Hello blog, my old friend. It's been a while.
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.
Sunday, November 15, 2020
Fine, I'll Talk About It
Monday, May 4, 2020
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:
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.
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.
Monday, March 9, 2020
Blood Pooling!
Do you all want to see a picture of my feet during a flare?
You're welcome.
Okay okay, I'll explain a few things.
First of all, my toe nail? I've been working on growing a new healthy one since November of 2018. First it turned black, then it slowly started to peel away, then a new nail started to grow and push the old one up. I'm letting it run its course. The old nail will fall off when the new nail has finished growing it. I have no clue what caused it - doctors have shrugged it off after a round of antibiotics didn't work. I think it's getting really close to coming off! Just in time for summer, I hope!
Yes, my toes are very purple. Yes, they feel cold as ice with deep pain in the bones. This is not unusual for me. One of the visible signs of my invisible illnesses.
Yes, my feet are pink. Blood pooling! Very common symptom of POTS. Blood pools in my feet because my nerves don't appropriately tell my leg muscles to constrict in order to keep blood circulating like it's supposed to. So instead of circulation, I collect blood in my feet. It's kind of fun to draw on my feet when they're like this because I can draw white streaks all over them.
Wearing compression socks helps a lot when I'm moving on my feet. I really like the Sockwell brand because they're made with mostly wool, and I seem to do okay with the nylon content in them because they're breathable enough.
I don't like wearing compression socks when I'm resting. They make my feet much colder.
But I do need socks on, like... all the time. My feet are always icy. I love hot foot baths or full baths. I love sunbathing my feet.
When I tried Metaprolol (beta blocker) for my POTS, it made my feet like this 24/7, but colder and more purple. It did reduce my heart rate, which felt good and reduced my heart soreness, but it also increased my fatigue and made my feet intolerable. I'm so happy that works well for many people with POTS, but it wasn't for me.
This image has been floating around on Facebook (I got it off of the Millions Missing page) and I really like it. It's missing the blood pooling text, but shows it in the legs. It's also missing chronic fatigue as a major symptom. I get all of these symptoms, except that I don't vomit or faint (well, fainting has been super rare.) I don't get the facial flushing anymore, but I did get it frequently before I started to work with my doctor. I still get rashes, but not as often anymore.
Friday, February 7, 2020
Fitness and Conditioning
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.
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.
Tuesday, February 4, 2020
Just sitting here feeling weak
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.
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.
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