ME/CFS. Multiple Chemical Sensitivity. Allergies. Fibromyalgia. Arthritis. POTS. Anxiety. Calcified Tendons. Depression. Endometriosis. And more.
I'm moving forward with my life!
Hello blog!! Yes, I moved. Yes, I have written about it. No, I have not published what I have written. That's not what I want to write about here. I'm not ready to go public about the moving experience yet.
I moved back to North Dakota 2 months ago. It wasn't possible to stay in SC because that entire situation fell apart. Although there were a few reasons why I chose to return to ND, one of the primary reasons was because I needed to know if I could reclaim my health if I let go of all stress in my life. I came here alone, meaning without my husband, and I'm living in my parent's basement. I'm being taken care of, I don't have the same level of financial stress, I removed myself from the grip of other people's tensions, and I now have the ability to be completely at peace with no intrusions on my peace. I really need to know if I can recover some of my strength in this situation.
After 3 days of Dad driving the Uhaul, we finally saw Bismarck in the evening.
So far, it's been an interesting experiment. I have had to do a lot of physical work, but I also don't know if that will ever actually change (or should change.) I had to unpack and build furniture, which took me a while. I'm also helping Dad with some projects. We needed to build a shed, and our backyard isn't flat, so it was certainly a project. I helped with what I was capable of helping with. We drove to Idaho and back to visit my family there. (Yep, within a month, Dad and I drove from SC to ND, then ND to Idaho. So, just a little less than coast-to-coast!) I've stayed really busy. And today I went into my old work place (Terry's!!!) and offered to go back to work, and now I start next Tuesday! Hurray!
Visiting a former job in Boise, ID last month
So keeping in mind that I'm staying busy and active (as much as possible with having ME/CFS and POTS), here are some positive observations:
- I was amazed at how much easier it has been to sleep since coming here, mostly. I've had a few nights of waking up from jolts of adrenaline. A few nights of feeling restless for hours before falling asleep. A few mornings of waking up with a racing heart. A few nights of insomnia. But overall, my sleep has seriously improved.
- My mind is CLEAR. The anxiety is gone. The depression is gone. The sense of dread is gone. The vibrations of fear that ruled my body are gone. My mind isn't suffocating from too many thoughts racing anymore. Whatever is right in front of me is what gets my attention, and I can focus on it.
- I'm actually starting to dream about my future, and it's enjoyable and coming to me naturally!
- I've held my last chiropractic adjustment longer than I expected, considering how crazy everything in my life was. Moving half way across the country, mourning the loss of my birds that I had to rehome, all the physical labor, you get the idea. My last chiropractor was aggressive, but she fixed issues that were probably from my childhood. I do not generally hold adjustments well or for long, but my body is acting more resilient now. That said, yesterday I finally felt sharp pain in my neck that gave me a nasty headache, but there may be more to that.
- I have had a few crashes. In the last 2 months I've had 4 days where I couldn't do anything at all. Many days where I could only work for a couple of hours, but the day wasn't a total waste. That's really not bad for me! That means I've been spending more energy and crashing less often. I have a feeling it's because my mental stress is gone. I'm not wasting energy on the stress of other people. My brain is just calm, clear, happy, and regulating ONLY my own personal energy. And I know this is true because I've had a few instances where I immediately get worse, drained, zoned out, and feeling the old hopeless void when I've had to talk to certain people.
- My immune system actually seems to be working a little faster. I caught a bug in Idaho and my symptoms developed quickly, and I stayed sick for almost 2 weeks. That's actually a sign my immune system is trying to do its job! I also ate something I was allergic to, and I got hives within an hour, not the next day. Very good!
Ok, but I've also been experiencing classic issues of mine that are not getting any better:
- No temperature regulation! I'm freezing then sweating then freezing then sweating... it's annoying...
- Raynaud's!! My body was red from heat while my fingers were totally numb for a few minutes.
- My gut caused major neck and shoulder tension that made my teeth feel extra tight. I had to wait a few days for my gut issue to calm down, and all my pain subsided and the tension released.
- I almost fainted on the toilet last night. I couldn't tolerate being upright. My heart was going to beat out of my mouth and I couldn't catch my breath. I needed to be laying down, but nature called...
- The nerve pain in my heel has been raging again. I'm sure I'm eating too much b6 because I increased how many nuts I'm eating. The solution is to cut back on b6 rich foods again, but the fiber from the nuts is really helping. There's always a problem with every food, it's annoying.
- The bloating from Endometriosis has been way too severe. Worse than normal. I'm tempted to buy maternity clothes... sigh...
- The sharp razor blade pains in my pelvis has been bothering me more than normal every day. I cannot do certain stretches without feeling intense stabbing pain next to my hip bone.
So overall, I think this is a lesson that stress levels were making my symptoms worse. The RELIEF I feel has been so healing! I had to start my life over, I had to go through hell to do this. I'll write about that at some point, but I'm enjoying these good feelings too much to revisit that trauma. I do think I'll be able to live a little more than I was before. I think one of the most important decisions I could have made was to choose my own path, alone, and distance myself from that which was heavily draining my energy daily. I was in survival mode for so many years, and it stopped working. I stopped surviving. I had to save my life. I couldn't continue living that life. I had to come home and start over. Going from feeling suicidal for years and only feeling a void in life, to feeling peace and hope and joy... just by leaving a situation that wasn't meant for me. It's incredible.
It's also just the little things... All of my time belongs to me. I don't have to live by a complicated routine anymore. I choose when to make dinner, how to cook, how to manage my chores, how to keep my space, when to rest and when to move, when to sleep, when to listen to music, when to listen to myself.... My energy belongs to me again. And I'm so looking forward to working again with this renewed vigor (I love my job!)
First, let's talk about Fitbit... No, I won't replace it since I have years of history in the app, but it's something I want everyone to understand about Fitbit, especially if you have POTS too.
Earlier I opened my app to look at my heart rate, and I saw the bpm in real time. I can also see this on my Fitbit screen, but I cannot read my screen outdoors because I have an Inspire 2... and it's impossible to read outside.
When I went to see my heart rate through the day, however, it doesn't show the 157 bpm. This is because Fitbit only shows an average of every 5 minutes, so it misses my peaks.
