World Mental Health Day: From backflips to bedpans

Today is World Mental Health Day, so I thought I would honour it with a different kind of blog post:

Sometimes I wonder how I got here.
Especially so fast.

How did I go from hours in the gym, training, running, flipping, to this.
Things changed really fast for me.

British Championships was an amazing experience, I was so happy to hit all my routines and claim 6 British titles. Then 8 day's later my world was turned upside down.

I found myself back in hospital, reacting over and over again.
Then I was back in Intensive Care, still reacting.
Even when I got home, reacting.
Back in hospital, reacting.
Home, reacting.
Resuscitation, reacting.
High dependency unit, reacting.

Wires, tubes, drips, pads, needles. A whole world away from gymnastics.

Then I lost my hair. I tried to make it the most positive I could, armed with cosy hat's and funky head accessories I was ready. Yet I still look in the mirror and I'm met with the reflection of a young woman I don't even recognise. Where has the athlete gone? Who is this pale, bald and timid person.

I had accepted that I would look different after everything by body has been though. I lost a lot of weight at first and my bones dug in when I lay down, however now there is lot's of fluid that is being retained. I have days where my stomach is so swollen I look 7 months pregnant and it's difficult to move my body around without causing too much pain or fainting. My lips swell up and down so frequently they have left jagged cracks all across my mouth, scarred.. My arms bruised from all the needles, my eyebrows thinning and my eyes grey from the constant battle, but I am still me.

This condition make take my hair, my independence and even my ability to breathe sometimes, but I am still me.

I have no ability to control this condition, and I can not predict the outcome, but what I can do is appreciate the mind-set I have developed from having a life-threatening condition. Sure it isn't easy having your mortality rubbed in your face every minute of everyday but I take advantage of the ability to see things that healthy people don't. I can see the good in rainy days.

I have learned to love the lumps and bumps, the bruises and the baldness because it's still me. No amount of self-doubt or hatred will change that so you have to accept yourself and feel beautiful, because no-one else can do that for you.

I don't see this condition as a death sentence, but more as a life sentence. It pushes me to live!

Please remember that if you are ever struggling- talk to someone. Do not suffer in silence. You are beautiful and you deserve to be happy, don't let anything or anyone make you think otherwise.

Part time athlete, full time sick person.

'What's your occupation?'

'Oh, I'm an athlete' she says from the hospital bed. 

Bald, various wires and tubes attached to my skin and running into my veins, relying on injections to maintain a patent airway. I can see why you might question my answer. 

See I would currently describe myself as part time athlete, full time sick person. Not exactly a job you see at a careers fair is it? Full time sick person, but it's my current job. I like to think that I'm doing pretty well considering what I have been through the past few months, I am entirely self funded as a sick person, and I still do little bits here and there. Granted it's not as much as I want to do but I'm grateful that I can still do a bit. 

The past year or so I'v had a lot of friend request and followings off people I went to school with. Most of these people I hardly knew in school, I wasn't in any of their classes and to be fair I don't think many of them even knew my last name as I always did my own thing. However since hitting news headlines, whether it be for awards or for being unwell these people have suddenly re-appeared in my life. Messages like 'remember me' and a circled image of themselves in our schools year photo. I realised that these people now know only my 'before' and 'after'. Before; when I was a normal teenager and now, a full time sick person. Which is hard because I look at them and they are at university, have a full time job or and traveling the world and here's me, university of life, full time sick person traveling the world in an ambulance.

The job of a full time sick person is very complex but the ultimate goal is this; stay alive. 

Everyday things needs to be organised. Updating and arranging my care plan, preparing crisis drugs, doing treatment, attending appointments, chasing up results, sterilising things, monitoring everything- lung function, blood pressure, oxygen levels, heart rate etc and adjusting my treatments to suit.

I might plan to do things, but sometimes my job interferes with my personal life too. Maybe I need to spend longer doing treatments one day and so I miss out on something, or I'm not getting enough relief from treatments do allow me to do what I wanted. Perhaps my body goes into crisis and I find myself back in a hospital bed fighting for my life.

Not your average 9-5 job, I work night shifts, day shifts, early mornings, late nights and in the past I have had to work for 6 days on a total of 8 hours sleep.

So that's me, part time athlete, full time sick person.

Thankyou from a grenade

I would give anything to walk away from all this.
The ability to walk away from the hell that Mast Cell Activation puts me though on a daily basis.

However I don't have this option.

It baffles me how amazing my friends are. These individuals have the opportunity to walk away from all this and never look back- yet they stay by my side. They hold my hand when I flight for my life, they cry with me when things are bleak and they laugh along with me on my crazy adventures.

I'm not a huge fan of books and films that failing health a beautiful drama, however there is a beautiful quote from 'The Fault in Our Stars' which I find very relatable.

'I'm a grenade and at some point I'm going to blow up and I would like to minimize the casualties.'
I love my friends and I want to protect them as best I can. I force myself not to isolate myself from them to prevent damage, but to allow them the choice and the option to walk away if they wish. I experience some frightening reactions, but I cant begin to imagine what they go through as a witness. I'm not sure I could watch a friend dying right before me and hold back the tears, yet somehow my friends do. They are my strength when I am weak and I know will be by my side until the very end.

When the end does come I hope they are comforted by knowing how much they meant to me, and I hope that they continue to speak my name with the ease that they do now. Until then I'm busy making amazing memories with amazing people.

Ticking off bucket list wishes, singing at the top of our voices in the car and laughing until I react and have to push rescue medication.

