ANAPHYLAXIS WEEK: My Anaphylaxis stories (Don't fear the needle)
“Living with allergies has helped me to…”
Tomorrow (May the 4th- be with you) is the beginning of Anaphylaxis awareness week 2020. The Anaphylaxis Campaign is heading up events to spread awareness. The Anaphylaxis Campaign has been constant throughout my life. There are the only people my mother and I trusted (apart from my allergist) to give us any real, correct information. I remember when they came to my school in Switzerland and actually answered my questions which made me feel less alone. I have always admired their hard work from afar. Following them now on social media is incredible, they give you correct and up to date information on foods/beverages, products being recalled, notices on auto-injectors and so much more! I am very grateful to all they do and have done.
I realised, whilst thinking about what to do this next week, that I have never shared my anaphylaxis history or the stories behind them. I never thought it was interesting or important enough that anyone would read. However, as I immerse myself more in the Food Allergy Community, I see that a lot of people have either not ever used an auto-injector before or are scared to use it. That baffled me, I never even see that as an option. My stories are very serious, as anaphylaxis is, but there are some light hearted (even funny) moments. What I hope is that people will be less afraid after reading this and, even though the media paints anaphylaxis has a death sentence, we remember most of us do survive and come out of it stronger, safer, and more resilient.
Baby Lindi with Mum and Grandma. (My favourite photo)
Me and my brother aged 1
Now lets start at the very beginning, thats a very good place to start (I’ll stop now)…
My first reaction was when I was 10 months, I touched a peanut butter cookie (Read here) but we didn’t know I had an allergy then so, no use of an auto injector - let’s jump ahead a few years.
I was 3 years old. Allergic to eggs (I grew out of that allergy after puberty). I was at a friend’s house in London, England. My mother dropped me off for an afternoon of childhood fun, leaving me in the hands of my friend’s mother. We had our food, and we wanted some pudding and, being the lovely mum she was gave us some ice cream (you see where this is going). The ice cream had egg in it (this was before the time of #allergyfriendly, #eggfree treats), and I started to have a reaction. My mother was called (we lived around the corner), she gave me antihistamine syrup and we went straight to the nearest hospital, St Charles. Now you I would like to say that we got there just in time, and I was fine, but like all good tales, there is a plot twist- now remember this plot twist because it is important in the later stories. St Charles did not have an A&E (ER- Emergency Room), but instead a ‘minor injuries unit. The nurse there called St Mary’s hospital and the doctor spoke to my mother – yelled at her actually – because she hadn’t used the epipen – and made her do it then & there under the supervision of the nurse. He told her in no uncertain terms that the decision not to use the epipen had put my life at risk and said that she should always use it as the first line, not wait to see if antihistamines would work – he said that the main reason people die from anaphylaxis is because they leave using the epipen too late. My mother always said she never forgot his anger and direct use of language. Luckily, because I had such a little amount of the ice cream and by then we had used the epipen, my symptoms were starting to fade, so the doctor suggested waiting it out at home (we still lived around the corner). I was safe. Phew that story was a lucky escape, my mum never let me forget that story. Let’s fast forward now to when I was 6 years old.
Me and mum aged 3
By this time I was living in Geneva, Switzerland. I was at a party with my mums friends. As parties are with sophisticated adults, there were nuts on the coffee table (the perfect height for a 6 year old with a nut allergy). My mum had told me about it, said not to touch other adults and stay away from the table (these were new friends and allergies were still confusing then). It was all was going swimmingly, there were some other kids and we were playing, and playing turned into tag, and tag turned into me landing on the coffee table in to the, you guessed it, nuts. Mum quickly washed my hands and body, but it was too late. She gave me the epipen and drove straight the hospital, I was put on steroids (which I had to keep taking for a week as I was still so sick) but the hospital is where we met my and my mum’s favourite allergy doctor, and I was safe.
Me and my oldest friend. aged 4
Now here’s were it gets more interesting. 8 years old, still living in Geneva but was visiting my sisters, brother, and Dad in London (that is a WHOLE other story and not allergy related). We were at their apartment. My mum was taking a much-needed break at the house we were staying in (I was a handful, still am). My Dad and the siblings’ nanny were the only adults. I remember it so clearly - My dad was on the sofa, my brother in his room, and the nanny was cutting up some kiwi to give to my sisters in their high-chair. I was hungry (obviously) and I asked if I could have some pear. I hadn’t been diagnosed with a kiwi allergy then but I had eaten them when I was younger and the rule was (still is) when I try something I haven’t eaten in a while, I try it with mum. The nanny (she has a name but I want to keep her privacy) cut up my pear with the same knife as the kiwi (cross-contamination), unbeknownst to me. I went to the table, like the good little girl I was, and ate the pear. All was fine until— now I believe that anyone who has had an anaphylactic reaction knows, it’s like intuition, you just know that this is not right, I have had many “I think I could be reacting” but when I really was I knew it, in my bones. I stopped eating and went into a bedroom and closed the door (not the safest move Lindi). I kept checking the mirror (this is a theme) and every time I came back to the mirror a “bite” would be on my face. Those bites kept swelling each time I checked, until they were smooshed together, covering my face. I remained calm, put my hands over my face (you’ll see why in a minute) and went up to my dad and said -
“Daddy, I need to go to hospital”
“Why? he asked
I uncovered my face to reveal my swollen face (Can you tell I wanted to be an actress?)
Dad fainted - classic. Mum always told me he was a fainter.
Then the nanny came out and looked at my face.
She asked “What do I do?”
I walked her through the epipen. I said take it out of my bag, take the pen out of the plastic casing (it was a bit more flimsy back then) take off the blue top, and then jab it in my thigh and hold for 10 seconds (this was 20 years ago).
