What I Want You To Know About My Life Allergic To Cold

What do you mean "allergic to cold"?

I have a condition called Cold Urticaria, meaning I get an urticarial rash (hives) on exposure to cold, as well as other symptoms such as breathing difficulties, pain, and itching. There are lots of theories as to what causes Cold Urticaria, but nothing concrete, and nothing baring a cure.

It's Incredibly Painful

I've always thought CU was a bit of a misnomer, because it goes way beyond the rash. If I touch cold, the area will swell up, it will itch, and there will be intense pain that isn't always visible. If cold gets into my ears, for example, walking outside in a cold breeze, my ear will swell up, and it feels like pins being pushed into my ear drums. If I breathe in cold air, my throat will swell up and breathing will become wheezy and painful. Eating cold food makes my tongue itch. 15 minutes in an air-conditioned pharmacy did this to my face... And it was so much more painful than it looks. Beneath the surface of redness and some puffiness was sinus pain that felt like I was being stabbed between my eyes. My eyes watered, and I had a further reaction to those too, just to add insult to injury.

Treatment For Cold Urticaria Isn't Perfect

The first line, gold standard treatment for Cold Urticaria is an antihistamine called Fexofenadine. Any antihistamine could be used, but Fexofenadine is the one recommended by allergists and doctors worldwide. But this treatment isn't perfect. All drugs come with potential side effects, and Fexofenadine is no different. When I started it 2 years ago, I had a week full of headaches and fatigue, which thankfully went away as my body adjusted to the drug. Some people aren't so lucky, and the headaches and drowsiness don't pass. If you take your medication in the morning, you also have to give up your fruity breakfast, as fruits like grapefruit and orange stop your body from absorbing Fexofenadine. It also isn't 100% effective. I still react in the shower and extremes of temperature, and it does nothing for the breathing issues.

To treat the breathing issues, a salbutamol inhaler can be used, just like in asthma, to provide relief after symptoms have occurred. The packaging says you can take a dose prior to exposure, but I haven't found this to be effective. It also comes with side effects such as heart palpitations and tachycardia. I briefly tried another asthma drug called Montelukast, which can be used to treat hives, urticaria, and asthma symptoms, but this had a huge impact on my mental health, without providing much benefit for my Cold Urticaria symptoms.

Xolair, colloquially known as "allergy shots" are being trialled in Cold Urticaria patients, but it is exceedingly difficult to get prescribed this for Cold Urticaria in the UK, and with the risks involved, I'm not exactly bending over backwards to try it.

Vogmasks Get Me Shouted At

The only effective preventative I've found for Cold induced breathing problems has been wearing Vogmasks. In September 2018 I tried on my first fabric mask in a curious attempt to help me breathe outside, and for the first time since my diagnosis 10 and a half years ago, I walked to the shop and back with absolutely no breathing problems or chest pain. At the time however, wearing a mask outside was not seen as socially acceptable, and I received a lot of bother from the public, from shouting abuse at me to discrimination in employment.

I want people to understand that these masks are my freedom. I want people to understand that masks exist outside of covid-19. I've experienced no medical side effects from wearing masks. The only negative experiences I've had with masks have been people's reactions to them. I want people to know that just because they are medical, it doesn't mean they can't be made fun.

Being Allergic To Cold Is Expensive

There is a long list of hidden costs of Cold Urticaria. Prescription costs and the price of vogmasks adds up over time. Transport costs, because I can't spend too long walking to where I need to be if it's cold out, can be extortionate. Thermal underwear isn't cheap. Thick coats aren't cheap. Energy bills to heat my house aren't cheap. And the social cost of being confined to essential journeys only during winter must be considered too.

It Affects My Diet Too

Unsurprisingly (I hope), it affects my diet too. Let's start with a first world problem: I really shouldn't eat ice cream. If I choose to, I take an extra antihistamine beforehand, and I have to make sure it's warm before I swallow it. It's more steps than the average person has to take before digging in to some Ben and Jerry's. When I'm out and about, I can't buy a meal deal and eat it straight away, I have to let it warm up to room temperature before I can safely and comfortably dig in. Same with single serve drinks. How often do you see 500ml bottles of water being sold that haven't been chilled? They exist, sure, but I often have to visit many shops before I find some. I am only human, so I don't always remember to bring my own from home. Warm beer. Need I say more?

I Will Still Play In The Snow If I Want To

Despite all the problems Cold Urticaria causes me, there are some circumstances when the reactions are worth it. For me, whenever it snows, all bets are off. I of course take all the precautions I can. I have become an expert at dressing exactly warm enough for sub-zero temperatures. I take my antihistamines, I grab my inhaler, I put my mask on, and I go and have fun like every body else. Cold Urticaria will not stop me from having fun. Snow is my favourite thing. Like how lactose intolerant people will demolish a 5 cheese pizza given half the chance.

It's Not Just A Winter Problem Though...

If I had a penny for every time I'd been told that moving to Australia would solve my problems, I'd be rich. We've talked about air conditioning. That's overly rampant in summer, and it's never labelled in shops. There's rarely a sign on the door that says "we have the air-con on!". I react to water cooling down on my skin as soon as I get out of the shower. I react to drying my hands on a slightly damp towel. I react to my own tears as they cool down on the journey down my face. I react to my own sweat, as it's literally there to cool you down. I could sprain my ankle any time of year and need ice to help bring the swelling down. I could burn myself at the height of summer and need cool water to treat it. Bath time can be a nightmare, as soon as a part of my goes under the water it has to stay there, as when it re-emerges it will cool off and be covered in hives, and it's not fun coming out of the bath feeling itchier than when you went in.

Snowflakes Are My Mascot

You know what they say, keep your friends close and your enemies closer. I have an unreasonably large collection of snowflakes, as well as a snowflake tattoo that I got for my 10th snowflake day (which was actually my 9th because I got the dates wrong oops). I wear my snowflake with pride.

And Finally

After all the hardships I've had for being allergic to cold, I don't think I'd change anything. I love my life. It's given me opportunities to talk to people, raise awareness, help people, and ultimately be a badass. It also gave me a head start on the whole "wearing a mask everywhere" thing, which is a nice bonus. I wouldn't be who I am today had this not been my life, and I'm for that I am so thankful.

If You Want To Know More...

You can follow me on YouTube where I talk in depth about my life allergic to cold, as well as deafness, disability, paganism, science, queer stuff, and lots lots more. You can also find my Facebook page where I post pictures of Cold Urticaria problems, my Instagram, and my Tumblr page.

Stay warm! ♥