I'm never going to get better.

I'm never going to get better.

This is the reality I face. There is no cure and no magic pill to relieve my symptoms. My life consists of medicating symptoms I can't cope or survive with and dealing with those I can't.

There is a risk with the medications too. I'm so sensitive to preservatives I've got into anaphylactic shock from a bag of IV saline in hospital, and I react to all pain medication so I have to work out which I'm going to react to worse, the meds or the pain itself.

It's funny because the realization that you're never going to get better hits you at strange times. You would think it's when I’m mid crisis in the intensive care unit, fighting for my life, but it's not. It's when I'm stood waiting to pay for my shopping or just sat watching TV. It suddenly hits you like a wave crashing down over your body, drowning you.

It had never occurred to me that I’d wake up sick and just never get better.

The symptoms can be scary sometimes, and its scarier knowing that most of the time you just have to wait it out. I have to sit at home with unbearable pain, with major swelling or with stroke like symptoms. I don't want to; I want to seek help but I get the same answer each time. 'There’s nothing more I can do for you'.

If I have the correct medication for a certain symptom I'll take it, but most of the time I will have already had it. I have exhausted all options I have to help myself so I just have to wait it out, weather it lasts an hour, a week or a month.

I won't be able to recognize the person in the mirror; she is a stranger to me. My smile faded, lips chapped and eyes grey from the battle going on within my body. I cling onto hope because I know that's the only thing I can do to help myself through it. My mind full of things I will never be able to do, places I can never see, but mainly the person I can never be. I can never be who I want to be with this body, but I am learning to adapt to this new person I am becoming and sometimes, just for a split second, I recognize the girl in the mirror.

The girl who, yes, will never get better. However, this new girl is grateful for life and everything in it. She can appreciate feeling the fresh air on her face and being able to watch the leaves fall of the trees because she's made it to another autumn. She knows she can’t make a huge impact on the whole world, but she now knows she can make a huge impact on those around her. With each uncertain day comes the blessing of a new day, another sunset and sunrise and another day to say I was here, I lived.

'What's dying really like?'

*Before you read this I should warn you- readers may find the following pictures and writing upsetting and I wouldn't recommend anyone under the age of 18 reading it. I have never shared something so personal but feel its time people know what the reality of this condition can be*



'What's dying really like?'

The girl stood in front of me asking this question couldn't have been more than five or six. She was dressed in her school uniform with her beautiful fair hair braided back and her bookbag grasped her hand.

She then corrected herself.
'What's nearly dying like?'
'Should I be scared of dying or is it ok?'

This beautiful little girl asking questions most adults are too scared to ask. I reassured her, I told her not to be scared, I came up with a short explanation to answer her initial question which she seemed happy to accept and then she left for school.

You would have thought that would be it, wouldn't you? However her question kept playing over in my mind. Should I be scared?

I've learnt the hard way that you shouldn't fear death. It's inevitable.
That's it I said it; I do not fear death. However I do fear suffering. Suffering to death is different than actually dying. I can recall several frightening times battling for my life, in so much pain, so much suffering. Death almost felt like it would be a welcome relief from my suffering at that
moment but I'm far to stubborn to let this condition beat me, that's why I'm still here, still fighting.

Tongue swelling out of my mouth in Resus.

Until last September I would have told you that I had experienced a few 'close calls', times with anaphylactic reactions when I had suddenly swelled up and stopped breathing or I was very unwell. However I can now name just one. It was a definite near death experience, the kind you read in books and think its all dramatic, but I assure you it happens. Bare with me on this one, but I can assure you this is exactly what I experienced, weather you believe it or not, it's something that's taken me almost eight months to talk about.

I refer to it as 'The Midnight Reaction'.

The name isn't to make it more dramatic I assure you, its just a way to describe one particular reaction and it occurred just after midnight, hence the name.

It started as my normal life threatening reaction, throat swelling, tongue swelling and feeling very yucky. The 2 doctors that had been called gave medication, even nebulised adrenaline but I could feel myself getting worse. I could feel my lungs get smaller and smaller with every breath, my tongue was swelling so rapidly I was gagging on it and my vision became greyer and greyer. I was scared but I felt myself fighting it, I wasn't giving in. This is normally where I start to improve after IM adrenaline, however this time it was different.

What I experienced next was probably more frightening that anything I had already experienced before. I felt like I was breathing with lungs the size of a pound coin, desperately trying to suck any air I could get into them and then all of a sudden I felt very calm, very relaxed. I wasn't fighting it anymore, I didn't need to. I felt warm and comforted, I wasn't scared.

My eyes were shut but I could see clearly everything that was going on around me, a cardiac arrest call was put out, people came running, the crash cart smashing into my bed and made the bed jolt. I could feel them putting on defibrillator pads on my chest, they were cold. More and more people ran to my bedside, an anaesthetist arrived who called another anaesthetist, who then called another. Nurses seemed to appear from no-where, various levels of doctors were now there. Some were putting lines in, others giving medication, others crushing fluid bags into my IVs and there was one to stood by my head leaning over me listening to my chest with his stethoscope the whole time, relaying his findings to the others in the room. I counted them, 22. Twenty two people most of whom had just come running to help a complete stranger. How amazing is that.

8 minutes later, 4 litres of IV fluids and a crazy amount of medication later I opened my eyes. Things were grey, I was shaking and then began vomiting. I sat up and learn over the giant sick bowl, a doctor was holding my hair out of the way, I felt so scared with all the adrenaline coursing
through my veins. I recovered, I took some deep breaths, grateful that I could. I then lay back in the bed and smiled at the room full of very relieved people. They made comments like 'your looking better' and 'just keeping us on our toes were you' and I made an extra effort to smile and chat back as I wanted to reassure them.

So just like the little girl asked; that's what, for me anyway, nearly loosing my life to this condition was. When it came to it, I wasn't scared. I was calm and comfortable.

Whatever you believe caused this experience, weather it be hypoxia, medication or the power of the Lord I hope you take one thing away from it.

Do not fear death.

Shortly after. Pale, clammy but alive.