Allergic to 2020
When I came across Sophie’s instagram page at the beginning of the year, I was shocked. I didn’t understand her condition, truth be told, I didn’t know her condition was a thing. From being in the allergy community, I have learned so much about what other people have been through and I am amazed at the resilience, kindness and strength they have. Sophie’s condition is scary but her instagram is full of gratitude, strength, wit, humour and kindness. She is a wonderful advocate for herself and I am so happy that with a really tough year that she is here to tell her story. I asked Sophie to take us back throught the year that her whole life changed. 2020 was hard on us all, but please read this and see how amazing Sophie’s mindset really is.
If you are reading this, you made it to 2021. It wasn’t easy, you might have had the worst year of your life, but you are here and I am grateful for you. Happy New Year (we definitely need it)!
Sophie’s Story
Throughout my childhood I was a Competitive National Ice Figure Skater. I was very atopic as a baby- asthma, eczema and allergies. However, the intense physical training kept my asthma at bay, my eczema disappeared and my allergies were reduced. I was able to live a pretty ‘normal’ life up until 19, when my journey with anaphylaxis began...
I was on holiday in Italy and one morning I woke up with a systemic reaction - hives all over my body. Ever since then I’ve suffered from idiopathic anaphylaxis (spontaneous), and up until this year I would have anaphylactic shocks every few months. In between, the anaphylaxis, I would have smaller reactions and rashes most weeks. In this time, I have developed an increasing number of food, drug and environmental allergies, my asthma has returned severely, I’ve developed allergic migraines and allergic arthritis. My allergies definitely impacted my life, but I was able to continue living as normally as I could.
This year my life got turned upside down when my condition suddenly declined. I have spent most of the year in hospital, and at one point was having anaphylaxis up to 5 times a day! My body is currently very unstable but I am being treated with large amounts of medications and an Immunotherapy trial.
As the year comes to a close, I am sharing what I have been through in 2020. I want to share, so you know that whatever happens, however bad something is, you are not alone. This has been a difficult year for us all but I/we are still here, we are the lucky ones.
January
Stumbling into my flat at 6 am, after a night celebrating, I was full of hope and excitement for what the coming year would bring for me. I was happy, genuinely happy - I had an amazing group of family and friends surrounding me, dream job, an exciting career ahead of me, and many adventures planned throughout the year. I fell into bed, with a smiling face, I drifted off to sleep. I had no idea that 2020 would bring a world of chaos (nobody did).
February
I had the most traumatic Anaphylactic shock of my life. A & E, IV Morphine, and suddenly I was paralysed. I was unable to move, speak, breathe, however, I was extremely aware of what was happening around me. One moment I am living happily and within seconds I became a lifeless body surrounded by panicked medics attempting to save my life. This is the moment that I developed PTSD.
March - April
We know what happened here. All a blur and the world went to s••t.
May
The rollercoaster of my 2020 life, really began. I developed tonsillitis, which triggers my underlying condition to become out of control and within days I’m hospitalised with a systemic immune reaction. I spent weeks as an inpatient, with excruciatingly painful hives covering my entire body and swelling in any place imaginable. I was constantly pumped with every IV steroid medications and antihistamine that they could find, but there was no change. I knew then that it was going to be rough.
June
Constant appointments with allergy and immunology specialists attempting to find answers about what was happening with my body. I had hives everyday, that covered my body, my eyes/tongue were swollen, and I had unbearable pain and fatigue. I started on an array of medications, in a desperate attempt to control my immune response, but no success. I stopped working and my mum became my carer. June was the month I realised just how sick I really was.
July
The worst time of my life and one that I will never forget. I realised, for the first time, what it truly meant to face death. I cannot even count the number of times I went into anaphylactic shock - it was multiple times a day. I mainly spent this month in my hospital bed, fighting for my life. The amount of trauma I endured that month, is ingrained - I don’t think it will ever leave me. I began taking steroids, which turned everything on its head.
August
I had multiple relapses and anaphylactic shocks, however, August also provided me with some hope. I began to think ‘I just have to stay alive’ and I waited to begin Immunotherapy- which was a last ditch attempt to prevent my body from attacking itself.
September
I began Immunotherapy. I didn’t know it at the time but 09/09/20 is always going to be the day that saved my life.
October/November
This was painful. My steroid side effects made themselves very aware. I was changing in ways I never thought possible; my mind and body were extremely different that I didn’t even recognise myself in the mirror. Nobody recognised me, even my clinicians and my family. I was almost completely bed bound, I couldn’t mobilise, do my own personal care and the pain was unbearable, I have never felt pain to that extent. On top of all of that, I was diagnosed with Cushings Syndrome due to those steroids I was on; which will impact me for years to come.
December
Firstly, I’m amazed I made it here - what an amazing achievement. We couldn’t sign off this year without adding another diagnosis to my ever expanding list- Adrenal Insufficiency. This is again due to the prolonged use of high dose steroids. Steroids ruined my life in 2020 but also they also kept me alive in 2020.
Good news, if all goes to plan I will have weaned off my current steroids and changed to my ‘long term’ steroid just before the New Year! Hopefully by doing this, will mean that my Cushings symptoms will stop getting worse and I will end 2020 on a high note!!
Reflection
This year has reminded me that we have no idea of what the future holds. Our lives can be turned upside down in seconds and everything can be taken away from us. My year has been about survival and gratitude. I hope next year I will continue to stay alive! You may think that is morbid, but that is my current reality. My hope is that, I am able to continue appreciating and finding happiness in as much as I can - I’ve realised that the small things in life are actually the big things!! My aim, by posting my journey so openly on social media, is that people are able to reflect and appreciate how beautiful being alive is and not take it for granted. Remember, whatever you’re going through, however painful, it is only temporary. Nothing is permanent in this life, please keep holding on - you are not alone.
Sophie
Instagram @allergic.2.life