It’s a bit like the elephant in the room. Sometimes I don’t like to mention it. It consumes my life in so many ways that I often want to just keep this shame to myself. That sounds dramatic, I am not ashamed of who I am, but sometimes, especially in company, when I’m feeling anxious I don’t want to share this thing about me… which is stupid and unhelpful.
After a recent very bad anaphylactic attack and the ensuing treatment and recovery, I’ve kind of bottled up how I felt about it. I had a really good excuse not to discuss it, because it happened at a public place and the incident is now under investigation. So understandably it’s not helpful for me to be shouting about what happened, despite how angry, confused and scared I have been feeling. So I’ve been keeping things to myself.
This hasn’t helped me to recover mentally from the reaction. Because this was the worst reaction I’ve ever had.
My friends and family, who followed me to hospital (I was in the ambulance) tell me they were not able to see me until hours after I was admitted. Many hours. Usually these allergic reactions, whilst painful, scary and violent are stabilised fairly quickly once I’m at hospital.
So what happened? What did the doctors do for me in hospital?
Why did it take so long to stabilise my condition? After a night in intensive care under constant monitoring I am keen to understand what was different about this reaction. I always have so many questions.
I’ve kind of been in denial but am now picking up the pieces and doing my own investigation into exactly what went wrong from my perspective. Because I NEED to know… what could I have done differently? I’ll be sharing my analysis of the event in as much detail as I can without giving away anything important so that I can help others. Because mistakes were made, and I’m not talking about the food I was given, which contained milk. THAT is a whole other conversation for much later in the day.
We need to talk about anaphylaxis
What I wanted to say here really is that by not talking, I’ve kind of isolated myself from life. I’ve had to in lots of ways, that’s how I’ve coped with feeling safe. But that hasn’t been altogether healthy.
I’ve also found it impossible to talk in any great detail without descending into floods of tears, or feeling them coming on and just ending the conversation or changing the subject.
It has got easier though, as these thing always do.
Please, please talk about allergies and anaphylaxis. Ask questions. Find out how serious an allergy is. Because not all allergies are the same. Some people say they have an allergy because it’s easier than saying they have an intolerance. Some of us are so frightened about what our particular allergen could do to us. We need you to listen, understand and be honest.
We need your help to keep us safe. We have to trust that people understand and are telling us the truth. That’s the bit I am finding very hard at the moment.
Moving on…
Despite all this, I have eaten out since this happened, but I am VERY choosy about where I eat and if I’m at all concerned I won’t go. I have missed friends birthdays, work lunches and evenings out. I’ve been to parties and not eaten anything. I’ve lied and said I was busy when I wasn’t. I’ve felt that anxiety coming over me and made my excuses.
I have also had meals at two very good local restaurants near to where I live and also continue to frequent Nando’s and Pizza Express where I do feel safe.
My family and friends have also been amazing. Without you guys I don’t know what I’d do. The family meals are always completely safe and we all have Nando’s cards!
But what I wanted to share most of all is the importance of talking. And for me writing about it. I am journalling and writing down how this makes me feel because I have always turned to the power of words at times of pain and anxiety. I find writing so therapeutic and healing, as well as very revealing and difficult at times, but what I learn from doing this is often profound.
Don’t bottle up those feelings of fear. Talk to friends and family. Tell them how you feel. Tell me here! I’d love to hear from anyone who has anaphylaxis of struggles to care for family or friends with the condition. We can only make things better by improving understanding and awareness of the severity of serious allergies.
What happened to me only happened because people did not understand how serious my allergies could be.
I will not stop talking about this. Never! It seems amazing to me that anyone can be unaware with so much news coverage of the tragic Pret sesame death and the Indian restaurant owners who were jailed for serving meals containing nuts that resulted in the death of a customer.
These were unavoidable deaths. All we have to do is talk, listen and take it seriously.
Have the guts to say you don’t understand. Say no. Turn me away. Please tell me you can’t cater for me or you have no idea if food is safe. Because I honestly don’t think I will survive another anaphylactic attack…
Just talk…
I no eat out, if I go to family I take a white potato and my own butt. Feel safer and hope they are not eating anything like a curry etc
Boring but safe.
Wasing powder aisle a no no also and women wearing strong perfume likewise men and their after shave.
