While I am solidly on Team:
"Accept your situation, Educate yourself and others, Advocate for proper treatment, and Continuously work toward health"
I do have moments where Team:
"Why the fuck is everything so hard?!!?!?!?!!?!?"
occasionally pops up and takes over for a while.
Today was one of those days.
Our family's recovery has been so much work in general over the past year, and specifically within this past month we've also worked through myself and my children finally catching Covid on top of everything else. Our PANS babe had a giant flare from it, and Covid was just really unpleasant to deal with for all of us.
I have so much to be thankful for in terms of dealing with all of the mold and co. so far on our journey, and I do work conscientiously daily about being very mindful and grateful for all of the good in our lives. But I am human, and as such, sometimes I get slapped in the face by life's unpleasantries and I just get overwhelmed and depressed or bitter.
I get angry and sad and jealous of people that don't have to deal with all of this bizarre shit all of the time. Sometimes I find that the balance I strive so hard to maintain in life gets unmanageable because I feel smothered with my own health obligations and/or the weight of being the adult that needs to take care of everyone else's medical needs.
Some of how I feel when I get really down is absolutely classic "annoying parent duty" stuff, or "millennial desperately trying to function as a successful adult in a socio-economically crumbling society" stuff, or even just "regular everyday person life" stuff that we all will have to deal with as we move through seasons of life.
But the rest of it is just so tangled up with the copious burdens that come along with having chronic illnesses that are terrifically misunderstood, and misdiagnosed and mistreated in a society that doesn't really give a shit about our health or well-being as long as we are "well enough" to function as a cog in a machine to serve a corporation or a business.
Because my children and I are facing mold illness, mold toxicity, and other co-infections and co-conditions we are largely ignored by the United States health care system and are not supported by our insurance company. Dealing with everything in this journey has left us financially screwed- absolutely broken in ways we just never imagined. This is the reality for most people living with mold illness, and co-conditions like PANS, or high viral loads, or lyme. Seeking knowledgeable help, getting answers, working on cycles of treatments, testing/retesting, remediating your house, renting a new house, buying a new house, throwing away your possessions and buying new ones, constantly buying organic healthier food, running higher utility bills for your always 'on' air purifier machines- everything costs so much. It adds up.
If you are treating yourself, it can be bankrupting. If you are treating a family- forget about it. We live paycheck to paycheck in our house. We consistently ration medication and supplements. We rotate through treating people in our family based on priority of symptoms/need. We have had the help of friends and family in the past on a GoFundMe to the tune of ~$12,000. It barely made a dent. Our closest family members still help us constantly and we hate that we need the help, but we absolutely do- or we wouldn't ask. I wish we lived in a country that cared more for it's citizen's well-being. I wish that we weren't under the rule and thumb of pharma and that medication cost wasn't prohibitively expensive. I wish that I didn't have to argue every single bill I send in to my insurance about what mold illness is, and why it doesn't mean just an allergy, and why all of the tests and treatments my children and I need are actually medically necessary and should be covered. I wish alternative treatments and therapies that have been proven to help mold illness and biotoxin illness patients would be covered by insurance- instead of denied because pharma doesn't make any money off of them so therefore they must be branded as "quack treatments" and blacklisted by the United States Healthcare System.
Because our conditions are thought of by most medical professionals as bogus or exaggerated we have to spend so much more mental, emotional, and physical effort to be seen and taken seriously, to demand what we deserve as humans- healthcare.
Mold illness is real and horrid. Every single person I have talked to personally about their experience uses the word "nightmare" to describe it. (And I did too, exclusively, for the first year of my illness, because nothing else fit the all encompassing horror that every single day felt like- a groundhog's day nightmare happening again and again- while I did everything in my power to wake up and get the hell out of it.) It really is like this twisted bad dream that you can not wake up from.
Mold illness means that the challenges we face are staggering in their bodily systemic effects, and the nature of those effects is constantly waxing and waning. Establishing clear communication and understanding with others seems damn near impossible- unless the other person is going through similar issues themselves or is has spent their life studying the conditions and symptoms we have.
Because we are dealing with things that most people don't know or understand, we have to do all of the heavy lifting with our children. How can we just leave our kids with PANS and mold illness with people that don't know or understand what their triggers are, who don't know or respect why we have to do specific diets, routines, medications, or supplements? How do you explain all of the nuances that come along with having a child that may seem "perfectly normal" one day but can switch on a dime to presenting as medically complex? How do you explain the ins and outs of navigating a constantly shifting set of medical issues when you are just beginning to fully "get it" yourself as their parent? Can you even find someone that you trust to care for your child's extensive needs? Will they be up for the challenge of loving your child and caring for them in the best way that they can so you can finally have a break to live as person apart from being a parent? Are you and your partner ever going to get those breaks that you desperately need to be together to enjoy one another's company without being a full-time parent, doctor, teacher, therapist, entertainer, advocate, record keeper for your child's needs? Do you and your partner remember who you are without all of this incredibly complex medical shit thrown on top of you?
And all of this struck our family exactly when COVID began?!
This seems absolutely fucking impossible.
Isolation, frustration, loss, envy, anger, monotony, desperation, jealousy, rage, depression, anxiety, over-thinking, disconnect, sadness, exhaustion, stress, panic, discomfort,
they all show up occasionally.
