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!
Hi Linda…glad to hear from you again…checked your website a few times re: what’s new…I contacted C.E.R.A. for help re: chemical spraying in hallway where I’m now living…have been really sick – not to mention harrassment from neighbors..plan to see my MP/MPP soon re: Housing Options for people like us…I can really relate re: brain trauma…I was horrified/embarrassed to tell anyone at the time what I was going through…thought I was losing my mind….don’t worry…it’ll come back… I joined a Spiritual Church to help me cope & am meeting supportive people…I never heard from Michelle (said she had a Disability Advocate Lawyer who could help), nor have I heard back from Jennine (she had her hands full & I wasn’t sure whether I should go her route re: suing Housing Connections & City of Toronto… I’m going to try & do my best here in Toronto thanks to your inspiration & all of us out there who are suffering…we all need a place to heal!!!!! Lots of Love & Gratitude, Marilyn, Lil’ John & Yoda (my adorable fur babies who have been my teachers/healers throughout my ordeal)…..I’m living in a below-market-rent apt. (harrassment/noisy neighbors/I’ve had to call Police re: next-door neighbor/new tenant below me – Police were called re: his banging on walls till 3 a.m./I’m trying to survive & cope with all – making me more determined than ever)….thanks again Kiddo…..one day at a time…. my purpose becomes clearer & clearer every day!!! ha ha ha ha ha…I make it a point to watch uplifting shows on TV (Ellen, etc.)….
My name is Annette Tweedel. I live in Louisiana. Where is your living quarters at now? We are in need of relocating to a healthier location because of the chemical spraying around here. When I read that you had a hard time thinking, I thought, Wow! that is what I go through also. And that has been happening lately. So can you tell me where you found healthy living at. Thank you.
My heart feels so happy that you are finally in the “healing” phase!! Perhaps this is one that never ends, for any of us (who IS really healthy anyway LOL). Soon you will experience spring there, I hope it helps you with this process. Take care, Linda!! love, Amy
So good to hear of this healing phase! Just goes to show how critical a safe home is!
I’m happy that you feel more “yourself” again! That’s a huge thing!
I’ve been walkin that path in reverse lately, I hope it doesn’t last much.
That’s so wonderful. I’m so glad you’re getting better. It’s so sad when people judge us for what they don’t understand, but you didn’t give up which is most important–and hardest with this illness. I’m in Brazil now, seeing John of God (been verrrry hard with the mold here!). If you’d like to send me your full birthdate and address (or city) I can put a prayer for you in the basket for him and you will get further healing :) All the best, Lisa
A safe non-toxic home for us is just like the cast when we break a bone, the broken bone needs the cast to protect it from re-injury so that it can heal.
When our bodies can rest from the constant chemical, mold, and or EMF/RF exposures and assaults, our health improves! Being able to practice diligent avoidance of the things that harm us and simultaneously doing what we can to nourish the healing ability of our body is so important.
My hope is that everyone who needs a safe place to heal will be able to access one.
I agree with cleanairlinda. I’m in the U.S. and we are left to survive on our own. This is taking me a long time to write-I thank you for also making the effort to write. I’m told I’m moderately severe but masking from a sick house. I see people selling places on reshelter because they are healed -they seem lucky with family support and money though. I spoke with an Ottawa couple once that ran the old EISC and they talked about how much money it costs to take AAEM courses.What is AAEM doing with that money? But really I am so alone and mirror your illness so much(with terrible fear for the future and also look at walking into the lake for good) that your hope and healing brightens my day. Thank you.
Hi Annette and Liz,
So sorry you are having trouble with housing. I don’t know where in the US might be better for you, perhaps check out the US MCS groups and ask there?
Look at what MCS America and EI Wellspring have on their websites about how to make housing safer, in addition to staying current with what’s on ReShelter.
Since there is no systemic support for us, we need more community groups to take an interest in helping us, and hope that they are able to raise enough money to create new healing sanctuaries for those of us with chemical injuries in need of safe non-toxic environments.
This place was built thanks to a church group who had a member with MCS. If they could do it, others should be able to as well.
Maybe even the local Occupy groups might be aware of resources?
In the meantime, keep doing whatever you can do to keep yourself as healthy as possible. We never know when something good might happen!
Marilyn and Lisa, hang in there!
Amy and Suzanne, thanks for your support!
Practical, I hope things improve soon.
Sorry I didn’t respond earlier, I ended up with an exposure and well, I think you all know how it goes when that happens…
Thanks for your comments. I’m really poor($50/month) and struggling with coping. Wood smoke got into my house from a neighbor and I feel like I’ve been beaten by a baseball bat and the muscle pain(!)-really hard to type. Neighbors have been horrible(not caring/or angry at me for my mcs)-actually mcs people have been horrible too(either encouraging me to commit suicide or their own survival makes them selfish people). You know domestic violence shelters were started by social workers-where are the social workers to care about us? How do we get “healthy” people involved/to care?
Are there any healthy people reading here?
Does having to change laundry and personal care products make it too hard to care?
liz, I’m trying to get more info on how this place got built, what the people did to make it happen, and will write about it when I do. Hopefully there are more people in the world who will be inspired by that and create safer communities everywhere.