It has been two months since writing about the air purifier in Hope, and other emotions. And the result? The clue is that this is titled progress update. Progress, yessssss!!!!!
After plugging in my wonderful machine, I first noticed feeling more clear-headed and a little less anxious after about three days. After a week I thought that maybe I had a little more energy, but couldn’t say for sure. After two weeks my brain fog had definitely improved and I clearly had more energy – I both felt better and was doing more. After three weeks I felt myself hit a plateau , but the gains that I had made were clear.
I can best illustrate just how far I’ve come by giving a few examples:
Mid 2013 – Terrifying – the lights were too glary, everything was confusing, I had to use my eyes to look at things and work out what they were, I couldn’t walk by myself, I couldn’t hold a basket or lift anything, bending down to look at labels or to get items put me at risk of collapsing. There was no way I could go there by myself.
Feb 2014 – Disliked it – A full shop was exhausting (if I had someone to carry it all), but I could walk unaided. Popping in to grab one or two things was easy if I was feeling OK and knew where they were.
Aug 2014 – Fine – A full shop by myself is still tiring but I could do it if I planned a rest before and after. I could even carry in all the bags if I had to.
Mid 2013 – often – after walking half a block, after standing up, after doing anything. It was scary.
Feb 2014 – hardly ever – but I often felt shaky, dizzy and breathless after exerting myself.
Aug 2014 – once – today, oddly enough, but it has taken some truly terrible management to get me to this point.
Mid 2013 – light – I could stack the dishwasher and do the laundry (while sitting down, and I would lie down during and after).
Feb 2014 – light – I could clean the bathroom and do the laundry (NOT on the same day), but I had trouble managing and often had a ‘crash’ day afterwards as a consequence.
Aug 2014 – medium – I can clean the bathroom (although all in one go is still not advisable), I can do laundry all in one go while standing up and can do multiple loads on the same day. I’m starting to wash the dishes fairly regularly.
Mid 2013 – not really – maybe every 2-4 days. Hair washing – No. Maybe once every week and a half. Just a short shower would leave me shaken and breathless and needing to lie down for the rest of the day.
Feb 2014 – most days – and I would only need to rest after washing and blow-drying my hair (unless I was particularly tired).
Aug 2014 – all the time – showering is now a relaxing activity that soothes my muscles. I feel better after a shower, not worse. Washing my hair is still tiring sometimes but that’s mostly due to my poor management and pacing skills.
Mid 2013 – not really – I could throw together chicken and beans in a pan or make a filling gloop from chia seeds and rice milk, but the effort would leave me wasted.
Feb 2014 – not often – mmm, scrambled eggs on toast! Tuna and grated carrot!
Aug 2014 – not often – but the baking spark is back! I will bake something every two weeks or so just for fun, just because I can. Sometimes I can even wash up after myself. Sometimes I don’t regret doing this the next day (due to post exertional malaise).
Movies at the cinema:
Mid 2013 – what, leave the house? Except for that time I watched The Great Gatsby and couldn’t walk out of the cinema unaided.
Feb 2014 – the loud sounds and visual stimuli would leave me feeling shaken.
Aug 2014 – hello cinema! I can even go to ‘thinking person movies’ where I get to use my brain and can become emotionally invested in the movie instead of overwhelmed by the sound and light.
Mid 2013 – no. – after collapsing after walking half a block I became scared of walking by myself and needed someone there just in case. As I was living in the city I irritated A LOT of taxi drivers by asking them to take me one or two blocks to the pharmacy or massage parlour.
Feb 2014 – a little, just one suburban block – but slowly and carefully, otherwise I would have a ‘crash’ day afterwards.
Aug 2014 – I now walk without fear – this is hugely liberating. I walk on the beach, but I am still finding my limits and have spent days in agony with post exertional malaise because I’ve accidentally walked too far.
Mid 2013 – perpetual zombie – It was like being drunk, hungover and concussed all at the same time. Conversations were really difficult – to the point where I would sweat with effort to keep up. Jokes were really confusing. I was so confused I would get upset extremely easily. Phone Sudoku scores; abysmal. Reading; slow and tortuous, new concepts extremely difficult. Writing; a short blog article would take me days.
Feb 2014 – small brain – I felt normal most of the time – just tired and bit ‘out of it’. I didn’t feel equal in intellectual discussions and was easily confused. Phone Sudoku scores; bad. Reading; OK, new concepts heavy going but I felt I was coping. Writing; difficult, editing would take a day or two.
Aug 2014 – almost all the brain – I feel normal unless I’ve pushed myself too far the previous day. I can take part in serious conversations and come up with a point and get it across. Phone Sudoku scores; pre-2013 levels. Reading; I still am not craving fiction, but I’ll happily read new ideas on CFS/tax policy/environmental toxins. Writing; I can get an easy topic out in a few hours – I’m still finicky with editing, but I think that’s just me.
Pretending to be a normal person:
Mid 2013 – a few hours – I had friends over a few times, but it would leave me bed-bound for a few days afterwards.
Feb 2014 – a few hours – I could almost go a day if I had a few naps in between meals. Depending on the level of exertion I would have a few days of P.E.M. and increased fatigue afterwards.
Aug 2014 – a day – I can be a normal person for a day, but it leaves me ruined for the next two days. With effective management I actually feel like a normal person for about 1-2 hours of the day. It’s a good feeling.
The list goes on; I can walk up stairs unaided and without stopping to catch my breath. Even on my worst days I can drive short distances. Getting dressed is easy. Guy has stopped freaking out every time I have a bath because I’m not likely to fall over or pass out anymore.
I am still far from living a normal life, and a long way from my pre-2013 energy levels, but I am making progress, and progress is good.