There's an app called Cardiogram that will show you every single BPM reading the Fitbit took. I used to use it when it was free, and it was really enlightening to see how often my heart rate spikes high. Then they started to charge a yearly subscription that was over my budget, so I stopped using it. I feel a little blind by only relying on Fitbit now, but thankfully I've been monitoring for enough years to have learned how my heart is.
And now let's talk about products I've recommended that have changed or are no longer available...
1. Starting with Vital Proteins Collagen Creamer, my favorite part of every morning, and the reason my nails have been surviving thyroid issues!
I have heavily recommended this product for years, but Vital Proteins decided to change the ingredients BEFORE changing the product description on any store front. Their own website, Amazon, Vitacost, and other stores all show the old ingredients, but they're shipping the "new and improved" product instead, which has different ingredients. They removed the silica, but also added stevia (it was good without the stevia, why add it?) Unfortunately, the new product contains Maltodextrin now, which is often made from corn (I'm allergic to corn.) I wrote Vital Proteins to ask if it's made from corn, and they said:
Thank you for reaching out to us! Our Collagen Creamers have indeed undergone a recent reformulation- this change was made to improve the mixing experience. As this is our new formulation for this product, we will no longer continue to offer the previous version. Our team is working to update the product page to reflect the new formulation. The Maltodextrin used in our product is a combination of corn and tapioca. Based on the information you shared with us we recommend to not consume the product.
Customer Care Team Nestlé Health Science U.S. - VITAL PROTEINS
How long as Nestle owned them? Here's the thing about Nestle: I think they do very evil things and I will not support them until they change their terrible habits, but when they bought Garden of Life they didn't change anything about the quality of the product as far as I could tell. I've read that they do tend to take a hands-off approach to companies they buy. So is this terrible business with their collagen creamer a problem of Nestle? Not sure.. but for the sake of having a scapegoat, I will happily blame Nestle!
So I switched to Primal Kitchen Collagen Fuel. I don't like it as well, but it's good enough. No bad ingredients, but it also doesn't say grass-fed cows... normally I'd keep looking for something grass-fed, but all the other brands that make collagen creamers add ingredients like maltodextrin to help it mix better in coffee. This is the only option on the market right now without maltodextrin. By the way, Primal Kitchen was bought by Kraft Heinz in 2018. It is what it is. It's hard to avoid these megacorporations in this world unless I live completely on food I grow myself and farmer's markets. It's more possible to do that here in South Carolina than anywhere else I've lived... but I want my collagen!
2. Dickinson's Witch Hazel Wipes, individually wrapped. These have been "out of stock" for a very long time, and they have introduced a new package with multiple sheets per package instead. I'm all for less packaging, but that defeats the purpose. These were a perfect fragrance-free option for cleaning up while traveling. I used them on my hands, face, and body. They were small and fit into my purse or pocket, so I could keep them with me. I have not yet found an alternative that's fragrance-free at a reasonable price point. I bought out the last of the other TN Dickinon's witch hazel brand individual wipes for now, so I'll look for an alternative later when I need to buy something.
3. Biokleen laundry powder... Now this one has me the most upset of all. I can't link to it because it no longer exists. I prefer powder because it significantly reduces plastic waste, it's pure soap and not mostly water, and it's easier to work with. The problem with powder is they normally require warm to hot water to work. At first, they made their laundry powder with hydrogen peroxide and enzymes, which meant it cleaned and dissolved in cold water really well. I also liked it because it contained zeolite, which binds to mold spores. It helped me decontaminate my clothes. Then they changed their formula and removed the hydrogen peroxide and enzymes. They switched to using citrus as the cleaning agent. I wasn't happy, but it's been working well enough for me. They also offered a fragrance-free version, which normally I would prefer, but I wanted the grapefruit seed oil to help break down biofilms on my clothes and that was only in the citrus version. Now they no longer make it at all.
Instead, Biokleen started to make laundry sheets. 🚩🚩🚩 Red flag alert!! Let me make something very clear: Laundry sheets are TERRIBLE in every possible way. They claim to be better for the environment because they don't use plastic packaging, but what they don't tell you is that every sheet contains plastic: polyvinyl alcohol. You're literally washing your clothes in plastic if you use these, and no, the plastic does not "magically dissolve." Read this study about how 75% of it ends up in water ways. But it's worse than that: these sheets don't work well. They don't dissolve in cold water, but most natural fibers require cold water. They end up clogging up pipes because they don't dissolve. Look... there's nothing good about laundry sheets. Fine idea for reducing plastic, but wrong execution. I'm really upset that Biokleen went this direction instead of continuing to make their enzyme-based laundry powder. I would have paid more for it if I need to, because it worked...
So I switched to Dirty Labs. It's liquid, it uses enzymes, it's fragrance-free, works great in cold water, and contains no plastic at all. Honestly, it's a great product. I really like how well it cleans. I like that it's super concentrated, so I'm not buying water. My complaint, unfortunately, is how messy it is. It's very thick and goopy, so it's slow to pour. It's hard to measure the right amount because not all of it will pour out. They made a dispenser bottle, but based on the reviews it's problematic and needs to get perfected before I spend money on it.
4. ....Oh!! It's back in stock!! I don't have to lament about how my favorite product is out of stock anymore! Lauren Brooke Cosmetiques pressed powder foundation. Yay!!!!!!! This product is very clean, and it works brilliantly. It gives my skin life and a glow, but it doesn't look heavy like foundation. It's breathable and stays in place when I sweat. It's amazing. I frequently wear it without any other make up just because it makes me look normal and healthy.
I honestly can't believe that in 10 years of owning this thing that I haven't written a post about how helpful it is for me... I think it just proves that I do A LOT and I can't really keep track of it all to write about it!
My super duper cheapo portable Far Infrared Sauna! (As opposed to the $1,000+ ones...)
I bought it for about $179 on Amazon about 10 years ago. I'm still using it. I just used it today. I told you, I'm all about buying things that last! Although I had no idea if this would when I bought it, ha!
And look, despite CRAZY inflation, it's only gone up to $219 in 10 years! Ha! They're still making it too, so I think I made a good choice:
First, let me acknowledge the elephant in the room, which was something I didn't know about at the time of purchase:
EMFs. I have no idea what kind of EMFs this sauna emits, and I recognize that they are a problem with infrared saunas in general. If you're sensitive and must avoid them, you will probably need to invest in a much more expensive brand that verifies low EMFs from their products. I know there are sauna companies out there, but I have zero experience with them and I'm the wrong person to ask.
