I have tried to write this many times. I am meant to shed some light on what it is like to have a long term condition. But doing that, saying how I got mine and how my life has been since, comes across to me as moaning about something that yes I will probably have to deal with for a long time, but I'm not a father of two that won't see Christmas. There are many people having much tougher times than me. From the moment I got ill I never believed that it was permanent or bad. So it's hard to write a retrospective that ends up sounding begrudged.
In black and white, being paralysed at 22 with a rare auto immune condition called Guillain-Barré Syndrome, which essentially removes the parts of your nerves that carries messages to your muscles and organs, sounds terrible. I can see that. But my reality was that when I was deteriorating and there was the possibility of never walking again or dying, those things didn't cross my mind. When I was very bad I was in too much pain to focus on anything else except writhing in bed and concentrating on not screaming. By the time the pain was able to be managed by pills I was focusing on getting better. To give you a sense of what nerve pain is like, imagine your legs constantly expanding. the pressure building and building. The only thing that would offer a release is if they finally exploded but they don't. Add to that the feeling that your feet are literally on fire, except the fire moves like liquid and surrounds your feet 24 hours a day. I still have the latter.
So what can I say? Well I'm 27 now, I taught my self to walk and talk again very quickly. My neurologists term my recovery, "fantastic". But in my experience being considered "recovered" is in fact a cruel synonym worthy of any alternate fact touting political nightmare that actually means; "not in hospital any more". I am very lucky. I think you would be hard pressed to pass me in the street today and know I had ever been ill. But the reality is that even with all I have gained, every day is still dictated by my condition. I am now one of many living with an invisible illness.
No two cases of GBS are the same, there is no known cause or cure. There are procedures that can help and illnesses that might precede it but there are no definitives. My mother to this day can't fathom how you can't know what's next, take a pill and then get better. The reality of being in "recovery" is that it will change every day of the rest of your life. I take 16 tablets a day, I have long term issues with my stomach, bladder and bowel and left eye but the main problem beyond the nerve pain is fatigue. Mental and physical. I always thought fatigue was a passive aggressive way of saying someone was "a bit tired" or "lazy". It sounds like a diagnosis Jeremy Hunt would issue while lounging in a bubble bath of junior doctors' tears. In reality you become unable to form sentences or form too many in half uttered gibberish. Your pain returns regardless of medication. You stagger. Parts of your feet go numb. The closest you can get to emulating a fraction of the feeling would be to combine extreme muscle fatigue and a concussion with those moments in the middle of the night where you, half awake, stumble into the cupboard thinking it's the bathroom and pee on your coat.
You become a prisoner in your own body. Yes you are no longer paralysed, you can walk and feel the wind on your face. But it's like being a dog that was always kept on a short leash. Every day it would pull on that leash until one day your owner bought one of those extendible leads. "This is brilliant" you think as you run further than ever before until SMACK. The lead stops. You've reached the end and you're pulling once more. One day you will feel like you can conquer the world, then you walk too far or don't eat enough, talk for too long, do two things in a day and you're pulling at the leash once more as the clouds of nerve pain and fatigue descend. I often laugh when I see a disabled sign now, the idea of someone having to be in a chair to be disabled is archaic, but born from simple lack of understanding. Perhaps that's what this article can do, educate, shed some light on something so many people have but no one can see.
HuffPost UK Lifestyle has launched EveryBody, a new section calling for better equality and inclusivity for people living with disability and invisible illness. The aim is to empower those whose voices are not always heard and redefine attitudes to identity, lifestyle and ability in 2017. We'll be covering all manner of lifestyle topics - from health and fitness to dating, sex and relationships.
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