Down is Harder After Up

Alternate title: Be Grateful or Be Miserable!

I had some really good brain and body days in the early spring, enough that they left an imprint on me of how it felt to feel (relatively, and almost) normal. instead of the usual:

feels like quicksand-3

Then shit happened… (sorry, I don’t usually use language like that, but I’ve lost access to some parts of my vocabulary lately as a result of the toxic stuff I was exposed to).

Pesticides, dental infections and extractions, toxic products and materials (including trying to replace a SS kitchen kettle -simple, yes? Actually, NO), summer road work, more and more pesticides, heat,  VOCs, lack of ventilation and air filtration, which meant no ability to cook, and more…all of which resulted in some serious brain fog, cognitive problems,  and drastically reduced physical abilities.

Back to the drawing board…

After having some good days this year, I crashed again, and I haven’t been able to recover… much… There can be a few better mini-moments here and there if the outdoor air quality is exceptional and the breezes have been blowing the “right” way, but nothing like how well I was doing for a while in the spring.

Which makes it so much harder now, because I can actually remember what it was like to be more functional. It was so long ago before, that it didn’t really come into play or into my thoughts, as for so many years, I couldn’t remember what it was like to think clearly, or to function without effort, with relative ease.

Is it really too much to ask to be able to function with relative ease? To not have every thought, every action be like climbing a mountain or navigating an obstacle course?

The recent experiences with a relative ease of being, and the remembering what living  was like before what severe MCS/ES and toxic brain injury did to my brain and body, has been really, really, really hard on me, and the crash seemed so much worse (and more cruel) than previous crashes, even though I am still doing much better (relatively)  than I was doing for so many years. It’s so confusing to deal with not knowing if or when my brain will work more like the way it was intended to work, the ways it used to work before toxic injury disabled me.

It can be very confusing (when cognitively impaired with brain fog and inflammation) and can be very miserable-making, when wanting things (like my mind) to be clear, not drugged, and wanting my body to function without feeling like I was in quicksand all the time, but having no control over when or how functional I will feel, ever.

I WANT to be able to think clearly, and I WANT to have a clean bed and clean clothes without holes… I WANT to be able to eat after 10 pm without having had to prepare it earlier in the day so that the sound of my blender doesn’t disturb all my neighbors, or to be functional enough to have the foresight, and strength to be able to prepare things in advance of needing them… I WANT to be able to clean when needed… I WANT so many other NORMAL little things… too many little things to mention…

Every time I see something here that I can’t change, and remember how it would be if everything wasn’t so toxic these days, if I didn’t have disabling MCS/ES, how I would rather have it be again, I become more miserable. There are SO MANY little and big things to be miserable about in my life, and so few to be grateful about, if I compare my life to almost anyone else’s life in the so-called “civilized” world.

I watched closely when the massive earthquakes hit Nepal, and how remote and simple so many villages are there, and how they lost everything, and I still found myself comparing my life to theirs and wishing I was there because that would be easier! I’ve wanted to write about that, but so far, haven’t been able to do it any justice.

I don’t remember feeling so miserable about my life with MCS/ES the years I could barely function, before my brain fog started lifting, or even as I was first deteriorating. And after months of exposure induced misery, I finally remembered to think about what was different now, what had changed or been reset in my brain? Memory issues are common with MCS/ES. Forgetting why we did things after something changes is common, and can be recurring with exposures.

I was fortunate to run across a reminder of what I did so many years ago that was so helpful, and so it seems that I am having to start doing it all over again, and  what it comes down to is that I have to change my thoughts when I can’t change anything else.

Note that this doesn’t magically make my circumstances excusable from a societal perspective, it just makes my life more bearable, easier for me to not scream for “death with dignity” because I don’t have access to much of what is needed to live with dignity.

In that regard,  am currently making the effort to stop judging, labeling, and comparing my situation and stuff to anything or anyone else.

It’s very challenging, especially since my online community also includes people who are out and about in the world without having a care about what they eat, what they wear, what they use to wash themselves and their clothes with, what their friends use, where they live, etc.

Most of the time, seeing them brings me great  joy, but there are times I just cannot relate, their experiences are so different from my reality and it can seem so improbable that I’ll ever experience things like that again, and so now, and again, I look for little blessings wherever they may be.

I know there’s a ton of advice, writing, and whatnot on gratitude out there, and some of it’s very good. I am not writing an inspiring how-to-do-gratitude post, or a you-should-do-gratidude post. I am just writing what I have been doing, kind of in response to something someone shared somewhere else, someone who is also hanging on by bare threads, and living in some very similar circumstances as I did at the cabin, and in some ways still am now.