I'm not real clear on if EMFs affect me... maybe they're the reason I zone out so much indoors, but feel way more awake and alert when I'm up in the mountains in national parks. What I can say is that I don't feel worse from using my sauna regularly.
I got started with using saunas because of my Naturopathic Doctor, who is the reason I recovered some of my health. He has a really high quality far infrared sauna in his clinic, and he had me using it regularly as part of my treatments. It was really difficult to endure. I was so sick that the energy it took to survive that thing still haunts me. I remember my heart pumping into my throat, the sweat flowing like waterfalls, my vision going in and out... it was tough. But the more I used it, the more I was able to endure it, and the better I felt after each session. I was comfortable with the process because I trusted my doctor, and his nurses were monitoring me.
I was living in North Dakota, and my doctor was in New Hampshire. I wanted an option to use at home. So, on a whim, and with encouragement from my dad, I bought this one. It's not as effective as my doctor's, but it has the same effect if I stay in it long enough. I sweat waterfalls, my heart rate goes sky high, and I'm left feeling completely exhausted after. Yeah, it does the job I want it to do.
Yes, it does seem crazy for someone with ME/CFS and POTS to be using a sauna. I am only sharing my experience, and I am NOT recommending all my readers do this. Remember, these blog posts are NOT medical advice. In fact, I would probably work with your doctor before using a sauna, because there are definitely some potential risks. I do not use my sauna when I don't feel strong enough to tolerate it - in fact I usually take all my pills and drink some caffeine first to stabilize myself the best I can. I don't use it on days when I have something to do. I only do it on days when I know I can rest and recover. It can trigger my PEM (post exertional malaise) when I don't time out when and how I use the sauna, but the PEM it causes is so much more peaceful than a typical crash and I recover faster from it.
Here's the benefits for me, personally:
- Clears up hives and rashes on my skin - Helps my blood flow to every part of my body (it's like a miracle!) - It takes away my shakes, jitters, and itches and lets me rest calmly afterwords - I sleep more deeply and peacefully when I use it regularly - My digestion and metabolism is improved when I use it regularly - It reduces my muscle pain and cramping, probably because it gets blood to my muscles - I feel more stable and stronger when I use it regularly, with fewer POTS episodes - It helps manage my weight a little - My vision seems to be sharper after I use it - I feel more resilient to changes or stress when I use it regularly - My reactions to allergens and chemicals are reduced when I use it regularly - I just feel better... yes, it leaves me tired, but I feel more calm and at peace.
And here's some articles and studies on Far Infrared Saunas for you skeptics:
I like to lay a thick towel on the bottom to collect my sweat. I fold another thick towel into a soft seat to sit on. I've found that I do not like to sit on the chair and poke my head out the top. I greatly prefer to sit on the bottom cross legged, completely enclosed. It's easier for me to endure this way, and I feel the whole effect on my whole body instead of keeping my head cool. I keep another towel or two in there to use to wipe my face regularly.
They say it's safe to use a phone inside it, so I do... but it does get hot. I like to keep it on the bottom front (it's a lot cooler down there because the heating plates are only in the upper back) and watch something on my phone while I use it. I need something to focus on while I'm dying from the high heart rate. I also bring a water bottle full of electrolyte water in with me. I use a stainless steel bottle, not plastic.I also like Ultima Electrolytes because they're sugar-free, but effective.
I always try to manage for 45 minutes (typical for a dry sauna, not for a wet sauna,) but somedays I really can't. I just stay in as long as I can tolerate it. Once I'm done, I wipe as much sweat as I can off of me with a towel while I'm recovering. You don't want your skin to let the sweat soak back in, so you want to dry yourself as quickly as possible. Once I'm able to walk into the shower, I take a hot shower. Not cold. I don't want my body to cool down. I want to keep that blood moving well. But, me being the way I am, I typically sit during the shower so I don't fall over and hit my head and kill myself.
In a good session I SWEAT. I sweat so much it's hard to keep it from dripping into my eyes! It's amazing! I remember when I first started to use the sauna it would cause me to break out with acne... but that doesn't happen anymore since using it regularly. I think I'm keeping my pores clear this way.
Side note... I've had times when I can't sweat in the sauna, and other times when I sweat waterfalls. Not being able to sweat can be a sign of dehydration. It can also be a symptom of dysautonomia, when the nerves don't signal instructions to do things like sweat (or breath, or digest, or pump blood... isn't dysautonomia fun?) In my experience (again, NOT medical advice!) when I can't sweat I still get the benefits of pushing blood in my body. It still helps. But I also notice that I'm WAY more tired after. I had an episode once when I couldn't stand up to get from the sauna to the shower, so I crawled into it and laid down in the bottom of the tub until I was able to turn the water on and just take a bath. That was kind of scary... so since then, if I'm unable to sweat in the sauna after 15 minutes, I don't continue. I stop and get out before I hurt myself.
THE ONLY CON about this particular sauna:
The zippers are made of metal, and they get REALLY hot. I can burn my skin on them. The zipper... what do you even call it, the part of the zipper you grab to use it? The tag? The handle? That part hangs down on all 3 and I have to be careful not to let it touch my forehead. The main big zipper handle can be tucked away in the Velcro that seals the top, so that won't bother me. It's the two zippers for the arms that can burn me if I'm not careful.
So, I'm not trying to sell you on this exact sauna... there are probably better choices. But, I can tell you that it's been reliable for me for 10 years!
UPDATE
It's the next day, 24 hours since I finished using my sauna. I'm struggling to move much today. I'm so tired my eyes are zoning out on me frequently. I can move as long as I keep moving, but if I sit down then I can't get back up. I go frozen. It's hard to move. I'll recover... but it's worth it to me because it's helping combat my allergies (it's spring it the south, there's layers of yellow pollen on everything.)
I agree with the Native Americans who fought against the pipeline in North and South Dakota: Water Is Life.
It's true. We can't live without clean water.
We said the mantra over and over, demanding that the source of our water supply wasn't ruined by fracking and leaking oil pipelines. But why don't we really live this mantra by choosing to drink clean water and choosing practices that keep our water clean? Why are we still drinking from plastic bottles, drinking the tap water, and choosing to buy foods grown with pesticides that run off into our water supply and ruin in?
