Common Advice and Why It's Bad Advice for ME/CFS

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. 

Once upon a time in the UK, the medical recommendations for treating ME/CFS was Graded Exercise Therapy. Julie Reymyer wrote an excellent article for Slate Magazine on this issue, explaining why it damaged patients and how this terrible treatment came to be the recommended treatment. 

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."

PMS is Torture

Extra long PMS

OMG



This was captured 2 days before my period started, so I had a 43 day cycle. I'm used to PMS being awful. I'm not used to PMS lasting 2.5 weeks, give or take a day or two because I think my symptoms began with what was actually ovulation. Ovulation just came late, so it was difficult for me to tell at the time.

It started with the mood change, cravings, and skin issues (acne, large pores, looking pale and malnourished.) The cramping set in after a week of that, then the bloating and heaviness in my gut. My mood issues came with feeling very withdrawn, not wanting to engage with people. After 1.5 weeks of this, thinking my period was due, I started to get the rest of my PMS symptoms. The breast tenderness, bowel pain, ovaries feeling like they're twisting and sending shooting stabbing pains down my legs to my knees, worsened insomnia with angry dreams, joint pain, fibromyalgia aches in all my muscles, disturbed vision, much weaker and more dizzy, very increased resting heart rate... it was like a 2nd PMS. That lasted for an additional week of torture.

The reason I'm reporting all of this is because it's so important to say how PMS can be just as bad as the period itself, if not worse. I actually dread PMS more than my period now. My mood was dark - so dark that I started to have suicidal thoughts (I wasn't planning anything, just thinking about how death would be an exit... this isn't abnormal, unfortunately.) I was too weak to accomplish anything, and too mentally blank and emotionless to enjoy anything. I spent about a week doing nothing - I couldn't do anything. I hated people, hated myself, didn't have a way to pass the time that made me happy, could hardly force myself to get anything like chores done... I was in this limbo, and I was ready to snap.

I do believe I have PMDD. Doctors have suggested it, but it's not officially diagnosed, I don't think. I'd have to read my charts to see if they put it down as an issue. PMDD is PMS on steroids, but it's classified as a psychological issue. PMDD is about the mood disorder that comes with PMS, mainly how the person so negatively relates to other people during PMS. It's not that I can't be nice or sincere, it's not that I'll be mean to you or blow up at you. It's that I seriously don't have the spirit to talk to anyone, listen to anyone, or even tolerate myself. I need interactions to be very short, very to the point, and almost mechanical - just do your business and be done with me.

You can't say I didn't try hard to manage this. I took my methylated vitamins, loaded up on vitamin D, my hormone balancing herbs, my bio identical progesterone cream, went to acupuncture and chiropractor each week, ate mostly blood building foods, exercised as I was capable, took lots of hot ginger baths, took my calming and cortisol suppressing herbs as needed, had a lot of alone time away from people... no one can say I didn't try hard.

My period *FINALLY* came last Saturday ALLELUIA! I had to call in sick to work... again. I have no control over this, which is why I chose to be very upfront and honest about this issue during my interview for this job.

My period was very painful, as expected. Remember how I had a laparoscopic surgery to diagnose and remove endometriosis? I'm not sure what it actually accomplished, aside from an official diagnosis. In fact, PMS has been worse than I'm used to since the surgery. I had 2 periods that were not very painful or heavy after the surgery, but then they went back to heavy and painful. The PMS, though? OMG.

But guess what? Yesterday, Sunday, the day after my period started, I felt SO MUCH RELIEF. I found myself wanting to talk to my husband. I messaged friends and laughed. I got some housework done. I shoveled the driveway! I didn't feel strong. I fought my POTS symptoms pretty hard a few times. But I mentally felt good. I wanted to be a part of my family again. I wanted to engage with people. I felt human! My period has become the remedy to PMS, when it used to be that my period was the scariest most dreaded part of my month.

From my Oura Ring.

(Note: The Oura is actually pretty bad at detecting when I wake up. I tend to lay in bed for an hour or longer after waking to find my strength and get up. It tends to show I get an hour or more of light or REM sleep than I do because of this. I need to learn to take it off once I'm awake to get better readings.)

This night was a week before my period started, but it's the best example I had from that week of what PMS was doing to my sleep. Most other nights had very choppy data, as if the ring couldn't read me for 30 min to an hour at a time during the night. Which tells me there's an issue... not sure if it's with the ring being unable to keep up with me, or if the ring wasn't tight enough because I was too cold.


And then my period started. Brachycardia! Whoa. The only time I see a heart rate below 60 is the night after my period starts. This has been consistent in all my recordings this year. Even my ZioPatch from my Neurologist showed the same thing. My Fitbit Alta 2 actually said I got down to 57, but I'm not expecting perfect accuracy from either device. I just get to see a general idea of my body's changes.