My gratitude work is a work in progress, and an example of a different reality.

MCS/ES, welcome to a reality you never dreamed of!

Remember that it takes monumental amounts of effort and energy for me to do even simple things, and that some part of my body or another is usually in pain or not functioning very well. And that there isn’t much else to my life than what I describe below. And that solving some of the lack of access issues would take a village.

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Things I can be and am really grateful about now:

I have an indoor washroom here with a toilet seat that doesn’t freeze, and I don’t have to dig my way through snow to the outhouse like I did at the cabin during the winter of 2010-2011, when I could barely walk.

I have hot running, and filtered water here, right out of the taps.
I don’t have to drive 50 km twice a week and haul 5 gallon glass and plastic jugs of water.
I don’t have to boil water to wash dishes.
I don’t have to haul the dish water outside because the drain pipe under the cabin froze, the water magically disappears down the drain when I’m done with it.
I can wash my hands and have a shower whenever I want or need to, with warm or hot water!
I don’t have to wait a week to have a shower (a 25 km drive away, when a woman emptied her bathroom for me once a week, every week, so I could shower and hand wash the clothes I didn’t have to have on my back, the clothes I had to wear almost all at the same time to keep warm enough that winter).

I have heat here, and the place remains warm enough that I am not constantly shivering (except when it dips well below freezing outside for more than a few days, because, well, I still have clothing issues, related to laundry issues, but I really am grateful that I still have any clothes I can wear now, no matter what kind of shape they are in)

I have weekly organic food delivery so I can eat more than freshly grown sprouts when I need fresh food in the winter…(I am not going to think so much about what I can’t get, or can’t eat because I don’t have enough teeth left, and I WILL think more about what I can do with what I can get)

I have one molar to molar connection left in my mouth (where my last upper molar meets a lower molar) so I can still chew, at least until I am ready to have the now  infected lower molar removed, or until it becomes painful enough to make me ready to have it removed (that would make it 8 or 9  teeth extracted at home this year), and I am SO grateful for my 35 year old blender that doesn’t fume me to death when I use it, that it still works to puree everything I eat. YAY! For that, I really am super, duper, grateful, because without it,  I would starve!

I am so grateful for a few local people in the online Buy Nothing and Community Giving groups who have responded when I reached out and asked if anyone could pick something up for me when I’ve needed things from a local store. And I met a few other people when I offered up extra kefir grains when mine grew to more than I needed.

I am grateful for that tiny bit of contact with people from the “world out there”, when being confined to my home here for 99.999 % of the time since I arrived here 51 months ago means I’ve had no other way to go out and meet anyone from here.

And I am grateful for the squirrels… lots and lots of squirrels… (I am almost ready to say too many squirrels now, as some were being naughty today) and a chipmunk, or 3… All I have to do is go out with some sun seeds and peanuts (which are ordered and paid for over the phone and brought to me by community members), and I can be surrounded by little living beings who don’t poison me with toxic personal care or laundry products, who look up to me with such hope in their little eyes and hearts, excited to get something tasty to fill their little bellies with or hide away somewhere nearby.

fur-friendsSome of my 2015 fur-friends

Ok, I admit it, I may not be “Squirrel Girl”, a powerful mutant in the Marvel Universe, who defeated some of the most powerful villains, like Doctor Doombe… I may be more like the  “feeding-lots-of-squirrels-lady” here, but in my circumstances, how else can I feel useful and needed in the “real” world (and not just the online world)?

What having a life only online (in the computer) sometimes feels like:

aonestudy-com-articles-computerlife

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Yet, so far, there is no fix, the “real” world is still too toxic for me.

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What would my life be without my online community? I can’t imagine. My online community members are lifesavers. I am so grateful to them, and to you!

I am also very grateful for this computer that I am using, that it is still chugging along, slower, and more fitfully than before, but it still allows me to order food and have all the other connections I have now.

I can honestly tell you that by focusing more on what I can find to be grateful about, and then letting it go of my labels, comparisons, and judgements about the things I have no control over, has seriously helped, despite the absurdity of my circumstances, and the cold, harsh, heartbreaking  realities so many of my online friends with MCS/ES are forced to endure now, because practical, non-toxic solutions are not affordable for us.

