One Year and 2 Months Since Moving Here Update

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... 

Walk A Mile In My Shoes With Me

“As my sufferings mounted I soon realized that there were two ways in which I could respond to my situation -- either to react with bitterness or seek to transform the suffering into a creative force. I decided to follow the latter course.”

― Martin Luther King Jr.

We are conditioned to be productive, consume, be productive, and consume. It's a never-ending cycle. 

It is a bad cycle? Not necessarily. We have to work for our food, whether we grow it ourselves, forage and hunt for it, or work for money with which to buy it. Whatever system we rule our lands with must focus on the daily need to eat food. 

So what happens when a person becomes too sick to work for their food? Well... this is a scary question, and perhaps one of entitlement. 

In the far past there were 2 options:

1. These people would simply just die. Survival of the fittest.

2. Their families would keep them safe and feed them as long as possible, assuming they had families who could afford to. This very much depended on class and circumstances. If the family were peasants, vs if the family were nobility. 

Today, we pretend to have a more humane approach to chronic illness:

The government offers assistance, which all of the working class pays for through taxes (not by their choice.) This assistance includes a monthly monetary stipend, discount on medical care though basic insurance, and discounts or stipends on food. The trouble is, the assistance isn't enough. If they're single and have to live alone, best case scenario, people will qualify for section 8 government assisted housing. Have you seen those properties? They're often apartments in really poor condition full of black mold, which will keep people very sick. 

If you fail to benefit from this government assistance (not because you don't deserve it, but because you fell through the cracks in the system), you're forced to rely on your family to feed you or you're forced to work for money despite bad health. 

The problem with family is that they're not always supportive, and they often issue conditions on their help. I've read so many horror stories from people desperate for help who try to rely on family support, but end up more stressed and burdened than if they were homeless. This is usually because families don't have enough money to support the sick person, or because the families are full of skeptics who don't believe it's possible to be so sick. 

The problem with trying to work for enough money to support yourself during illness is that it's usually impossible. No, not just difficult. Actually impossible. The reason for this is that it's hard to get hired, and then it's hard to keep a job because sick people are unreliable and unable to advance. Another problem is that most sick people are unable to get hired for positions that pay well enough to even afford rent. They might have degrees or skills, but be unable to function well enough to use their skills. So they're forced to look for easier work that pays less. Right now it's hard enough for fully healthy and capable adults to earn enough money to afford life - it's that much harder for sick people. 

The Awkward Yeti

We need to be able to find hope in our doctors and scientists. We want to be healed. The trouble is, these chronic illnesses aren't treatable by doctors. At best doctors know how to manage symptoms with medications, or do surgery to reduce the source of the problem. If you're someone that is able to work full-time because of medication, you're lucky. 



Some of us find help from alternative medicine because it teaches us lifestyle choices that prevent causes of illnesses from continuing to keep us sick. But it often just gives us quality of life while living with the illness, and doesn't always heal us enough to be able to work full-time again. This is fantastic! But many illnesses are too complicated even for these natural methods. It's also a very expensive method just to improve quality of life, not necessarily recover enough to live life fully.

So there's really no good solution here. And that's why so many people with chronic illnesses give up and commit suicide. If our society doesn't allow for survival of the fittest to play out naturally, then people will take matters into their own hands and kill themselves. Is this humane? 

I do see a solution to all these problems, but it requires a paradigm shift in society. The solution is in building stronger, happier, and better supported families. We've built a society in which people are individuals, and each person must earn enough money to support their own needs. We really need to move away from this society of individualism, and instead build a society in which families can thrive. This might look like being able to live on a single-income again. It might look like keeping houses in the family, and multiple generations living together. It might look like moving away from big cities and forming smaller self-sustaining communities again. It might look like living with less luxury - we stop living like entitled nobles and start living like peasants again. 

The root of the problem is that managing a chronic illness is always a team effort, never an individual's burden. Society needs to have a structure that allows for people having hard times. We need safeguards against chronic illness and homelessness. A society that thrives on a family structure means everyone should have a family to rely on. People will always fall through the cracks, and there should always be assistance available for those people. But if families could afford to take care sick loved ones without going bankrupt, we'd have a MUCH stronger society with much less stress. 

Until we build that society... we have to take our responsibility to each other very seriously. We need to make choices that don't cause other people to get sick. We need to learn to love each other again. Every person has value. Every person deserves to live. It can be as simple as choosing to stop smoking in public. Choosing to stop using synthetic fragrances. Choose to avoid plastic as much as possible. Choose to reduce stress on others when possible. Choose peace over conflict when possible. Choose understanding over being right. Choose to stop feeding sugar to each other. Choose to stop using unhealthy oils in foods. Choose to cook at home more. Choose to eat dinner together. Choose to create more opportunities to rest and relax. Choose to find time to worship and foster faith together. Choose to be a community. Choose to care about each other. 

Am I being idealistic? Well, someone needs to be.. because practical solutions haven't been working. 

Afterall... is the fact that people with chronic illnesses struggle to live in this society their own fault for getting sick in the first place, or is it a society problem that we can't offer them a place in the world? 

We need to stop people with chronic illnesses from thinking suicide is their only option. 

The value of human life is not in the ability to earn money. 

Eivor - In My Shoes

It can take a long, long time

To find a reason and a rhyme

One minute you're dancing, wild and free

Next thing you know, you can hardly move your feet

Won't you, won't you wait for me?

I'm almost there, have faith in me

You say you know what I should do

But you have never walked a mile

In my shoes

I keep trudging up the hill

It feels like I'm standing still (standing still)

Pouring rain soaks to the bone

I shield my eyes and lean into the bitter cold

Won't you, won't you wait for me?

