A little dose of reality 📍

Since my last blog post I’ve been overwhelmed by messages of love and support. Thank you so much for all your kindness, it really does mean the world to me!

Lots of people are asking me if I’m better now because they’ve seen pictures of me out of hospital and smiling. Whilst I really do appreciate the meaning behind it, I just thought I would do a quick update as to my current reality. It’s hard having these conversations on repeat.

I’m currently back in hospital and have been for a few days now. Since my last post, I’ve had severe anaphylaxis multiple times, and been an inpatient in hospital many times. I’m becoming more unstable, and my body is exceptionally weak. I’m just Yo-Yoing in and out of hospital every few days whilst I’m waiting to start Immunotherapy.

The times I’m out of hospital, I’m in bed 90% of the day. I have to be with someone 24/7 because I become unconscious within seconds. I’m on a ridiculously strong medication regime. I have no level of functionality, and my mums become my carer.

I’m so grateful when I wake up each morning. I’m grateful to have sips of coffee. I’m grateful to see the sun shining through my window. I’m so grateful for everyone I love in my life. So I smile a lot, because life is amazing. And I want to celebrate every tiny thing that brings me happiness. But please don’t mistake a smiling photo for me being better.

My current reality is that I’m exhausted.

I’m exhausted of being stabbed by multiple needles in multiple places by multiple people; of having my airway manipulated and equipment forced in my mouth & nose; of people flinging my lifeless body in all directions to access the areas they need.

I’m exhausted of going in & out of consciousness & hazily hearing the panicked voices of doctors when I don’t respond to treatment. The sounds of “we’re going to lose her” & “she’s not going to make it”.

I’m exhausted of having the same conversations on repeat with anaesthetists about my risk of death as they assess my airway and set up their equipment ready for if I don’t respond to Adrenaline when I next relapse.

I’m exhausted of countless doctors informing me that I almost died and making sure I understand my condition “has a high chance of killing me.” I know. I experience it. Every single time is another trauma ingrained in my brain.

I’m exhausted when I finally stabilise and have an airway, knowing I now have to face the debilitating recovery phase. But knowing I won’t recover because I’ll relapse and the cycle will start again. And next time my baseline will be even weaker, making it even harder.

I’m exhausted having to fight for my life every single day. I’m exhausted facing death so often. I’m exhausted living one day to the next & not knowing if I’m going to be alive in the morning.

I’m exhausted of feeling so detached from the rest of world as I’m living in a never ending nightmare. Except its not a nightmare. It’s my reality.

I’m so grateful for my 100% survival rate, I know I’m so lucky to still be alive. And I’m going to keep smiling and celebrating the small things for as long as I can. Because they’re what truly matter.

Keep smiling and stay safe x