There’s been a shift in my fatigued state over the last month in that the bad days are definitely better. By this I mean that they are getting less frequent and less severe, but they are also getting harder to deal with. I was confused by this, because I should be happy they aren’t happening every second day, and that the crashes are no longer taking a week to get over, but when I do hit the wall I’m indignant, I’m grumpy, I’m bored and I think to myself, how the hell have I dealt with this for almost a year and half???

I’m stoked to be hitting the wall a whole lot less and I think it’s mainly because of what I’ve learnt through the CFS Health Centre – I have finally stopped pushing myself by really tuning in to the symptoms, I have made my health my priority, have made a baseline for my days that always includes rest and actually eating properly (no, vegemite toast three times a day does not count as eating properly) I have slowly started doing some exercise again and I am managing my bad days so much more sensibly – so why am I finding crashes so much harder to deal with?

Well, I’m no longer crashing into my zombie state where I am happy to stare at a wall for a day as if I’m on drugs, I’m not crashing in to the pain-riddled days that pain killers don’t touch, I’m not lying with my head under a pillow because the headache creeping down my forehead feels like it’s slowly killing me… but I am still fatigued, oh so fatigued. I’m still sweating through my clothes, I’m still losing my appetite and reacting to foods, I’m still getting nauseous, I’m still achey and the brain fog is bad but I can function to a point.

My point is that I am crashing way less hard so I still feel bored, I still feel frustrated, I am very aware of what’s happening, and it sucks! This is different to the painful drooling zombie state I was crashing in to, which is definitely positive and I’m told is a good sign, but it means I’m awfully aware of it all. I am aware that I’m nauseous and fatigued and in pain and my brain feels like cotton wool; and that sucks. It sucks because I used to have a full, active, varied life, and now my life revolves around when the postman will deliver the results of my latest eBay binge (most recently Pretty Little Liars season one and NCIS season three) and assessing how much energy I will need to drive 20 minutes in to town to see my friends and still be able to drive back without running off the road or paying for it the next day.

Over this last year I’ve pretty much perfected finding the bright side in dark and twisty times so I went in search of some positives to get my brain back on track and stop cracking the sads each time fatigue strikes me down… And those positives are:

• When I crash I know it won’t last as long, and it’s not going to be as bad as it used to
• I’m not getting worse, compare me this time last year to now and wow
• I know enough about my recovery to prevent going back to my worst
• I know how to manage bad days now and don’t need to be scared of them
• I know I will get better; I am getting better
• Getting bored by constantly watching DVDs means my brain is starting to work again
• I may not have the good things from my old life but I also don’t have the bad things such as being stressed out by my job
• There are dogs at home and horses and cats, none of which were in the city with me
• I no longer start my day running for the sardine-can-like tram and forcibly squeezing myself on to it
• Mum and Dad have air conditioning! For an Australian summer this is important!

A little brain reframe helps, but since I’m still bored and grumpy and frustrated I have had to come up with new things to do on my bad days to keep me sane, but things to do that don’t send me sideways… Tricky, but not impossible – so do not even think about picking up a book Susan, Mr Evil Headache is just waiting for you to do something so foolish as read, it’s audio book and podcast time.

I’m getting better and we have had brilliant sunsets of late : )