I'm almost there, have faith in me (faith in me)

You say you know what I should do

But you have never walked a mile (walked a mile, walked a mile)

In my shoes

The Covid-19 Pandemic and Me and You

You might think that the Covid-19 pandemic would have led me to writing a blog about it sooner than this. I am finally feeling like I'm able to articulate my experience, concerns, and hopes. I have been working on this blog for several days. I have so much to say, but when I sit down at my computer and choose between working on this blog and playing a relaxing video game, the game keeps winning. No, not out of laziness and procrastination, but because this topic is stressing me out too much that it's not healthy. I finally trudged through it and found it helpful to not only organize my thoughts through a blog, but also to understand all my anxiety better by communicating it.

My experience has probably been different than what most people have experienced. My reality is that I've had it easy - very easy. I haven't had to worry about money, eviction, work, food, toilet paper, or anything essential to living. For this I am very grateful. I don't care to share my personal living details on this blog, but I can share more about where I live.

I am living in North Dakota, which has been one of the best states to live in during the pandemic due to being a rural state with a low population. We didn't need to go into a full lock-down and contact tracing has been our specialty. Our governor only closed certain businesses with high contact, such as movie theaters and salons. Most retailers were able to stay open. Online shopping, deliveries, and curbside pick up have been popular. The stores I buy my groceries at required their employees to wear masks, and they have been sanitizing carts and surfaces constantly. I have been able to stay home from work, and when I've had to go out to get food I've been able to get what I need as safely as possible. Thankfully I already had a stockpile of meat in my deep freezer before the pandemic started. My husband has been able to work and take classes entirely online, and there has been no concern about him interacting with people and bringing the virus home. The only income we've lost is mine, which is manageable for us since I only worked very part time.

Just because my experience has been easy doesn't mean it hasn't affected me. It has been very difficult to process my anxiety because the majority of my anxiety was not conscious, just irrational and reactionary anxiety, but a good portion of it was rational from thinking through the situation. The anxiety didn't hit me right away. About a week and a half into quarantine I noticed I was completely drained (on top of chronic fatigue), I broke out into hives, my sleep was very low quality with vivid stress dreams, my digestion was awful and at times hard to manage, and I felt extremely withdrawn. I may have been in social isolation from people physically, but I didn't want to engage with anyone online or over the phone. I wanted complete isolation. All news, social media, chats, etc were all too stimulating for me. In fact, I struggled with all noises, even music, radio, and TV. It wasn't a matter of fear, stupidity, or clashing opinions (that came later.) It was simply that reality was sucking my precious little energy dry and putting me into a state of constant recharging. The problem is that I wanted to stay updated on all the news, so I allowed myself to keep reading it even though I was feeling agitated by it. This anxiety fused with 1.5 weeks of strong PMS/ PMDD, which led to a few days of pain and exhaustion. I am just now coming out of that physical and emotional hurdle, finally feeling myself entering the post-anxiety stage of the pandemic. I am still socially exhausted, however, and still have little interest in interacting with people.

I have concerns about my health during this pandemic. I don't get sick with the common cold easily, but when I do catch something I get the worst version of it and it takes too long to recover. I've had too many examples of this in the past few years, especially with norovirus and "walking pneumonia." I don't want to get into details about that since that's what the rest of this blog is about, but I hope you understand that I have to protect myself and must take covid-19 seriously. I am not someone who should be taking risks. If I catch it I will be out sick for a very long time, I will get very sick, and since I have a long history of reacting strongly to most medications I've been given, I might not be able to take anything pharmaceutical to treat it. I'm being as cautious as I can be for my sake, but also for the sake of others who are like me.

I had H1N1 (Swine Flu) back in 2010. I was in my early 20's and was healthy enough to work out, work 2 physically active jobs, and hang out with friends. I have always had some health issues, but during that time nothing was holding me back except allergies (and I was taking Allegra-D every day for it) and endometriosis. I wasn't eating well back then, and I was living in a house full of black mold. Well guess what? It knocked me out very hard for 2 weeks, and it took a little while longer to feel healthy again. Very high fever (I didn't document it, but I remember seeing 103ºF for several days), extreme full body pain, extreme weakness and fatigue, lots of heart palpitations, unable to eat properly, and loads of bathroom issues. I remember questioning how it was possible to live if the symptoms continued to stay that strong. I was taking all the meds the doctors gave me and they didn't really help (if they did then imagine how much sicker I would have been without them), but apparently they were helpful for other people. I had to keep getting doctor's notes for work, because my employer's sick day policy didn't change during that pandemic. It was such an awful illness that when I finally recovered I felt like I had been to hell and back, and I was working with doctors. Well guess what? Covid-19 is worse than H1N1 because it is more contagious and causes more deaths.

The fact is that my health was never the same after I had H1N1. Doctors have suggested that it triggered my chronic fatigue, but there's no solid proof. Doctor's have also noted that I had very high levels of mycotoxins from mold in my body, also known to trigger chronic illnesses. I also have some genes that are not working in my favor, along with some family history. Nothing is certain in my case, but other people with H1N1 were studied and many people did develop chronic illnesses as the result of having H1N1. And... There is already research being done on Covid-19 leading to Chronic Fatigue/ ME.

I wouldn't wish my health challenges on anyone else. Chronic fatigue is no joke. It ruins lives. I am witnessing that most people are concerned about dying from covid-19, but one of my greatest concerns is surviving it and then being left too sick to ever function normally again. Are you successful in your full time career? Imagine never being able to perform well at work again because your body feels like sludge, you can't remember things accurately and get confused easily, you can't always find the strength to get out of bed, and doctors don't know how to help you. If that is the result of catching covid-19, would you try harder to avoid catching it and spreading it? But Covid-19 could cause problems beyond my experience too: permanent lung, kidney, nervous system, and brain damage. Any of these potential complications are too much for anyone!

Keeping in mind that this is just opinion based on my experience and perspective, this is why I'm skeptical of the idea to let covid-19 naturally spread through the population to build up herd immunity. Not only do I think it could create too much chronic illness and kill too many people until we have a treatment available for it, I also worry about the fact that we don't know if we can develop immunity to it. It seems very reckless to me to allow people to get sick with it when we may not develop long-term immunity, and it might become a new virus that circulates every year like the flu does. If we allow this virus to circulate around the world every year when we don't have any way of treating it, unlike the flu that has treatments available, are we doing too much harm to the global population? We don't know enough yet. While the lock downs do harm the economy and mental health, I think too many deaths and people with new chronic illnesses would also harm the economy and mental health. It's a balancing act, and no solution will come without harm to people. We simply need to keep people safe long enough to learn how to effectively treat patients with the virus. If this becomes a treatable virus that circulates around the world every year like the flu, then we can return to normal because it will be treatable. Right now it's not treatable.