I continue to hope, wish, and pray that soon enough people will understand that the things we people with MCS/ES have been complaining about for decades are actually things that are harming everyone, as so much scientific  evidence now shows, and that the desire to have future generations survive, with reasonable good health, will convince people to choose non-toxic personal care, cleaning, and laundry products, and that we can create enough demand for laws and regulations to make all everyday products and materials non-toxic and harmful VOC free.

 

NOTE: Before anyone goes off telling anyone else to get positive and / or practice mindfulness, because obviously our attitudes need an adjustment, because we wouldn’t be complaining otherwise, here are a couple of things you could (please) read:

Barbara Erenright’s Bright-Sided: How Positive Thinking Is Undermining America

and

How corporates co-opted the art of mindfulness to make us bear the unbearable

and

Another prayer:

“May my suffering take the place of the suffering that would be otherwise experienced by other beings.”

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15 responses to “Down is Harder After Up

  1. Guilty as charged. Way over the top with positive thinking – my own 91 year old mother calls me Pollyanna. Underneath the facade of over-the-top cheeriness is a woman with disabilities and MCS struggling to change the world through 3 levels of government while being sprayed, attacked and presented with new barriers quite regularly.

    • There ARE different kinds of positive thinking!

      The new age versions deny reality and promote distraction, while ignoring many behaviors that contribute to adverse outcomes. (I am not sure I said that well)
      The beneficial kind of positive thinking accepts reality and works with avoiding negative emotions and ideas, and instead cultivate beneficial thoughts, ideas, and activities, to the best of whatever anyone’s capabilities are.
      (said in clumsy brain-fogged language – I know what I mean, I just can’t say it well now).

      The “negative” kind of “positive” thinking ” also blames the victim” for their circumstances, which very often, corporate and government policies have created.

      Dr Trevor Hancock had a great article in CMAJ, the Canadian Medical Association Journal, last week, called “Let’s lift the siege on public health”:

      ” … in many other areas of private enterprise and public policy, we have in fact made the unhealthy choice the easy choice.

      Then we wonder why people make unhealthy choices, and blame them for doing so. Thus we shift the blame from those who create unhealthy conditions and market unhealthy products to those who live and work in such conditions and are persuaded to purchase such products.

      … Moreover, the notion that adults make free choices in a world saturated by sophisticated marketing strategies on which corporations spend billions of dollars, and in the absence of clear and transparent information of the real contents of all their products and their real health impacts, is simply laughable.”

      Positive thinking doesn’t remove those barriers. Positive thinking can help us find ways to work what’s left of our butts off to change those policies and the circumstances they create.

      And that’s the kind of positive thinking you work with, Elaine. Thank you!

  2. Positive thinking doesn’t make the crap go away. Well done for being realistic, but still grateful. It’s a hard balance (and one that I haven’t achieved yet).
    I hope things get better for you.

    • Thanks Claire.

      We are all works in progress…

      For basic sanity, we HAVE to find something in our lives that we can feel good about, and then cultivate appreciation of more, and it’s really hard to do when everything is a struggle…

      It also takes a bit of effort to watch our minds and notice how we’re feeling about things when we are thinking or just going about our day…
      I have to keep relearning how to do this apparently! The toxic brain fogs can totally wipe out what I’ve learned about how to function, and I can’t depend on any part of my brain being functional when needed… but I have noticed that if I cultivate a different motivation and try to stay present, then I can function better on auto-pilot, I don’t have to make as much conscious effort to think about what I am doing or need to do…

      I saw a little documentary last night (something someone shared from the Globe and Mail, from earlier this year) about a man who developed a mobility problem with his body not moving the way it should, and he discovered he had a lot more control over it when he danced!

      I’m still trying to find and understand ways I can function better when the regular ways don’t work from exposure effects.
      It’s no longer learn once, remember forever… the exposures can act like new brain injuries, wiping out memory boards…

      I did remember today to look at, pay attention to, and enjoy some of the art I have here. I remembered when I moved here, after my things had been packed away and in storage, some for many years, most for just a year. I was delighted to unpack and display some of the things, they were joy inducing. Now they have become a part of my wallpaper, so I have to remind myself to appreciate them again…

      When I notice the little things, the world seems to open up more. Not sure how that works…

