I started noticing changes in September, it didn’t feel like I was living in sludge all the time anymore. It didn’t take all my effort to focus and concentration to think, move and do. I was starting to have a bit of space, a bit of freedom from the constant effort required to survive. Sometimes two thoughts could even co-exist in my mind at the same time again!
I have toxic brain injury symptoms, MS symptoms, carbon monoxide poisoning symptoms, and MCS/ES/EHS and FM. Throw in a bit of adult onset, intermittent relapsing, chemical exposure induced autism too, just to make it more interesting. (Note: Due to the fact that medical offices and professionals are not accessible to people with severe MCS/ES, because they and their offices are still using toxic fragrances and cleaning products among other things that affect indoor air quality, I haven’t been able to get official diagnosis on all these, I’ve had to try to understand and cope with it on my own)
It’s hard to describe what it was like, but I’ll try, because unless you’ve experienced it, you can’t even begin to imagine what it’s like. I was already in bad shape, but from 2007 on, after the roofing repairs and road asphaltings, my brain almost shut down. It was a struggle to get anything to happen, to keep myself alive. Even thinking took an extraordinary amount of effort, and that is something most of us do incessantly without any effort at all. In fact, it requires an effort for us to stop thinking! For me, to complete a thought, or to write a complete sentence that made sense, was a huge challenge. And in fact was impossible more often than not, because I couldn’t find enough words to say anything but the simplest things, and what was happening was not simple.
Most of us will stand up when we want to stand up without any bother. I had to find a way to get my brain to complete the message that when I wanted to stand up, my body should move, when I wanted to get dressed, that my arm should move into the sleeve… those things didn’t happen on their own anymore, I had to find ways to make them happen. I did have some occasional better hours, and even a couple of good days a year, but 99% of the time it required an immense effort to survive.
To remember to take the supplements I needed every day was a challenge, in fact, if I didn’t almost trip over them, I wouldn’t have known they existed. I had to place things in the open based on what part of the day I needed to take thinks or make them, to trigger my memory.
I couldn’t put the kettle on without setting the timer to ring, even in the same room, because the sound of the kettle boiling wasn’t enough to alert me to take the next step.
To cut a vegetable without cutting off a finger was another challenge. My co-ordination was off.
To walk on uneven ground without tripping was a challenge. Stairs were a problem. And the land at the cabin was uneven, and slippery when wet, or in the winter with snow and ice. Lifting my feet was hard.
Walking outside without a cane or walking stick wasn’t possible from 2007 until about a year ago, and there are times (after some exposures) when I still need the extra support.
I remember thinking that I got so little done in a day, yet I was exhausted from those few activities that I did do. Communicating in sentences was exhausting. And if I did have any kind of a conversation, where I had to think (not just free-flow which was easier with some subjects), it seemed like I only had a limited number of neuro-transmitters I could use during any given day or week. If I tried to use more, I had none the next day (or weeks). It would take a long time to process info in a way that it made sense and I could remember it or write it down so that the next step could be possible, whatever that would be. More often than not, the next step didn’t happen, because survival got in the way.
At the cabin, getting to the outhouse did take more time and effort than going to an indoor bathroom would take, and the old stove with burners that only half worked did take longer to boil or cook things than a fully functional stove would, and hauling and pouring water from big glass bottles took more time and effort than turning on a tap, but even with all that, I must have been moving in very slow motion… I was lucky to have the time and energy to take some photos of the wildlife through the window. After making dinner and washing the dishes at night (boiling water to do so) the day was over and it seemed to have just begun, although it also seemed like the same day was repeating more or less endlessly… somewhat like in Groundhog Day, although with perhaps 1/1000th of the activity. Everything, absolutely everything, took a monumental amount of effort.
It did get better while I was at the cabin, but not enough to be hugely encouraging about my future prognosis. During Christmas 2010 I finally did start to feel like I would survive, that death wasn’t more probable than life, that I could leave my back-up plan of a one way walk into the lake behind me, but it wasn’t until a couple of months after moving here to my safer home, that there was a real change in the way my brain was working.
I don’t remember all the details, but I do remember something changed in September. The sludge was slowly lifting. It didn’t take all my effort to do what I needed to do to survive every day. I had moments here and there where I could sit and enjoy something and even feel the enjoyment.
Every month or so since then I’m aware of more changes, sometimes after a very disconcerting week of what seems like re-calibration, where nothing is certain and everything is shifting.
More memories from different parts of my life are coming back, sometimes in surprising ways. I’ve had to work on processing events that I was unable to process for several years because there simply wasn’t the space or ability to connect enough thoughts to understand them in any context. Events that were significant too… I had a lot of them, and some misunderstandings that I wasn’t able to clear up because I simply couldn’t get enough words into my mind at any one time to express a whole thought in any coherent way. The minimal sentences I was able to get out were so often mis-interpreted that I gave up trying. Memories like that are still painful, some situations are still unresolved, but now I have hope that I will regain the ability to deal with a variety of complexities. And someday even mend some bridges…
For now, I’m extremely relieved to have as much of my brain back as I do. I’m now able to sometimes make the effort to read entire articles, things with paragraphs that are longer than two sentences each, some big words, and some subjects I’m not very familiar with, but those are difficult and still hurt, so I don’t do that too often. Re-introducing increasingly more complex material I’m more familiar with seems to be a good step. And words are slowly coming back to me. Even words I didn’t know I knew!
I love learning! I look forward to learning new things again. Hmm, actually I already have! I learned how to make and bake a simple chick pea flour pan bread, kind of like a pizza crust, and have experimented with some toppings. I can’t eat tomato sauce, but squash and sweet potato are great substitutes. I’ve tried to make kale chips about 3 times. That needs more work… I’ve also finally learned how to soak and cook my own kidney beans and chick peas, so I don’t have to worry about finding someone who can shop for the Eden canned beans for me anymore.
Making those simple things was impossible for several years, so I’m thrilled to have made this much progress in such a relatively short time, thanks to living in safe(r) medically required housing…
It gives me hope that I can recover even more!