The greatest problem with Covid-19 is the fact that we don't know how to treat it yet. All the drugs we have been testing have created too many side effects, and the drug was not better than the virus it was trying to treat. Science takes time! We can't rush the process of learning and studying, sorry. People are dying on ventilators. We do know that people are improving on vitamin C IVs, but is that enough for severe cases? Can we make enough vitamin C IVs? A few years ago there was a shortage. So what is the option to combat a deadly virus we can't treat? Try to prevent it from spreading. We know that wearing a breathable (so many are not due the fabric type used) cloth mask greatly reduces the risk that you will spread it to other people. We know that soap kills the virus, so wash your hands. Sanitizer does work if you can't wash your hands. The only sure way to avoid spreading it? No contact with other people outside of who you live with. I am in full support of shutting down the economy as much as necessary to prevent spreading this virus, because this allows essential businesses to remain open with less risk than if parts of the economy were not shutting down. Again, I know this hurts people. Every solution hurts people.

I have no hope in a vaccine. I'm not against spending the money on researching one, because I believe we have to try for every potential solution. I'm not putting any energy into hoping for one that will be effective, however, because I look at history. We haven't been able to develop an effective vaccine for other corona viruses. SARS did not get a vaccine before it died out. Covid-19 is mutating too quickly, how can we keep up? We struggle too much with guessing the flu strains every year, how can we guess covid strains when we know a lot less about it? If a vaccine ever is successful, it won't be any time soon, and it might come with complications. So what other solutions are available? Lockdowns or partial shut downs are still the best defense we have. Every solution that involves returning to the public is all based on theory that we don't have enough information to prove yet.

On the vaccine point, let me go back to the topic of herd immunity in order to drive this point home, because I believe this is the most important thing for people to understand. If the only way to control the virus is to develop herd immunity, then there are only two ways to do that: naturally or by vaccine. Rather than put this in my own words, let me quote this article from Johns Hopkins University:

What will it take to achieve herd immunity with SARS-CoV-2?

As the numbers above demonstrate, herd immunity is still a long way away. But in the long run, as with any other infection, there are two ways to achieve herd immunity: A large proportion of the population either gets infected or gets a protective vaccine. Based on early estimates of this virus's infectiousness, we will likely need at least 70% of the population to be immune to have herd protection. There are a few ways that might be achieved.

• In the worst case—for example, if we do not perform physical distancing or enact other measures to slow the spread of SARS-CoV-2—the virus can infect this many people in a matter of a few months. This would overwhelm our hospitals and lead to high death rates.
• In the best case, we maintain current levels of infection—or even reduce these levels—until a vaccine becomes available. This will take concerted effort on the part of the entire population, with some level of continued physical distancing for an extended period, likely a year or longer, before a highly effective vaccine can be developed, tested, mass produced, and administered.
• The most likely case is somewhere in the middle, where infection rates rise and fall over time. We may relax social distancing measures when numbers of infections fall, and then we may need to reimplement these measures as numbers increase again. Prolonged effort will be required to prevent major outbreaks until a vaccine is developed. Even then, SARS-CoV-2 could still infect children before they can be vaccinated or adults after their immunity wanes. But it is unlikely in the long term to have the explosive spread that we are seeing right now because we hope that much of the population will be immune in the future.

There will always be problems with the solutions. There is no perfect answer, all we can do is manage. But I do think it's worth explaining personal problems I have with the solutions I'm advocating for. I have Multiple Chemical Sensitivities, so when I breathe in fragrance and cleaners I "react." This means my body gives me lots of symptoms in response to something it didn't like in air I breathed: headache, sudden major fatigue, widespread muscle pain, heartburn, swollen tongue and throat, brainfog and stuttering, blurred vision and/or vertigo, digestive complaints, and more. I am more mild than most with MCS, but I am still impacted. So imagine having this condition and learning safe places to go in public over the years, but then suddenly every business that used to be fairly safe because they didn't use fragrances are now using harsh cleaners and fragranced hand sanitizer. Suddenly, there is no safe place to go because everyone is covered in very smelly hand sanitizer that triggers health problems. They are protecting me from the virus, but they are triggering health problems. This is a massive problem, because many types of people with other conditions are triggered by cleaners and fragrances too.

What helps so much is the fact that I now get to wear my filtered face mask in public without scaring other people. Before Covid-19, if I wore my mask to protect myself from fragrances people usually assumed I was sick and they avoided me. I wasn't sick, I just wanted to avoid getting sick. The mask filters out at least 50% of fragrances. It helps a little. It worked out that people avoided me though, because even if the filter was protecting me from breathing in the fragrances, they could still irritate my eyes and ears. The more distance between me and fragrances the better. I didn't like being the weird repulsive one, though. That didn't feel good and made me feel like some sort of monster.

The solution to these problems would be using fragrance-free hand sanitizer and soap. I can personally tolerate some essential oils, but not citrus oils. For my sake it would be fine if you used a natural brand like Dr. Bronner's Peppermint hand sanitizer. I do best with fragrance-free, but with low exposure to certain essential oils I am fine. For so many people with MCS, however, it's not fine, essential oils are just as damaging as synthetic fragrances. Essential oils do produce VOCs that trigger the reactions, and many people are much more sensitive than I am and will react to essential oils as if they're artificial fragrances. Just keep this in mind. If you have the option of using a fragrance free sanitizer, know it's by far the best choice for everyone on the planet.

