What made you decide to start What Allergy?
Starting the blog was a bit of an accident really. I wanted to do something but wasn’t sure what. Originally, I planned to create a website with reviews and safe places to eat out with allergies and at the same time, my brother wanted to experiment with creating a blog for me.
I ended up with a blog because my original idea wasn’t simple to implement. It’s grown and grown and is now just about to reach its 11th birthday!
What allergies do you live with?
I’m allergic to all nuts (apart from almonds weirdly), all dairy, soya and wheat; these cause anaphylactic reactions and I’ve had so many now I’ve lost count. Recently dairy is my most serious allergy and the hardest to avoid, especially when eating out. I also have problems with other legumes like broad beans, kidney beans, tomatoes and celery but these are not life-threatening reactions. I’m also allergic to latex, nickel, dust, cats, dogs, horses, grass, weed pollen, tree pollen, moulds and some preservatives.
I’m also learning to live drug-free with eczema and am currently going through topical steroid withdrawal. I used my last steroid in January 2019 and applied Protopic for the last time in March 2019.
Asthma and hay fever are also issues that I manage without using many drugs, although I do use a preventative inhaler and the blue one for when I have an asthma attack.
How have your eczema and asthma affected your day-to-day life?
I try not to let either affect me too much, but it can cause significant discomfort, anxiety and irritation. I exercise regularly but it can be very painful – like acid is being poured over my skin when I sweat. When my asthma is bad, it can sometimes prevent me from running and I don’t find it easy in busy places like pubs and parties as they often feel dusty if everyone is moving around. Thankfully I have it fairly well managed now, and I do a regular peak flow check-in, just to make sure everything is going in the right direction.
I think eczema affects me the most because mine is mostly on my hands and face now. I get very self-conscious about my skin. When it’s bad, (especially my face), I get a lot of unwelcome comments and questions about what causes it and what I’m doing to heal. I understand why people ask but it can be so wearing and upsetting when all you want to do is be normal. People don’t realise the effort it requires to cope with it. Most of the time we really don’t want to talk about it – so just don’t mention it.
How have your allergies impacted you during the coronavirus pandemic?
I think in many ways it’s been good for me. I’ve started cooking everything from scratch with fresh natural ingredients, so my IBS has almost disappeared. I’ve cut out all processed foods – something I’ve always strived to do anyway – but I’ve taken that more seriously, so all anxiety about eating out has gone! I’m cooking and eating all meals myself at home so I’m feeling completely safe and calm. I do get a lot of anxiety about eating out and even sometimes shopping, checking labels repeatedly. Going back to basics and buying just meat (when I can get it), vegetables and fruit is proving to be a great thing for me.
I’m relying on others to shop for me at the moment because I am high risk with my asthma and also my constant face touching. Friends and family have been amazing. This does mean however that I get what they can find for me and as other people are shopping for me the treats are not sneaking in, because I’m not asking for them or succumbing to those hunger or greed buys that you get when passing the chocolate aisle.
I’m less stressed out in general about all my allergies, but perhaps more stressed about my asthma and worried any time I cough that I might have Covid-19. Night sweats caused by being peri-menopausal and topical steroid withdrawal keep making me feel like I’ve got a high fever… but I’ve got that in perspective now after a wonderful counselling session.
Being told you can only leave the house once a day has made me take daily exercise much more seriously. I now go out for a walk or a run every day, without fail and I’m really enjoying that regularity and the break in my day. I am also scheduling live-streamed or YouTube yoga almost every day, something I really struggled to implement before we were all locked down! I’m really enjoying this calm, peace and improvement to my flexibility and strength that I can already see after just a few weeks of the new regime.
Have you found that people offer a lot of unsolicited advice for managing your condition?
This is very hard to handle and it happens so often. The worst kinds are the people who have a product to sell. It often puts me off a really good product if someone is insensitive and rude. Most people mean well and although they might not have seen someone with skin like mine before, they generally care and wish to understand. I try to be kind and polite in my responses but often it’s too much. It happens so often that I have started to say, “Thank you, but I don’t want to talk about it now. How’s your work/husband/kids etc. ?” By doing this, you deflect most of the awkwardness and turn the conversation away to something else.
Another good response is to say simply, “Thanks but I’ve done a lot of my own research, see a dermatologist regularly and I’m really happy with how I’m healing my skin.” Then I change the subject again because seriously, it is not helpful being told by everyone that their celery juicing, aloe vera drinking, skincare regime, what they eat, what they don’t eat…and don’t get me started on people telling you to “stop scratching and stop touching your face.”
If you tell people to stop touching their face, STOP IT NOW! It’s like asking someone to stop breathing. We can’t stop and believe us when we say that we spend most of the day trying to ignore a constant level of itching. I’m working on an anxiety habit reversal technique that I hope to share soon which may help people to take a step back and understand their own itch cycle more and get some control and perspective.
You’ve suffered from anaphylactic reactions before. Can you describe it?
It’s terrifying. It usually starts with milder reactions like my mouth and lips itching, a bit of asthma and a raised heart rate. I know something isn’t right and I always know early on if I’ve eating something that I’m allergic to. Thankfully, I have a very active and early warning system. It’s like having a knife to your throat as it begins to close. Mine can start mildly and then accelerate fast! I get a terrible feeling of impending doom, like my body is going into panic mode and it knows this is bad. I begin to shake all over as my body goes into shock.
