ME/CFS. Multiple Chemical Sensitivity. Allergies. Fibromyalgia. Arthritis. POTS. Anxiety. Calcified Tendons. Depression. Endometriosis. And more.
I'm moving forward with my life!
Earlier this week I wrote a post about how uncertain my future is. The very next day my husband lost his job because the university he teaches at will be closing. We thought maybe a department or two would close. No, the entire university is closing. They announced this with a sliver of hope, saying if they raise $6 million by Tuesday they can save it. They said may be able to continue as an online-only school. They said this, but they also sent an email terminating all employees and another to help students transfer to other universities.
This is not surprising because the school was in bad condition, and we had too many signs that it was failing. We were starting to believe that he might get to work there one more year, however, because this announcement is coming at the end of the school year, after all the student transfer deadlines. The jobs at other universities have already been filled for next year. It's too late for anyone to plan. The university claimed they made the announcement this late because they were hopeful that a significant donation was coming to them, but the donation fell through and they will not receive it. That's fine, but they should have been transparent. They should have been giving the state of the university throughout the whole year. They were dead silent. In fact, they even hired a professor a few months ago, who moved here and bought a house that she won't get to live in now. It's unconscionable, disrespectful, and morally corrupt of them to treat all their faculty, staff, and students this way.
This means that my husband is scrambling to find a job. He has been applying for new jobs all year long, and even had interviews that were very promising. The trouble is that universities across the nation are closing in very high numbers, so the amount of professors and graduates applying for the same jobs is staggering. He's competing against 200+ applicants for any low-paying job that pops up. Higher education is falling apart rapidly. Between the demographic cliff (too few 18 year olds because our birth rate has plummeted), the extreme high cost of education, and very low salaries... higher education isn't an attractive option anymore. It's actually a very risky option, because there is no guarantee that a degree will help anyone earn enough money to pay off the cost of the degree and keep a roof over their head at the same time.
So this leaves me in quite the dilemma: Should I stay or should I go?
My husband has a couple of job opportunities he could take, but they don't pay well enough to support us both. They both require moving to cities nearby where rent is quite a bit more expensive. My disability and part-time job income will not help enough. He has his doctorate, he qualifies for jobs that require it, but they don't pay enough to cover basic living expenses. If I join him wherever he goes, I think we'll have to rent a very small and cheap apartment that won't allow my pet birds or even have room to keep half of what we own. There are many problems with a cheap apartment for my health: I can't use shared laundry machines, the smell of other people's fragrances will drift into the apartment and make me sick, I would have to live in noise-canceling headphones, they tend to be moldy and don't get proper repairs, and so on... am I entitled? I don't know, but I do know that my health can't handle it.
I also have the option of separating from him by moving back in with my parents in their home that is safe for me. Financially, we'd both be better off. If I do this, will I ever see him again? I'll be moving 1,600 miles away. What are the odds of him landing a job that can pay the bills any time soon? You might be thinking about how he should change careers and figure this out. It's not that simple: couples can't survive anymore unless they're both making a decent salary and living frugally, and my income is less than half of his. He doesn't - didn't - make a low salary, and most career changes would not help him earn more money. He might have an easier time finding a job in a different career making the same amount of money, but he is paying for a doctorate in this career field.
My God... where is the humanity? What happened to our nation? This is a nightmare.
Happy Easter, everyone. Easter is the ultimate message of hope. Easter is the reminder of why we're living. Easter is the reason to keep fighting and moving forward in this screwed up society that doesn't value human lives. Easter is the meaning of life.
I think this song is relevant... yes, it's about dating, but isn't job hunting dating too? I view it like jobs are looking for the perfect workers and looking for perfect people to apply. They expect people who are not humans to fulfil their insane and inhumane demands. How bad do they want employees? And will any employer pay enough to live off of, but also hire someone less than perfect?
You can't convince me that the USA isn't heading towards a major depression if we can't solve this. Wages MUST go up and rent MUST come down. If not, we're all going to be homeless soon. How bad does this country want us to be successful?
As for me, myself, and I... well... I'm lucky to have family who loves me and can help me. I'm lucky to have as much health as I do have, considering I was completely bed ridden at one point in my life. I just want to surround myself with people who can still find the beauty in being alive so we can somehow survive this nightmare. If it's societal collapse, I just want to be with people who love me. If it's the apocalypse, then all I can say is that it's about time. Good riddance. We've trashed this planet, we've trashed society, we've trashed the ability to have a future... I will do my part to try to save this planet and be able to have a future, but if it all collapses, so be it. I'm exhausted. I want to live a life in which it's actually possible to be in love, raise children, and be part of a healthy and functional society. But as it is right now, there's no time or room left for building a loving relationship. Every moment of our lives is pure stress about how to financially survive.
I'm here for a quick update. I realized that the last post I made was about having Covid for the first time, then nothing since. The short answer is that I'm not any worse from Covid, but it took me over a month to get back to my level of normal. It's possible it did mess me up a little, but it's a little difficult to know at this time because stress is my main issue at this point. Since then I have been having stronger allergy symptoms and I got RSV. RSV lasted about month too... I've been sick a lot more often since moving here...
My stress level is so high every day due to issues I can't talk about publicly. It's caused me to fortify myself inside my head. When I do start to talk about it I hear myself getting fearful, negative, and pessimistic quickly. I don't have the energy after work, chores, living in fear and stress, and my husband to come here to write about all the things I want to write about. I think I can't blog until I'm out of this situation and feeling safe and secure again.
I can explain a little, I'll explain the parts that are public knowledge:
Almost 2 years ago my husband accepted a job in SC, 1600 miles away from "home" (if North Dakota is home now), where our families live. He took the job thinking it was going to finally offer stability, security, and happiness. They offered him the job, knowing how far we had to move to accept it. The short story is that the university that hired him is in a severe financial crisis, and there have been many warnings that he may not have a job next year. They have already cut positions and the salary of all faculty at the university. There have been 4 university presidents in the past 2 years.
We're renting a house that's probably the best (possibility only) deal we will find in the area, and it has mold damage. You may know that part of my story is mold toxicity, and I'm really sensitive to mold. As long as I'm living in mold, it feels kind of pointless to spend money on medical care... and South Carolina is simply just a moldy state. I was worried about that before I moved here. What I didn't expect was that people would be so used to seeing mold in buildings that they don't care to do anything about it.
We've talked about me moving back to North Dakota alone and living with my parents. It's not exactly the easiest thing to do - moving 1600 miles alone when I'm dealing with chronic illness. In almost every plan we make to do it, I have to make some major sacrifices and the expense is a lot. So I've been stalling for as long as possible. The school year is almost over, and my husband doesn't know if he'll get a contract for next year.
There is more to the story I may talk about some time in the future, but not right now. Needless to say, I've been in survival mode. The easiest way for me to cope is by living moment by moment, taking care of my needs as they come. I enjoy the moments I can. I connect with the safe people in my life. I focus on doing things I love as often as I can afford to. I'm not going blank or numb to all this. I'm just regulating my nervous system by keeping as calm as possible.
It's tough. I'm ok right now, and I do mean that sincerely. Right now I have shelter, food, a job, internet, running water, electricity, clothes, and people who love me. It might be very different in one month from now. 2 months from now I could be living a completely different life. I have no idea. Worst case, I have the ability to fly back to North Dakota and live with my parents. Better case, I have the ability to move my things back to North Dakota too. Even better case, I can keep my pets too. Even better than that case, I win the lottery and become a millionaire and can stop stressing about simply living.
I have a list of things I feel are worth blogging about, but I sit down to write and I can't find the energy to pull them from my head and type them into words. I want to write about how I discovered a new food that I can eat and benefit from. I want to write about how to buy meat, especially when it's difficult to find quality meat where you live. I want to write about how the culture of your local community affects personal health, and the ripple effect that poor health has (this is a story about a stray dog.) I want to write about my new Fitbit and faucet, both of which make my life easier! I want to write about my thoughts on the movie Common Ground, the sequel to Kiss The Ground.