Clean with non-chlorine bleach, which is just a concentrated form of hydrogen peroxide. It has been approved by the CDC to kill covid-19. (I linked to a news article about this, not the CDC's website, because the information pages from the CDC are actually very convoluted and it's difficult to find the straight answer.) It has no odor at all, and it's not full of cleaning chemicals that harm people's lungs. How stupid is it that people are being told to clean with synthetic harsh cleaners during a pandemic with a virus that damages our lungs, when they are known to damage the lungs?

Back to the issue of wearing masks in public. Keep in mind that there are people who are unable to wear masks because they have a condition that worsens when their air intake is limited. People who can wear masks should wear masks because they prevent you from spreading the virus to other people. Also, wear them for the people who are unable to wear masks. The more people wearing masks, the less it will spread. This is very much like how herd immunity works - a vast majority of people need to be immune to protect the population from the disease.


I would now like to go over my concerns about how lay people (citizens) are reacting to covid-19. Each of these points makes the exact same point, but I approach the point from different angles.

1. We don't know enough about the virus for non-experts to make demands about how other people should react. I understand why people want to develop strong opinions, but the fact of the matter is that we just don't know enough about it to form such strong opinions. Physical distancing, quarantine, and contact tracing have been useful. In hindsight we could see we over reacted, but we might also see that we didn't react quickly or strong enough. We must learn and adapt as we go, there is no choice. Preventing the spread of a virus we don't know much about and we don't know how to treat is prudent and we must make decisions based on current information. Since we don't know much about it, but we do know it's killing people and possibly causing permanent health problems in recovered people, we really have to listen to the experts who know the most about pandemics. We need to be united if we're going to get past this. We can't have some people obeying a lock down while others think it doesn't apply to them - we all need to unite under a plan of action for it to be effective. I don't care if you don't trust medical experts (you know I've had plenty of trust issues myself). We all need to obey the plan of action for it to have a chance of working, no one is exempt. The alternative is anarchy, which isn't organized enough to protect lives during a pandemic. 

2. Misinformation is spreading like wildfire, and people who are spreading the misinformation are extremely stubborn about it. Like I said in my last point, you're entitled to your opinion. That doesn't mean it's factual or up-to-date with current information. That doesn't mean your opinion is helpful. If you cannot back up your opinion with scientific facts and theories, statistics, or proven solutions then it's probably best not to post it on social media. If your opinion is politically driven, not science driven, then it's not helpful. If your opinion is only about how to help yourself, not your whole community, then it's not helpful. Spreading misinformation gives people a false sense of security, creates anxiety, causes people to make potentially bad decisions, and makes it so much harder for our experts to lead us. What you post on social media does influence people, and if you're influencing people to ignore our leader's efforts then you are creating anarchy. If people are not listening to and obeying our medical experts and scientists then we will not be united. Unity will protect lives and our economy. Unity now will mean we can safely reopen the country sooner.

I am, however, seeing that it's helpful to share facts. Facts often come with interpretation (this blog post is an example.) Interpretation can easily turn into misinformation full of logical fallacies. Just think about what you're saying, or at least make it clear that you're only offering interpretation that could be wrong. But people need to be exposed to facts in order to be educated, up-to-date, and less anxious. Facts, not opinions, will help us get through this pandemic.

3. You don't know other people's situations, and so we need empathy to guide us. A small business owner might be begging to reopen businesses so that their small business doesn't go bankrupt and permanently close, because they were unable to secure a small business loan before the funding ran out. That person isn't wrong to be worried. A mother and father might be begging to reopen schools because they're both essential workers who cannot get time off work to home school their children. These parents are not wrong to struggle. An immunocompromised person might be begging their governor to extend a lock down because they cannot trust people to not spread the virus. This person isn't wrong to fear for their life. A healthcare worker might be begging people to stay home because they can't keep up with all the patients in their hospital. This person isn't wrong to be anxious about their ability to treat everyone who needs treatment. People are not wrong to be in their situations, and what they need to make their situation ideal might be the opposite of what someone else needs to make their situation ideal. We have no choice but to compromise and be united under a plan that protects the most people. My opinion is that health and lives should be a priority over the economy, but I do think we need to protect the economy as much as possible so that poor quality of life doesn't lead to suicide, homelessness, hunger, and other poor health issues. This is extremely tricky. I don't have the answers, so I'm going to obey our science experts who are leading us through this. I have been very happy with North Dakota's leadership because we were able to keep most of the economy open while doing as much as we could to prevent the spread of covid-19. Yes, people were financially hurt, but there is no solution that won't involve people being hurt.






Now I want to address specific common comments I'm seeing on social media, the comments are copy-and-pasted in red quotes:


"Covid Deaths are Inflated"
"   Wording is very important. Not all of those deaths were caused by Covid. The health department and Burgum himself have announced quite a few as “dying with Covid” not “dying from Covid”.   "

"   dying with means you died from something else and you just tested positive for Covid. That should not count as a Covid death.   "

"   So 4 more have died you cannot assume it the virus! This is BS all older people, maybe it was their time. Every time you do this and count it as virus, we get closer to mandatory vaccination! I want to see real numbers! not everyone passed because of covid!   "

"   It's not deaths because of covid, it's deaths with covid folks, if you were dying from kidney failure, contract the disease and then die... Because if your kidney failure, you get added to the covid death total, covid might be speeding things up but it's not the cause if death, the news needs to do a better job of clarifying this, but facts don't make good news stories.....fear does  "

This infuriates me! This idea is that people with underlying conditions are going to die without covid anyway, so therefore we shouldn't count their deaths as from covid-19 because it inflates the numbers and creates fear mongering. I'm screaming "WTF!?" First of all, these people have no idea how medical coding works, and so their point about distinguishing "dying with covid" and "dying from covid" doesn't actually apply to medical codes. Primary cause of death will always be recorded as what caused the death. If a cancer patient dies from the flu, the primary cause of death was the flu since they would have lived longer with cancer if the flu didn't kill them. If someone with a flesh eating bacteria that was slowly eating them to death was struck and killed by lightning, lightning is the primary cause of death. Second, they're saying that a person with underlying conditions are not worth saving? They're saying that a person with underlying conditions should die? Having an underlying chronic illness doesn't mean that person will die soon. Many, if not most (need to look up the statistics depending on the type of chronic illness), people with chronic illnesses live full lives until old age. If they have covid-19 at their time of death, it was very unlikely they were going to die then without contracting covid-19. If a person's underlying condition is old age, that doesn't mean they're going to die anytime soon. A 90 year old person could still have 10 or more good years left to live. Who are you to decide? Stop treating old age as if it implies a low quality of life not worth living. If a person dies with covid-19 then it needs to be counted as a covid-19 death. This isn't fear mongering, it's data, statistics, and fact. This is a great example of how spreading your uninformed opinion causes harm. It's trying to teach people to value other people less!



