It seems my body wants to celebrate ‘food allergy awareness’. Something has triggered my body to react. Today I had a rash covering my legs and as the photo shows my lips are swollen. Food allergies are serious and can be life threatening. I don’t know what has caused my reaction tonight. Hopefully, with an antihistamine and a steroid it will go down.
My weight loss has been consistent these last few weeks despite ill health. Really struggling with my depleted immune system at the moment. This is the side to anaphylaxis that most people don’t realise – it wipes a person’s immunity for up to six months (as long as they don’t have another attack). This means that the risk colds, flu, infections and sensitivity to all allergens intensifies. Heading back to the doctor today. #anorchidsview #weightlossjourney #anaphylaxis
This is the smile of someone who is feeling well. It takes a long time to recover from anaphylaxis. My immune system has taken a beating lately. Today I felt like I had energy again. I felt alive and well! I’m heading to crossfit tonight – let us hope that this smile is still in place after today’s workout! I’m grateful to be feeling well. #anorchidsview #becomingthebestmeicanbe #lovetheskinyourein #weightlossjourney #grateful💖
So.. today someone asked me how my head space was after my recent allergy incident. And I realised that maybe it’s time for people to understand what it’s like living with life threatening allergies. I don’t think I have ever really spoken freely about it. Yes I have covered what medically happens.. but what truly happens is harder to describe. I get upset that people don’t understand but perhaps they have never had the chance.
My health is an area that I can’t control and this goes against every fibre of my being. I hate not being in control. I like to know what’s coming and I’m a creature of routine. I like to work hard and achieve goals and to plan and prepare and fit as much life into each day as I can… and then there’s my allergies. I have to plan to be safe – and I do. I strategise how I am going to walk through a shopping centre – where is the food court.. how can I avoid it? I am on high alert grocery shopping – where is the spice isle? Will someone be doing tasters? Where is the fresh seafood located? If I need to go to the hardware shop.. how long will it take? The fumes make me vomit if I’m more than 15 minutes.. if I’m going out to dinner – Where is it? Is there anything on the menu that will trigger a reaction? Do I need to prewarn the restaurant? Is there anything I can eat? Should I risk it? My good friends are comfortable with me attending and not eating – people who don’t know me so well, feel uncomfortable. They want me to enjoy myself and be a part of their food partaking pleasure. They offer me all kinds of foods and treats – trying to be considerate.. but ultimately making me feel more uncomfortable. I know they mean well, and I know they want me to be happy.. but highlighting my lack of eating actually makes me feel uncomfortable.
My careful planning also has to cater for my inability to be in the sun for any length of time without protection. Driving means having a kaftan to put over exposed skin.. the constant supply of sunscreen (for sensitive skin).. my hat, my sunglasses – yes my eyes burn too. And then where is the activity? Is it outside? Will there be a place to sit that’s off the ground? In the shade? What’s the environment like – is it a known ant infested area? How far am I from the hospital? Will there be a place to store my Epi-pen out of heat and sun? Who will I be with? And then there’s inside my home..
I have to ensure that there are no food scraps left around my home – they encourage ants. If guests come to my home I have to make sure they do not bring any contaminated food – that means no food cooked near or in an environment where there has been spices. Those who live with me can’t cook certain foods while I’m home as the aromas of roasting meats and seafoods can cause violent vomiting. I’m not the easiest of house guests.. I can’t have my cutting board and cooking space contaminated with wheat, eggs, dairy, meat, seafood, tomato.. you get the picture. While I can touch some of the items – ingestion will cause me a reaction.. sometimes a rash (if I’m lucky) and sometimes anaphylaxis (if I’m not!). This is another area I struggle with – I want people to enjoy their time at my home, I want them to be able to eat yummy normal food.. but at the same time I want to be well. I have to trust that they are as careful with my health as I am. A knife that spreads my homemade hummus onto my rice cracker can not be used to spread onto someone’s bread. The double dip is contaminating the hummus. This makes me feel mean, and rude, but most people don’t realise how much it affects me. I can’t afford to be careless.
To maintain my health I spend more than $500 a month on medication – excluding health cover, doctors and specialist visits, ambulance services and epi-pens. I take 14 tablets, 1 puffer, and 1 spray every morning. I take 18 tablets at night. That’s the sum total when I am ‘well’. It’s a lot.. and then you get an ignorant person who says ‘you shouldn’t be on medication’ or ‘so much medication can’t be good for you’.. without this medication I wouldn’t be able to have a life at all. If I had the choice, in an ideal world, I wouldn’t have this much either – I’d rather buy pretty things or travel more or buy art supplies..but I don’t have that option.