In the words of Nestle's CEO:
“Water is, of course, the most important raw material we have today in the world. It’s a question of whether we should privatize the normal water supply for the population. And there are two different opinions on the matter. The one opinion, which I think is extreme, is represented by the NGOs, who bang on about declaring water a public right. That means that as a human being you should have a right to water. That’s an extreme solution. The other view says that water is a foodstuff like any other, and like any other foodstuff it should have a market value. Personally, I believe it’s better to give a foodstuff a value so that we’re all aware it has its price, and then that one should take specific measures for the part of the population that has no access to this water, and there are many different possibilities there.”
So... if water is to be treated as a "foodstuff" with market value, that means you have a choice. What water are you buying? Do you know what you're buying when you pay your water bill for tap water? Do you know what you're buying when you buy plastic water bottles because you don't trust the tap water? Are those alkaline waters you're buying to be healthier actually better for you? It's all a bunch of marketing, because water is a product to be sold.
Oh boy. This one is a heavy subject, one that I could write a whole 200 page thesis about. It's easy to feel like it's too big of a problem to tackle, but I want to promise you that there are some solutions.
Let's talk about solutions, because the problems with water are too much for me to get into.
But first:
Well... yes. Dave is right.
1. Your body won't turn alkaline by drinking alkaline water. You will struggle to digest well if you drink alkaline water with your meals, because it reduces stomach acid. You need enough stomach acid to bread down food and absorb the nutrition from it. Lowering your stomach acid can lead to heartburn. That said, you definitely do need minerals in your water to absorb it and retain it, but more on how to do that later.
2. You really don't want to drink chlorine. Chlorine kills bacteria and sanitizes. Do you want to kill the bacteria in your body? Bacteria basically control the health of our bodies, so without enough good bacteria our bodies won't function well. If you're taking probiotics to help add more good bacteria into your gut, are you swallowing it with chlorine, a substance that kills bacteria?
3. Fluoride is very controversial. Does it have benefits? Yes, it does reduce cavities. Is it a neurotoxin that kills brain cells? Yes. It's essential you don't consume too much, because the toxicity of fluoride is dose-dependent. So how exactly do you control the dose when you're drinking tap water? (Also, do we need to add fluoride to toothpaste when there's already enough to prevent cavities in tap water? That's a post for another day.)
4. Okay, so avoid tap water to avoid chlorine and fluoride... got it. But then he says not to drink out of plastic? Plastic does break down into microplastics that end up in the water, and they do mess with hormones. Then how to do I get water? Those glass bottles are expensive, and hey, don't they contain water from sources high in arsenic? Some do, yes. That's what I'll offer you some solutions in this post! There are options.
5. Don't focus on division and hate while you drink it? On the surface this might seem silly, but in reality it's a great practice to focus on gratitude instead of what we're angry about while we're eating. Our thoughts do control the quality of energy that flows through our body, and our energy will affect our digestion. It's not woo-woo voo-doo - many cultures have known this for thousands of years. Did you know that Kung Fu masters can change the properties of water by moving their qi? We've simply lost sight of it in our dumbed-down modern consumerist fast-paced culture. Our minds really do affect our physical health. (I'm not promoting toxic positivity here - there's a time and place to process all emotions, but processing anger should not be done while eating.)
I'll show you what I use for my drinking water. (Bathing water is for a different post.)
The best solution I have found is to filter my water with Reverse Osmosis. It is a very effective way to remove most of what is in your tap water. It's easier than distilling, and allows you to have safe water from a tap in your home. Reverse Osmosis usually involves 5 stages of filtration, sometimes with added UV light to kill anything after the chlorine has been filtered out. Your responsibly is primary just to change filters on time, so it's not that big of a commitment. Personally, I find it way less to manage than buying pounds upon pounds of water from stores.
Let me show you what it does. In these photos I'm using a TDS Meter that measures Parts Per Million (PPM) of water. The PPM are everything in the water that isn't water. This can include good healthy minerals along with heavy metals, chlorine, drugs people flush down the toilet along with anything else the waste water treatment plants can't filter out, fluoride, and any other additives to treat the water. The higher the PPM, the harder and less acceptable the water quality is. In Bismarck, ND, the tap water was normally near 300 PPM (I'll have to dig back through a million photos to find that one to show you.) Here in Gaffney, SC, I have measured it between 44 PPM (shocking low) up to 150 PPM after they did some work on the water pipes under my street. Because the pipes burst open and were leaking. That was the day I started my period, and had zero running water in my house all day long. Ayyy... that's a story for another day. UPDATE: I'm returning to finish this post several months later, and as you'll see in upcoming photos, the tap water here in Gaffney is now over 300 PPM.
(I'm going to add photos of Bismarck's water here when I find them, but they're at least a year old now and I have to actually dig for them! Keep reading to see how my current system measures though.)
2. Install an RO water filtration system onto your kitchen sink. This is my favorite solution, but it does help to have some plumbing knowledge to manage it. You also might need permission from a landlord if you don't own your kitchen sink. I bought and installed the APEC filter in my last home.
I highly highly highly recommend it! It brought my PPM down to around 10, and once it started to go up to 20 I knew it was time to change a filter or two. I used the hole for the sprayer in my kitchen sink, and installed a faucet with a built-in sprayer instead. This was very convenient because I could flush the tank directly into the sink when needed, and I could fill my glass with water from the RO faucet at the kitchen sink.
After years I ran into an issue with the system, but customer service was the best I could have ever asked for. The bladder in the tank was wearing out. At first we used an air compressor to refill the pressure, but that solution didn't last long. The tank itself started to leak, and I found it falling into the wood of the cabinet it was in. The wood was soaking wet. We had help cutting out the wood and replacing it. We had to buy a new tank from APEC, and then we needed help installing it because we couldn't get the water pressure to where it needed to be. APEC spent 40 minutes on the phone with us to walk us through how to fix it ourselves. The guy knew the system inside and out, and he patiently talked us through every step as we did it. He didn't end the call until the problem was resolved. It was amazing! Best customer service ever!