"Stay At Home If You're Afraid"
"   Enjoy Freedom, Use common sense, If you don’t feel your ready STAY HOME... But some of us don’t have your feelings   "

"   This crap needs to stop. If your sick stay home. If your weak, stay home. Let the rest of us go to work!!   "

On the surface this way of thinking seems logical. If you're afraid to go out into the world, then stay at home and don't participate in the world. Until you really think about how this "solution" applies to reality. Unless these stay-at-home people can work full-time with benefits online from home, how do they manage their finances when the rest of the world has gone back to "normal"? What if they are an essential employee and their job does not make them feel safe because they have to work with customers who are not taking the pandemic seriously? It isn't exactly possible to keep participating in a world that returns to normal, but you don't return to normal. The stay-at-home people suddenly become like disabled people, who are ignored and forgotten since the rest of the world only looks at the "normal" they see around them.

I can paint you a picture of what this looks like. I have been avoiding most public places for about 7 years now because of how sick I can become in public. I have had to "stay home" because if I go into places like Target or Walmart I'll develop a nasty flare from reacting to all the fragrances, dirty air, artificial lights, and stimuli. I had to choose a job where I could be active enough to keep my blood pressure high enough to perform well, while limiting my exposure to artificial fragrances and dirty air, that also would work with my limited energy and allow me to work shorter shifts. I can't just go work any job like most people, I'm too disabled. When the rest of the world won't adjust its "normal" to be safe for most people, people like myself have to adjust our lives to stay healthy, which means being very cut-off from "normal." I understand that people with my illnesses are in too great of a minority to change the "normal" without years and years of science, advocacy, and government care. People who want to stay home to stay safe during this Covid-19 pandemic, however, may not be a minority, and if they are they are still a very large group of people. This many people staying at home will mean the economy won't just go back to normal - businesses will still have to work with many at-home customers.





Thank you for reading my long blog post. I feel the need to offer my perspective. Even if you do not agree with my concerns, I feel it is very important to understand each other. If I don't say what my concerns are, how can you understand me? I am actively reading other perspectives, which is what influenced me to write this post. Please feel free to comment with your blogs, or even share articles to help you express your perspective. I want to participate in a constructive educational conversation. I hope to contribute to a culture of critical, rational thinking that can create ideas to help manage this pandemic with the least sacrifices.

Yearly Reflections

Hello world, my old friend. It's nice to think of you again.

Today is a day in which caffeine is only increasing my heart rate and blood pressure a little, not giving me energy. Well, perhaps enough energy to type this, but certainly not enough to move. I am one giant brick. A brick with itchy hives on my back. AGAIN. Round 4 of hives. If I had to work today I am not sure if I would find the strength to manage. All I have to do today is go to Fed Ex to make a quick drop-off. It's a 3 minute drive from my house. I'm having a difficult time even imaging myself making this trip. I have learned that when I am capable of imaging myself doing a task, then it means I have enough energy to handle it at some level.

Today is News Years Eve, the ultimate day of reflection and looking forward to new beginnings. I've been really moody for a few months - like out of control at times - so I partly want to do this post in defiance of my chronic bad mood.

So I'll be blunt.

2019 did not offer any changes to advance my healing process. That's about it. I'm the same as I have been. Exhausted, in occasional pain that ranges from mild to severe, not sleeping well to sleeping too deeply, weight has stayed between 10-20 pounds higher than I'd like, and nothing I've tried has improved me. 2019 has been a year of management.

So instead, I'll go over some of the highlights for me this year:

- I bought an Instant Pot. I HIGHLY recommend it! It has been saving time and energy, and I'm making better quality foods because it does so much of the work for me.

- I got to go to a Weird Al concert that took place 5 minutes away from my house. That was super fun - and he walked right in front of me! As a friend pointed out, this is my lame claim to fame now. Ha! This was one of those "worth getting sick" experiences, and I'm only remembering how much fun I had, not how I felt.

- My husband has begun grad school to get his doctorate, which has required him to live 3 hours a way for a few days a week. It's nothing against him, but it has given me more quiet alone time at home to be fully at rest. It's been very helpful in those moments, but also has been more stressful when he is home because the chores have increased. It has been a good experiment for me. I need to learn how to rest better and exercise my limited energy better, and I have better clarity on that now.

- I took care of a new garden this summer. My husband and father-in-law built it. Unfortunately, the weather this year has been difficult. Summer never really came before winter hit early. If I consider the weather, the garden was a success. I grew herbs and veggies and was able to eat them. Not everything grew or produced, but some things did. The energy required was a little more than I had, so it meant sacrificing doing other chores like loading the dishwasher. But I enjoyed it more!

- I have been able to develop deeper friendships with a couple of my friends, and I have people I can talk to every day about anything now. I struggle a lot with friends in person, simply because of the energy it takes. I almost always feel like I'm in a competition with everyone I talk to in person, a competition of give and take of energy. But talking online to people who are similar to me in terms of health struggles is awesome. Our energy can go into only typing to each other and reading responses on our own time. It's the lowest energy required, and it's allowing me to develop the strongest friendships I've had in many years. I'm really grateful for these people!

