“I’m not scared now there’s a safe place to go”

I'm an avid collector of many things. As well as keyrings and stamps, I collect diseases. My main one is mixed connective tissue disease (MCTD) . From that I have pulmonary fibrosis, which is a restrictive lung disease that causes scarring of the lungs and stiffening over time. Unfortunately, there's no cure apart from a double lung transplant, which I was rejected for in 2016.

I had a pretty normal life up to the age of 16, when the MCTD started. I was your typical happy, larger-than-life teenager. The illness started with me not being able to make a fist. They did a chest X-ray and found black dots on my lungs, which had stopped growing.

I should mention that I also have complex post-traumatic stress disorder (PTSD) caused by my dad's alcoholism. Between the ages of 18 to 21 it was the most difficult time at home. I basically had to stay in to make sure my dad wasn't drinking.

Then, when I was 21, I met my husband, David. We worked together in the jewellery quarter and started dating in August 2011. We became besties and decided to get married. Two weeks before the wedding, in August 2014, I had an urgent rheumatology appointment because lupus had started to take over my body. If I didn't have chemotherapy, I wouldn't have long left.

I asked them to wait two weeks, because I wanted to fit into my wedding dress. After that they could do what they wanted. I started chemo once we were married and was on it for six months.

Soon after that I had a scan which showed fibrosis in my lungs. I was put on oxygen. It's normally a disease that people over the age of 50 have, so they didn't quite know where to put me as I was still only 25.

Over the years, as my condition progressed, my oxygen needs have increased. In August 2016, I was assessed for a double lung transplant. I was told that while I was ill enough to have the transplant, I was also too ill – my oesophagus lacks motility, which means food doesn't go down as it should and acid from my stomach could leak into my lungs.

The world was swept from under my feet. A lot changed in that moment. My declining health would mean we couldn't have children.

In February 2022, I was also diagnosed with pulmonary hypertension. From then on, I've been on full-time oxygen. I was given a prognosis of four years – unfortunately, there is no cure. And here I am now, living life on the edge.

I still can't get into my brain that things have progressed so quickly. Sometimes you just want the world to stop so you can enjoy it a little bit more. It doesn't scare me like it used to. Right now, my body is suffering, so I'm looking forward to the other side of it, if that makes sense.

The only way I can describe my breathing is if you put a straw in your mouth, hold your nose, then try to breathe in and out of that straw. When I'm out I have to use my wheelchair because I'm on eight litres of oxygen. That makes me housebound. I bake really good cookies, though. I don't like to brag, but I make great cakes.

You just kind of adapt. That's what I've done over the years. My life is constantly adapting to things. The only thing that bothers me is when my husband accidentally steps on the oxygen pipe and I nearly faceplant on the floor! I've done it to myself a few times as well.

My husband is amazing. He's my best friend. He knows when I'm struggling. He's very aware. Because I'm on immune suppressants, I have to stay away from people with colds or flu, so we have to be very aware of who comes into the house. He's very supportive.

My mai, or mum, is amazing. She's very emotional about this stuff, as expected as it's her child who's going through it. I also have an amazing relationship with my nephew Alfie, who is my absolute lifeline. I love him with my whole heart.

When things happen that change your perspective on life, you don't ever think that something so little could make you dream again. Alfie has magic in him, he really does. He's just everything to me.

My Marie Curie Nurse, Jenna, comes out to me every month and does check-ups. She helps me with pain management, asks me how I've been, if there's anything I need, stuff like that. I had to reapply for Personal Independence Payment (PIP), even though I'm terminally ill, and she helped me with that. PIP helps with the hospital appointments and travelling.

I can't describe the stress it of it. Because I'm, as my mum says, 'a ray of sunshine', people think I can deal with day-to-day things, but the fact is, I'm dying. The Department for Work and Pensions (DWP) called Jenna and asked: "Is Jyoti actually under palliative care?" It makes you feel like you're not entitled, or you're a fraud. Nobody would ever wish themselves to be ill, let alone terminally ill.

Jenna also supports my husband and my mum. When I was having issues with my therapist she asked Chris, a psychologist at the Marie Curie Hospice, West Midlands, to speak to my team. Chris was amazing. When you're on the journey to the end, you need to feel as though you have somewhere you can go that feels safe, that feels home, and that for me is how Marie Curie feels.

I feel supported, I feel safe, I know that if anything happened to me that my husband and mum would be safe. I think for me that is the biggest thing that I could ask for.

I'm doing a fundraiser for the hospice called Chaiwali, which means tea lady in Punjabi. I'm Indian – obviously, with the name Jyoti. I wanted to do something special for Marie Curie and I love baking cakes. So, I'm doing an Indian-inspired coffee morning. It's going to run over two days because I get tired. I'm hoping my little Alfie can volunteer, and my husband's going to be there too.

What people don't seem to understand about hospices is, it's not just end of life – it's how those with life-limiting conditions have some form of life, and I feel that that's how Marie Curie has helped me. By giving me that encouragement that I can still live knowing I'll be supported to the end.