The reality is that I'm feeling stuck in perpetual exhaustion. Each day I'm striving to just keep up with the emotional turmoil in my head, the physical demands of my weak body, and the chores around the house. I feel like I'm constantly waiting, so I can't start a project or do anything because I just have to wait, but what am I waiting for? I have no idea. The problem is, when I'm doing things, I feel like I have to rush and do them as fast as possible. I'm sure my adrenals are shot again. I think it would help to have a job so I could have some sort of routine or rhythm in my life to help me pace. Searching for a job has been a nightmare here - my options are all physically demanding for very low pay. I've been applying for jobs, but I've never been invited for an interview. Maybe it's because I'm asking for more than $9/hr and only part-time hours? There is a serious lack of part-time jobs here - the work culture here is very "all or nothing." Work-life balance? That isn't a concept here. I also think I'm judged for being from the north. There's a strong dislike of all the northerners and Californians moving in, and my accent gives me away.
There is a war inside my head that is seriously taxing me. I have major life decision fatigue, and my inability to take action to fix my life is making me feel worthless. Half of me believes I need to snap out of this slump, pull myself together, and go work any job I can get just like other people do. The other half of me knows my health is too poor to actually do that, and it won't solve my problems because not being healthy enough to do the work will make me feel even worse about myself. This half of me keeps coming up with philosophical reasons why all people, even sick people, have value and shouldn't be expected to be worker bees when they're not able to be. This side of me keeps finding peace with my situation, but then my husband comes home from work and we talk about how tight our money is, and I start to spiral back into the guilt of not helping to earn money. I don't know how to enjoy being me if I feel like I'm not contributing, and he makes a lot of comments about how I'm not earing money. And I spiral back down the whirlpool of despair. How can I be at peace?
I am on disability, so I am contributing. But is it enough? I do the laundry. I clean the house. I wash all the dishes every day. I run the small errands in town. I cook most dinners. I work myself to exhaustion every day just by trying to keep up with chores. But is it enough? Am I enough? Am I loveable when this is the best I can do? If I'm only loved for what I can do, then I feel like I'll always be a disappointment. I want to be loved for who I am, how I love, and how much better I make life.
If I felt settled down, I would honestly consider starting a hobby farm with goats and chickens. I like people, but I don't meet the crazy high demands of people. I used to be able to before I got sick. It's not because I'm lazy - I used to thrive from doing physically demanding jobs for long hours. I enjoyed the work too. I miss feeling and actually being CAPABLE. Life would be so much better if I could just use my body and work! But, I have to deal with my reality: my body can't make enough energy, and I get dizzy and weak from using the energy I do make. And I'm not settled down at all. I do not expect to have a long-term situation here in South Carolina.
I feel like these blog posts are becoming very repetitive, but my head is very repetitive. I'm stuck. I need to get broken out of this cycle of despair.
I do have positive things to write about, I promise! I'll try. But not right now. I need to lay down.
I hope that these blogs serve as some sort of record of how awful life is for those of us with ME/CFS. Let this help someone somewhere feel less alone...
Despite what I'm about to say in this blog, I'm really grateful for the beauty that I'm surrounded by in my life. I bought this flower at a farmer's market a few weeks after moving here at this time last year, and look at it now. It's the most amazing flower I've ever grown in my life:
I'll be turning 37 in a few weeks. I still feel so young because I feel like too little has happened in my life, but I feel the weight of age on my shoulders. It's compounded by all the doomsday scenarios all over the news: climate change will cause us to fry or freeze until we're all extinct, women's health care will regress until I can't get any medical help at all, it's impossible to afford to raise children, we're running out of electricity, no one can buy homes anymore... You get the point. I feel like I missed my opportunity to live the "American Dream" before it became impossible. Now I wonder if we're all going to die soon anyway. (I doubt it and I won't plan on it, but I entertain the thoughts.)
Part of me is actually really thankful that the "American Dream" is dying, because it's a huge responsibility and not everyone is built to endure it, and it gives me relief to be able to let go of it. Those who are built to endure it are very lucky to have the opportunity to thrive in this country, and I'm incredibly grateful for them! They are the backbone of this country and I fully support their efforts. I thought I was one of those people, but now? It's only a burden of a dead dream for me now. Before I got sick I had a lot of ambition that was instilled onto me. I understood that every person had to have a career, and so I was creative about what I wanted my career to look like. I dreamed of opening my own business, being a published novel author, landing a job working for a company that was going to save the world from itself, and giving TED Talks about how ethics in business actually lead to better productivity. I was a highly idealistic and dreamy person. I was smart and I knew it, but I didn't understand my intelligence type. I fought my natural instincts in order to do the "successful person" things. Since getting sick, all that ambition is completely gone, and all that matters is the energy that arises from my natural instincts... which isn't exactly career-oriented. I'm a nurturer, and I was built to raise a family... something that's impossible to do without a two-career household these days.
I thought getting married was the first step to doing the right thing with my life in order to live my "American Dream," so I got married very young. I thought that was going to motivate me to make money and get my life rolling. It took me a long time to figure out that I was delusional, because I was trying to do what I was supposed to instead of live according to how I naturally am. I was very ready to be completely in love and committed to a person - that wasn't the problem. I'm built to love very hard, and commitment is a huge blessing to me, not a source of fear. The problem was that I wanted to be married because I wanted a family - which is very natural, right? It killed my career instincts. Immediately I found myself putting myself aside to support my husband in all of his dreams. I stopped investing in myself. I took any job I could find, which never paid that much. I had a college degree, yes, but that never helped me earn a decent wage. I had 2 different jobs that required my degree, and both of them paid less than $10/hr. It was very clear to me that I was built to be moral support to my husband, and it was my job to help him fulfil his career dreams. And then I got sick. Goodbye Sarah and all her dreams... getting sick became my life. And you know what? I'm tired of my life being ruled by my physical abilities.
Side story about being a slave to my body so you can understand how difficult it is for me to plan anything in my life:
We had tickets to go see a concert of a world famous jazz musician: Wynton Marsalis. We could choose between going on a Tuesday or Saturday since he was at the venue for a residency. My husband really wanted to go on the Tuesday, but I told him that was my period due date. My period is so extreme that I absolutely cannot do anything on the day of my period, but the PMS is also very intense. It's always better to schedule everything in my life for the week after my period. So I said Saturday was the better day to go. Well, Tuesday came and went and my period didn't come, although the pain was enough to make me believe it would come at any moment. But it didn't. I ended up being 6 days late, and why? It started overnight on Friday and caused me a ton of problems all Saturday morning. We had to leave by 3 pm to get to the concert on time. My husband had been calling around asking for anyone else to take my ticket and go with him, but it was too last minute and no one was able to. I made a last moment decision at 3 pm to go with him, because I was just getting past the worst and was entering the recovery phase. It meant 4 hours in the car, and somehow managing with difficult public bathrooms while there. But I was angry at my body and I was angry that money would go to waste. So I chose to go with him. I wore a dress so I could wear my overnight pad, because my menstrual cup can't contain it all, took some medication, and went with him. I delt with the poor public bathroom options. I was dizzy and wanted to lay down through the concert. But I really enjoyed the music, which lifted my spirits and helped me endure. If my period had started even an hour or two later I wouldn't have gone, so I got very lucky.
Now I'm in South Carolina for his career... I'm not going to write freely about my entire experience here, not at this point in time. But I can say it's been highly unsettled, triggering depression like I've never known before. It's been very difficult for me to just go get any job I can, because it doesn't work that way here. I can't drive far safely - most of the time I can drive 10 minutes before I zone out too much, and there isn't much within 10 minutes. Most jobs here are manufacturing jobs, followed by fast food. Manufacturing jobs are never going to work for me because they'll never hire me part-time, and the jobs are highly physical and require more energy than I have. So many of them are essentially slave-labor too... I have been told many stories from locals here. Many of them only offer rotating shifts of 12 hour days, but the work is highly repetitive and causes repetitive stress injury. No, I can't survive in that environment in my physical condition. To be clear, it's because of the small town I'm living in. If I were in one of the cities I wouldn't be having such a problem... maybe. There's a lot of competition for jobs. South Carolina is growing rapidly. I feel extremely useless... like there's no reason to be alive. I could get into the climate, pollen, mold, poor infrastructure, and poverty issues too... I could write a lot about how inhospitable it is for my health condition, but I imagine I don't need to explain much. Extreme heat, pollen, and widespread mold problems says everything. I feel like I lost a battle with the culture of this state before I even took a swing at it. The standards of living are very low, and the expectation is that every person is able-bodied and can work like slaves. At least in the small town I'm in. Imagine me calling in sick for my period... it doesn't matter that I have endometriosis. I would get fired quickly.