3. You might need to do something less complicated if you're in a rental, or not staying in any place for long. That's my current situation, so I bought this:
The SimPure countertop RO water system. (It was $100 less when I bought it last June... INFLATION.) It's ok. Not great, but ok. So much better than nothing. I'll show you:
It only uses 2 filters, rather than the 5 of the under sink RO filter I used to have. It simply can't be as thorough. Where I used to get my PPM down to around 10-15 with that under sink filter, this gets it down to around 50-65.
Tap water in Gaffney, SC: 308 PPM
Filtered water: 61 PPM, filters are 3 months old, still have 3 months of life left in them.
I would recommend this if you need to buy any portable RO water filtration system... but if you have the ability to install one under your sink, just do it. They cost the same, and the sink system works WAY better. But I'm happy enough with this countertop system for now, while renting.
My complaint is that it's on rubber feet, so it's hard to move it around on the counter, but I have to move it around to be able to take the water tank out of the back of it to fill it up. I have to fill it about 2x per day for my husband and I.
It assumes you will only fill glasses with water. It has 3 buttons for the amount of filtered water it will pour out. The trouble is that the amounts for each are a little too little or too much for my glasses. I also need to keep a Pyrex measuring cup next to it because I use it constantly for getting enough filtered water to pour into my tea pot. The teapot itself won't fit under the spout. So... it's a little less than perfect, but it's so much better than nothing.
My husband only drinks cold water (I can't drink cold water, it hurts me!) So he fills up a pitcher from the RO machine and keeps the filtered water in the fridge.
So the problem with RO water or distilled water is that the good necessary minerals are filtered out too. It makes the water "dead" so-to-speak. You won't find any water in nature that isn't full of minerals from the rocks and soil it flows through. We're meant to drink the minerals in the water. In fact, our kidneys rely on the minerals in the water to be able to absorb the water. That's okay - just add them back in. You can buy trace mineral to add to your water before you drink it.
I personally can't drink water without thickening it, otherwise it flows right through me and my kidneys and bladder can't handle it. I get dehydrated by drinking water that isn't thick enough. So I use powdered electrolytes to thicken my water. I use the ones from my naturopathic doctor, but I also like Ulitma a lot because the flavors are great.
This is also a great product for all your POTsies reading this - if you have POTS you NEED electrolytes to build your blood. It's critical! Ultima has less sodium than other brands, but it has more electrolytes and no sugar! So just add some Redmond Real Salt to your water if you need extra sodium. That's what I do.
(It took me close to 6 months to finish writing this post... I started many posts and couldn't finish them, but I knocked this one down... yay me! Life with ME/CFS, Endometriosis, and POTS... sheesh, it's hard to get much done.)
Advice that doesn't make sense for people with ME/CFS, POTS, Fibromyalgia, and other energy-deficient diseases. Yikes.
Before we begin, please understand that I'm saying this as a person with moderate and NOT severe ME/CFS. Severe ME/CFS is a different issue as they lose all independence. I'm about 70% housebound these days. I can run out and do short quick errands during my good hours. I can work a few hours a week. I can manage some chores most days. At my best, I get about 3 to 4 usable hours of energy each day. At my worst, I'm in bed most of the day (and I have 2-3 days like this most months.)
And so... for the BAD ADVICE:
Food Prepping
A hallmark of ME/CFS is Post Exertional Malaise (PEM), which means that after a person spends too much energy then they crash and have to completely rest until they recover. PEM rest can take a day or two, or it might take weeks. Depends on the severity of ME/CFS. So the recommended method for avoiding PEM is something called "Pacing." Meaning, the person does a little bit of work at a time, but not enough to trigger PEM, and then rests. Then does a little more work later, but not enough to trigger PEM, then rests again. And so on. Basically, doing too much (spending too much energy) all at once means more time recovering in bed than if we pace ourselves and avoid doing too much at once. We tend to be able to do more if we're not regularly crashing ourselves.
So... this idea of "Food Prepping" is confusing to me. It would take HOURS to do all the prep at once. I know people who spend their entire Sunday afteroons food prepping. Hours of chopping veggies, cooking, portioning, washing dishes, cleaning up... noooo. That's way too much work all at once! This makes sense for couples with kids who both work long hours and can't find time or energy to cook once they're home in the evening. It doesn't make sense for chronic illness. Chronic illness is better when food is kept simple, and frankly, this isn't a simple way to approach food. Food prepping is strictly a time-management solution for busy people.
Let's explore how I eat for an example of pacing:
Breakfast is usually just frozen organic sausages, and all I have to do is put them in a pan with water, put a lid on it, let them boil while I take all my pills, and then eat them. Easy. And how could I food prep that? I only eat protein for breakfast due to my reactive hypoglycemia issues, so there's no need for me to complicate breakfast with things that require a lot more energy to cook.
Lunch for me is typically a simple salad. Salad isn't exactly the best thing for me because raw foods are really hard for me to digest, but it's easy and I need easy (and I have digestive enzymes I can take, ha.) I make it of romaine, avocado, cucumber, organic deli meat, and light sugar-free and seed-oil-free dressing. I might add in some artichoke hearts, olives, or beets from glass jars. Sometimes I add sprouted nuts and seeds too. When I say avocado, I usually mean pre-made guacamole that I scoop out. Honestly, it's really simple. The work comes from shredding up the deli meat in my hands and washing my hands. How could I food prep any of this? Everything I add to my salads is already prepared.
My afternoon snack is beef jerky or a protein shake. No food prep there.
Dinner. Dinner is where I need energy. I'm way better off cooking every dinner from scratch though. I thaw my meat the day before. When it's time to cook dinner, I go slowly. I start with chopping veggies if I need to, and then I store what I don't use in a container in the fridge at that point. For instance, I usually don't use a whole zucchini for one dinner, but I'll chop the whole thing (since I'm chopping anyway) and store the rest. My husband likes to chop his own veggies (he eats onions and peppers, and I can't.) I also buy pre-cut veggies when available, like shredded carrots or sliced shitake mushrooms. But my favorite? I buy frozen veggies and dump them in the pan. Frozen veggies are the best of the best for me. They're already cut, I can buy them in bulk, and they require no extra work.
I don't make big fancy dinners - I keep it simple. But my diet is also simple. I always eat meat with veggies, nothing else. Almost all my dinners are low-management. I pour walnut or coconut oil in a pan, add my chopped veggies, season them, and let them cook. Then when they're halfway cooked I add my meat. Sometimes I use a whole uncut chicken breast, sirloin steak, or salmon steak. All I have to do is season it and flip it. Other times I'll chop the meat to make stir-fry, then stir occasionally until cooked. I might add coconut aminos, coconut milk, lemon, etc. You're never going to see me cooking anything that requires a lot of steps - but I also can't eat grains, beans, dairy and sauces, or other things that require extra work to cook.