So to any of you women who tell me I focus way too much on my period and I need to learn to just push through it... well part of me really wants to get rude and nasty and tell you to **** off. But I'd rather just be understood, build empathy and compassion, and have your support.

And no, I refuse birth control. There is no way I'm going to take non-bio identical synthetic "hormones" that shuts down my production of real natural hormones and makes my body think it is pregnant long term. I don't want the very long list of side effects, especially the ones that will exacerbate my other conditions. It does not manage endometriosis very well - just ask the support groups I'm in with 20k women. The fact of the matter is that PMS has never been as bad as it has been since that surgery. Will synthetic hormones really fix that problem?

Anyway, now that I got this post off my chest, I want to go back to enjoying being myself! Hopefully for 3 weeks this time!

Day by day by day by day...

Oh to be me.

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

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

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

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

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

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

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

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

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



So...

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

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

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

Ableism

This post is not directed at anyone personally, it's actually inspired by a different blog I just read. I wanted to share my point of view on the topic. Some might think it's directed at them given how much I've struggled this week, but I promise it's not directed at anyone.

I want to talk about this other "-ism." The one that the media, "tolerant" people, and society in general doesn't talk about very often.

"Ableism"

Ableism is a concept like sexism, but in the case of ableism, it's an idea that disabled people can do what able bodied people can do. It seems obvious: a disabled person is not able to do everything a healthy able bodied person is able to do. It's obvious when you see someone with a broken leg. You would automatically understand that that person cannot run a 10k, because running requires both legs to be working properly. It is not obvious, however, in the case of people disabled by invisible illnesses. Do you assume that a person is fully able bodied just because you don't see obvious signs of disability, such a broken bones?

Ableism is a perspective rooted in misunderstanding, a lack of empathy, and often times just simply naivety. I'm not using the word ignorance here, because being ignorant implies that a person chooses to ignore the facts and wisdom about something. Ableism typically is not rooted in ignorance, because it's typically rooted in people who have never been presented with facts and wisdom to be able to ignore it. Ableism is due to a lack of advocacy and communication.

I normally get annoyed by the "-ism" talk, as I find that it's often over simplified as a means to be negative about someone or something. In the case of "ableism," however, I'm annoyed by the lack of talk about it at all! So I want to discuss my point of view on it.

I am disabled, but it's not obvious. My illnesses are not always invisible, but I don't let you see me when they are visible. When you do see me, it's because I have enough control over my body to act like a normal healthy person. This probably creates an assumption that I am actually healthy enough to do what any other healthy person can do.

You may assume that just because I occasionally drive a car that I can always drive a car. On the contrary, I often choose not to drive my car and will cancel my plans to avoid driving. If I drive when I'm not feeling capable it could be life threatening to myself and others. When I'm fatigued and weak my reaction time is very slow, both physically and mentally. When I'm fighting dizziness or vertigo it would be like drunk driving. When I'm in a pain flare I would be too distracted to focus on the road. The reality is that I don't drive very often, and when I do, I've prepped myself with my supplements, the right meal, and enough sleep first.

You may assume that just because you see me on my feet running around at work or the grocery store that I'm always able to be on my feet running around whenever I want to. Just like with my ability to drive, I have to prepare myself for these occasions with the right supplements and food first. I only work part time because I'm not capable of keeping my body in a state where I can be on my feet running around more than part time. I have to make choices, such as if I go to that outdoor autumn festival today, will I have the ability to work my shift tomorrow?

You may assume that just because I occasionally lift weights for exercise that I could do a graded exercise program to get better at lifting weights over time. Except every time I try to improve at some form of physical fitness my chronic fatigue gets worse. I only do what I feel I'm able to as I'm able to. I try to do enough exercise to burn off the high protein diet I eat, but not so much that it drains my strength for more important things, like going to work. Most importantly, just because one day I do 2 sets of 10 reps on my weight machine one day, does not mean I'll be able to carry that 25 pound box from FedEx up my stairs the next day. My strength ebbs and flows, it's not constant or predictable. My ability or inability to exercise in any given moment also determines how well I function in general.

You may assume that just because you see me in public talking to people like it's no problem, does not mean I'm able to talk on the phone at home any time. I can't tell you how many people have suggested I also work from home at an "easy" job like taking McDonald's orders over the phone. Do you realize how much energy talking takes? Especially in a fast paced job? It's difficult for me to keep up mentally, I start to stutter, sometimes my voice goes out on me, my voice gets rough and growls, I say the wrong words without realizing it, I can't say the words I'm reading because my brain won't translate what my eyes sees to my mouth... talking is like a sport to me! It's exhausting! Again, talking is a skill I reserve for times when I need to.