Oh this seems to be a common thread… the perfume. I don’t like perfumes but I’m not affected by them too much just by smelling them. I don’t buy anything with a perfume in it. I wonder what is in these products that can cause such instant discomfort and breathing problems in so many people. It must be terrifying. You are doing the right thing by taking your own food. I often do that. But I am also blessed with an amazing network of friends and family. I feel so included and safe in my own little family bubble. it’s just going outside of that that is hard. Boring is good if it keeps you safe. And safe food doesn’t have to be boring. Get experimental and make your own tasty food. Freeze batches and then you have instant takeway from your own freezer! Take care C
Hi Run I know how you feel up to about 2 years ago I had to stop going out due to really severe allergy to all types of perfume from the normal to abnormal types like going to the doctor to talk about my allergies only to end up having anaphylactic shock in the surgery from a plug in neutrodol air freshener that was not on at the time within 1 minute of going in I had used an epi pen and the doctor was calling for an ambulance and then after getting to hospital to be sorted and started to feel better a porter came in to get a patient and as he passed my bed I smelt his aftershave or whatever and then went on to have another anaphylactic shock and wheeled rather quickly back to resus to have the same treatment I had an hour earlier. I could not believe having anaphylactic shock twice both in health areas where they are supposed know about these problems, after having the attacks my surgery has made sure that they don’t use any products that smell but the hospital seems to be the same.I suffer the same me as the previous reply with the shops I don’t eat out due to many other allergies and struggle to eat t some of my relatives because they don’t seem to take me seriously with what I can and cannot eat really not much fun
Hi Ian, oh my goodness that sounds truly horrible. Perfume seems to be everywhere. It is so wrapped up in daily life, people seem to feel they must mask their natural smell with so many perfumed care products and those dreaded air freshener plug ins. I am not as bad as you with perfumes but my body doesn’t like them. I automatically feel a need to move away from strong perfumes. Some of them do effect my breathing but not to the extent you have. Anaphylaxis to perfumes – they’re everywhere! I wonder what it is that is in these man made smells that are affecting you. It’s most worrying for you. I cam completely understand your need to stay at home. I would be completely the same. I am sad to hear your family are not fully understanding how this makes your life. I don’t know what to suggest other than talking to them. Tell them what your life has become. How isolated you feel. Your home and your family should be a safe place for you. I know it has taken time for some of my close friends and family to understand fully just how careful I need to be. Often it’s unintentional but it’s so easy to be on auto pilot and forget the vigilance required to check everything when you have allergies. I’ve even made mistakes myself, not reading a label properly and once eating some prawn crackers which contained milk… I just assumed that s one brand was OK that this one would. That constant checking, even of things I know and trust is now the norm. Products can change, so I just check everything. I think I must be quite neurotic! But I bloody love this life and I don’t want to leave just yet. I have so much that I want and need to do. Keep on taking care and stay strong. One thing I do is take control of the food situation. Go early, offer to help cook, take your own food. It can take time but if you are there to help and explain how much you need to check and remind them what you cannot eat it might help. Although that just adds to the relentless high alert you must now live by!
Hi I wondered why I had not seen your blogs for a while. What a truly horrific experience. Your reaction as you say was way over any thing you have experienced before. Anaphylactic is normally managed in A and E . Not ITU. Have you thought you might have other comorbidities say mast cell activation Syndrome or histamine intolerance? Put them together no wonder your symptoms where so acute. I hope to hear your supportive and investigating blogs soon.
Hi Marlene, thanks for your comment. It means a lot. Yes I’ve found it hard to write for some time. A kind of writers block I guess. Just existing and surviving was taking everything out of me. I’ve decided to take the plunge and go freelance again which is so completely exciting and terrifying. It has given me space so far to just be, to heal, to rest but I need to crack on find clients also. But having the time to process all of this and also to write is going to be the best part. Thanks so much again for your comment. I am going to find out what happened to me that night. It’s weird when you’re in hospital, no one actually tells you anything and often you are too ill to ask. But I have a right to know and have forms to fill in to request the relevant information so I’ll find out! More blogs to follow I promise. So much going on an so much I want to share to help others.
Hugs. Just hugs, Ruth xx
Thanks Micki, hugs accepted and returned. Your writing on healing has had such a huge impact on my life. On all areas really. I had some counselling that really helped me work through the fear and anxiety and also some unhelpful long held beliefs that were damaging to my health and happiness. This life on earth is such an exciting journey of discover, healing and understanding. Thanks for all you do to help others too. Much love and respect.
Aah, bless you. I am glad some of it at least is helping then :). I learn something new every day about this stuff, I swear. I am currently working on a loss of oral tolerance plan that we can dovetail with the healing stuff 🙂 Onward. We won’t let it beat us!!! xx
Hi Ruth,
I understand totally. When you don’t have all the answers you need and you are really sick, it is easy to retreat. Also some friends – not all, don’t really want to hear about health struggles and that too, is a valuable insight – knowing who you can talk to freely, and who will be trying to suppress a yawn.
My youngest (now 23) has food allergies, and we were in A&E only two weeks ago, from a reaction to a sandwich! It was the worst one so far, and we were both really scared. It was however, dealt with quickly and efficiently at North Middlesex Hospital.
For myself, I became sensitive to perfumes/chemicals a few years ago, and it is getting worse. There is no answer to it though. If I find one, I will let you know. In the meantime, I will continue researching for answers.
I wish you well, and you are brave to put it all in writing. You are helping many others who may have the same symptoms or questions as you. And sometimes, it’s good to share and know that you’re not alone.
Thank you Samina. This perfume sensitivity is really growing. You are the third person to comment here. How on earth do you avoid that in a world where we are obsessed with how we look and smell. Well not me… I couldn’t give a stuff… LOLS. Thanks for your lovely comments. Glad your daughter is OK. Why do the reactions seem to get worse every time? Or are we just imagining it? And yes you are so right. Not everyone is equipped to respond to you if you share your health struggles. I don’t want to ever be a hypochondriac but sometimes you do need to talk about what’s happening in your life, not least so that friends and family are aware and can either help or make allowances. But mostly I don’t like talking about it, so I can do so in writing on here and all you lovely lot, my support network, leap the rescue.
Dear Ruth, So sorry to hear this, what you’ve gone through. You are a person with such a sense of fun and I hope that despite everything, that returns very soon. Fear steals the good stuff. I hope that you get the answers you need without any hassle.
All my best
Andrew
Thanks Andrew. I have got LOADS of forms to fill in from the hospital and the ambulance service. The paramedics did a lot wrong so I want to discuss that with them. It’s all a big learning curve. We learn from our mistakes. My huge mistake last time was walking to the ambulance. I may have deteriorated fast anyway but that triggered a massive increase in the reaction within seconds of just a very short walk. Hope you are well. Forever know as Andrew Allergy now no matter what you do 😉