Life with allergies is hard even when it’s going to plan. Life with allergies is harder when it isn’t going to plan. When something is not in your hands it’s so much harder to cope. I have to trust that everyone around me wants me to be safe. It hurts when people are careless or thoughtless – yes physically it hurts – my god it hurts. But it hurts my heart more. I try so hard to care and be kind and make as little trouble for others as possible. I eat away from others so they can have freedom, so they can relax. Yet ‘forgetting’ and bringing an allergy triggering food into what is meant to be a ‘safe’ place could result in my death. It breaks my heart to know that there are children and young people who can’t speak up for themselves or don’t know how to respond to an allergic reaction.. I know they get placed in these situations too. The excuse ‘oops’ or ‘I forgot’ isn’t good enough. It doesn’t cut it. I’m a forgiving person and I know accidents happen – I’d never hold a grudge to anyone who honestly didn’t know – I hold a grudge to those who do know and don’t care.
I try so hard to ensure I don’t bring nuts – I brush my teeth twice to ensure I don’t spread the nut aroma with those who are sensitive. This sounds simple and it is and I don’t think it an inconvenience if it means I’m keeping someone else safe. If someone who has to eat nuts regularly for fats and protein because they have a limited choice in diet can do this.. then so can everyone else. I don’t want this to sound like a complaint against the universe. I’m not angry that I have allergies – it’s something I can’t change. It’s part of who I am. But I want other people to understand the extent that I go through so that others can be enlightened and learn how much a careless action can affect a person’s life.
A careless act of bringing an allergy trigger into a ‘safe’ place can cause anaphylaxis. Yes – that much is obvious.. so most of you would know that anaphylaxis is life threatening. Big needles are given, the patient is taken to hospital – that’s where knowledge ends for most people. But as the patient.. they are taken to the resuscitation unit of the hospital. They are monitored for at least four hours. They have heart rate monitors on, they have ECGs or EKGs, they have blood tests, they are watched by a team of nurses and doctors. If all goes well the patient is able to go home. They will be given steroids for a few days – these will make them feel sick in the stomach, they’ll have no appetite. They will sleep for a whole day, the next day they might get up for a few hours. The day after.. they will be sore and lethargic. They will not be well enough to exercise for another week. It takes a patient six months to rebuild their immunity – that is if they have six months without another reaction.
I have had 4 reactions this summer. Only one has been caused by an ant. The others have occurred in ‘safe’ places by people bringing a trigger into those environments. My immunity is at rock bottom. How is my head space? Mostly I am a strong, resilient, and hopeful person. I know true beauty is in the hearts of those who care for me. And that gives me strength.
I have met so many beautiful souls who show compassion, understanding, and love. I have been surrounded by people who have helped me when I desperately needed help – some of these people have been strangers and some I have known a very long time. Many people don’t know how tough my life is because I don’t like to be in the spot light, I don’t want people to worry… and I appear calm during an attack.
I have lost count of how many times I’ve been in an ambulance, how many times I have used an Epi-pen.. I am calm because I need to be. Being calm allows me to breathe.. to get as much oxygen as I can. Being calm means that I can stay alive. It doesn’t mean that I am not scared, that I don’t worry if the ambulance will get there in time. I worry that I am scaring those around me. I worry so much. I worry about a lot. But I also know what to do, I also trust in our health care system. Just like I have to trust that those around me are not deliberately trying to cause me harm.
That’s how I deal with my lot in life. I have to believe that there’s goodness in everyone. I keep a gratitude journal to remind myself how lucky I am to be alive each day. I find the good, even if it’s hard. I have learnt that sharing, being kind, and helping others actually brings me more joy than anything else. I try to live my life the best that I can and I try to make life better for those around me.
I don’t need anyone else to save me – I can save myself..(and call an ambo to assist of course). But I’d really love it if people could assist in the prevention of anaphylaxis.
I dream that one day I’ll have the freedom to be safe..to feel safe.. to fly and be free.
