Raya Mynot was initially worried about travelling between her own family home and her fiancée’s – but the support she’s been shown has made all the difference. Raya, who has lived with PH since she was a baby, shares how they all make it work around her health…

“Meeting my fiancée Jade online through a hobby we both enjoyed meant that we did not get to choose how close to each other we lived. Ultimately, two-and-a-half hours isn’t the worst, however, when you have a condition like PH, even the smallest travel distance takes a lot of planning.

Jade decided to move to my family home in London seven months after we got together. Moving to London meant frequent visits back up to Warwick to visit her family. For the first few months I was just way too nervous to travel and stay up there with Jade, so she always went on her own. After seeing how easy it was to travel up to Warwick on the coach, it made me feel more at ease. Being around Jades family more also made me want to travel too, as weeks without seeing them got harder the closer our relationship got.

Travelling to Jade’s means I must bring my oxygen concentrator, my portable oxygen, all my medications (and extra just in case), my saturation monitor, and spare cannulas for my oxygen. Then of course, all the other normal items you pack for a couple of nights away.

My mum is able to drop us right into the coach station and help us on the coach. We have a suitcase, the oxygen (which is so heavy!), our two backpacks, and the portable oxygen. The coach company are really good and handle my big oxygen with care. Then we sit at the front on the priority seats, so I don’t have to walk to find a seat. Then once we get to Warwick, Jade’s mum or dad is there to help us off and drive to the house which is literally only five minutes away.

At Jade’s we used to have her big brother Josh’s bedroom since Jades bedroom was super tiny and had only a single bed. However, Jade and her family have recently redone her whole room just for us. We have much more room, and it also means Josh gets his bed back (thanks again Josh for always letting us stay in it!)

<Raya is pictured below, on the right, with Jade and Josh, and their baby nephew>

Although I already felt comfortable there before, having our own space put my mind at ease even more. I always felt bad when I got a migraine and had to take up Josh’s room during the day, and having the oxygen taking up space in his room was a worry too. Now I also leave my big oxygen at their house – it just slides down by the bed and is there ready for when I come. I also have a drawer with spare cannulas in too. We also have an emergency stash of my medicine in their kitchen in case I forget any and it runs out whilst I am there.

When I’m at Jades her family are amazing – they make me feel so much a part of the family and don’t treat me any differently because of my PH. Jenny (Jade’s mum) is always getting in my favourite safe snacks, and Coca Cola in case I get a headache too.

Josh always keeps me topped up with hot chocolate and cherry Lucozade (my ultimate favourite).

One time I was stressing because I forgot to charge my little oxygen and we were going out shopping, but Jamie (Jade’s dad) didn’t even think twice and got my big oxygen from upstairs and put it in the boot of the car. It was so quick, and so calm, that it didn’t even give me a chance to panic.

Joel (Jade’s youngest brother) reminds me of my own little brother Max, as he’s so considerate and understanding of everything. I met him when he was still in high school. I was worried having a chronic condition would affect our relationship, because I know PH can be complex to understand and he was still young. However, I was incredibly wrong. Even right at the start of when we met and when we wanted to go to Thorpe Park together, he knew I would need my wheelchair and took it into consideration in all our plans.

That day was one of my favourites; Joel didn’t even acknowledge my wheelchair, and he included me in everything he spoke about – even though he was walking and I was wheeling! We even went to a Billie Eilish concert together recently and we had to be in the wheelchair section; he was so happy with how close our seats were there.

I’ve grown so close with Joel over the last couple of years, even though he has a habit of stealing all the Domino’s garlic and herb sauce when we get pizza!

I’m also never short on cuddles when I’m at Jade’s house as their dog Pepsi loves a good snuggle under the blanket with me. We love our daytime naps together.

We always make sure that we visit Jade’s Nanna when we are there, and that’s truly one of my favourite places to be. I feel so incredibly blessed to still have both of my Nans – they are my favourite people ever, and I cherish every second I have with them. But now to also have Jade’s Nanna in my life makes me feel so grateful. I feel so loved and welcomed when I’m around her.

We also get to see our baby cousin Louie when we go there, as his parents Matt and Hattie always make sure we get to spend some time with him before we have to go home. He’s one already and always has a new milestone to show us. He will be walking next time we see him!

Jades’ family truly are the best and I really do miss them so much when we aren’t with them, I feel so lucky to have such an amazing second family.“