I have had a couple of severe flare ups where I was outside on a windy day, the day b4 flare up. Anyone else experience this?
When you say ‘severe flare ups’, can you explain which symptoms flare? For some people differing triggers can set off differing symptoms. For example post craniotomy my temperature regulation has been a mess, in nice moderate temps I’m OK. But I sweat when I get too cold and the heat, extreme heat 40C+ (100+F), knocks me around terribly. Here in Australia we have many 40+ days each year and I have to hibernate. Presently, its around -1C in the mornings and if I don’t wrap up I sweat and get colder.
I don’t have symptoms with wind, but bright light OMG. Bright light can make my head want to explode, especially when it’s flashing through the trees as I’m travelling down the road, the headaches can be MASSIVE. If I do too much in my day, I know that tomorrow I’ll pay for it. I get ‘tingles’ in my hands and/or feet and in it’s bad stage it’s like my whole right side goes numb, my eye droops and closes. Some people have told me I look bloody awful. My response… “You want to have a look from this side… … it IS BLOODY AWFUL…”
Look, it’s not that I can’t do anything. I just have to manage what I do, when I do it, how I do it and for how long. Before if I had a task, I did it. But now I have to plan things out much more, sometimes break the task up into parts, do 2 parts today, do another 2 tomorrow. I could do them all today but then need 2 days to recuperate (and manage the nasty symptoms that come with it).
I know for me I need my dark sunglasses outside, light is my enemy
If wind is not your friend, how can you manage it? A woolly hat possibly? maybe air plugs?
Sometimes we need to think outside of the ‘normal’ for processes that work best for us, as individuals, some people may look and think “What? Why?”, but if it works for you, who cares.
For me it all comes down to management and that has SO MANY variables each and every day, from the weather to the activity to sleep patterns to energy levels and they all play a part. But everybody’s symptoms and management plan’s are different.
Merl from the Moderator Support Team
Thank for detailed response. I can relate to just about everything you say. When I say severe flare ups I am referring to neurological symtoms… such as shakiness all over, last time head rushes like being electrocuted.