Aurora's new album, "What Happened to the Heart" has been a massive inspiration for me these past few weeks. I know I'm always sharing her music in this blog, but she always expresses what's in my heart and on my mind. It's very poetic and the themes align perfectly with all the weight on my own heart. She sings about what it means to be human in a disconnected world: tackling issues of AI, loss of independence and the desire to be free, inability to repair relationships due to selfishness, how to be remembered in a world that isn't paying attention, worshiping idols that don't love us back, and how necessary it is to love. I was already feeling all the themes very deeply, then she comes along with this album that expresses my heart perfectly. But I know we're all feeling these themes to some degree.
The Essence
In another life
Home feels like home
I've mourned you now
Longer than I've known you
As the trees cry their leaves
Vulnerable, just like me
Maybe, maybe it will be alright?
We all hurt sometimes
Maybe, maybe it will be alright?
We are running through the waves of time
And the truth can lie
In the arms of a fight
And I try, and I try
But it hurts so much
To be in touch
So I'd rather not
We make amends with the roads we cross
Like rivers flow
To be near your ground
Maybe, maybe it will be alright?
We all hurt sometimes
Maybe, maybe it will be alright?
We are running through the waves of time
And the truth can lie
In the arms of a fight
And I try, and I try
But it hurts so much
To be in touch
With the essence of us
A Soul With No King
I know you know me and you always will
Like a man with no wisdom and a soul with no king
A soul with no king, hmm
I know you fear me, your heart unfulfilled
Like a world with no mother and a home never built
Advice that doesn't make sense for people with ME/CFS, POTS, Fibromyalgia, and other energy-deficient diseases. Yikes.
Before we begin, please understand that I'm saying this as a person with moderate and NOT severe ME/CFS. Severe ME/CFS is a different issue as they lose all independence. I'm about 70% housebound these days. I can run out and do short quick errands during my good hours. I can work a few hours a week. I can manage some chores most days. At my best, I get about 3 to 4 usable hours of energy each day. At my worst, I'm in bed most of the day (and I have 2-3 days like this most months.)
And so... for the BAD ADVICE:
Food Prepping
A hallmark of ME/CFS is Post Exertional Malaise (PEM), which means that after a person spends too much energy then they crash and have to completely rest until they recover. PEM rest can take a day or two, or it might take weeks. Depends on the severity of ME/CFS. So the recommended method for avoiding PEM is something called "Pacing." Meaning, the person does a little bit of work at a time, but not enough to trigger PEM, and then rests. Then does a little more work later, but not enough to trigger PEM, then rests again. And so on. Basically, doing too much (spending too much energy) all at once means more time recovering in bed than if we pace ourselves and avoid doing too much at once. We tend to be able to do more if we're not regularly crashing ourselves.
So... this idea of "Food Prepping" is confusing to me. It would take HOURS to do all the prep at once. I know people who spend their entire Sunday afteroons food prepping. Hours of chopping veggies, cooking, portioning, washing dishes, cleaning up... noooo. That's way too much work all at once! This makes sense for couples with kids who both work long hours and can't find time or energy to cook once they're home in the evening. It doesn't make sense for chronic illness. Chronic illness is better when food is kept simple, and frankly, this isn't a simple way to approach food. Food prepping is strictly a time-management solution for busy people.
Let's explore how I eat for an example of pacing:
Breakfast is usually just frozen organic sausages, and all I have to do is put them in a pan with water, put a lid on it, let them boil while I take all my pills, and then eat them. Easy. And how could I food prep that? I only eat protein for breakfast due to my reactive hypoglycemia issues, so there's no need for me to complicate breakfast with things that require a lot more energy to cook.
Lunch for me is typically a simple salad. Salad isn't exactly the best thing for me because raw foods are really hard for me to digest, but it's easy and I need easy (and I have digestive enzymes I can take, ha.) I make it of romaine, avocado, cucumber, organic deli meat, and light sugar-free and seed-oil-free dressing. I might add in some artichoke hearts, olives, or beets from glass jars. Sometimes I add sprouted nuts and seeds too. When I say avocado, I usually mean pre-made guacamole that I scoop out. Honestly, it's really simple. The work comes from shredding up the deli meat in my hands and washing my hands. How could I food prep any of this? Everything I add to my salads is already prepared.
My afternoon snack is beef jerky or a protein shake. No food prep there.
Dinner. Dinner is where I need energy. I'm way better off cooking every dinner from scratch though. I thaw my meat the day before. When it's time to cook dinner, I go slowly. I start with chopping veggies if I need to, and then I store what I don't use in a container in the fridge at that point. For instance, I usually don't use a whole zucchini for one dinner, but I'll chop the whole thing (since I'm chopping anyway) and store the rest. My husband likes to chop his own veggies (he eats onions and peppers, and I can't.) I also buy pre-cut veggies when available, like shredded carrots or sliced shitake mushrooms. But my favorite? I buy frozen veggies and dump them in the pan. Frozen veggies are the best of the best for me. They're already cut, I can buy them in bulk, and they require no extra work.
I don't make big fancy dinners - I keep it simple. But my diet is also simple. I always eat meat with veggies, nothing else. Almost all my dinners are low-management. I pour walnut or coconut oil in a pan, add my chopped veggies, season them, and let them cook. Then when they're halfway cooked I add my meat. Sometimes I use a whole uncut chicken breast, sirloin steak, or salmon steak. All I have to do is season it and flip it. Other times I'll chop the meat to make stir-fry, then stir occasionally until cooked. I might add coconut aminos, coconut milk, lemon, etc. You're never going to see me cooking anything that requires a lot of steps - but I also can't eat grains, beans, dairy and sauces, or other things that require extra work to cook.
Oh, and how I love my Instant Pot!! It takes the work out of making roasts, stews, and soups. I always buy a quarter cow and store it in my deep freezer, so I get a lot of meat that needs to be slow cooked. The Instant Pot cooks it really well and saves me loads of effort over crock pots and the oven!
While food is cooking I wash the dishes I can wash (I do not have a dishwasher currently..... that's a major issue with my energy levels.)
Note: I have a husband. When I'm really bad he will always take over cooking dinner. We avoid eating out, but we will Doordash if necessary too. I also keep cans of soup in the pantry for quick and easy dinners. I have multiple back-up-plans.
Keep it simple, don't food prep. Spread your energy out into smaller chunks. Don't spend too much all at once. For many with ME/CFS, cooking anything at all would be way too much energy. In that case, you're going to need a caretaker or rely on food delivery. That makes this a moot point.
Taking High Doses of Vitamins
It's probably not going to "cure" you unless you have severe deficiencies, in which case, you don't have ME/CFS. You have nutritional deficiencies. It's a really common cause of chronic fatigue, but it's not the cause of ME/CF Syndrome. Chronic Fatigue Syndrome and Chronic Fatigue are not the same, which is why CFS is going by ME these days.
We need proper nutrition to feel our best, and getting proper nutrition will help reduce how bad we feel. If we're deficient in vitamins and minerals it can present as muscle pain, nerve pain, brain fog, insomnia, bad skin, losing hair, poor vision, ringing in the ears, and more. Yes, if you are deficient in anything, supplementing can help relieve symptoms. That said, ME/CFS is not an illness of nutrition deficiency. ME/CFS research is still determining how ME/CFS works, but we have evidence that it's an immune cell deficiency, or mitochondrial problems. There's also evidence that it's a brain fluid leak.
The problem, however, with just taking some random mulivitamin or a B-Complex is that they might make you worse:
1. There's no regulation on supplements. There's no FDA monitoring them. So you can't know what you're really buying... unless you're buying from brands with 3rd party certifications, in which case you're going to pay a lot more. It's worth the cost of good quality vitamins if you need to take one. But so many of these cheap vitamins are not what they claim to be, and there have been lawsuits because of this issue. Walmart and Target store brands tested some pills and found they were just filled with fillers, not what the label said they were.
