Neuromyelitis Optica. Ever heard of it? No, most people haven’t. I hadn’t, until a few years ago.
The year was 2009.
I’d just left my job at Lincolnshire Police but was looking forward to meeting up with my old team again to go to an awards ceremony in London as we’d been shortlisted for a Personnel Today award. It was for the work I’d been doing with our HR system over the year or so prior and the other main driver/advocate/pioneer alongside me was my boss Lily (known back then as Liz). We were both excited that nearly 4 years worth of stubbornness, change and hard work was finally being recognised nationally, and also outside the Police circles. Truth really be told we were probably more excited about the chance to get dressed up in frocks and heels and party on Park Lane.
About a week before the do I heard Lily had been taken unwell. No one quite knew what happened but the basics were that she’d had a bit of a turn and was in hospital. We didn’t really think too much of this, just that it was probably a virus or exhaustion (Lily was notorious for being a bit of a workaholic and had been doing A LOT at work in the months up to this) and we all thought she’d be out in a few days and able to come to the awards.
A week went by and she was still in hospital, so we had to accept that she wouldn’t be getting her frock out and joining us. We took her along in the form of a picture and proceeded to get photos in as many places as we could to be able to turn it into a photo book for her to look at later, still thinking that she’d be up and about in no time.
However, after I had got back and before the photo book was created, I got a phone call from one of my old colleagues saying I should go visit, and I should go that day if I could. Why that day, I asked?
Because she might not make it.
Holy crap, that shit just got serious. Lily was only mid-thirties. What the hell?
I went to see her in hospital, not knowing what to expect. Probably not what I got. She was perky as hell, although I suspect she was also pumped full of a lot of drugs at that point. She was talking about work (and coming back to work, the crazy workaholic) despite also telling me she couldn’t feel any of her body from below her chest. I’ll be honest, I had no idea what to say, what to do or what was going on. And at that point, neither really did the doctors.
It was scary as hell for us, so I can’t even imagine what it was like for her:
There was a slow build up to me having my first NMO attack. It’s fair to say I was a workaholic and I’d gone through a very stressful time, however there were plans in place for a fresh new start, moving home and job – going home to Wales. NMO seemed to have other plans…
Months before my attack, I had severe vomiting. For no reason. I thought it was a migraine. NMO was having fun with my brain stem.
Then I had a tight chest. On and off for about six weeks. I thought it was a chest infection. NMO was having fun with my spinal chord.
Then I had dizziness. The GP thought it was labrynthitis. Yep. NMO was having fun at my expense.
Then, my journey with NMO took a dramatic turn. I had chest pains. Again. Tight chest pains. The paramedics thought it was a heart attack. NMO was playing havoc.
NMO is an autoimmune condition. So ironic. I was doing this to myself. Attacking myself. My brain stem. My spinal cord. In true workaholic style. I don’t do things by half.
What followed was a roller coaster ride from hell and six months all inclusive courtesy of the NHS. I can remember every single minute of every hour of every day in detail. The paralysis sweeping up from my toes to my chest; the sheer stubbornness as I thought I’d be ‘fine to go to my leaving do on Friday’. Nope. Move down to Cardiff on Sunday? Nope. Start my new job on Monday? Nope. ‘You can expect a weeks recovery for every day you’re paralysed. At least.’ Said one consultant. Nope, I’d be fine. I’d be back in my high heels in no time…
I had many diagnoses in the early few days and weeks. It’s stress. It’s a virus. It’s ADEM. It’s MS. It’s TM. The acronyms were endless. It’s Guillain Barr. It’s Devics. With every diagnosis (so I learnt after) my family was Googling like mad. I’m so glad I didn’t read the results. Especially for Devics. The prognosis for Devics was not good. It was very rare. It could lead to death usually within 5 years. It was nasty. ‘Devics?’ Said one friend. ‘Trust you to get a Designer Disease not flu like the rest of us…’
Anyway. It was Devics. Or as it was to become known as, NMO. Neuromyelitis Optica. It took over six weeks to diagnose which I now know is quick compared to others who have been misdiagnosed, often with MS.
NMO. There’s no cure. Yet. They don’t know what causes it. Yet. They don’t know what triggers a relapse. Yet. But it’s nasty. It is nasty. And without going into the Science Bit, it is weird knowing there’s little antibodies hurtling around ready to attack, when they fancy.
Anyway. I did make it to Cardiff. Albeit in the back of an ambulance. This journey, without a shadow of a doubt, saved my life. It took me into the hands of a neurologist who knew about NMO.
That was nearly eight years ago. I’ve spent more time than I care to count in and out of hospital; I’ve relapsed and become a thorn in the side of my lovely NMO team. All credit to the NHS. I’ve had my moneys worth.
I’ve learnt to walk again. Not very far or for very long. And with crutches. It’s a wheelchair job otherwise. I suffer from extreme fatigue. Not tiredness. Fatigue. Mental, physical and emotional. I have nerve pain, muscle pain, bone pain, pain pain and more pain on top for good measure. There’s lots more but I won’t bore you. Suffice to say day to day life is challenging; there are good days and bad – like everyone has. And I’m here, eight years on and still driving everyone nuts with my stubbornness. I’m grateful. Maybe not all the time. Most of the time. I’ve realised what’s important in life. And I couldn’t have got through this without the support of my inner circle; you know who you are. Thank you for all your love and care and patience over the years.
My goals? I had four goals when I was in hospital – to walk, to drive, to go back to work and to wear high heels. I’ve achieved them all…well, the last one is achieved in part. They are my ‘Sitting Shoes’.
So very little is known about this condition.
The science bit: Neuromyelitis Optica is a serious disabling condition affecting the nervous system particularly the optic nerves and the spinal cord . The most seriously affected persons can be paralysed in all four limbs and may lose sight in both eyes. Thankfully it still remains a relatively rare condition compared to Multiple Sclerosis but the distinction is important as it is a much more severe illness and its treatment is markedly different. A wrong diagnosis treatment can lead to serious consequences.
New treatments are on the horizon and older treatments and treatment strategies are being redefined. But we desperately need to raise awareness of this devastating disease, better diagnostic tests and treatments during an attack and effective treatments that would prevent further episodes and hopefully a cure.
I am so glad that Lily made it through that day at the hospital. The woman who introduced me into the world of HR and let me do my own thing but always had my back if I needed some weight for an argument. Who, unknowingly to her, also taught me not to take work too seriously, and to make sure of a work life balance.
But I am so sad that on a daily basis she faces such pain. I am sad that there is no cure yet. I am sad that there are many others like her, for whom we have no idea of what they go through.
But, I also have a chance to help change this. To help fund scientific research which is shaping the way Neuromyelitis Optica is diagnosed and treated worldwide, to help provide support to sufferers or family members by raising money and awareness for the charity NMO-UK Research Foundation.
Every time I run, I am reminded that I am lucky to be able to do so. Every time I see Lily, she is still teaching me – these days on positivity, gratitude, friendship and how to bake good cakes. And that is why I am raising money for this charity by running the Wadi Rum Ultra in October.