Last year I developed a sudden onset disease. Most likely it will be with me for the rest of my life, though there is a chance that it will go away of its own accord.
It is an autoimmune disease called Cold Urticaria.
Literally I am allergic to cold temperatures……I can suffer anaphylaxis to being exposed to cold temperatures. Imagine a peanut allergy but the whole world is a peanut, and I cannot control my exposure to it. There are three variables to my allergy that I have found;
1. The amount of body area exposed.
2. The length of time I am exposed.
3. The temperature at which I am exposed.
I take twice daily antihistamines in the hope that they provide a softening of the effects and they may buy me some time if I have an overwhelming response, time to call an ambulance and give myself ( or get a passerby) to jab me with my 2 epipens of adrenalin. Whoa – I have to inject myself?
Surely it is easy to avoid the cold though, just move somewhere hot, like the tropics and it’s all sorted?
Exposure can be obvious – cold weather is usually predictable and you can dress for it, as long as you don’t mind looking like a walking doona at times!
It’s the not so obvious exposures that cause problems for me.
– Holding a cold drink.
– sitting on a cold chair (think of a chair that has been in airconditioning).
– touching a cold surface.
– playing sport in even moderate temps, you get hot, you sweat, and sweat cools…..causing a reaction.
– a sports injury, and a first aider wanting to put ice on it.
– Being knocked out if I am playing a sport, especially turf hockey and being exposed.
Probably most catastrophic is swimming.
With a partial or whole body immersion in less than bathwater temperatures, an overwhelming response is expected and unfortunately one of the first symptoms is dropping blood pressure, which makes you unconscious, which makes you drown.
The beach was bluntly banned for me by my specialist. I have successfully swum in lukewarm backyard pools, with competent adults with me in case it all goes horribly wrong. Mind you, that is in the middle of sweltering summer days and to reduce the risk further, my new bikinis are a full length wet suit!
This impacts on the boys, as I can’t take them swimming by myself. There needs to be another competent swimmer with me to dive in if it all goes wrong, because I can’t.
There is hope
Annually, our family will travel to the snow fields and ski with our friends. A wonderful way to detach from the world and create memories. We thought this was lost to us as a family as well, however my irrepressible hubby spoke to my specialist and, inspired by people who have this disease and who live in Alaska and the like, figured there must be a way around it.
And as long as I:
– do not ski alone,
– wear a helmet,
– ski with someone competent in first aid and administering an epipen (and who does not mind the added responsibility),
– ski only on blue sky days,
– avoid melting snow,
– wear 3 times the layers that everyone else does,
– carry an emergency space blanket,
– carry extra warm gear,
– Wear artificial heaters in my gloves and boots.
– carry a mobile phone with great reception
– and do not mind suffering the moderate effects of cold exposure – Skin on affected areas feels like it has been scalded for over 4 hours, flu like symptoms for up to 24 hours after cold exposure and swelling to all exposed areas then I can go skiing!
In other words, its worth it!
There are many negative things about this disease, most of which I cannot control or change. But the thing I hope to achieve with this post is twofold.
One is awareness. Since I have started talking about my disease many people have become aware of milder symptoms being present in them or their family members and have gone on to be tested and treated.
And secondly is making contact. There is no support network, information portal or foundation outside of North America. I would love to make contact with other people and possibly see where enough networking and support takes us. There is an awful lot NOT known about this disease.
If you are interested in developing awareness, or have any questions, feel free to contact me, or share this post and spread the word.