2. So many multivitamins use forms of vitamins that are synthetic and not well absorbed. When you buy a multivitamin from Walmart or GNC, you're not getting the same vitamins you'd eat in food. You'd never find cyanocobalamin in food, but that's the most common form of vitamin b12 in supplements. What they do is bind cobalamin to cyanide (yes, the poison in apple seeds) and call it vitamin b12, because the cyanide has the ability to get the cobalamin into your blood stream really easily (cobalamin on its own would pass right through you without getting absorbed.) Then your body has to clear out the cyanide (poison), which takes a lot of energy - and we can't afford the energy to be detoxing like that. The amount of cyanide is considered to be well below the toxic limit, so it's considered safe. That said, people who need to take very high doses of B12 (very common in those with fatigue illnesses) often don't have bodies that can handle any extra substance to detox. I have talked with people in groups who claim that these synthetic vitamins tend to give them a lot of gut pain, trigger IBS issues, and cause flare ups. When they take the more expensive natural forms they don't have these problems. If you want to read even more about this issue, I recommend reading Dr. Ben Lynch. He is a leading researcher on genetics, and how things like forms of vitamins affect our DNA.
3. So many vitamins contain super high doses of vitamins you can actually overdose on. Look at the supplement facts on any vitamin. The first on the list is vitamin A, a fat-soluble vitamin (meaning your body stores all of it in your fat instead of passing excess through you in your urine.) Fat-soluble vitamins are vitamins you can overdose on, and you can actually get sick from vitamin toxicity. Vitamin A is always in a really high percentage (like 1000%+ RDA) because these companies want you to feel like you're getting your money's worth. Except you really don't need that much vitamin A. You really really don't.
4. Vitamin toxicity can cause a lot of problems. I am prone to vitamin b6 toxicity, which causes my neuropathy. The moment I start feeling the tingling in my feet return, I know I've had too much b6 in my food. When that happens I have to avoid sunflower seeds and poultry for a while, because they're the foods I eat with the highest amount of b6. I wrote a blog post on this.... let me go look for it to create a link.. Wait no... I didn't. HOW DID I NOT WRITE ABOUT THAT. That was a MAJOR issue I went through! Scrolling through my blogs, I see that I did touch on it in a few different posts, and it started here. I need to write about b6 toxicity!!! It's so important!!
Yoga - Or Exercise in General
Let's go back to what ME/CFS is: It's defined as chronic fatigue that is made worse by exercising, causing Post Exertional Malaise (PEM.) Exercise makes ME/CFS worse.
Deconditioning is a real issue though, so it is good to move as much as we can with the energy we do have, as long as we don't do so much that it triggers PEM. I am able to go for a few walks each week, usually about a mile. They have triggered PEM for me sometimes, but when they don't, it's worth walking. It feels good if I don't push myself too much.
But I also want to explain why Yoga is a bad recommendation for people with POTS. Yoga involves a lot of inversion, and POTS is triggered by postural changes like inversion. A yoga instructor that understands POTS can be helpful, because there are some yoga practices that don't involve postural changes, but it will be hard to find such an instructor. People with POTS do need to strengthen their legs to help with the blood pooling, but they need exercises without postural changes. I really like exercises in which I'm laying on my back or stomach.
Essential Oils
Oy vey... essential oils. What a huge topic! As someone with MCS (Multiple Chemical Sensitives), I don't really like to recommend EOs because they all contain VOCs, which can trigger reactions. A lot of brands use formaldehyde doners in their oils too. I personally don't have problems with some EOs, and I'll use them occasionally because they do help. I don't use them for perfume or aromatherapy, I use them for things like massaging blood into feet or treating my skin when I get hives or rashes. But for the purpose of this blog, I'm not going to focus on MCS issues. I want to focus on bad advice for treating fatigue.
ME/CFS comes with a lot of sensory issues, and the purpose of EOs are to stimulate your senses. They work because they affect your nervous system. That can be too much for people with ME/CFS to tolerate. It's possible that one or two could help someone with ME/CFS, like using lavender when they have insomnia. I find that ginger oil in my baths helps keep me warm for a few hours after the bath (I'm always freezing cold.) The problem is not EOs... the problem is people who recommend using them. They're not careful! If someone with ME/CFS wants to use EOs, they need to use very light amounts at a time to see if they can handle them. It's really easy to overwhelm the nervous system with EOs, which can create even more fatigue, even cause headaches and muscle aches.
EOs (if they're pure, organic or wildcrafted, and without synthetic perfuming agents or stabilizers added) may help manage some symptoms if you can handle them. If not, they'll make you worse.
What they will not and cannot do is cure ME/CFS, Dysautonomia, Endometriosis, or any other illness. It's bad advice to recommend them for someone with ME/CFS because it's most likely just going to overwhelm their nervous system. It could be like someone blasting rock music while you're trying to sleep - they're too stimulating. Sensory overload. People with ME/CFS really need to maintain a calm nervous system. The least sensory issues possible helps. Avoid smells, loud noises, light pollution, bad textures, etc.
Go to Therapy
For grief counseling? Yes, that's a good idea! The ability to talk about how much grief this illness causes is really helpful!
In my experience, however, this advice usually means "go to a psychiatrist for drugs to treat your anxiety" OR "go do CBT to fix how you think." It's not only a highly dismissive remark, it's dangerous. CBT is a therapy that assumes your root causes are all in your head - that you believe you have an illness instead of actually having one. It's very insulting. Read the article in that link and it will explain why CBT has harmed many patients. In short, CBT encourages patients to stop acting like they have an illness, which leads to the patients making themselves MUCH worse because they try to exert energy and live "normally."
Just Get a Job Because Having a Reason To Leave the House Helps
When I first got sick, a lot of people told me this. I wasn't working for 1.5 years, and I was bedridden for much of that time. I didn't get a job until after working with a doctor for a while and recovering enough to be able to work very part-time. Without seeing that particular doctor, I wouldn't have been able to manage working at all. I saw loads of doctors who couldn't help me, then I flew out of state for my naturopathic doctor, and he was able to help me. He's internationally recognized at helping people like me though, where as all the local doctors I saw didn't have a clue what was wrong with me.
After I started working again, did the job help me recover? No. It didn't do anything for my physical health. Did it help give me a sense of purpose and lift my depression? Yes, but it's because of the nature of the job I had. I was very passionate about the work. Despite my passion for it, I was seriously not able to work more than 10 to 15 hours at best. I couldn't work multiple days in a row, and I spent my time at home recovering.
We must remember that ME/CFS is an illness of energy. Jobs take A LOT of energy, and if we can't spend energy at our jobs, we're probably going to get fired. If we give more energy than we have to a job to avoid getting fired, we're probably going to have a lot of PEM that keeps us feeling at our worst.
Highasakite - Science and Blood Tests
Florence and the Machine - Sky Full of Song
The lyrics are wrong in this video - it's "I can hide from the thunder in a sky full of song."
I'm not entirely sure I even want to write this blog post, but I thought that perhaps it would help me. (Edit: It didn't. But I'm publishing since I wrote it.)
It isn't so much the pandemic or the election. It's the way people are reacting to both. People are emitting intense energy everywhere I go: work, grocery store, online forums, online games, etc. This energy is so stimulating and taxing that it's draining my own. I'm hiding away inside myself to protect my precious little energy from the storm, while observing and analyzing the people around me. I'm taking it all in and internalizing it, not expressing myself very often. If I was healthy I'm sure I would enjoy being engaged in the debates with others. The person I used to be would have joined in the fight. The person I am now that I'm sick can't be the same as before, however, because I would fall apart rapidly. As the wisest people in my life have told me, I need to nurture myself first. All this internalizing might be causing me some unnecessary stress that I'm not fully aware of. A couple of my health care practitioners have told me my body is expressing a lot of stress and they've asked about my emotions. I think I'm subconsciously suppressing my emotions as a defense mechanism that I don't have control over right now.
The truth is that I'm emotionally numb, which is a sign I'm not taking care of myself. I'm often acting when I am talking to people, which is frustrating me because I'm a very genuine and sincere person. There are only a few select people that I'm able to be totally myself with, and it's a huge relief to be in their presence, but even then I'm more comfortable just listening to them (thankfully a couple of them are my co-workers!) I'm going to have to dig far to pull the emotions out of myself. I've been living one moment at a time. I'm following the news, I'm reading the facts, and I'm listening to what people around me are saying. I know what's going on around me. I'm just not reacting to it, and that's not healthy. I know it. So... am I ready to react here, to this blog? I feel like I'm acting just writing this. I'm so dissociated.