I use adrenaline at the earliest opportunity and call 999 but am often unconscious before I’ve reached the hospital. I don’t know what happens when I get there. I don’t remember anything afterward, but my last anaphylactic reaction left me in intensive care overnight. That was a truly frightening experience – facing being put on breathing tubes through my nose and a tube to wee. I was on oxygen and a nebuliser throughout the night with my blood pressure being taken every 20 minutes.
The next day, when you have got over the worst of the reaction it’s like you’ve been beaten up. My whole body aches and I often have a headache from all the adrenaline I’ve had pumped into me. I sleep for days and it can take me a week or two to fully recover physically. I never want to go back there again and had crippling anxiety after the last reaction in November 2018, but I’m doing well at staying safe and avoiding my allergens.
What made you decide to give up topical steroids?
I’ve been using topical steroids for as long as I can remember to manage flare-ups. Over the years, it became something that I had to use all the time instead of just relying on them occasionally. I found I was flaring after just stopping for a few days. After a week without using, I was in full on meltdown.
I also noticed that applying a small amount to some eczema on my hand would heal any eczema all over my body. I began to realise that I was locked in this cycle of using and couldn’t stop. I had also had comments on photos of my red face that I’d posted on my blog suggesting I had red skin syndrome and should look into topical steroid withdrawal – but I was in denial for years.
My dermatologist told me it was nonsense, that I was just being steroid-phobic and needed to probably just use them more often and apply the steroids properly. It was about 3-4 years ago that I realised what I needed to do but my early attempts to stop always failed – I always gave in and applied steroids because I couldn’t function without them. I had to work. I didn’t know how I would get through it and keep working. It’s brutal. But in January 2019 I decided I had to bite the bullet and do it. And the rest is history…
What bits of self-care are non-negotiable for you every day?
Meditation and breathing really help. I can’t say I manage it every single day, but I do it regularly and it helps me find calm, peace and that inner place where I know I am safe at that moment. No matter how stressful certain situations are, I need to remember that I am not anaphylactic and most of the time I am fine. I take lots of extra precautions to stay safe, but I am not going to be defined by my allergies or my skin. I want to live my life to the full and help others to do the same. It’s different now that we are in lockdown, but I also do a lot of planning every day, I have a bag with everything I need and will plan carefully where I’m going, what food I need to take and if I’m eating out I start planning weeks ahead with emails and phone calls to the restaurant.
I try to journal daily too. This involves writing how I’m feeling, what I’m grateful for and what’s happened. This is doubly important now and I started a new Covid-19 diary series that will be interesting to look back on after this is all over. It helps me make sense of things and keep control of what’s happening in my life day-to-day. I also live alone so it’s easy to get peace and quiet but trying to do a daily meditation really helps me to stop and just be, even if just for ten minutes.
What do you wish non-allergy sufferers knew about the reality of living with an allergy?
To appreciate how scary it is. You need to check everything – every label, every ingredient. Trusting people is also very difficult. I am always asking, checking and probably driving everyone mad but I must be like this because when I haven’t, I’ve ended up in A&E.
I’d like people to imagine living in the shoes of the allergic person for just one day. Imagine you can’t just eat whatever you want or go wherever you want. Imagine you can only eat a certain brand of milk and behaving like a fussy nightmare. It’s hard to trust anyone without getting panicky and feeling like a bit of a freak.
What advice would you give anyone who is really struggling with topical steroid withdrawal (TSW)?
Firstly, speak to your doctor and dermatologist. The more people do this, the more the medical profession will have to listen. You may find your doctor is sympathetic, but most are not. What else can they say? Do they admit that the treatment you were recommended has put you in this position? They may have nothing to offer you to help except more drugs, different drugs like immunosuppressants and biologics, which also have side effects. I tried methotrexate (an immunosuppressant) which I do think helped me in the early stages, but eventually, it compromised my immune system so much that I got shingles. That was even more painful than TSW and lasted for five weeks. That was when I realised if I was going to do this, I was going to do it properly with no drugs at all.
Explore the various social media groups on Facebook and Instagram. I’ve found Instagram far more supportive and helpful. There are loads of people sharing their journeys so you will not feel alone.
There is also an organisation called ITSAN which is a charity supporting people going through topical steroid withdrawal. They have loads of information available to explain what’s happening in the body, what things might help you and resources you might find useful.
Reach out to bloggers too and watch the Preventable Documentary. Arm yourself with all the information out there and then plan your attack – because this is a battle. If anyone wants to chat, they can follow me on Instagram @WhatAllergy or read my blog where I am sharing my journey towards skin freedom at www.whatallergy.com.
I still have a long way to go, but 14 months in, I no longer have the crippling zingers (chronic nerve stabbing pains), I can sleep at night and I have a lot of healed areas. I do however still spend some days itching constantly (mostly my hands and face now), scratching and berating myself for doing so. I still get flares, red burnt skin, crusting and flaking, sometimes every day but every time it gets easier, fewer flakes and less painful
I realised this week that I can go for a walk without taking moisturiser with me… so I can survive 30-45 minutes without needing to apply anything to my skin. This is progress!
Finally, the best piece of advice I can give anyone is to learn to love yourself and to love your skin. It is doing what it can to heal you. It’s fighting to make you well. Learning to look in a mirror and say, “I love you, Ruth!”, and to really mean, has been one of the hardest things to learn. The guilt, shame and grief for the life you could have had if it weren’t for eczema is really damaging. I am learning to embrace every part of this journey and marvel at my skin, body and mind and its capacity to heal. I know I’m closer to healed skin than when I started this journey and I haven’t regretted it for a single moment.