      Hope you find more to be joyful and grateful about too ❤

  3. OHHHHHHHH Linda, I wish we could hang out and feed the squirrels and chat and laugh together. I have those days like the day I posted the pictures, when I can’t stand this life with this MCS infested brain and body…and then I have days when I don’t really think about it, I just fight to survive and do what has to be done.
    When I am hopeful about something and it ends up not working I find it triggers me to rage, suicidal thoughts, depression, anxiety and mostly fear that the day will come when I wake up and am hit from simply being alive and that will be the ultimate hit.
    I can actually have some joyful moments…when I make a sale online and know I will be able to eat another day, when I create something beautiful in my eyes, when I sit and watch a movie with my son at night after the days challenges if I am not in a hit, when I take a bath and look out of my only window at the beautiful forest, when my daughter visits from Vancouver and sits outside for hours and we can see each other, when I talk to my online friends and feel their understanding and support….oh yes…so grateful I can use my vintage laptop that squeaks by and never dies and allows me to have relationships. Most grateful for my son who has devoted his life to my care…not many have that.
    I know what it feels like to have an up, and then the down is devastating. I can so relate to your “down is harder after up” I also know those moments of acceptance when I look around and just realize this is now my life, a new life.
    Then the world quivers and my old life smashes into my consciousness, and I am lost again.
    It will probably continue like this…and I will fight and have the good, the bad and the ugly. That is life! Life with MCS is a new frontier and we are very special people. I feel we are the expression of what is happening to this planet…we are one with the cosmos after all.
    You are one of the strongest among us…the universal reactors. You inspire me Linda. I love youXOXOXOXOX

    • I love you too Susy!
      And you inspired me to write about this (it’s stuff I’ve been thinking about, or trying to, anyway) and to put it “out here” instead of just posting to the group…

      It would be so awesome to hang out together somewhere the air was clean!
      We could comfortably be in our thead-bare, holey clothing, laughing our heads off at the absurdities of life, wondering when enough people will “get it”, that we (society) can’t use poison without poisoning ourselves… We could play music together (if my bass still works)… We could serenade the wildlife… (the non-toxic kind)… and dream up new, healthy ways of being on the planet…

      Now, there are days when the air is so bad that it totally disables our brain’s ability to direct our consciousness to “healthier” ways of thinking, the necessary functions just aren’t accessible… I’ve been searching for the “key” or “trick” or “hack” or technique that will help, other than waiting the exposures out while the brain and body heal… If I find a way, I’ll share it ❤

      MCS/ES can be so unpredictable, it's not as if we can see the exposures coming, unlike two by fours, which are so obvious (if we are able to see), or know how long it will take to recover from an exposure, or know when something that was previously safe has been changed and no longer is…

      It's like the aftershocks after an earthquake, but they never stop…

      Wouldn't it be lovely if someone created a small passenger airline that was totally MCS/ES safe, and could take us all to a new and totally MCS/ES safe spa and resort for a few weeks?

      It's doable… What is needed is a financial donor, land, and a group of people who can work together to make it happen… I hope, wish, and pray that we will see this happen in our lifetimes ❤

  4. It is a dream of mine to have a village with safe houses and even though many of us have varying problems, we could have a set up so we could see and talk to each other and visit and be surrounded with gorgeous nature.(even if glass tunnel walkways were involved) It would be so safe that we would all begin to improve and feel alive again. Even if we had to stay there always, it would be so beautiful we would be happy to be there, and each safe house would give the person their own way of living freely within their home. There would be a place where fabulous foods could be prepared for those who cannot cook (like me) and we would find a system to deal with fabrics and how to clean them and help the fabric sensitive (you and me) I day and night dream about this a lot…inert homes with clean air and no smoke anywhere, nor fragrances of any kind…a perfect clean non toxic environment.
    I am in an early morning after not sleeping at all last night…was hit but better for now and thinking clearly. Getting sleepy at last.
    We share a dream…that is a beginning!
    XOXOOX

  5. In 2011 I was the best that I had been in about 13 years. Sadly, with uncontrollable exposures to all sorts of things I have not been as good since. That wellness feeling is so elusive when you have MCS. With a series of bad exposures my sensitivity dramatically increases, making me retreat to the relative safety of home for about 6 weeks, rarely venturing out until my sensitivity drops to more manageable levels. It was during one of these retreats that I first came across your great website. During my most recent 6 week retreat I came across the newly set-up Australian National Register of Environmental Sensitivities (ANRES). I was so pleased to see a project such as this has been established here in Australia and I have become involved. The ANRES website is http://www.anres.org. It would be greatly appreciated if it was possible to have a link on your website to ANRES. It is early days. So far 80 people have registered but many more are needed. Thanks for all your wonderful work. I have recommended your website to many people.

  6. Thanks for your help Linda, it is greatly appreciated!

  7. Pingback: When You Lose Someone to MCS

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