After the Mystery Option C and Dilemma posts, my friend Tony had an idea – if I found it difficult to talk about how I was actually feeling, perhaps I could use some kind of visual symbol or code, like pin badges, to communicate it to those in the know without having to use words.
The more I thought about it, the more the idea grew on me. So I’ve been out scouring charity shops and online for pin badges that could provide a coloured code for how I’m feeling without having to go into great detail unless it’s the right place, time etc to do so.
It’s early days and a bit of an experiment but I thought we could see how it goes. So for those of you interested, here is the code:
(I’ve shared a lot more of my symptoms than I normally would – I’m not doing this for sympathy or pity but because people have asked and this seemed like as good a place as any)
Green = Hooray! I’m migraine-free, or at least symptoms are mild enough to not interfere with everyday life. This is good news, I shall look forward to wearing this pin very much indeed 🙂
Amber = A moderate migraine, or a bad migraine on the way out. Things are a considerable effort but I’m pushing through. Most likely to be vertigo, headache, nausea, dizziness and visual disturbances, but plenty of other things might be thrown into the mix along the way. This is currently my idea of “a good day”.
Red = I’m feeling rougher than a badger’s arse (tribute to Marian Keyes). My head and face hurt so much I think I’m going to die. I can’t concentrate or think straight. The room is spinning and the floor is lurching up and down. My stomach’s churning and I feel like I’m just about to be sick but I probably won’t be, I’ll just stay in intense nausea limbo for the next few hours. I sometimes have a major dip in mood, or I go hyper, neither feels like me. I might also get irritable, upset or anxious for no reason. My body feels like lead and I’m exhausted. I’m clumsy and not completely in control of my movements. I’m super-sensitive to lights, sounds and smells. It’s like having bad flu and food poisoning combined, while also being blind drunk and painfully hungover at the same time.
Black = total crash. By this point I probably won’t be able to speak or understand what you’re saying to me. I’ve lost all social skills. I’m telling my arms and legs what to do but they’re not responding, in fact they’ve gone completely numb. My face and eye are probably about to start drooping down the left hand side and I really want to be alone because I’m embarrassed but I’m also really scared. Everything looks different, sounds different, tastes different. I’m totally confused and disorientated, it feels like I’m falling down a very long dark hole. I can’t tell you what I need because I don’t even know myself. I’m frustrated and scared and embarrassed and cross with myself and I don’t understand what’s going on or where I am or even who I am. Also known as ‘migraine aura’, fortunately this one only happens 3-4 times in an average week and doesn’t last more than an hour or so at a time.
So there you have the code. I’ll be trialling it over the next few weeks to see how it works. I’m hoping it will give friends and family a better insight when all I can manage is an “I’m fine”, and I’m also hoping it will help me to tune in more honestly to how I’m feeling. Hopefully it will help me to celebrate on the green and amber days and to take it easy on the red and black days.
Let me know what you think.
And thank you Tony for the idea!