Back in 2014 I wrote Cold Urticaria and the Rural Canadian Male. This is a follow up to that to talk about the things I have learned living with CU.
Know you're reaction point
The First thing I'd tell to someone newly diagnosed with CU is to get a good indoor outdoor thermometer or a small thermometer they can take with them. This was very useful for me in determining the temperature at which I start reacting. For me that is around 10C (50F). knowing this temperature is very important to managing ones CU. It is especially helpful in the spring and fall as it lets me know if a day is a dress light or medium day.
Knowing this temperature is not the only deciding factor on how to dress as things like how damp/wet it is out and how windy will raise the temperature I react at by a few degrees. A clear still day of 15C and I'm probably Ok. Make it a windy day and it gets iffy depending on how strong the wind is. Make it a wet windy day and I'll be reacting for sure even at 15C.
Stay warm inside
In not talking about making sure the heat is on. I expect that you'd do that anyway. However I have learned that not getting "chilled" is very important. And I've also learned that unless you're paying close attention you may not even notice that you've gotten a little chilled.
I first noticed this on my walks to the local Tim Horton's. My hands (usually the first thing to react) would be fine on the way to Tim Horton's but would react on the way home. At first I just assumed that the temperature had dropped or the wind had come up a bit and so I needed heavier gloves. But It kept happening even when I was pretty sure it had gotten warmer. What I finally clued into is that Tim Horton's must keep things a bit cooler then I do at home and the combination of that and me sitting working on my computer (being inactive) caused my body temperature to drop a bit which was priming me to react once I went outside.
I've come to think of it as a buffer or battery kind of thing. If I'm nice and warm inside which keeps my body temperature up I have more stored heat and so don't cool to my reaction point as quickly when I go out. If I've already dropped a couple of degrees of body heat I'm that much closer to my reaction point and so will react much more quickly upon going out. So making sure that I'm staying warm is important even when I'm inside. The tough places for this are the places that are just a little cool. You don't really notice it but you're loosing body temperature. I'm sure if I were in them long enough I'd notice but by then I'd probably pretty chilled.
All I can do is pay attention and dress a littler warmer then usual when I'm at such a place.
It about a lot more then just the weather
This is the thing That I'd most like people to understand. It's about anything cold.
- Cold drinks - which result in a very unhappy stomach and dumping as the body tried to remove the irritant as quickly as possible.
- Handling cold items - frozen food, laundry done in the cold cycle, thing from the fridge, etc.
- Water - any water that isn't from the hot tap will cause me to react. It's not necessarily under 10C but water sucks heat out of things fast. And rapid cooling causes a reaction.
So when you start to think about things like that a clearer picture forms. I can't have ice cream, or ice cold beer. I can't go swimming. Getting sprayed with a garden hose would be dangerous. I have to be quick handling things from the fridge or freezer, or get gloves, or just deal with the fact that my hands are going to react. And on and on.
You're going to have reactions
When I was first diagnosed and got on the Reactine and knew to bundle up etc. I mistakenly believed that I'd be able to get to a place through care and medication of being reaction free. Unfortunately this is not possible, or at least not likely I could go to the maximum dosage and stay there all the time and maybe I'd not react, but I doubt it. In my experience the meds only limit the severity and duration of the reaction and don't actually prevent it.
Also this isn't like a nut allergy where I can just stay away from nuts. Cold stuff, or stuff that causes rapid cooling (like water) is everywhere. I have to walk in it, touch it, breath it, etc. there is just no way I'm going to be reaction free. But that is OK. I've learned that part of having CU is coming to terms with the fact that I'm going to have reactions.
The goal has to be as few reactions as possible and no big and dangerous reactions.
Reactine (Cetirizine) isn't perfect
About a year after I was diagnosed I started suffering symptoms that for all the world looked like Rheumatoid Arthritis. So much so that it was starting to affect my mobility and daily life. But as I went for test they all came back negative. So I started to wonder what had changed that might be causing these symptoms. The only thing I could think of was that I was now on 20mg/day of Cetirizine so I did a web search on longterm use of Cetirizine at higher than the over the counter dose (10mg) and found that I was not alone. Many people reporting joint pain and other symptoms. So I stopped the Cetirizine and poof all my joint pain and fatigue went away.
Luckily there are a multitude of options for daily antihistamines so I just switched to another and haven't looked back.
Things I'd tell people who have a friend that has been diagnosed with CU
The number one thing is don't say stupid shit when someone comes to you and tells they have Cold Urticaria (or Heat Urticaria, or Stress Urticaria)
Things like "Well, bundle up" or "I hate the cold too" just don't cut it.
Now I completely get that it is not an everyday situation and there is going to be that uncomfortable "Oh crap, what do I say...." moment. So let me give you a head start on it.
Instead of "well, bundle up/stay warm" which when you break it down really comes off like this:
Her: "My puppy just died" (I have CU and I'm kinda freaked out)
You: "Guess you better bury it then..." (Well, bundle up/Stay warm)
When we put it like that it is easy to see how it is missing the point.
As for the "I hate the cold too". It is a totally annoying response as CU isn't about 'liking' or not 'liking' it is about "If I'm not careful the cold (anything under 10C, 50F) could KILL me". That is a world away from "Brr.. My toes are freezing.. This sucks"
So, Better responses:
"oh Man! Does that mean no more ice cream, that blows"
"Shit, that must be rough/scary theres a ton of stuff that'll make you react"
"Gee, I bet that is complicated to manage day to day"
These all show that you kinda get it and don't come across like a brush off. Trust me your friend with CU will appreciate the good response.