Sue was a contented 22 year old with her whole life to look forward to. Then she was diagnosed with a rare and incurable condition that changed everything. The doctors told her she should not have children. So she ignored them. She told Rachel her incredible and inspiring story…
I’m sure life wasn’t perfect before I became ill but looking back it feels like it was. I graduated as a Paramedic in 2007, my dream job! I met my now husband, Andy, at university, fell in love and we moved in together in 2008. We had two dogs, two incomes, enjoyed walking in the Peak District, we went on holidays in Andy’s little sports car – life was on the right track. I dreamed of our wedding, our children, our future house…
Then it started to go wrong. It started with chest pain, after a night shift in 2008. I went to my GP and found out I had a heart infection. I was admitted. From that point on, a train crash of events happened. I walked into the hospital as a fit, 22 year old paramedic and 6 months later came out in a wheelchair. I was told to take 6 months off work, but that I would get better. It took time, but I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) a serious, but non-life threatening condition.
We got married in Sri Lanka in April 2009, our dream wedding on the beach with an elephant! The honeymoon in the Maldives was out of this world. However, I still needed to use a wheelchair at times, I needed drug treatments and IV drugs to function. Things weren’t quite right…
I was admitted to hospital later that year. Body functions were failing, things weren’t getting better; in fact things were taking a turn for the worse. My team of no less than 11 different specialist consultants were stumped. I was transferred to the specialist neurological hospital in London; this shit just got real.
I spent weeks being tested every which way for everything; it wasn’t a pleasant or a positive experience. I was transferred back to Sheffield hospital to wait for the results. I was so unusual and interesting that loads of medical students wanted to poke and prod me. I started charging them in chocolate bars! We spent our first wedding anniversary in a neurological ward. Romantic, I know…
My consultant delivered the news: I was suffering from an extremely rare, complex neurological condition called Primary Autonomic Failure. Basically you’re autonomic nerves control EVERYTHING you don’t think about doing. Just think about that for a second: heart rate, rhythm, blood pressure, eyes, ears, swallowing, bladder, bowel – you get the idea. And mine are failing.
It only took a few minutes for her to blow my world apart. She put it into real terms:
“This is only going to get worse. There is no treatment or cure. You probably won’t get to 50. You can’t be a paramedic. I’m not sure you’ll be able to even drive. You need to move house before we let you out of hospital into appropriate accommodation…”
I gave Andy a once in a life time get out clause; if he wanted to go he could leave and I would understand, but like an idiot he stayed. We finally found a wheelchair accessible bungalow out in rural Hope Valley in Derbyshire. I had slowly dissolved into a puddle of sadness and no hope. I couldn’t function, we had no money, we were told we shouldn’t have children. In a new place with little support, this was me at my lowest. I couldn’t even get into the sports car anymore!
A good friend said one day that I had two choices: I could give up, be sad, and let this condition win. Or, I could enjoy the years I had left, and find the silver lining.
In July 2011, I found one mega silver lining: I was awarded a flying scholarship for disabled people by FSFDP. It was exactly what I needed: I needed to see I could achieve, and I did, gaining my private pilot’s licence, whist being filmed for a documentary. I’m one of a very small number of female disabled pilots. This was a huge life achievement for me.
With my new-found confidence I decided to say “Sod off” to my condition and get on with my life. So we started talking about children, scaring witless the doctors who told us not to. We both decided that it was something we wanted – and we needed to live our lives. I was now working and back driving. We went to the Cayman Islands for Andy’s birthday and I came home with Milo in my tummy.
Despite my happiness, I also felt extremely guilty and selfish: what if my condition meant my baby wasn’t healthy? What if I didn’t make it? Andy would have a newborn on his own. How would I give birth, what about my drugs, and – shit – how would I cope with baby in a wheelchair? Social services and other professionals weren’t helpful. I had to prove myself. I was assessed, interviewed, questioned. I was going to have to do this amazingly well or risk the unthinkable: Milo could be taken away from me.
Milo was born in May 2013 via emergency C-section (not due to my condition but the fact he was a huge 10lb 2oz). All was well. I went home to face all the usual new mum questions, plus I felt the extra eyes on me to see how I would deal with this small pink wiggly thing using no hands as I needed them to push my chair!
Our world almost fell apart when Milo was just 9 weeks old. My heart slowed and then stopped (thankfully this happened whilst I was in hospital). I am seriously lucky to have survived, but I spent 6 months in hospital recovering. I paid a big price for having Milo and came home to a 6 month old; I’d missed out on a lot of those first precious months of him as a little baby.
Professionals and strangers have struggled with the idea of a wheelchair mum, some found it wrong, awful for Milo, unsafe and unkind. However Milo has known nothing else; he adapted to the chair and my abilities far easier than I did. Milo is a very responsive little boy; he knows when he has to behave; he can walk to the car on his own, picks things up, and sits perfectly still on my knee when we’re moving. And I still haven’t dropped him, ever! But as he gets older I’m conscious of the fact that, even though he can help me at times, I’ve not had a child so he can care for me – it’s the other way around. I’m hyper aware of this.
I can do all the things that being a mummy entails, even with the added challenge of a broken body – and I only forget to put shoes on once in a while! When Milo couldn’t move I found it quite easy. Now he’s tall and clever enough to open doors it’s a nightmare, especially as stair gates won’t fit the doors I need to accommodate my wheels.
I hope that others don’t feel sorry for him; that he doesn’t get treated differently. I have small worries: how am I going to discipline my son when he’s taller than me? What about the play date we can’t do as I can’t get in the house? That I will be in hospital at times… Which then leads to my biggest concern, which is dying. Dying whist he is still too young to remember me; dying when he’s older and it smashing his life to bits.
There are some upsides to what I’ve been through. My condition made me conscious of what really matters: people, relationships and time. Milo and I have made me some amazing new mummy and baby friends. I try to focus on what I can do: for example, I can’t Hoover but someone else can, it doesn’t mean I’m less of a mum, it means I don’t Hoover, which is great! Free parking is a bonus! Oh and unlike walking mums, I don’t tread on any Lego!
Some people are a bit ignorant towards me. They sometimes say inappropriate things, or pat me on the head (yes that really happened). I wish I could correct them, point out the flaws of their view, but I don’t have the confidence or energy. People mean well but sometimes I wish they’d not try to help – if one more person tries to hold Milo’s hand whilst walking along, I may just run over their toes!
Having Milo has progressed my condition massively. But I wouldn’t change it for the world. I know this sounds a bit soppy, but he has made me ‘me’ again; I’m not defined by my condition. And that feels right.
On the whole, I don’t have any regrets. Oh, maybe just the one – I do regret not punching the head patting man. That’s something I definitely should’ve done!