- The more I reflect on this year, the more I realize that this year has been about supporting my husband instead of doing much for myself. He has been taking on a lot of new challenges and succeeding. I do not believe there is any shame in women thriving in their roles of being a wife and homemaker over any type of job or career. We have moved towards a society in which women are judged on success based on their careers and how much money they make. I call BS. We should be judged on how much love we put out into the world, and that doesn't have to have anything do with money. I am valuable, and I have worked hard to understand that this year.



And so, world, I will enter the new decade in several hours. Do I need a fresh start? A new beginning? Oh yes, for sure - I think? But I won't get it, and that is okay. Next year will be a good year if I continue to manage as I have this year, and I don't foresee any major changes for me coming up this year. But I do have hope for the next decade that I will learn how to do more than manage. Perhaps I'll find the energy to finish writing my book and publish it. Perhaps I'll find a way to make more money without worsening my health. Perhaps I'll find a breakthrough with my health and get to live life with more energy again. Perhaps I'll get to experience major life changes that will give me new challenges that fit my energy level. It is very very likely that we will move. Maybe to a new city or state, maybe not. But the time to live in a place of our own is coming soon. Whatever this next year and decade have in store for me are worth looking forward to, even if it's more of the same for a while!

And now I might see if I can get a ride to Fed Ex. Ha!



But first, 10 year challenge:

2009:

Happy, full of adventure and wonder, loved to explore!

2019:

Still love to explore and enjoy being myself, but with a stoic spirit and relying on someone else to help me get around. I cut my bangs back to how they were in 2009, haha. Simplicity is easier.

Processing Depression Caused by Events

It's so easy to feel defeated. I've had a rough couple of weeks, and these experiences have led me to feel really depressed.

I have had several friends with severe medical emergencies and I had reason to worry for their lives. All at the same time. If one of these friends of mine does not survive it will be the second friend I will have lost to cancer. Another friend has been so sick that she became suicidal, and at times resistant to help. Of course I fought hard to help her fight for her life, but deep inside I couldn't help but wonder if I could fight if I was in her situation. Another friend ended up on life support after a car accident - that has been devastating. I also know 2 people who have had heart attacks recently. It's... overwhelming, to say the least.

And so, I decided to watch "Call Me Francis" / "Llamame Francisco" this week. I needed a true story about hardship to help me gain perspective. I also genuinely wanted to learn more about Pope Francis and Argentina. The mini-series does not educate or explain anything. It assumes you understand Argentine history fully. I had to talk to an Argentine friend of mine and do a lot of reading on my own to understand the circumstances in the story. Hours of research for 4 hours of show, but it was very enlightening. Learning about the Argentine 70's crisis with the military coup and the dictatorship was very interesting, but I don't know if I was in the right state of mind to learn about it objectively. Between the show and my research, I couldn't help but cry a lot over the kidnapping of pregnant mothers and the illegal adoption of their children. I cried when they showed the military throwing family members out of planes. Watching a story about how Padre Jorge (Pope Francis now) was actively involved in negotiating how the church helped these people was very enlightening. In the end, I learned that Argentina, while not recovered from these horrible events in the 70's, loves its people. They struggle with a terrible economy and a very high poverty rate right now, but they take care of themselves as best they can, because they actually care about offering the best quality of life that they can to their people. But I cannot help but feel shaken from learning about their recent atrocities. (No, don't tell me about other atrocities in world history to go learn about, I don't have the heart for it right now.)

I'm finding it is actually really difficult for me to read or learn about great people that live their lives well and accomplish a lot with their lives. Of course I'm extremely grateful to Pope Francis and admire him very much. (Don't let that statement get religious political - I don't care about your arguments about his church leadership right now. I'm referring to how he navigated the dire circumstances he lived through.)

But as I learn about these people I keep asking myself why I haven't figured out how to do great things with my life. Why are my years being wasted on nursing my health and entertaining myself in the process? Why are my talents and skills not getting developed so I can use them to help people in the world? A major reason is my chronic fatigue, but another major reason is my personality. I've never wanted to dedicate much time to developing skills beyond what was helpful enough to me to get tasks done, when it always felt more important to me to dedicate time to understanding people and morality. I'm one of those people who sits back and observes and reflects for years too long, and by the time I am ready to act, I find the next passion to ponder on for years too long. What do I do with all these thoughts? But how long have I really had this chronic fatigue? I might not have recognized it when I was younger because I was used to being that way, plus I'm introverted. When it caused me to be totally bedridden then I took notice. If not for the chronic fatigue, would I have done more action in my life to be more accomplished?

I'm feeling insecure. I feel like I should be doing great things despite my disability. I want to leave my mark on the world. But sometimes I can't see beyond my friends who are suffering so much. Sometimes I can't see beyond how terrible people have been throughout human history, and those who did great things for humanity make me feel like I'm not contributing to making the world better the way I should be. What is my purpose? I can't wait until I heal - what if I never do? What can I do in my current condition that won't overtax me and make me worse? I'm finding that what I am doing is overtaxing me and making me worse: I'm caring too much for people. I invest my energies into being their friends. It's not their fault, there is nothing to blame. It's just who I am. I just care. Too much. But if I make myself go numb to help me emotionally then I'll lose all sight of my purpose in life.

The USA's healthcare is a nearly complete failure for most of those with chronic illnesses. It leads people to suicide. It's way too expensive, doctors are too overworked and can't dedicate time to patients, doctors that are not trained in the illnesses try to poorly treat or dismiss us... it's a nightmare. And I'm one of those depressed chronically ill people who is feeling lost in the system. I am way better off than many people - so many people are substantially way worse than me. My disability is in the middle of the severity spectrum - I'm moderate. It significantly impacts my life, but hasn't completely stopped it. Too many people live in the severe category, in which their disability has completely prevented them from doing anything more than just staying alive minute by minute. I have the same struggles with the system, but it's not as dire for me. So trying to convince suicidal friends to use this system, because it's the only system there is, feels like I'm encouraging them to not get properly cared for so they can feel even more hopeless. It's a nightmare.

