The support I have received from my amazing husband, family, friends and colleagues as well as people who really don’t know me very well has been awesome, and I really couldn’t have got this far without them. I have set up this fundraising page because everyone always asks what they can do to help, plus I’m increasingly discovering how expensive all the kit and adaptations I’m going to need once I get back home are. What I’m entitled to from the government will only go so far, and a wheelchair user of many years recently told me to”allow at least £5,000 per item for anything half decent.” I will certainly need a wheelchair, showerchair, standing frame, FES bike, specialist physiotherapy and adaptations to our bathroom, kitchen and entry doors. Further to this, specialist facilities such as Project Walk in America, which as the name suggests focus on getting people walking rather than eg wheelchair skills, are also very appealing, but don’t come cheap as you might imagine.
This has obviously been life changing for me and those closest to me, and anything you are able to donate to help me reach my potential will be hugely appreciated.
Find out more about me and my story below if you’re interested.
Thank you so much.
I’m 32, I live in London with my husband of nearly 3 years and work in PR and marketing. I did a lot of horse riding as a child and played a bit of lacrosse at uni. More recently running home from work - Oxford Circus/Holborn to Bermondsey - and twice weekly yoga had been my fitness regime. Was I super fit? No. Could I have done more? Undoubtedly. But I was a fit and healthy young woman enjoying the first few years of married life, excited to become a mummy in the not too distant future (we were due to start IVF in July).
While I’d never heard of a spinal infarction and didn’t know that paralysis also paralysed bladder and bowel, I’m not a stranger to hospitals or operations. Here’s a whistle-stop tour of my medical history:
Age 2 - diagnosed with hydrocephalus (water on the brain) and lumbar shunt fitted to drain fluid from the brain
Age 15 - 8 hour operation to secure 6 titanium screws and a rod to my spine to correct severe scoliosis curvature
Age 22 - lumbar shunt re-fitted (twice) following severe headaches, vomiting, loss of vision and periods of leg weakness
On Saturday 3 March whilst at Occasional Home homeware event in north London, which I’d been really looking forward to as I love all things interiors, I came down with a headache and lower back pain that wouldn’t shift. After going for a lie down in the organisers’ office I got an Uber home. The next day my husband and I went to A&E at King’s College London as that is where I’d had the shunt revision 10 years previously and the symptoms felt the same. After a long wait without a bed that resulted in me vomiting with my head slumped against the wall and giving a 9.5 out of 10 pain score, I eventually got to lie down and the lumbar puncture I’d been craving. Unlike previously when my lumbar punctures had recorded very high pressure but also afforded me huge relief, this time the pressure wasn’t particularly high and the relief was very short lived. Nevertheless, the Neurosurgeons agreed to replace the shunt. When they operated a few days later they came to the conclusion it was working and merely “repositioned it slightly”.
I expected to instantly feel better and be out of hospital within the week as I had done 10 years before. However, what was to ensue was close to a month of weird symptoms and inconclusive test results as the doctors searched for a cause and diagnosis. I don’t remember a lot of it as I was in so much pain and delirious from not being able to sleep (most uncharacteristic for me), so it’s everyone who had to witness the heat and pain rashes and agonising muscle spasms that that I feel sorry for! Acute nerve damage in my hands and arms resulted in the doctors eventually suspecting an auto-immune disease (my anti-bodies attacking my body essentially) and prescribing an IVIG drip. Initially I said no as I didn’t like the idea of other people’s blood going into me, but episodes of losing power in my legs when walking to the toilet scared me that my legs were going the same way as my arms, so I agreed.
On the forth day of having the drip, I was walking back to bed from my chair with a nurse - literally 5 steps - when I lost all power in my legs this time and it felt like a light switch flickering and then being turned off in my lower back. My godmother found me on the bed with my eyes open but not responding and she called the alarm. Again I don’t remember much from this time, but the day after an MRI confirmed a spinal infarction had occurred . The doctors tried a steroid drip for a few days to reduce the inflammation, but it didn’t work miracles other than making me crave Victoria sponge and Percy Pigs! About a week later when they discovered that I had almost gone blind in my right eye, they did an ICP bolt; a hole drilled through the skull under (local!) anaesthetic so that they could test the pressure directly in the brain rather than via lumbar puncture. It showed alarmingly high pressure in the brain, so they did an emergency operation to fit a new shunt draining directly from the brain the following day, and then had to revise it the day after that.
Ever since the new shunt I’ve felt indescribably better in myself, but sadly the spinal damage was already done. I can’t help but wish the doctors had done the bolt weeks earlier and figured out the high pressure then, or even just replaced the shunt in the first place like they had done 10 years prior. But I had no choice other than to helplessly put my health in the hands of strangers who I understood to be the top experts in their field. And now I am where I am.
For the first few weeks following my spinal cord injury I totally disengaged from the lower half of my body; not looking at it, not touching it and scrunching my eyes shut and going somewhere else in my head as I was hoisted in and out of bed, turned in the night, bed-washed, my catheter emptied and the daily manual bowel evacuation carried out. I recall being in floods of tears on the phone to my husband as I’d just accidentally touched the top of my thigh and thought the muscle tone was disintegrating already. Sometimes I’m totally fine - some say too fine, and who knows if they are right - but there have been many evenings that my husband and I have hugged and sobbed at my bedside, and others where I think it’s all a sick joke and my legs will start working again. Walking up from dreams of jogging in Central Park for example, are tough too.
Slowly I am rebuilding the strength in my arms - which is essential as I’ve now got to lug my legs with me wherever I go, and let me tell you they are a LOT heavier than they look - learning to get my seating balance - not easy when you get very limited sensory feedback from your bum, thighs and feet and am already unbalanced by the scoliosis - to dress, wash, transfer between eg bed and chair and self-catheterise (I haven’t yet started on independent bowel management which everyone says is the worst part of paralysis). Having always had scrawny arms and shoulders and the aforementioned impact of scoliosis on my torso, I feel like I’ve been robbed of my best bits and left with only the sub-standard parts. Sitting in the hospital wheelchair results in almost instant backache, and it is likely that my permanent chair will need to be bespoke and sculpted to my back. My wrists also almost constantly ache as I’m putting all my body weight through them, so I’m going to try acupuncture which may help.
I am determined to work as hard as I can in the gym to strengthen my upper body so that I can be as independent as possible, as well as to maintain muscle mass in my legs by using a FES bike (electrocutes the leg muscles to make them work), and to preserve my bone density by standing in a frame for an hour a day. My spinal cord injury is incomplete (ie it is not totally severed) so it’s not impossible that I could walk again, and technology and stem-cell research is coming on leaps and bounds, especially in the U.S., so never say never.
Old age, pregnancy and parenting in my condition terrify the hell out of me, so I try not to think too far into the future. But what I do know is that returning to work, travel - Canada, Japan and Croatia are top of our list - and my passions for interior design, food and fashion will all continue, albeit in a slightly different way to how I imagined. For now, having not been home for 4 months, I'm looking forward to cracking on with the last part of the journey at Stoke Mandeville spinal rehab centre before getting back to my beloved husband and flat.
If you got this far your medal’s in the post and thank you for sticking with me! What will the rest of my journey hold? I have no idea, and what this whole episode has shown, is that you never know what's coming, but I'm determined to do whatever it takes to be happy.