Oh, and how I love my Instant Pot!! It takes the work out of making roasts, stews, and soups. I always buy a quarter cow and store it in my deep freezer, so I get a lot of meat that needs to be slow cooked. The Instant Pot cooks it really well and saves me loads of effort over crock pots and the oven!
While food is cooking I wash the dishes I can wash (I do not have a dishwasher currently..... that's a major issue with my energy levels.)
Note: I have a husband. When I'm really bad he will always take over cooking dinner. We avoid eating out, but we will Doordash if necessary too. I also keep cans of soup in the pantry for quick and easy dinners. I have multiple back-up-plans.
Keep it simple, don't food prep. Spread your energy out into smaller chunks. Don't spend too much all at once. For many with ME/CFS, cooking anything at all would be way too much energy. In that case, you're going to need a caretaker or rely on food delivery. That makes this a moot point.
Taking High Doses of Vitamins
It's probably not going to "cure" you unless you have severe deficiencies, in which case, you don't have ME/CFS. You have nutritional deficiencies. It's a really common cause of chronic fatigue, but it's not the cause of ME/CF Syndrome. Chronic Fatigue Syndrome and Chronic Fatigue are not the same, which is why CFS is going by ME these days.
We need proper nutrition to feel our best, and getting proper nutrition will help reduce how bad we feel. If we're deficient in vitamins and minerals it can present as muscle pain, nerve pain, brain fog, insomnia, bad skin, losing hair, poor vision, ringing in the ears, and more. Yes, if you are deficient in anything, supplementing can help relieve symptoms. That said, ME/CFS is not an illness of nutrition deficiency. ME/CFS research is still determining how ME/CFS works, but we have evidence that it's an immune cell deficiency, or mitochondrial problems. There's also evidence that it's a brain fluid leak.
The problem, however, with just taking some random mulivitamin or a B-Complex is that they might make you worse:
1. There's no regulation on supplements. There's no FDA monitoring them. So you can't know what you're really buying... unless you're buying from brands with 3rd party certifications, in which case you're going to pay a lot more. It's worth the cost of good quality vitamins if you need to take one. But so many of these cheap vitamins are not what they claim to be, and there have been lawsuits because of this issue. Walmart and Target store brands tested some pills and found they were just filled with fillers, not what the label said they were.
2. So many multivitamins use forms of vitamins that are synthetic and not well absorbed. When you buy a multivitamin from Walmart or GNC, you're not getting the same vitamins you'd eat in food. You'd never find cyanocobalamin in food, but that's the most common form of vitamin b12 in supplements. What they do is bind cobalamin to cyanide (yes, the poison in apple seeds) and call it vitamin b12, because the cyanide has the ability to get the cobalamin into your blood stream really easily (cobalamin on its own would pass right through you without getting absorbed.) Then your body has to clear out the cyanide (poison), which takes a lot of energy - and we can't afford the energy to be detoxing like that. The amount of cyanide is considered to be well below the toxic limit, so it's considered safe. That said, people who need to take very high doses of B12 (very common in those with fatigue illnesses) often don't have bodies that can handle any extra substance to detox. I have talked with people in groups who claim that these synthetic vitamins tend to give them a lot of gut pain, trigger IBS issues, and cause flare ups. When they take the more expensive natural forms they don't have these problems. If you want to read even more about this issue, I recommend reading Dr. Ben Lynch. He is a leading researcher on genetics, and how things like forms of vitamins affect our DNA.
3. So many vitamins contain super high doses of vitamins you can actually overdose on. Look at the supplement facts on any vitamin. The first on the list is vitamin A, a fat-soluble vitamin (meaning your body stores all of it in your fat instead of passing excess through you in your urine.) Fat-soluble vitamins are vitamins you can overdose on, and you can actually get sick from vitamin toxicity. Vitamin A is always in a really high percentage (like 1000%+ RDA) because these companies want you to feel like you're getting your money's worth. Except you really don't need that much vitamin A. You really really don't.
4. Vitamin toxicity can cause a lot of problems. I am prone to vitamin b6 toxicity, which causes my neuropathy. The moment I start feeling the tingling in my feet return, I know I've had too much b6 in my food. When that happens I have to avoid sunflower seeds and poultry for a while, because they're the foods I eat with the highest amount of b6. I wrote a blog post on this.... let me go look for it to create a link.. Wait no... I didn't. HOW DID I NOT WRITE ABOUT THAT. That was a MAJOR issue I went through! Scrolling through my blogs, I see that I did touch on it in a few different posts, and it started here. I need to write about b6 toxicity!!! It's so important!!
Yoga - Or Exercise in General
Let's go back to what ME/CFS is: It's defined as chronic fatigue that is made worse by exercising, causing Post Exertional Malaise (PEM.) Exercise makes ME/CFS worse.
Deconditioning is a real issue though, so it is good to move as much as we can with the energy we do have, as long as we don't do so much that it triggers PEM. I am able to go for a few walks each week, usually about a mile. They have triggered PEM for me sometimes, but when they don't, it's worth walking. It feels good if I don't push myself too much.
But I also want to explain why Yoga is a bad recommendation for people with POTS. Yoga involves a lot of inversion, and POTS is triggered by postural changes like inversion. A yoga instructor that understands POTS can be helpful, because there are some yoga practices that don't involve postural changes, but it will be hard to find such an instructor. People with POTS do need to strengthen their legs to help with the blood pooling, but they need exercises without postural changes. I really like exercises in which I'm laying on my back or stomach.
Essential Oils
Oy vey... essential oils. What a huge topic! As someone with MCS (Multiple Chemical Sensitives), I don't really like to recommend EOs because they all contain VOCs, which can trigger reactions. A lot of brands use formaldehyde doners in their oils too. I personally don't have problems with some EOs, and I'll use them occasionally because they do help. I don't use them for perfume or aromatherapy, I use them for things like massaging blood into feet or treating my skin when I get hives or rashes. But for the purpose of this blog, I'm not going to focus on MCS issues. I want to focus on bad advice for treating fatigue.