Tonight I had plans to meet a dear friend for hot yoga (the best for my detoxing and mental health!) and enjoy some time as Britany the human- separate from her illness, separate from being a mom. I left out a pre-bedtime activity for my husband to make his evening easier (healthy cut out cookies I made with the kids yesterday, with new healthy icing for designing tonight). I cleaned the kids' bedroom and laid out pajamas. I gathered all of my yoga gear and left 15 minutes early for a 4 minute drive from my house...
...and found my van had been plowed into it's parking space surrounded by 2 feet high snow/ice banks, (which I had completely shoveled out earlier today because it had been 3 days since the snow storm here and our city still hadn't plowed side streets.)
I didn't loose my cool, I grabbed my shovel from my car and threw my all into clearing snow from all around the van and up to 10 feet in front of it so I could get out easily. I jumped into the van and took off. At the studio I parked, grabbed my mat, and ran...
4 minutes late for class and the door locked.
I saw my friend inside, breathing and stretching and looking peaceful. My heart dropped into my feet, and I turned around and shuffled to the van. Inside, a seething rage took over.
I wanted that peace.
I felt such a loss of freedom; this was the the first time in weeks I really had to myself, because we'd all been sick from COVID on top of mold and co. and also the kids' school had been closed for snow days also.
I felt anger at myself- that I had spent so much time before I left for yoga creating an activity and easy night time transitions for my kids and husband (out of genuine love) and that those giving those gestures to others had ultimately meant I had yet again given up something for myself.
I let out two huge primal screams in my van and sat there in anger.
I didn't move for a long time. I just let myself be really really pissed off and disappointed. I tried to text my husband and communicate my deep anger as a heads up for him because I knew I wouldn't be able to talk about it when I got home without finding a way to fight about something- anything- to get my anger out.
I sat in the van and breathed. I stayed angry and didn't try to convince myself out if it.
I talked myself through why I was mad, and that it was okay to be mad about those things right now.
I sat and felt and listened to myself.
And I breathed,
I drove home a little bit later, and I started to laugh at the absurdity of how my day had worked out. And I began to feel better.
I have learned throughout this mold journey, to feel the things I need to feel deeply,
and then breathe.
For most of my life I wasn't allowed to feel my feelings fully, or my feelings were ignored and invalidated by the adult that was previously in my life. I grew up full of feeling (as I am an empath), but I grew up disconnected from my own feelings over time. I often would stop any negative feeling before it got too much or too heavy. My survival as a child and teenager eventually depended on me shutting off emotion and using logic and work ethic instead. My relationship with hardships and emotion had a huge disconnect. I thought I was adapting or coping and overcoming adversity, but really I was suppressing a ton of heavy shit and masking until I felt okay enough to move past the hurtle.
When emotions could be brought back into the game, I would forget the negative feelings and cope while focusing only on cultivating a restrictively positive mindset. While that may have been a good trait to have, (it helped me build some resiliency)- it didn't ever help me understand my feelings better. It didn't help me learn that it was possible to feel negatively sometimes and have things still turn out okay in the end without me handling and fixing everything to control the outcome so I could feel ok.
Some things that are important for me to remember through these difficult times in my mold journey are:
I am human.
I am dealing with more than I expected to at this point in my life, and this journey is of many difficulties.
I will experience moments of great joy and of great sadness.
I will feel hope and desperation.
Life is impossible to go through without negative feelings and experiences.
They are natural.
They help us see and appreciate the beauty in the world.
I will make it past this point in my life, and I will look back in amazement.
So when WE have these days that are just too much, (especially in the mold and chronic illness world (where we face more adversity than the average person), we need to be so mindful that:
It is okay and valid to feel how we feel in the moment.
We don't need to change it, or force our way out of it.
We don't need to mask how we are doing, or lie.
We need to accept where we are and allow our feelings to happen organically.
We don't need to wallow in them, but we need to accept that they are there and let them happen.
They will eventually pass.
So while today may have had it's share of negative situations and feelings, I deeply felt them, and they all eventually passed. After I felt all of the things that were so dark, and angry, and frustrating, and limiting.... I feel okay.
I'm drinking tea, reflecting and processing.
I'm taking time with myself- not in the way I imagined I would tonight, but in another way that is just as meaningful.
I focused on all of the things that went wrong today or seemed impossible. They all happened. I felt them negatively, very deeply. I came back home and let the feelings take over. And then I sat with them. I didn't push them away, I felt them and accepted them for what they were. I listened to myself and validated myself.
Now, I'm turning the corner naturally to becoming grateful.
I am thinking of the small beautiful moments of my day- how my 4 year old left me a "healthy" cookie on the table shaped in a heart, crammed with "healthy sprinkles" to show her deep affection for me. I am grateful for how far I have come on my mold recovery journey that I can even eat some exciting sweet treat like this occasionally, without reactions, without alarm. Getting foods back had been legitimate dream of mine for so long.
I am remembering my morning- how my older child was able to frolic with me and her sister in the snow for over an hour at a time, when last winter her lips and hands would have been blue after 20 minutes and she would've been shrieking in discomfort and we would have had to retreat into the house to help her blood circulate better.
I am refocusing- how even though I missed a huge opportunity for self-care tonight and a chance to catch up with a dear friend, that maybe it was better for me to take it easy tonight and find other ways to care for myself at home.
One of my biggest wishes for you, as a mold warrior working through your recovery journey is that you learn to sit with your feelings and truly feel them; then breathe and see where you are taken next. Your feelings are valid. It is okay to feel really negative sometimes, we are going through so much that so many can't possibly understand.
Feel it. Validate it. Breathe. and See where you go from there.
art credit to:
"Feelings Wheel - Bright Poster"