦𝘵𝘩𝘦𝘳 𝘸𝘩𝘦𝘯 𝘺𝘰𝘶 𝘦𝘹𝘦𝘳𝘤𝘪𝘴𝘦. 𝘋𝘶𝘳𝘪𝘯𝘨 𝘵𝘩𝘦 𝘵𝘦𝘴𝘵, 𝘸𝘦 𝘸𝘪𝘭𝘭 𝘨𝘦𝘵 𝘺𝘰𝘶 𝘵𝘰 𝘸𝘢𝘭𝘬 𝘰𝘯 𝘢 𝘵𝘳𝘦𝘢𝘥𝘮𝘪𝘭𝘭. 𝘞𝘦 𝘸𝘪𝘭𝘭 𝘮𝘦𝘢𝘴𝘶𝘳𝘦 𝘩𝘰𝘸 𝘮𝘶𝘤𝘩 𝘢𝘪𝘳 𝘺𝘰𝘶 𝘣𝘳𝘦𝘢𝘵𝘩𝘦, 𝘩𝘰𝘸 𝘮𝘶𝘤𝘩 𝘰𝘹𝘺𝘨𝘦𝘯 𝘺𝘰𝘶 𝘯𝘦𝘦𝘥 𝘢𝘯𝘥 𝘩𝘰𝘸 𝘧𝘢𝘴𝘵 𝘺𝘰𝘶𝘳 𝘩𝘦𝘢𝘳𝘵 𝘪𝘴 𝘣𝘦𝘢𝘵𝘪𝘯𝘨 𝘸𝘩𝘦𝘯 𝘺𝘰𝘶 𝘦𝘹𝘦𝘳𝘤𝘪𝘴𝘦.” Afterwards I was given a heart monitor as my symptoms have recently worsened, causing a lot of heart palpitations. When you get a heart monitor you always hope something happens, so it can be recorded. Fortunately, as I had it on for a few days this time. It picked up a few "heart" events, so hopefully they've got some good recordings and again, I will find out the results at the next appointment.
- The UK Blue Badge is NOT accepted in France. Take a consultant letter with you for proof of PH and disability.
- Eurostar: Special assistance available. Queue jump for the disabled too. Very helpful and friendly staff. We booked a wheelchair and companion seat. Whilst Terry was seated in a train seat, I stayed seated in my wheelchair for the whole journey there and back. A very pleasant journey with assistance getting on and off the train.
- Eiffel Tower: Wheelchair queue jump. Lift for everyone up to the first and second floor. A very helpful and supportive disability team. Plenty of room to push someone in a wheelchair on the first and second floor. Disabled toilets available.
- The Louvre: Wheelchair queue jump. All floors accessible friendly - lifts to every floor. Go early to avoid big crowds. Pick up a floor plan - the lifts are VERY confusing - we got lost! Haha! Disabled toilets available.
- Metro: Unfortunately this is NOT disabled friendly. It doesn't have any wheelchair accessible stops, like the London Underground. We took the Metro to get to the hotel and I was on oxygen for the rest of the day. Lots of steps, up and down, with NO lifts or ramps.
- Bus: Has a wheelchair ramp to get on the bus and wheelchair space when on the bus. We used the bus to move around the city. A single ticket for all public transport is €1.90. I'd advise buying a book of 10 from the vending machines - it works out cheaper!
I recently took part in a new study with the lovely Fran Kissack. As part of her PhD studies, she is trying to understand more about what hope is like for PH patients who are in hospital. It is a very interesting study and I encourage many PH'ers to get involved. It's all anonymous and it is interesting to see the results. I was surprised by what hope meant to me, I have never looked into it in greater detail, but I'm glad I got involved. You need to answer some questions before taking part, but all that is involved is reading through a set of statements about hope, and arrranging them in order of importance, all from your own home. To get involved click here.
Work is winding down for Christmas and we are looking forward to our work Christmas meals. We are very excited to have Terry's auntie from Australia visiting for the next few months, so it will be lovely having her join us and my Mum for the festive season. Like many with breathing conditions, this cold air is not doing me any good. The cold air hits my chest quite quickly, so I am doing my best at keeping as warm as possible. Fingers crossed I can stay well and have a winter without a chest infection, least I've got antibiotics on standby!
Thanks for reading!