*Deep breath*
I feel like every camp or ideology I've been aligned with is getting turned upside down and shaken out. I don't recognize the political parties anymore, and I've struggled to find my values in any candidate. I'm Roman Catholic and agree with many liberal values, but I'm not like Joe Biden. I have often voted Republican, but there haven't been any Republican candidates worth voting for (except for my governor, and he's disappointed me in the past couple of months.) I don't feel represented. I'm happy Trump will no longer be president, but I'm not happy with his replacement. If I explore my feelings on the election, I find myself just compromising. "Well Sarah, at least he'll take Covid seriously and that's really important. He'll protect our National Parks, I hope. He'll listen to scientists about our crazy tap water crisis. He has potential to do good." If Trump had won I would have made compromises too. But the more I dig for my feelings, the less I care. It's just not worth my precious little energy. I am very passionate about my concerns, and the president isn't going to affect my ability to advocate for what's right. I can do good and right things in my little corner of the universe. I can focus on what I have control over. I voted. I had my say. I was really quick to accept the outcome and move forward. Time to refocus on my actual life.
What I'm really struggling with politically isn't the presidential election at all. Again, it's how people are reacting to it. I've been watching people act as if we're all going to hell or getting saved from hell. It's so incredibly extreme. When I see Trump flags, hats, and t-shirts I feel overwhelmed. When I see people celebrating that Trump is not going to be president anymore, I zone out. So why can't I just ignore it? Because people keep attempting to engage with me in aggressive ways. I wouldn't mind a civil discourse when I'm not at work and feeling decent, but my experience here in North Dakota has been overwhelmingly hostile (not physically violent, but verbally pushy.) I have had several of my customers preach to me about how Trump is some sort of Messiah figure for the world. What triggers them to preach to me? Me wearing a mask or sanitizing. They started out by telling me their opinions on Covid, which, after some time and a whole lot of words, led to statements such as, "So you better have voted for Trump!" Each time I just shut down. I felt myself just go black inside, going still and quiet. I'm happy to work and sell them what they need, but it's completely uncalled for to lecture me about political preferences for doing my job. No one has been this aggressive with me about voting for Biden. It's only Trump supporters.
Politics are so intertwined with Covid that it's impossible to separate the two anymore. My observation is that Trump supporters have been rallied and trained to fight. They're soldiers in the Trump army. I hear so many of them preach about media misinformation, quack scientists, liberal propaganda, and socialism. Maybe there's some truth in some of it, but I don't respond to the aggression they use to preach about it. They don't want their freedoms taken away, so they join a movement in which they all follow this Messiah figure as their leader. This Trump Messiah guy tells them masks are harmful, Covid is not a problem, and it's okay that people are dying. So they fight like soldiers in his army and fight against any Covid mitigation strategy. Instead of rising to the occasion of managing a world-wide crisis in the USA, they decide to belittle anyone who wants to.
Yesterday a regular customer of mine, someone who loves to tell me how sweet I am and always wanted a hug, yelled at me. Our governor implemented a state wide mask mandate at 10 pm the night before, and we were asked to kindly and gently enforce it with our customers. We asked her if she would please wear a mask, and she said no and kept walking into the store. She then yelled at us, me specifically at points, about how we have bought into the mask propaganda and were not only wrong, we're dangerous. I said several times, "It's state mandate now, we're doing what we're told, we want to keep our business open, we don't want to get fined..." and I was only met with very hostile verbal attacks in return. No problem solving, just accusing us happily of doing our jobs well.
*Big sigh* You know, 95% of my customers yesterday were really good about wearing masks. They didn't complain. They knew it was necessary, so they wore it and shopped normally. They're awesome. They help life go on as normally as possible while showing respect for each other. But the rest...
What happened? What caused people to be so verbally aggressive towards each other? How is it that Trump harnessed this rage in people and formed them into soldiers? I'm not saying Liberals are without problems too - oh I certainly have had my fair share of issues with them too. But since Covid began it's really only been Trump supporters that have been harassing me about Covid. So guess what? They're the #1 reason I did not vote for Trump. I didn't vote for Biden either, but that's not the point here and requires some explanation about my morals and how I live in North Dakota and my non-Trump vote doesn't matter one bit. I don't respond well to manipulation, aggression, and harassment. Maybe I even like some of what Trump has done for the USA! It doesn't matter. I will not tolerate a leader of an army of people who threaten my safety.
My mind is blown. I think I might be in some level of shock. I really genuinely do not understand why it's such a problem to simply just wear a mask properly in public places. I understand there are some side effects for deaf people, certain people with breathing troubles, people who have been raped and muzzled, etc. Of course we can accommodate these people safely while everyone else wears a mask. The masks mandates are not designed to be inhumane, they're designed to save human lives. We're a creative and innovative people, right? Let's be problem solvers. Let's make sure everyone is cared for, not suppressed.
I struggle with air hunger from time to time. My respiration rate averages around 17-18, which is on the high side. I've never had a problem with a mask suffocating me. Maybe it's because I've taken the time to find the right masks for me. I've experimented until I found ones that fit properly, don't move too much when I talk, and are breathable. Maybe other people buy any mask available and it doesn't fit them well and so their breaths are stifled. Maybe. That's not an excuse. You have to buy clothes in your size if you want to wear them, right? Find a mask that fits you if you want to wear it.
Is it so important to be right that you're willing to risk harming other people? Really? You'd rather not wear a mask and possibly be the reason someone gets infected and dies? You're honestly willing to take that chance? You're so sure you're right that you're willing to yell at other people, an action which spreads Covid most easily? Do you really want to kill or die for this this cause? Is it really worth it? Seriously, stop thinking about the unscientific claim that 99.98% of Covid patients survive. Millions have died. Are you honestly okay with being the reason one single person has died from Covid? You're seriously willing to do something that could kill a person? All just to be free? Because you really believe you're entitled to your freedom at the cost of a fellow citizen's life? Are you at war? Can you justify your war? I challenge you to take a long hard look at your core values if you really are comfortable not wearing a mask around other people right now. And even if you are comfortable, do you have so little empathy for others that are, with very good reason, uncomfortable if you don't wear a mask? I'm not some wimpy snowflake who's afraid to die. I can put up a good fight if I need to, and death isn't what scares me. But I really don't want to get Covid, and I really don't want you to give it to me. I'm not wrong to want my freedom to be in public as safely as possible.
Okay... I don't know if this has been good for me or not. I'm agitated. I need to shift gears:
To all of you who have been good-natured, loving, empathetic, joyful, compassionate, caring, and supportive through this Covid and Election crisis... Thank you SO MUCH! I know many people who are not convinced masks are the right solution, but wear them without complaint anyway because they know it makes everyone around them more comfortable. I know people who have gone out of their way to create solutions for masks so they accommodate more people. I know people who have been willing to buy and deliver for high risk people. I know people who have organized supplies for people in need during this crisis. To all of you problem solvers: THANK YOU SO MUCH! Seriously, you're the reason I have hope for humanity.
I'm so thankful for all of you making the effort to not spread Covid so that we can keep our businesses open. I don't want to shut down. I want to keep working. I want the small local health store I work for to thrive. And I really really don't want to get Covid.
My Messiah is Jesus Christ. I believe he gave us brains to problem solve, and it's our faults if we don't use them to survive this world.
...And now for a baking soda bath to calm down my super itchy rashes all over my body.
I wish I could go to a gym and work out for an hour. I often day dream about lifting weights like I used to. I loved the feeling of being sore and tight in my muscles, feeling a natural tiredness from actually using my body well. I loved seeing muscles forming on my arms and legs. I loved shaping my body by staying toned. It felt really good. Now when I look at women in great shape it's a little hard for me. I'm really happy for them, but it makes me want to join them at the gym and get back into shape.
I really do my best to work out, but it's really challenging with chronic illness, and often ineffective or harmful. Let me break this down:
- Fatigue. I often have the mental willpower to sit at the machine and start pumping weights, so I'll go for it. And then I can't even finish a set before I run out of energy. This isn't a de-conditioning issue. If it was then my diet, supplements, and regular practice with the weights would mean I could do more every time. If it's de-conditioning, then I can actually improve. No, this is a problem of my body deflating with every pump of the weights until I have nothing left to stand up with. Every time I try I can do a different amount of weight lifting until the fatigue wins. No, it's not a de-conditioning issue, because if it was, I would be able to consistently do more with practice.