You may assume that because I'm a human being and I need to eat food to survive, that I should be able to order take out so that I can eat when I'm feeling too weak to cook for myself. Sorry, nope. I have yet to find a single restaurant in all of the city I live in that serves a dish I can safely eat for a price that I can afford. I'm not going to pay $40 for a 6 oz grass fed steak from a place that normally butters their steaks. I seem to be allergic to dairy, and I've learned that telling a server about my allergies doesn't mean my meal will be allergen free. Chefs make mistakes very often, or they simply don't know that an ingredient they always use would contain the food I'm allergic to. I MUST reserve enough energy to prepare my own food - this is a necessity for me. There's no other option. I can't live on convenience anymore, sadly, even though I need convenience more now than ever due to my fatigue.

You may assume that I can stand up as needed, such as during church or during the Pledge of Allegiance. I have a condition called POTS. I think it's fairly mild compared to many other people I've talked to with POTS, but 2 doctors have told me I have it. It means that when I go from sitting to standing that I experience pre-syncope - the feeling that I'm going to faint. My vision gets weak, sometimes black, I get very dizzy, I see random colors spinning around me, I can forget to breathe, my stomach and bladder sink, and I feel like I need to collapse. I'm not prone to fainting, so I often will stand up and deal with feeling all of these symptoms until my body finally adjusts and I stabilize. But what if that time is the one time I do faint and I hit my head on something on the way down? You can't see everything I feel when I stand up, but I experience it almost every time. I do my best when I slowly stand up, then stay on my feet and moving. I can't stay standing in one spot long, I must keep my circulation up.

You may assume that I can manage my periods just like any other woman has to manage them. Except that not many women have endometriosis, POTS, chronic pain, and chronic fatigue like me. There is no cure for endometriosis. There's hardly even ways to manage it. There's no cure for POTS, and no official FDA approved drug to treat it. When you put endometriosis and POTS together, you get this disastrous combination of extreme pain with extreme weakness. PMS can mean exhaustion to the point of being out of breath just trying to get to the bathroom. The period itself can mean I'm so dizzy that everything spins around me while I'm laying in bed with my eyes closed.  Not to mention all the other symptoms. For about 12 years now I've been completely incapable of doing anything other than laying in bed and sitting on the toilet for the first day of my period. Surgery didn't help. At all. Healthy women with a normal period and some "normal" cramping can take a pain killer (if they even need it) and go on with their day like they're just a little extra tired. That sounds like a miracle to me. For years I took 12 ibuprofen on the first day of my period to manage the pain. It wasn't enough, but nothing else I tried worked better.

You may assume that just because my hair is clean that it wasn't a struggle to wash it. 50% of the time I shower I'm sitting on the floor of the shower while I wash. It's because it's exhausting to hold my arms up and stand up at the same time. My heart rate skyrockets and I get out of breath. I always wait to shower until times when I'm feeling strong enough. When I have to shower, but I'm not feeling strong enough, I'll often choose to not wash my hair and go out with dirty hair.


I could go on with many many more examples of how I'm not able-bodied. My disability judge and a few doctors agree. (Yes, I won my disability case after 3.5 years - but more on that some other time.) I'm disabled in many ways. But I look healthy. I do my make up, put decent clothes on, wash my hair, don't wear any casts or medical devices, I avoid engaging with people when I'm struggling cognitively... odds are, I won't give you much reason to assume I'm disabled when you actually do see me in public.

What do I need from you? Why do you need to understand all of this?

I need you to believe me. If I say no, I'm not capable. If I say no, I'm not up to it. If I ask you for help, please help. Don't argue. Just believe me. Don't shame me. Just trust me. 

I'm a highly independent person who likes to do as much as I can for myself. I've always thought that I need to do things myself to make sure they're done how I want them done. When put a knife through my thumb and couldn't use it for a few weeks, I taught myself how to put my bra on without that thumb. When I couldn't use my right hand due to major wrist problems and was in a brace, I bought a mouse I could use with my left hand and taught myself to write with my left hand. I get creative so I can stay independent. I avoid asking for help. So getting to be this sick has been a challenge for me, because I've had to swallow my pride and learn to ask for help. I've had to accept that I can't perform to my personal standards. It's very humiliating to me. So when I ask for help or say no, and you reply with a lecture or a snarky comment, you just add to humiliation I already personally feel about myself. If you need to say no to me, just say no. Don't attack me in the process.

Ableism. The idea that you assume someone is able to do what you are able to do.

Thanks for listening. :) 

Post-Surgical Depression

I really question if the laparoscopic surgery was worth it. I got a diagnosis, which is very helpful in communicating my needs with others. That alone is invaluable.

