You are not your illness

Having to read all about someone’s problems is not the most enjoyable pastime. Personally, I would always choose to sit down and watch a romantic comedy where I know there will be a happy ending over a real life documentary with only one, gloomy outcome. This is why I have tried my best to keep each of my posts light-hearted and upbeat for all your reading pleasure. Whilst this has not always been easy, it has enabled me to take something positive from each negative situation I may entail.

You always hear such inspiring stories about incredible people standing up and fighting their illness, getting through because they’re brave beyond belief and keeping on going, showing their abstemiousness. But what happens when you just don’t have the strength to go on anymore?

autoimmune life

Yesterday was a day that I feel there could possibly be no positive spin for. Sometimes, when I am full of emotion, the only way I can truly release is to write; and that is why today I am sat at my computer writing to you.

Over the past few weeks I have been somewhat of a hermit. My mood has been so low that even getting out of bed became an up mighty struggle. I was cancelling plans left, right and centre, spending days on end in unwashed pyjamas and even skipping meals. Then some strange patterns started to emerge, I was beginning to feel paranoid, having déjàvu that lasted for hours on end and becoming more and more irritable. Then there was the physical side, my headaches were becoming more constant, my sleep was disturbed and my clammy hands and shaking palms had come back with a vengeance.

I truly believe that everyone knows their own body better than any Doctor out there, no matter how over qualified they may be. I knew in my heart of hearts that something was wrong. Therefore, I took it upon myself to email Dr Buckley in Oxford to ask her about my steroid reduction and ask for help.

This made way for yesterday’s trip to Oxford’s John Radcliffe. Dad and I woke in the early hours, bundled into the car and made the journey to the JR. The morning was spent having an EEG. For those of you that are not familiar with this, it is a procedure, which entails electrodes being stuck onto your head with a sticky paste to enable a recording your brain activity to be formed. As discussed with the Neurophysiologist, fully understanding what the different brain waves mean takes years and years of training, therefore I will not bore you with the specifics.

My results, on the other hand, were quite easy to understand, although difficult to comprehend.

My EEG was abnormal.

EEG Patterns

autoimmune delta

The way that it was explained to me was this, my brain is producing slow waves, the waves that are normally produced when one is asleep, but in my case, they are occurring during waking hours. If that was not enough, my most recent antibody level came back as worryingly high too. In other words, I am verging on yet another relapse. All in all, not the best news.

“Good news. It’s not cancer. It’s autoimmune.”

“Bad news. You’ll need to take chemo for the rest of your life.”

autoimmune

I cried tears like those from Alice in Wonderland, they literally splashed onto the floor, and then it was time to comprehend what this actually meant. What it means is that after months of persuading my Doctors to reduce my steroids, I will be upping my dose once again. What it means is that I am to be admitted into The JR on Monday to have yet another plasma exchange, following that I will start a course of chemotherapy. What it means is that once again my body has decided to fight against itself. My body is attacking my body.

“Autoimmune disease, because the only thing tough enough to kick my ass is me.”

autoimmune illness

I know that I always endeavour to be optimistic. I really, truly try my very best to always put a positive spin on everything. Sometimes though, this is not possible.

It is safe to say that I have had somewhat of a rollercoaster these past few years, there have been some triumphant ups along the way, and some almighty lows. From completing half marathons weeks after plasma exchanges to jumping out of planes at 15000ft after being told I was not medically fit enough. In the words of Sir Isaac Newton, what goes up must come down. And it appears that this period of time is destined to be one of those downs.

However, when I am sat in my hospital bed next week feeling sorry for myself, I will remember all the kind words of support that everyone has given me. Without you I could not keep going.

My body may be attacking me but I am ready to fight back.

I am going to kick this autoimmune disease in the ass.

autoimmune not illness

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One thought on “You are not your illness

  1. I will keep you in my prayers. I want to shed my own tears for you, that you must endure this. But I just want to say that your attitude is amazing, that you can share this with the world is enlightening, and you should never let yourself feel like giving up. Because it appears there is a good plan for you in life. Everything happens for a reason right? 😉

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