- Pain. I don't mean the normal wear and tear on muscles from working out. You know, the "it hurts so good!" pain that I love to feel. I mean joints on fire. I mean feeling ripping in my ovary from pushing or stretching. I mean chest pain from my HR going really high after just a minute of working hard. I mean throbbing in my head from blood not knowing how to circulate correctly while I'm working out. I mean an abnormal constriction in my neck and shoulder muscles that makes them super tight and in pain for a day or two after, like a cramp that doesn't want to be massaged out.
- Post Exertional Malaise. This is the fatigue that is the result of spending energy. For a healthy person, they might experience it for an hour or two after. They can still get stuff done if they have to, but they'll be tired and lose some motivation and focus. Their body needs to recover and they'll be fine. In my case, and the case of many people with various chronic illnesses, it's much worse. When I spend the limit of my energy or more than I have, it might take a day or two of recovery time to get back to my normal fatigued self. This means a lot more time in bed with brain fog, jello for muscles, disrupted metabolism and bathroom needs, mood issues, high heart rate with a sore achy chest, inflammation and swelling, and an inability to properly care for myself. When this is a normal response from my body, how am I supposed to work out regularly and have the ability to get stuff done? Like, having energy left to spend at my job? I have to pick and choose where my energy goes, as if my energy is money in my bank and the balance is always low.
So I do my best. What can I do?
- Walks. I feel the best results from going on walks, but the distance I can go depends greatly on how I'm feeling. 1 mile is my typical cut off point, but I have been able to go 2 miles on good days. Walking is the least taxing and most gentle way for me to move. I can move longer before my body gives out. The problem is that I live in North Dakota, so I can't be outside for half the year without a lot of weather gear on. Treadmill? I'm not getting a gym membership just to walk on the treadmill near stinky perfume-ridden people. I'm so reactive to perfume that I'll have to leave from feeling sick before I get much benefit from the gym. I've already gone this route with a YMCA membership. I also spend too much energy just getting to the gym. I'd rather just buy a treadmill for at home, but they're expensive!
- Stretching. I was in ballet and gymnastics for my entire childhood. I learned great stretches that I've continued to do my whole life. Stretching actually drains my energy rapidly. I can feel my battery depleting as I do it. But I feel like it gives me the most benefits with the least work.
- Doing short quick sets with lighter weights. I have a weight machine at home that I use, and if I do a little bit of everything over 3 to 4 minutes I can manage. It's not enough to build muscle or tone, but it allows me to use my muscles before triggering too many problems. I can feel my arms tightening up, but I can't find the energy to do enough to make them burn from building muscle.
- Tai Chi... to a certain point. I can't keep my arms lifted up long enough to stay in the poses. I like it because it works me out a lot with little effort, and it keeps me calm in the process. It isn't adrenaline-inducing. But it's physically taxing and I normally cannot make it through a sesson.
- Working on my feet for 4 hour shifts, 3 days a week. To me, going to work is my work out. I spend 3/4ths (or more) of my weekly energy at my job. I'm on my feet walking around, carrying stuff, cleaning, talking, squatting down and standing up, and just plain moving. Work leaves me feeling worn out and exhausted. I have had many many shifts where my heart physically hurts by the end. I almost always have post exertional malaise from shifts, so I'm often scheduled with a day or two between my shifts.
I want to make a special point to say that Yoga is not helpful. Why? I have POTS. Positional changes can be hard for me. Every time I try Yoga I get super dizzy, sometimes it gives me vertigo. It doesn't keep me stable while using my body.
The problem is that I still spend the majority of my time sitting or laying on my butt. It's not by choice, but by necessity. So I have a big flabby butt. The rest of my body doesn't reveal my lack of exercise that much, but my butt screams "I sit and lay too much!" I don't like it.
And that leads me to my next related issue: Clothes.
Notice how fitness and yoga clothes are the norm for women these days? Even jeans are skinny to show off our figures. Now, think of yourself as someone with chemical sensitivities that is reactive to synthetic fabrics, so you can only wear natural fibers and dyes without issues. Okay, now I want you to go shopping. Look for organic and natural clothing companies: Tasc Performance, Pact, Adventura, Synergy Organic, Toad and Co, Fisher's Finery, PrAna, Ten Tree, Groceries Apparel, Green Apple, LA Relaxed, etc. Find me some pants without added polyester that won't showcase how big my butt is. Please. And leave it in the comments when you find a pair. ;) Organic companies tend to make clothes for people who love fitness and have good bodies. Yes, they'll make sizes up to XL, but their pants (aka leggings) still tend to be tight. Almost all of these brands tailor their pants for women who do not have a curvy butt and wider hips. Maybe the problem is that I'm a size 8-10, I'm not overweight.
So I buy the pants and wear them, but I'm not happy about showing off just how out-of-shape my butt really is. I'd rather that my pants had enough thickness and structure to flatter my butt. But that's too much to ask, apparently. Carve Designs made a pair of jeans that fits my curvy figure and they're awesome, but I don't like the short inseam with the frizzy cut off bottoms. If they were full length pants I would hem them, but they're 29" - the perfect inseam length for me, so there's no room to hem.
I'm typing this post thinking about how badly I want to tone up. My mental energy wants me to go work out. My body is dizzy, feels like a brick, is sweating just sitting still in the cool air, with weak jello muscles, freezing icy cold toes, and keeps forgetting to breathe because it wants to stay still. I worked yesterday, and it was a physically demanding shift. Post exertional malaise.
It's amazing how much I can roller coaster. For the last month I've been in the very low part of the coaster. I keep thinking I'm at the bottom and I'll start going up again soon, but in the last few days I did get lower. Oi! I'm working on my second cup of black tea this morning. I woke up at 5 am and then again at 9 am with a powerful headache on the top of my neck. It wasn't that I was struggling to keep my eyes open, it was that it was physically painful to be awake. Not grogginess, just very low energy and strain in my head and eyes. There was no going back to sleep though. I have been taking naps in the afternoon the last few days as well, and I normally (95% of the time) cannot nap during the day (or even fall asleep naturally at night). I have just been overcome with heavy weakness, brain thoughts coming to a grinding halt, and an exhaustion that lulls me to sleep. It's actually nice to feel real sleepiness - I forgot what it felt like.
45 minutes ago I wouldn't have had the strength to sit at my computer and type. I'm not feeling good yet, but I'm sitting cross-legged on my chair and reclining, which is just enough to help me manage. But you know what relieved my headache? Not caffeine this time. A shower that was as hot as I could tolerate. I sat down and let the near-scalding water hit my neck. I could feel a rush of blood to my head (but I was too tired to hear Coldplay sing in my head) and the headache lifted. Then I got out of the shower and it started to come back. Then I ate some meat and it started to go away. This feels like a low blood pressure and low blood sugar kind of day, but I've been way too tired to bother to check either. I did see a doctor a few days ago and my blood pressure was something like 90/65 - I had a narrow pulse pressure. And they had my talking a lot as they took the blood pressure, so I'm sure at rest it was lower. I also had to get labs drawn and the first nurse totally gave up on me. She couldn't find a vein, so she put a hot pack on my elbow. It didn't help, and my hands remained purple and ice cold. So she got another nurse to come in. That nurse had the same problem, but she decided to just push the needle in my elbow and move it around until blood came out. Ouch, yes, that hurt. She had to go deep too.
I'm starting to give myself a stomach ache with this tea... and energy is not affected at all. All I know is I have to be ready to go to work in 1 hour and 45 minutes. Not entirely sure if my body will cooperate. I can't stand up long without POTS kicking in and making me collapse to the floor. So here's to hoping compression socks, more salt and licorice herb, more food, more caffeine, and being forced to move a lot help.
I'm pure mush. Scattered unfocused thoughts, body feels and moves like jelly, highly creative dream like state with zero energy or care to apply it to anything, and a stagnated digestive system that doesn't know what it wants. I keep trying to find something to do with myself today, but after about 30 seconds of anything I turn into sludge and feel sleepy. This is PMS - it's more than just mood issues, pain, nerve issues, cravings, and acne.
I don't really like watching much TV alone because it's not interactive enough for me and I get restless, even when I'm overcome with fatigue. I like certain shows or movies when I'm watching with my husband or friends, but it's never a first choice when I'm alone. But watching Carmen Sandiego (new Netflix series) has been the only thing I've been able to enjoy today.