ME/CFS comes with a lot of sensory issues, and the purpose of EOs are to stimulate your senses. They work because they affect your nervous system. That can be too much for people with ME/CFS to tolerate. It's possible that one or two could help someone with ME/CFS, like using lavender when they have insomnia. I find that ginger oil in my baths helps keep me warm for a few hours after the bath (I'm always freezing cold.) The problem is not EOs... the problem is people who recommend using them. They're not careful! If someone with ME/CFS wants to use EOs, they need to use very light amounts at a time to see if they can handle them. It's really easy to overwhelm the nervous system with EOs, which can create even more fatigue, even cause headaches and muscle aches.
EOs (if they're pure, organic or wildcrafted, and without synthetic perfuming agents or stabilizers added) may help manage some symptoms if you can handle them. If not, they'll make you worse.
What they will not and cannot do is cure ME/CFS, Dysautonomia, Endometriosis, or any other illness. It's bad advice to recommend them for someone with ME/CFS because it's most likely just going to overwhelm their nervous system. It could be like someone blasting rock music while you're trying to sleep - they're too stimulating. Sensory overload. People with ME/CFS really need to maintain a calm nervous system. The least sensory issues possible helps. Avoid smells, loud noises, light pollution, bad textures, etc.
Go to Therapy
For grief counseling? Yes, that's a good idea! The ability to talk about how much grief this illness causes is really helpful!
In my experience, however, this advice usually means "go to a psychiatrist for drugs to treat your anxiety" OR "go do CBT to fix how you think." It's not only a highly dismissive remark, it's dangerous. CBT is a therapy that assumes your root causes are all in your head - that you believe you have an illness instead of actually having one. It's very insulting. Read the article in that link and it will explain why CBT has harmed many patients. In short, CBT encourages patients to stop acting like they have an illness, which leads to the patients making themselves MUCH worse because they try to exert energy and live "normally."
Just Get a Job Because Having a Reason To Leave the House Helps
When I first got sick, a lot of people told me this. I wasn't working for 1.5 years, and I was bedridden for much of that time. I didn't get a job until after working with a doctor for a while and recovering enough to be able to work very part-time. Without seeing that particular doctor, I wouldn't have been able to manage working at all. I saw loads of doctors who couldn't help me, then I flew out of state for my naturopathic doctor, and he was able to help me. He's internationally recognized at helping people like me though, where as all the local doctors I saw didn't have a clue what was wrong with me.
After I started working again, did the job help me recover? No. It didn't do anything for my physical health. Did it help give me a sense of purpose and lift my depression? Yes, but it's because of the nature of the job I had. I was very passionate about the work. Despite my passion for it, I was seriously not able to work more than 10 to 15 hours at best. I couldn't work multiple days in a row, and I spent my time at home recovering.
We must remember that ME/CFS is an illness of energy. Jobs take A LOT of energy, and if we can't spend energy at our jobs, we're probably going to get fired. If we give more energy than we have to a job to avoid getting fired, we're probably going to have a lot of PEM that keeps us feeling at our worst.
Highasakite - Science and Blood Tests
Florence and the Machine - Sky Full of Song
The lyrics are wrong in this video - it's "I can hide from the thunder in a sky full of song."
I've been hesitant to say anything on social media about my choice to get the covid vaccines. I know many of you will not approve, so please don't start an argument with me. I spent a lot of time researching the benefits vs the risks, and I decided that the benefits outweigh the risks, especially due to my health situation. Covid has the potential to undo all the hard work I've done to manage my illnesses, and I'm not willing to throw away 8 years of intense work to have this level of stability (and I'm far from stable!) I determined that the vaccine is less likely to cause me long term harm than Covid itself, and it would completely idiotic to assume I won't catch covid eventually.
I would go into more detail on my research, but I don't have much energy at the moment. It all boiled down to UK studies showing that people with post-covid POTS were going into remission from the covid vaccine, and the rate of people developing POTS from Covid is substantially reduced in vaccinated people. The last thing I want is for Covid to worsen my POTS. The vaccine side effects are better than worsening my POTS. I also just don't handle viruses well. Ever since H1N1 I haven't been able to handle getting sick. I take really good care of myself and don't get sick easily anymore (I did as a child and teenager), but now when I do get sick it knocks me out twice as hard and twice as long as everyone else. Covid could be really dangerous for me. I've been avoiding people the best I could, but it wasn't possible anymore since fewer and fewer people take any covid precautions.
But I do want to share a bit about my experience to contribute to the conversation. I was hesitant because I was nervous about how my body would react to the vaccines. Last year I had a tetanus shot that left me with side effects for 2 weeks! It was miserable! But my motivation to help end this pandemic (since not enough people are willing to get vaccines to help protect the most vulnerable) fueled me to research this covid vaccine and just do it.
I got the Moderna because I have the most trust in their company.
My first shot gave me 3 days of side effects. It was not fun, but it wasn't as severe as I worried it would be. I tasted metal in my mouth, had a constant headache, lots of heartburn, my gut was in a lot of pain and caused some unpleasantness in the bathroom, my joints were swollen, I had occasional chills, a sore throat, and my toes were more purple and freezing cold than normal. The 4th day was better, so I went for a walk that ended up being more strenuous than I could handle, and left me with another couple days of malaise and fatigue. I wasn't ready for exercise and I paid hard for it. Then I started to return to my "normal," but all month I had a struggle with chest pain and heart burn. I kept taking so many pills to try and stop it and nothing was helping enough. I had to go home early from work a couple of times because the chest pain was so bad that I couldn't focus. I had about 1.5 weeks where the chest pain and heartburn subsided before getting my next shot.
Then I got my second shot 5 days ago.
Monday morning at 10 am I got the shot. It only took a few minutes for an elevated heart rate to start bothering me. It took about an hour for increased fatigue to settle in. By 5 pm that evening I was in pain. A LOT of pain. I don't just mean my arm. It was like a full blown fibromyalgia flare on steroids.
