I’ve been in a severe flare for the last 37 days, a traumatic experience that’s required quite a lot of resilience to get through. Every day I’ve had to fight with myself to overcome my natural tendency to curl up in a ball and instead force myself to keep moving, reading, stretching, cleaning house and generally stay in good spirits. But I’ve still been gradually worn down, the willpower reserve has been sorely depleted and I’ve become ever weaker and fatigued.
Whenever I have pain burning throughout my body I try to remind myself that pain is just a signal, that’s in my control to interpret, similar pain might just be the result of a crazily over-enthusiastic workout at the gym for example, a positive event. Although pain is the headline symptom, taken on it’s own it’s easy to cope with, but combined with fever, fatigue and brain fog it’s altogether different, there’s no faculty available to me to fight back with. I can’t distract myself with work (brain fog), combat the pain with endorphin inducing exercise (fatigue), kick back and relax (shooting spasms) or even get comfortable (fever, shivers). Add in the unpredictability of not knowing whether I will be able to walk or use my arms from one hour to the next and making plans becomes impossible (or risky). The only option is to live hour by hour opportunistically doing what I can to make the best of a bad job.
Today though, although I’m still sore and achy, while walking along the southern dunes it gradually dawned on me that the most crippling of my symptoms had gone, the brain fog had lifted, I could think! I spontaneously burst into tears, a mix of joy at getting my brain back and suppressed anger, frustration and fear at having been deprived of a fully functioning one for so long.
One of the particularly bitter sweet characteristics of my condition is that I’m blessed with roughly 25% of my time symptom free, which is also a curse, because most months I get a short reminder of what live is meant to be like and just as I’m adjusting to normal life it’s cruelly taken away again.
Of all of the challenges I live with brain fog is the worst and almost completely ignored by the doctors that support me and the researchers who support them.
Ironically this lifting brain fog happened on one of the rare days that St Anne’s experiences mist, it had mostly burned away when I took today’s picture from the top of one of the dunes and looking down on Fairhaven Lake, it felt just like my own brain fog had been burnt away by the sunshine.