“I’m going to call an ambulance” she said.
“No, lets get a taxi, its much quicker”
She said ok. Dad had woken up at this point but I was definitely not taking him to the hospital.
We got in the taxi, I was crying because I started to feel the fear that we wouldn’t make it in time and mum wasn’t answering her phone.
The nanny said “Take us to the nearest hospital”
The taxi driver said “Righto, St Charles it is”
Told you it was important
“NO NO, take us to St Marys - It has an A&E” I screamed
The nanny called St Marys to tell them we were on our way and that I was having an anaphylactic shock.
When we got to the hospital there were seven nurses and doctors waiting for us. They asked me if I was stable enough to walk up the first floor because it would be quicker than taking the lift. I said yes (adrenaline is remarkable). Then I remember being poked & prodded and then nothing until…
“Where is she?”
Mum, my mum.
She told me the doctors said that I had saved my life. The nanny explained to them how I knew what to do with the epipen, what hospital to go to and that a taxi would be quicker than an ambulance. All the drills I had done with mum, and the questions she always asked me paid off and saved my life. I was safe.
Me and Grandpa aged 8
Me and Lindsey on Graduation night aged 21
We now have to fast forwarded to May 2014, 21 years old living in New York City, on the night of my graduation from Drama School. I was on top of the world. My mum flew in from London for the week and family friends came to watch. After the ceremony we went to Grand Central Station. I had always wanted to eat at this fancy seafood restaurant and try calamari. I have had never been diagnosed with a shellfish allergy (sensing a theme), and I used to eat prawns, calamari, mussels, etc. when I was younger. I really wanted some expensive calamari with champagne (that I didn’t have to pay for as, I was a student). The restaurant was aware of my other allergies, and I had my calamari (which were incredible). The bubbles were popping, we were telling tales of me as a child acting in my living room. The time got a bit late and I had a party to get to, so I got changed and went to meet a friend to go to our schools local pub for an after-hours Grad celebration. I met my friend (Lindsey- read her story) after a 20-minute walk from the restaurant (we were going to take the subway but I was in such a good mood I wanted to walk to enjoy the crisp New York air). As we were walking down on 34th & Madison I stated to itch on the back of my neck, it felt so cold, and I knew something wasn’t right. Luckily, we were right next to Duane Reade (USA’s Boots Pharmacy) and we stopped in for antihistamine. I took some straight away, and looked in the beauty mirror. There was that “bite” again. I looked back 30 seconds later and it had grown twice as much. I told Linds to call an ambulance (she had to go outside as there was no reception). I went to ask the pharmacist if she could help me with my epipen because I was crying so much.
“I’m sorry, I am counting money as the pharmacy is closed” she said.
“I know, I know * sob sob. But I am having an anaphylactic reaction” I said back.
She said nothing.
Then another woman saw me crying and came to help.
“What do you need?”
“I can’t see. The swelling is in my eyes and I am crying too much, can you tell me if I am putting the pen in the correct spot? Upper, outer thigh” I said, pleading.
I took down my jeans (I was in a moment of panic - you don’t have to do that)
I positioned it to where I thought, as I have done a lot of practicing without looking.
“Yes, you are” the woman said.
I pressed the pen. It was done, I injected.
Linds came back.
“The ambulance is here, let’s go” she said.
I held on to Linds and we walked down stairs and into the ambulance (FYI- you should not be walking if you are having an anaphylactic reaction, especially when there are paramedics that can help you- but hindsight is 20/20)
I don’t think I thanked that lady but thank you. You were a stranger and I owe you my life.
In the ambulance I was hopped up on adrenaline, and trust me I was feeling the effects. I was a stand up comedian in that ambulance.
“Hey guys, you sound hot, are you hot? Linds are they hot?” I joked.
“Yes, Lindi. Now stop talking so they can save your life”
The paramedics were giggling - I think they found me amusing.
“This is does not feel like how they show it on Greys Anatomy” I said, defying Lindsey.
Then I don’t remember much else, next thing I remember I was just in the hospital with my mum and Lindsey by my side.
The Paramedics did come back to talk to me and to make sure I was okay. You know what, they were hot!
I was safe.
Me in Grand Central Station before going to the restaurant aged 21
It took a few days for the swelling to go down, but I did not have a secondary reaction. The epipen had saved my life once again. One funny side effect from spending a night in a US hospital? My insurance ran out at midnight (because I stopped attending Drama school at that point) and the hospital charged me $10’000. Vive le NHS.
My hospital bed 2014
I have had many “near misses” and minor allergic reactions throughout my life (which have caused me to be afraid and go to the hospital just in case) but when I had those major anaphylactic reactions I just knew.
I really want to make this point clear, whilst I was scared and in shock because of my anaphylaxis, I was never scared in those moments to use the auto injector. I hate needles, I cry when I have blood taken from me or when I get a shot, but when the auto injector is the only thing standing in the way of life & death, I choose the needle every d*mn time.
“EPI FIRST
EPI FAST
ALWAYS CARRY 2”
I hope these stories didn’t worry you, I want quite the opposite, they were to show you the importance of being prepared, knowing your own body, and understand that you have the lifesaver in your bag, so don’t be afraid to use it. The media paints us all as living a terrifying life, but I have a pretty fantastic life, including the allergies.
Living with allergies has helped me to… trust myself. The auto-injector and I are a force to be reckoned with.
If there is anything that resonated with you in this post or on the blog please leave a comment, like the page and/or share with somebody else. Thank you for reading!
Look to see how you can help with anaphylaxis awareness week HERE.