Tuesday morning I woke up in tears. The pain was enough where I considered going to the hospital, and then it felt like I had the flu on top of it. Every muscle in my body was screaming, tense, and giving me sharp pains when moving. My calves were twitching and spasming. My circulation was much worse than normal and my toes were so purple and cold that I couldn't move them. My neck and head felt like they were imploding - like they were filling with gas that was trying to expand them. I couldn't touch my skin because it was tender and sensitive the way skin is with the flu. My fatigue was strong enough that it was really hard for me to get out of bed and take anything to help. I ended up collapsing when trying to stand up. It wasn't possible for me to stand in one spot. If I was on my feet I had to keep moving or I would faint. POTS made the vaccine worse, or the vaccine made the POTS worse? Don't know.
Wednesday was still very bad, but different. The body pain mostly moved up to my head and chest, but my joints still ached mildly. The chest pain began, the heart burn kicked in, and my headache was worse than ever. The sore throat begin.
Thursday the pain reduced enough where I felt relief, but the chest pain continued. I could finally start using my arm mostly normally. The fatigue was still too much, so I couldn't accomplish much. The sore throat and headache were bothering me a lot. I was still icy cold.
Friday, yesterday, was the best I had felt all weak, but a new problem occurred: diarrhea. I don't just mean a little. It was dangerous to be away from the toilet. My body was in purge mode. It lasted the entire day up until bed time. I had to go grocery shopping, and it was the scariest grocery shopping experience since all I was thinking was that at any moment I could have to drop everything and run to the bathroom. My fatigue couldn't improve much under this situation. My chest pain reduced a little bit. The sore throat and headache reduced too, but still came and went. I noted how incredibly pale I looked. I was just out in the sun for most of last week, so I have a decent tan. My face was sheer.
Today, Saturday: My head is still going in and out of a mild headache. I don't get headaches often, so this is not normal for me. My stomach and gut still give me occasional sharp pains and gurgles, but I returned to solid. My fatigue is still stronger than my normal, but I had a cup of green tea to help me get something done today... which is writing thig blog, apparently. I still feel like it's too much effort to get out of my chair, but my mind is working better than it has all week. I feel like I might be in the stage where I'm past the vaccine side effects, but my body has to recover from being so sick.
If any of you understand how to read sleep data, then here are my Oura Ring results from Monday night into Tuesday morning:
For reference, here was Sunday night into Monday morning:
Oh, just think about how much I could be writing about! What a year. What a drain. Energy vampires around every corner. They suck me dry of the desire to write about it. I do have a desire to share this with you all though.
I know I have written about music many times here. Music is incredibly important to my mental, emotional, and spiritual health. There are several artists who speak to me that I love and adore, but London Grammar is the one band that produces the sounds that speaks about me. They are the sound I would produce if my body was a musical instrument. Want to understand how I'm feeling on the inside? There's always a London Grammar song for that. Have you seen those devices that amplify the energy that plants emit, and it sounds like ambient music? Well, London Grammar is that device for my body.
"What A Day" in particular right now.
I want to break this down for you, because I think this is a great way to explain what I feel like most of the time.
It starts with Hannah's higher head voice breaking down into a low vocal fry soft scream, which she uses to state the mood. Then the slow driving beat of the piano, and her low voice slowly erupts into a type of subtle scream with her "ahhhh." Slowly the drums carry the driving beat forward while the piano sounds more erratic if you pay attention to it.
The textures of the various beats from the piano, drums, and later the guitar perfectly fit my heart beat and adrenaline. They mingle together like they're at odds with each other. They express the current that keeps flowing in my body to keep me going. Do you hear how they sound unsettled, never quite resolving into a comfortable sound? I have that type of forced drive always coursing through me. But even though the tempo is not slow, do you hear how her vocals sound slow, dissociated, and not matching the beat? How her vocals are a different current on top of the foundation? That's my inner voice. Very low energy, despite that drive below the surface, and what I express comes out as a soft wandering frantic anxiety. It takes the majority of the song before she sings an actual melody with coherent phrases, and then it's short lived before she breaks her vocals down again into the pleading soft screams. Do you hear how this song expresses the evening at the end of a long hard day, when cortisol levels should be dropping so you can wind down, but you just can't let go to actually rest? That's the state I live in 90% of the time. I'd like to see you function like a normal human being when this is your best energy level.
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.
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.
Last night I went to the hospital and stayed the night for sleep study. It's been years coming, and I finally went through with it. I recorded a video for this blog. I was too tired to type about it. I look horrible - because I haven't been sleeping! This isn't a beauty contest. I'll look beautiful in other photos. Ha!
Some highlights:
- I didn't sleep much.
That pretty much sums it up!
Okay, but in all seriousness:
Sleeping pills didn't help. Being totally exhausted from several nights in a row of losing sleep over hives didn't help. I didn't sleep for the first 3 hours. I couldn't get comfortable. My rash on my ankle woke me up when I was finally sleepy. There was too much light and too much noise. I felt alert the whole night, like I was waiting for the next instruction. I feel like that at home regularly though. I don't ever want to have to do this again, as that was not at all fun trying to sleep and failing at it for hours.
This rash drove me nuts! I was worried I might get told I have to reschedule because of my hives. I was given the option. But the itching has gone down so much that I decided to just go for it. Except for this rash. I think it got worse during the study. I am sure I would have slept maybe 30 minutes more if this didn't bother me so much at 4:30 am.
I won't get my results for 1 to 2 weeks, so I can't tell you. What I can tell you is that my Oura Ring gave me a low sleep score, showing my heart rate never lowered below 80 during the study. (The Oura Ring is not good at determining if I'm actually sleeping or not. It thinks laying in bed with my eyes closed means I'm sleeping. It cannot detect if I'm awake when I'm laying still, so these results are not the reality of how long I slept. It also only shows me as awake when I physically move, not open my eyes. I opened my eyes and remained still a lot during the study.)
I was worried about being reactive, and I was. I have rashes where the wire pads and glue were. They're not awful - not as bad as my hives have been. But my skin is not a fan of this stuff.
Getting that glue out of my hair was not nearly as challenging as I was told it would be. The lab tech advised me to use conditioner in my hair first, then use hot water to shampoo it all out. That might work, but I didn't try it. I soaked in a bath that was as hot as I could tolerate. I filled it with baking soda and epsom salts. It took about 15 seconds of soaking my hair in this bath water for the glue to come out. No problem! But after I scrubbed all the glue residue off I had to drain the bathwater so I wasn't soaking in it.
I'm pretty sure my hair is thinning out. Sigh.
I don't really know what the sleep study is going to show. I'll find out in a week or two!