Today someone asked me what anaphylaxis is.. I thought this diagram might help to sum it up. Basically it is a life threatening allergic reaction. Without medical intervention a person can suffocate. The use of an Epi-pen can save lives. Hope this helps. #anorchidsview #anaphylaxis #allergicreaction
Please be careful about the foods you take or send into a workplace or school. Allergies are no joke – they can be deadly. For anyone that thinks that needles don’t hurt – check out my legs. I’m grateful that my colleagues were so kind and assisted me with care and respect. Please, please.. consider lives over taste buds. I’m lucky that I can recognise what’s happening and treat myself accordingly. Children cannot always do this and some adults who have not had as much practice may not recognise it either.. Even when you know what is happening it is still frightening and it’s also frightening for the friends of the person having the attack. I’m also grateful to the paramedics who administered extra adrenaline and oxygen.. it was their second case of anaphylaxis for the day – in a school! #anorchidsview #epipen #anaphylaxis #grateful💖 #ambulance
So my day has been interesting. I survived a gruelling session of cross fit in 38c heat.. to be bitten by an ant and end up in hospital. I’m so grateful to the crossfit community who looked after me and phoned an ambulance. Anaphylaxis is a frightening experience for everyone (the first aider/carer/friends and the patient). Today’s episode was a bad one. I haven’t had many this bad.. when one epi pen wasn’t enough. The support, kindness, care, and thoughtfulness of Staff and community was amazing. These beautiful people are still getting to know me but went above and beyond to ensure my health and welfare. Thank you so much. Thank you Paul and Ben for checking in with me and contacting my mum(as well as looking after me as I was crying and puffy on the carpark floor).. thank you to the lady who held my hand and mothered me.. I don’t know you but I hope to one day thank you in person. You are such a sweet, beautiful heart. I’m grateful to the ambos.. all three of them! You guys were so professional, so thorough, and helpful. I don’t know if I’ll ever see them again but Alan, Stu, and Ron – you guys do a great job and I’m so thankful for your assistance. Thank you also thanks my mum.. who has her usual seat by my bed. Thank you.. I can never repay the kindness I was shown today – but I’m going to try! #anorchidsview #trulyblessed #grateful💖 @crossfitmillennium ps sorry to have disrupted the 6:30 class!
So this is what the start of my holidays look like. I had anaphylaxis this afternoon – ironically after doing a course on the treatment of anaphylaxis. As most of you would have picked up on by now I have a lot of allergies. I try to live my life without troubling people and without causing a fuss. Mostly my allergies only affect me if I ingest a reactive food but with spice it’s a whole new ball game. One sniff of cardamom can lead to a trip in the ambulance and some time spent in hospital. Today in our course I felt shocked that someone could stand in front of a group of people and claim ‘the worst case I’ve ever seen was…’ ummm hello? It’s not a contest, it’s not my fish is bigger than your fish. It is a debilitating illness that is not only painful and frightening, it is life threatening. Health should not be a contest. Allergies are certainly not a contest. I’d hate to think that people who have witnessed me experiencing anaphylaxis would share these tales. By all means share your knowledge and spread awareness, but adding comments like ‘you should have seen her face?!’ Is not treating someone with the dignity and respect they deserve. Take a minute to think about how it feels to be the person experiencing the reaction. My experience today.. my hands started to swell, my body temperature began to climb, my lips became tingly- I’d say most people would freak out about these sensations.. but it gets worse. My lips began to swell, my tongue became swollen and my throat constricted. I could not breath. I had to choose whether to give myself an Epipen or call out for help and hope someone would hear me… does this sound like an interesting story to share with a bunch of strangers? Yes my lips were so swollen that it may seem comical until you realise that I could die. Anaphylaxis is not just something that happens to people on the news. It is very real and very, very frightening. I am so grateful to my brother Mark and his partner who phone the ambulance for me. Once I administered the adrenaline my airway cleared enough for me to walk 20m to find help. I’m also grateful to my mum who came and sat with me in the hospital as I underwent more tests. #anorchidsview
I want to thank all the kind souls who have helped me when I was unable to phone an ambulance or inject myself. The souls who try so hard to keep me safe, the ones who ask if they’re not sure, the ones willing to assist, learn, change and understand. It’s frightening for the first aider and for the patient. It is not something that I would want to experience if I had the choice. Sadly for many people there is no choice. This is life. I was shocked to hear how much an Epipen can cost. While in emergence this afternoon a doctor told me of the cost of pens around the world. In Australia we are so lucky to have ours subsidised by the government. We can have two Epipen for less than $50.. in the USA one pen can cost upwards of $600. In the last 6 months I have had 4 attacks. If I lived anywhere else I couldn’t afford to pay for life saving medication. Pretty scary! I’m so very, very grateful. Please everyone, support your friends, your family, your coworkers, teachers, drivers, doctors… be careful what you bring to share. YOU have a choice of consuming particular foods. Allergy sufferers do NOT have a choice of triggers. #anorchidsview #anaphylaxis