And so I have to keep reminding myself that saving the world is not my responsibility. I can't let world problems crush my spirit. At best, I need to keep my focus on my friends that I can do something for, even if it's just moral support. Being their friends, even though these major health issues, has helped me as much I hope I help them. Is it a waste of my energy? I don't think so. I might be full of grief and feeling depressed, but my heart is full of love because of them. I would feel depressed if I didn't have friends, or had friends who were healthy and so we can't relate to each other.

Privilage and (Dis)Ability

This is a follow up to my last post.

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.a ability, to go solve those problems.

Because that's the definition of privilege: Ability.

Do you remember my post on "Ableism"? It's just another term for privilege.

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:

Myalgic Encephalomyelitis (ME)
Millions Missing

Postural Orthostatic Tachycardia Syndrome (POTS)
Dysautonomia International

Endometriosis
Endometriosis Foundation of America

Multiple Chemical Sensitivities
Chemical Sensitivity Foundation 

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.

The Problems of Privilage

Do you know what's hard for me to hear? That because I'm a privileged white USA citizen that my difficulties cannot compare to what impoverished people in other countries must face every day.

The statement is not fair. We are all born into different circumstances. Just because I was born into a country with wealth does not mean that I automatically get to take advantage of that wealth to make my life better. Wealth doesn't solve every problem, and it can actually create new problems. Life isn't about having wealth. Wealth ensures we have access to shelter and food, both of which are necessary to living life, but it doesn't ensure that we have health, love, joy, and purpose in life.

I deeply respect every human life. I want for every person ever born to have the right to a full life of health and love. My heart breaks for those who are born into a circumstance where they have no shelter or food, and life will never become easier for them. Does my situation compare to theirs? No. It does not. I say this while drinking hot organic tea, typing on a computer that I built myself because I'm educated, and enjoying the benefits of a new furnace heating my house.

That said, is it fair to say my problems are not valid? Should I eat all the food on my plate just because there are starving children in China? I'm so tired of the faulty logic about handling difficulties that is so prevalent. Just because I'm not as bad off as other people does not mean I can't experience difficulties that greatly impact my quality of life. Just because a child in Argentina is starving doesn't mean my problems don't cause me severe pain. If I could save that starving child's life I would do it in a heart beat! But I'll still be in crippling pain. I want everyone in the world who needs help living to be helped. What if that means I need help too?

Is the life of a starving child more important than an adult's life in the USA? You would assume the adult in the USA takes second priority because the adult should have access to health care and government assistance. That's often not the case. Health care isn't affordable, and going to a doctor could bankrupt the whole family and cause that family go to homeless. The adult in the USA might be living in a government subsidized apartment that is full of mold that is quickly deteriorating the health of that person, destroying their ability to live their life. What if the apartment this adult is living in creates worse quality of life than the homeless child has? All life should be treated as equal, right? So who should be the priority to help?

This is complicated. And I'm very angry about this topic.

When I'm told that there are people in third world countries with needs greater than mine, I feel invalidated. I feel unheard. I feel uncared for. I feel like I'm being told that you would rather feel sorry for people you will never meet, and likely will never send 1 penny to. If their needs are so important that you invalidate my needs, then why aren't you there helping them? I'm here right now. Help me. Help who you actually have access to and can help.

Most people do nothing, but are quick to try to verbally diminish problems.

So I challenge you:

When you meet someone in the USA with clothes on, a roof over their head, and food in their bellies who tell you that they are struggling with someone serious, take them seriously. Don't automatically dismiss them because someone else in the world is obviously suffering more. The more you dismiss people because you think they're not as bad off as others, the more we tear down a culture of support, love, and community. Life depends on support, love, and community. The more you dismiss people's problems, the more you help create new problems for the community you live in. Stop thinking globally when you can't even help on a global scale. Start thinking locally. How can you help reduce the problems in your own community?

If you're able to use your first world country privilege to travel to another country and help their starving children, then do that. The world needs you to help. But as for the rest of us? Our own local communities have staving children and adults too. We also have people who are not starving and have roofs over their heads, but are in serious need help. Don't criticize problems, just help where you can. Please. Thank you.

Day by day by day by day...

Oh to be me.

What is a like to be a 31 year old woman with chronic illness? Here are some snippets from my life lately:

Today I went to my local food co-op because the fridge was getting to be too empty. I felt tired, worn down, but thought I could handle a 40 minute round trip out of the house. I get the store, start shopping, the next thing I know I can't stand up in one spot without starting to see the blackness forming on the peripherals of my vision. My legs started to shake and tingle. I decided there was no sense in sitting down on the floor of the store, so I decided to just keep walking. That worked. I learned I could make it as long as I kept moving, so I couldn't stop to look at products, just had to grab as I walked by. I made about 3 laps around the store to shop this way. And guess what? They were completely out of the few things I needed most! A normal person might shrug it off and go to a different store before heading home. Me? My energy was spent. Had to go home without what I needed.

...That's a big reason why I shop online as much as I do. Except that I never received one of 3 boxes from my Vitacost order. I need to sort that out, but do I really have to put the energy into it? Seriously? Why can't it just sort itself out like magic and let me just sit here zoning out?

The cashier asked me how I was doing. I bluntly, with no tact or thought, said, "Not good, I didn't sleep last night." She asked if I was stressed and I said, "No, I just have a chronic illness and it decided to flare last night." She didn't have much else to say to me after that. lol. Poor cashier.

Why didn't I sleep last night? Oh, because PMS decided to start, and I was in full bitch mode. At 2 am. I wasn't upset about anything, nothing to be angry at. No person was irritating me. My mood just decided to be as aggressive and irritable as possible, which kept me up, tossing and turning. Then when I was sleeping here and there my dreams were very aggressive. I dreamed about my friend who attempted to commit suicide several months ago, which woke me up because I felt stressed out about it. I never really recovered from her telling me she failed her attempt.

I woke up to throbbing shoulder muscles, shooting and pins and needles pains in my legs, and adrenaline pounding through me.