As much as I want to protect them, I owe many amazing friends my life. I've been lucky through the opportunities I've had in life to befriend many paramedics, nurses and other HCP's. Unfortunately due to the nature of MCAS it's meant them helping me when I can no longer help myself. Most recently to the amazing Sarah, for holding my hand with warmth when the world felt cold and blurry. For helping the medics understand how best to help me and for not treating me like a grenade. Also to Angela, for being my guardian angel and breathing for me when I couldn't breathe for myself.

And for everyone one who follows my story, loves my gymnastics or is a friend of mine. Thankyou for believing in me when I couldn't believe in myself.

This Sunday is the 2017 British Gymnastics Championships and at the time of writing this, I'm highly unsure I will be able to compete. However if I do, I'll be performing in honour of you all!

I prayed to die...

I guess the title of this post is a bit of a give away as to the end result, but stick with me here, I promise you it will be worth it.

Many kind people tell me that they pray things will get better, or they pray for a positive outcome of test results. It's taken me a long time to ask that people pray not for a specific result but that I'm blessed with the strength to survive through these tests in life.

When my health began to fail me and it's fair to say my faith was tested. I used to feel very angry at god for putting me through such pain but then I realised that I was angry at god because I cared about our relationship. It was this realisation that makes me seek a deeper understanding of my faith. Every song we sang in church, every sermon that was preached felt like god had written it exactly for me at that moment.

It was this understanding that lead to my baptism. I chose a song with the lyrics 'strength will rise as we wait upon the Lord' as my song because I felt that those words had got me though so much, and would carry me through whatever lay ahead.

I hadn't imagined what lay ahead to be quite so difficult. I would say my faith was again tested many times with hospital admissions and scary procedures but I was flooded with this gratitude for life.

Yes I was crying in pain, but god gave me eyes of which to weep from.

Back in December I suffered another life threatening mast cell crisis. However this particular attack was the worst I've experienced to date.

I remember it so well and I really wish I didn’t.
I remember the world coming back to me in a haze, the sounds around me were still muffled but I could feel everything that was happening to me. I could feel the mask pressed firmly over my face. I could feel the air forced into my lungs with every press of the bag beside me. I fought against it, I was breathing for myself again and I was trying to breathe against the rhythmical breaths the doctors had been doing to resuscitate me. I could feel the needles being placed in my arteries and veins and I tried to cry out in pain but my body remained motionless.

At that moment, there was so much pain, so much suffering, I couldn’t go on.

I lay flat on the hospital stretcher and prayed to God for him to take my life. I desperately pleaded to him that I would lose consciousness and just slip away.

Lord please take me, immerse me in your mercy

The doctors realized and removed the pressure off my face, gently holding the mask above my face allowing the high flow oxygen to pass into my lungs. I was breathing. My heart was jumping in my chest I was sure at any second it would just stop. The blood that flowed through every inch of my body seemed to boil under the skin and I can honestly say that I have never felt to unwell in my life.

The nurse spoke to me gently and reassuringly. Tears were steaming down my face at this point and I was shaking as I held the comforting hand of a paramedic friend, Gav. I could hear the doctor in the background talking to another member of staff “she is incredibly poorly, get the intensive care team down here now”.

The strangest thing of all was that I didn’t want that team to come and save me. I had fought this condition long enough and I wanted my battle to be over.

No more.

I spent several frightening days in the intensive care until and months recovering physically from what had happened.

Yet everyday I pushed my faith further and further away from me.
How could I worship a God who ignored such a plea?
How could I trust in a God that allowed me to suffer so intensely?

I could not understand why I had grown up worshiping this God who, when I needed him most in my life, ignored me.

It's an ongoing process but I'm getting there. I'm finding my faith again, day by day and breath by breath. I realise that God provided medical professionals to help relieve my physical suffering, and that he will only let me experience what I can handle. However with god by my side, I can handle anything.

God recently bought a wonderful friend into my life who I'm so blessed to have. We are the same age, we have the same diagnosis and doctors but most importantly we are both children of God. Together we are both finding our relationship with god again and leaning on each other's faith when we need to.

I prayed to die, and god gave me a friend. Just as Proverbs 3:5-6 says 'Trust in the LORD with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths.'

Whatever I wanted on that day, clearly wasn't part of Gods plan and some days I'm grateful that I didn't die, others not so much. Everyday I'm learning to adapt to new limitations but I know that I'm not alone.

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.

It’s Okay To Be Broken

It’s okay to feel broken. You shouldn't be ashamed of being broken.

Sometimes things don’t go as planned. Developing this condition when I was 18 was defiantly not on my wish list for life, but you can’t go around sulking and pushing people away when it happens. It’s fine to cry and to mourn over your past life, and take a few days just thinking and just being. It’s okay not to be okay just as long as you’re going to be all right in the end.

I know it sounds rather corny and perhaps over emotional, but you can’t go around wasting time focusing on feelings that bring you down.

Ok, you can, but are you going to get anywhere in life if you do? NO

You are a human being; you are amazing, and are capable of more then you think.
If you fall down, stand back up. 
You can be down but not out.
A battle lost perhaps, but not the war.

It’s fine to be broken, it's fine to be down, but you have to pick yourself up and put yourself back together. You have to let the experience make you better, wiser and stronger. If you need help, ask for it. A friend, family member or even professional help. There is no shame in putting your hand up and saying 'Hey, I could use a hand over here'. You can't wait for someone of something to come along and magically fix everything. Only you can save yourself from your personal demons.

It’s okay to cry, but remember to face the next day with a bright, new smile. 

  

Look forward to a new day.

Piece yourself back together.

Love yourself for who you are and all your perfect imperfections.

Be yourself

And, one day, you’re going to wake up.

Your going to wake up and you will be better, wiser and  stronger. 


Then, you will realize you actually are okay