I don't really feel like talking to people, playing my game, sleeping, cleaning, cuddling with my pet birds, reading, working on my Spanish skills with Duolingo, sewing, drawing, listening to music... I'm just existing and being useless.
If I was forced to overcome this and go to work at a job how would I do? Well, it would require caffeine, licorice root, more adrenal complex, eating properly, and a whole lot of motivation. There's no way I'd perform well and I'd just prevent recovery by pushing myself. I'm overspent from pushing myself too hard yesterday to perform well at work. There is a point where my body will simply refuse to function well despite what I take to help it. I'd end up spacing out, forgetting things, stuttering and slurring my speech, dropping things, and finding myself unable to find mental energy problem solve.
Mush. Just pure mushy mush with stabbing pain thrown in here and here, even though occasional nerve ache in my leg.
My period is running late, but I've been in PMS for about 2 weeks. I've grown so weak from it, and my mood instability took over yesterday. Today the barometric pressure is contributing in its own exhausting way. Yesterday we shot off fireworks for Independence Day, and, well, the smoke played its huge role on how I'm feeling. POTS is roaring and telling me to stop trying to move. Not to mention the fact that I'm just overly tired from too much happening in my life. I've been running on empty for a while.
It's 3:30 now and I've been asleep 70% of the time since midnight last night. When I've been awake all I can do is tend to my nausea, bowels, vertigo, tinnitus, jello legs, cramping, and super bad mood. Why am I writing this with what little energy I have? Venting, of a sort. I have to talk about how I'm feeling somehow. I deal with it better when I can take it out of my internal self in some way.
This was me yesterday, putting on a face. I felt mean, exhausted, borderline ready to blow up in rage (if not for the exhaustion), and dealing with cramping and pain. I got dressed up for planned family photos. I tried so hard to hide it, and it ended up resulting in being very withdrawn with a few angry words that slipped out. Basically, I was faking being well. I'm so so so so sick of hearing "but you look good!" Yeah, I looked good on purpose. I'm not happy with my bangs, but whatever. It doesn't reflect how I felt. My head is twisted so you don't see my acne.
This is part of what's happening below the surface:
I use Clue, Period Tracker, and Fitbit to track my periods. Featured here is Clue. It's not the easiest to understand how to read these charts if you're not familiar. Those 2 red dots before the blue "fertility window" part of the cycle were when I was spotting during ovulation. The app keeps pushing up when I was in ovulation due to the length of time between my periods. I started PMS symptoms with ovulation, when I was spotting, I just forgot to track for a few days. All those colored dots in the last 12 days are PMS symptoms I'm experiencing (that I remembered to track.)
If you look at the calendar in the next photo, you can see how much of my time my menstrual cycle is affecting me. The blue times, or ovulation, always come with their own set of symptoms (even if I forget to track.)
This is all below my surface. Add to it MCS reactions, POTS, Chronic Fatigue, Chronic Pain, IBS issues... Seriously, I'm so over all this. I spend every freaking day dealing with all the crap in my body that I don't/ can't necessarily show on the surface.
I really didn't want to call in sick to work today. I try to reserve that for only the worst of the worst. I know I'm about to get even worse whenever I actually do start my period, so I wanted to save it for then. But I just had no strength to work with. Every time I got up to the bathroom I just saw spinning flying stuff around my head and my legs were wobbly. Eating made my symptoms worse. I couldn't stay awake. I kept falling asleep with my phone on my chest.
Getting sleepy and cross eyed trying to write this, but damn... if only I could scream and punch and curse and exorcise this demon out of my body. I need to talk about this. I need comfort. I need compassion. But it seems like most people in my life just want to tell me to suck it up and deal with it. I don't feel safe saying what I really think or feel to most people.
And tomorrow? Who knows. But I'm scheduled to work and my coworkers will be too short staffed without me. This is very stressful for me. It's not anyone's fault, but I can never know if I can be depended on when I'm late to start my period. The stress...…… grrrrr
There are several reasons why I'm careful and guarded about who I give my energy to, but one of the biggest reasons is that I am a highly sensitive and empathetic person. I read people's energy, and it affects my own very quickly. This is dangerous for me because I don't have much energy to begin with. If someone is full of joy and positivity, it overwhelms me and makes me feel numb. If someone is full of resentment and anger, it spikes my adrenaline and makes me feel weak and worthless. If someone is full of melancholy, I feel a kindred spirit that I'm safe around because I'm not being met with expectations from them. I need to be around calm, relaxed, and laid back people to feel my best. People who are full of drive and determination, want to be too helpful, want to solve problems, want to vent and let off steam, or just want to have too much fun all overwhelm me. This doesn't mean I don't respect when people feel these ways. I am not asking you not to feel these ways, I simply need to guard myself from these feelings to protect myself.
If you know me personally, you might remember I used to be someone eager to analyze the problems of the world and try to come with explanations to understand them, maybe even come up with solutions to solve them. I wanted to talk about politics, religion, world events, and major news stories. I enjoyed thinking through world problems so much that I pursued a degree in Theology.
I can't be that person anymore. I am so overwhelmed with living day to day in my own skin, that I'm unlikely to have an empathetic and caring response to any world problem. You tell me children are dying every day from starvation in that country? I put up a wall immediately. If I choose to give care to this statement I'll be too sick to function. The emotions will exhaust me. You probably expect me to want to talk about how to solve this problem, and then appeal to my empathy and ask for my help in putting a plan into motion, or at least complain about the people who don't help. I can't do this. I can't feel my heart break for every suffering person in the world. It will cripple me. I need my energy to go towards standing upright, talking, digesting, doing chores, working my part time job, managing my pain, and staying on touch with the most important people in my life. If you ask me to spend my energy worrying about dying children that I have no ability to help, you're asking me to not have energy to take care of myself.
You want me to support Black Lives Matter, join the Me Too movement, join a political camp to either praise or hate on President Trump, become an activist for a controversial organization like Planned Parenthood (pro-abortion) or First Choice Clinic (anti-abortion), have a strong vocal opinion on vaccines, participate in Pride events like parades, stand on my Capitol steps protesting injustice with you...
You want me to be what you want me to be, a soldier in your activism army, and you're not listening to me. Yes, I live in the USA, the land of "tolerance," yet with extreme amounts of intolerance. I live in the land of having the privilege to be tolerant or intolerant. You want me to use my privilege to stand up for or against something. You want me to use my privilege to solve problems.
I can't.
And you're not listening to me.
I don't have the privilege of having energy to participate in the world. I wish I did. I have a whole lot of care deep in my heart and soul that I want to give.
I am not a cold-hearted closed-off person naturally. It's not my nature to ignore problems. I respect my body and soul's need to be calm and restful in order to live my life to the fullest I can in this condition. I am going against my own needs if I choose to get riled up over world problems. I need you to go solve those problems for me. I'm going to give my love, support, and respect to those of you who use your privilege, a.k.aability, to go solve those problems.
Because that's the definition of privilege: Ability.
So in other words, I don't have the ability to spend energy on solving problems in the world.
I want you to stop viewing me, a white female college educated adult living in middle class USA, as a person of privilege and ability. I want you to start viewing me and people like me the way you view all the other minorities you're so concerned about. I am in a minority, one that is grossly mistreated: The sick and disabled.
Thankfully, there are activist organizations who are rallying the privileged/ people with ability to help people in my minority group. Next time you're looking for a world problem to solve, please consider helping those who don't have the ability to help themselves.
These are organizations related to illnesses I have. Please consider using your privileged energy to care about world problems on these organizations:
I have wanted to write a post like this for a while, but I have worried about sounding like a fraud. I'm in a very good situation, considering I'm suffering from these illnesses. I have a good roof over my head, access to high quality food and water, husband and family who are very supportive, I am capable of working up to 12 hours a week (most of the time, I call in sick more than I like to), have been able to see really good doctors, and won my disability case. I have a lot more supporting me than the vast majority of people with chronic debilitating illnesses. I am extremely grateful, because I would still be 100% bedridden (if even alive) if not for all the privilege I have in my life to support me. I really want others with chronic debilitating illnesses that do not have this much support in their life to have more support so that they can be helped. This is my life goal now: finding help for the helpless in this minority group. These organizations make it possible. They help people who cannot win their disability cases despite being 100% unable to work, do not have family support, don't have roofs over their heads, do not have access to quality foods or water, cannot see doctors due to cost or accessibility, can't find a doctor to take them seriously and help them, and want to give up on life.