And I realized how this is pretty much how every day goes for me, but it's so much worse during the winter. I'm never really sure if I'll sleep. I'm never really sure if I'll feel decently. I'm never really sure if I'll have the energy to be able to hold a conversation. I'm never really sure if my depression will let me actually care about what someone is telling me. I just have to figure out what I need to do with myself, moment by moment.

So what's the problem? Well I found a ton of mold growing on my new windows, for starters. Winter condensation that freezes when it's below zero outside causes it.  The outside temperature went from -6 degrees to 47 degrees within a day, and we all know how the barometric pressure messes me up. We did just shampoo the downstairs carpets with Biokleen shampoo, which I didn't react to while doing it, but later got a mild version the hives around my eyes that citrus essential oils tends to give me. Plus we disturbed all that dirt in the house. I also went to church. Perfume! And then my monthly cycle just hit the worst phase... and I've been spotting, so who knows, maybe I'm anemic or something. I seem to be very prone to Blood Deficiency.

You see, I just can't win, especially not in the winter. When I feel decently it's purely by chance.



So...

If I spent my entire day playing video games on my phone, so what? At least I'm engaging with people there. At least I feel like I'm accomplishing something, even if progress in that game doesn't affect my real life in any way. At least I'm mentally stimulated rather than just rotting away watching TV. I can't just watch TV, I need to be engaged with something, and video games work perfectly when I'm too tired to do anything else. I'm often pretty bad at the game because I don't have the mental energy to think through what I'm doing, but it is what it is.

I will work at my job, do chores, and contribute to society when I'm capable. I have days when I'm just not capable. A lot of days. I'm not lazy. It's not an addiction to video games. I just can't function normally. Believe me, I'd much rather be raising children, own my own business, going out with friends, working towards buying our own house. I have to deal with these desires every day. If I were lazy, I wouldn't want to be living my life fully. I'd be happy to just settle in to a fun addiction rather than working on progressing in life.

So let me leave you with this article about environmental toxicants causing depression, pain, and chronic fatigue.

Ableism

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.

Thanks for listening. :) 

Dear Christians,

Dear Christians,

Thank you for trying to care and spread love to all of God's creation, even those with chronic illnesses like myself.

But... I have something to say to you.

1. A lack of faith isn't why I suffer.
Why be condescending towards me? Is your faith strong than mine just because you don't have a chronic illness?

2. God doesn't necessarily want me to be "healed." 
Do you know God's will for me? Am I pre-destined to be healthy?

3.  Suffering doesn't make me a bad Christian. 
Living with depression and suffering from disabilities is not the same as living in sin. I don't need to be saved from the burden of physical limitations to reach salvation and find joy in God.

4. Do I need to be healthy to fulfil my life's purpose?

Are only the most physically and mentally qualified people allowed to do God's will, as if we're hired to do a job with prerequisites?

5. I'm still waiting for you to stop telling me what to do, how to feel, how to act, and what to be. I'm praying for you to seek to understand, not to be understood. All you have to do is let Jesus live through you, you don't need to be a dictator on how to have faith. To quote Bono, "Stop helping God across the road like a little old lady."

6. Laying your hand on me and praying for me in public is not always the best way to spread the Gospel. God blesses those who pray in silence when no one is watching. My faith is deeply personal, and I don't need you to put me on display. I respect and understand the need for a faith community, but while I'm on the clock at my job is not the time to prove your faith for me by forcing me into a few minutes of spoken prayer.

7. Faith is not an emotion. Let me say that again. Faith is not an emotion. If the Christian pop song on K-love doesn't melt my heart, make me stop what I'm doing to put my hands up in the air, and feel God's love it doesn't mean I'm lacking faith. I'm not charismatic in my faith. I don't need God to give me emotional highs to know He's present. I'm not falling away from God and into sin when I feel sad, depressed, lonely, or angry. I'm sorry if I don't look like I'm Christian just because this very new evangelical culture (as in it's not as old as the Church or the Bible) doesn't work for me, but I'm not trying to prove anything to you. I only have to prove my faith to God, and I can do that in silence where no one can see while I'm feeling depressed and angry. I don't want to be on display, fake or force emotions, or even feel guilty for not expressing my faith through emotion. I do not feel guilty for not being charismatic. But you might notice my faith through how I treat and care for people.

8. Consider that my suffering is actually a blessing to my soul, and that perhaps it's helping me serve God better. Is there not something to be learned from any experience? Should we not always grow as people? Can I not be formed into a strong faithful person through difficult times?

9. Stop telling me I'm not doing enough. You think I have to make an appointment with some stranger in some office building to have them pray over me for me to be healed? You think I have to fly to another state to meet with some special spiritual healer over 12 days in order to heal? You think my church community isn't good enough if they're letting me suffer? You think receiving the Sacrament of Anointing of the Sick is not effective and your special spiritual leader is the only one who can help? Have a little faith in me and my faith community.

10. I see that you're trying to make the world fit your worldview that you think encompasses God's will for all of his creation.Please never stop learning, updating your worldview, and seeking new understanding. Stick to your values and morals - you need them! But allow yourself to empathize with people. Sometimes life isn't as simple as following rules that fit your worldview.

11. Consider that I don't have the energy to have deep conversation about which denomination I am every time you see me.Consider that you might be driving me away from the Christian culture due to how exhausting it is to listen to you tell me how my denomination is wrong, my faith is incomplete, and I need to change my personality to fit how people with faith should be.


Thank you for listening. Have a conversation, in which we take turns listening to each other without giving each other orders, with me when I can handle it. Ask for a time when it won't drain me and make me suffer more. Just stop telling me I'm wrong because I'm sick. I'm too tired to keep being beaten down by your lofty standards for Christians. Stop bragging about your faith being why your life is so good and mine has problems.

Sincerely,

A Concerned Christian


Note:
Each of these points are referring to specific encounters with multiple, various people. Most of them were complete strangers. These are not arbitrary references. I've debated on writing this publicly for over a year now, and it's time that I released the pressure and finally just express myself. I am legitimately concerned about how a couple (out of several) Christian cultures is treating people with Chronic Illness, but I believe all Christians need to hear my letter.