You want empathy from me? Give some to me and people like me too. I hope you understand why I'm too overwhelmed now. Thank you for listening.
This post is not directed at anyone personally, it's actually inspired by a different blog I just read. I wanted to share my point of view on the topic. Some might think it's directed at them given how much I've struggled this week, but I promise it's not directed at anyone.
I want to talk about this other "-ism." The one that the media, "tolerant" people, and society in general doesn't talk about very often.
"Ableism"
Ableism is a concept like sexism, but in the case of ableism, it's an idea that disabled people can do what able bodied people can do. It seems obvious: a disabled person is not able to do everything a healthy able bodied person is able to do. It's obvious when you see someone with a broken leg. You would automatically understand that that person cannot run a 10k, because running requires both legs to be working properly. It is not obvious, however, in the case of people disabled by invisible illnesses. Do you assume that a person is fully able bodied just because you don't see obvious signs of disability, such a broken bones?
Ableism is a perspective rooted in misunderstanding, a lack of empathy, and often times just simply naivety. I'm not using the word ignorance here, because being ignorant implies that a person chooses to ignore the facts and wisdom about something. Ableism typically is not rooted in ignorance, because it's typically rooted in people who have never been presented with facts and wisdom to be able to ignore it. Ableism is due to a lack of advocacy and communication.
I normally get annoyed by the "-ism" talk, as I find that it's often over simplified as a means to be negative about someone or something. In the case of "ableism," however, I'm annoyed by the lack of talk about it at all! So I want to discuss my point of view on it.
I am disabled, but it's not obvious. My illnesses are not always invisible, but I don't let you see me when they are visible. When you do see me, it's because I have enough control over my body to act like a normal healthy person. This probably creates an assumption that I am actually healthy enough to do what any other healthy person can do.
You may assume that just because I occasionally drive a car that I can always drive a car. On the contrary, I often choose not to drive my car and will cancel my plans to avoid driving. If I drive when I'm not feeling capable it could be life threatening to myself and others. When I'm fatigued and weak my reaction time is very slow, both physically and mentally. When I'm fighting dizziness or vertigo it would be like drunk driving. When I'm in a pain flare I would be too distracted to focus on the road. The reality is that I don't drive very often, and when I do, I've prepped myself with my supplements, the right meal, and enough sleep first.
You may assume that just because you see me on my feet running around at work or the grocery store that I'm always able to be on my feet running around whenever I want to. Just like with my ability to drive, I have to prepare myself for these occasions with the right supplements and food first. I only work part time because I'm not capable of keeping my body in a state where I can be on my feet running around more than part time. I have to make choices, such as if I go to that outdoor autumn festival today, will I have the ability to work my shift tomorrow?
You may assume that just because I occasionally lift weights for exercise that I could do a graded exercise program to get better at lifting weights over time. Except every time I try to improve at some form of physical fitness my chronic fatigue gets worse. I only do what I feel I'm able to as I'm able to. I try to do enough exercise to burn off the high protein diet I eat, but not so much that it drains my strength for more important things, like going to work. Most importantly, just because one day I do 2 sets of 10 reps on my weight machine one day, does not mean I'll be able to carry that 25 pound box from FedEx up my stairs the next day. My strength ebbs and flows, it's not constant or predictable. My ability or inability to exercise in any given moment also determines how well I function in general.
You may assume that just because you see me in public talking to people like it's no problem, does not mean I'm able to talk on the phone at home any time. I can't tell you how many people have suggested I also work from home at an "easy" job like taking McDonald's orders over the phone. Do you realize how much energy talking takes? Especially in a fast paced job? It's difficult for me to keep up mentally, I start to stutter, sometimes my voice goes out on me, my voice gets rough and growls, I say the wrong words without realizing it, I can't say the words I'm reading because my brain won't translate what my eyes sees to my mouth... talking is like a sport to me! It's exhausting! Again, talking is a skill I reserve for times when I need to. You may assume that because I'm a human being and I need to eat food to survive, that I should be able to order take out so that I can eat when I'm feeling too weak to cook for myself. Sorry, nope. I have yet to find a single restaurant in all of the city I live in that serves a dish I can safely eat for a price that I can afford. I'm not going to pay $40 for a 6 oz grass fed steak from a place that normally butters their steaks. I seem to be allergic to dairy, and I've learned that telling a server about my allergies doesn't mean my meal will be allergen free. Chefs make mistakes very often, or they simply don't know that an ingredient they always use would contain the food I'm allergic to. I MUST reserve enough energy to prepare my own food - this is a necessity for me. There's no other option. I can't live on convenience anymore, sadly, even though I need convenience more now than ever due to my fatigue.
You may assume that I can stand up as needed, such as during church or during the Pledge of Allegiance. I have a condition called POTS. I think it's fairly mild compared to many other people I've talked to with POTS, but 2 doctors have told me I have it. It means that when I go from sitting to standing that I experience pre-syncope - the feeling that I'm going to faint. My vision gets weak, sometimes black, I get very dizzy, I see random colors spinning around me, I can forget to breathe, my stomach and bladder sink, and I feel like I need to collapse. I'm not prone to fainting, so I often will stand up and deal with feeling all of these symptoms until my body finally adjusts and I stabilize. But what if that time is the one time I do faint and I hit my head on something on the way down? You can't see everything I feel when I stand up, but I experience it almost every time. I do my best when I slowly stand up, then stay on my feet and moving. I can't stay standing in one spot long, I must keep my circulation up.
You may assume that I can manage my periods just like any other woman has to manage them. Except that not many women have endometriosis, POTS, chronic pain, and chronic fatigue like me. There is no cure for endometriosis. There's hardly even ways to manage it. There's no cure for POTS, and no official FDA approved drug to treat it. When you put endometriosis and POTS together, you get this disastrous combination of extreme pain with extreme weakness. PMS can mean exhaustion to the point of being out of breath just trying to get to the bathroom. The period itself can mean I'm so dizzy that everything spins around me while I'm laying in bed with my eyes closed. Not to mention all the other symptoms. For about 12 years now I've been completely incapable of doing anything other than laying in bed and sitting on the toilet for the first day of my period. Surgery didn't help. At all. Healthy women with a normal period and some "normal" cramping can take a pain killer (if they even need it) and go on with their day like they're just a little extra tired. That sounds like a miracle to me. For years I took 12 ibuprofen on the first day of my period to manage the pain. It wasn't enough, but nothing else I tried worked better.
You may assume that just because my hair is clean that it wasn't a struggle to wash it. 50% of the time I shower I'm sitting on the floor of the shower while I wash. It's because it's exhausting to hold my arms up and stand up at the same time. My heart rate skyrockets and I get out of breath. I always wait to shower until times when I'm feeling strong enough. When I have to shower, but I'm not feeling strong enough, I'll often choose to not wash my hair and go out with dirty hair.
I could go on with many many more examples of how I'm not able-bodied. My disability judge and a few doctors agree. (Yes, I won my disability case after 3.5 years - but more on that some other time.) I'm disabled in many ways. But I look healthy. I do my make up, put decent clothes on, wash my hair, don't wear any casts or medical devices, I avoid engaging with people when I'm struggling cognitively... odds are, I won't give you much reason to assume I'm disabled when you actually do see me in public.
What do I need from you? Why do you need to understand all of this?
I need you to believe me. If I say no, I'm not capable. If I say no, I'm not up to it. If I ask you for help, please help. Don't argue. Just believe me. Don't shame me. Just trust me.
I'm a highly independent person who likes to do as much as I can for myself. I've always thought that I need to do things myself to make sure they're done how I want them done. When put a knife through my thumb and couldn't use it for a few weeks, I taught myself how to put my bra on without that thumb. When I couldn't use my right hand due to major wrist problems and was in a brace, I bought a mouse I could use with my left hand and taught myself to write with my left hand. I get creative so I can stay independent. I avoid asking for help. So getting to be this sick has been a challenge for me, because I've had to swallow my pride and learn to ask for help. I've had to accept that I can't perform to my personal standards. It's very humiliating to me. So when I ask for help or say no, and you reply with a lecture or a snarky comment, you just add to humiliation I already personally feel about myself. If you need to say no to me, just say no. Don't attack me in the process.
Ableism. The idea that you assume someone is able to do what you are able to do.