But I haven't been myself since the surgery. I've been emotionally dead too much of the time. It's not that I can't laugh and joke around with friends, but I have to be in the mood to now. I often see that my friends are having a good time and I could join in and have a ton of fun, but just don't want to laugh. I don't want to engage with them. I don't think it's just a lack of energy, it's definitely a mood issue. I feel myself going back and forth between feeling happy and engaged and completely emotionally cut off and distant. It's driving my crazy - as if I'm in PMS all the time. I'm not myself. I just can't find it in me to want to talk to people too much of the time. This all happened since the surgery.

I have had all sorts of physical issues too. My toes are almost always FREEZING icy cold, and now I have the first toe nail fungus infection I've ever had. I've gained weight and feel inflamed and puffy. My skin has broken out much more frequently and more intensely. My POTS symptoms have been worse. It's hard to stand up in one place for more than a minute. I have to lean on something or keep moving. It's exhausting to just stand still, and the blood pooling in my legs is more obvious. My feet turn purple. I've been more reactive to allergens again. Lots of sinus trouble with bloody noses this summer. My "fibromyalgia" has come back in waves. Muscle aches and cramps, tender skin, and pain with using muscles in slightly the wrong way. I have a ganglion cyst on my wrist under my thumb, and my thumb has hurt a lot. Can't squeeze anything without shooting stabbing pain. My finger and toe nails are peeling off the top layer again. My pupils are not the same size fairly often. I'm dizzy frequently. My energy level has been awfully low. My digestion is weak. I'm feeling low blood sugar before my stomach will accept food.

My husband keeps telling me I'm argumentative too. I sense he's getting frustrated with me. I'm trying. I really am. I just constantly feel like I'm at the end of my rope with energy for making decisions or tolerating changes. He's trying to get stuff done and accomplished and I just can't process it. When will I be able to handle it? I don't know. Probably in too much time to wait.

It feels like I've lost a lot of progress in my health.

I've been laying out on the back deck in the sun as much as possible. It's not been enough to warm up my freezing toes. The sun feels great, but it's not helping with the depression the way I was hoping.

Now I can't be outside easily. All the wildfires in the west are creating lots of smoke, and that smoke is heavy here now. We're in the red zone for air quality. The sky is just... gray.

I don't know what to do. It's hard to find motivation when all I want to do is lay in bed. But when I feel good enough I can log into my game and hang out with my guild mates and laugh and have a lot of fun. All from the comfort of bed. Great friends that don't require physical energy - it's a huge blessing. They don't need to know about my health issues. I can just be normal and myself with them. But as it turns out, many of them also have health issues - it seems many of us are attracted to the game for the same reasons. 

Metaprolol Experience

In this post I explained that I was diagnosed with POTS and put on a beta blocker to manage it. I'll go into some detail on this post about what it did for me and to me.

I was prescribed Metoprolol Extended Release 25 mg. I was not allergic to any ingredients in this option, but the regular non-extended release version contained lactose. I don't know how a small amount of lactose in the pill would affect me, but I do not do well with dairy at all. The advantage of the extended release version is that I only take one pill a day, but the disadvantage is being unable to cut the pill in half if the dose is too high. I think I would have been better off with the regular version, taking a couple a day, because I think I would have responded better if I had been able to cut the pills in half and work my dosage up. In the end, however, my doctor and I decided it's not the right drug for me.

Beta Blockers lower your heart rate, so it made perfect sense to try it. What I didn't know at first was that it also lowers blood pressure. If you have low blood pressure then I'm warning you against Metoprolol.


I decided to take it at night since it makes me sleepy. The first night I took it I had vivid terrible nightmares. When I woke up I felt all the symptoms of low blood pressure: eye pressure, headache, weak, freezing cold, and out of breath. I took my blood pressure. I can't remember specifics, but I remember it was in the upper 80's over lower 50's. My heart rate wasn't any lower. Through the day my blood pressure ran low, but slowly improved until it was back to my average 100/60 in the evening.


The second night I didn't have the nightmares, but it started to make me feel slightly more depressed and darker than usual. I did wake up, again, with low blood pressure, and once again my heart rate wasn't any better. My toes were dark purple and icy most of the day. I was starting to feel even worse going from sitting or laying to standing. Normally I feel POTS symptoms about 50% of the time when I get up, but it was turning into 100% of the time with increased symptoms (mainly extra dizziness with bright light colors spinning around me longer than normal.)

By the 4th day my blood pressure wasn't quite as bad, but still around 92/55 most of the day (that was one measurement I have recorded.) My heart rate, however, was down to the 50's at rest. My average resting heart rate is 88, so that's a big drop for me. Upon standing it was going up to the 80's to 110 range. So even though my resting heart rate was lower, it didn't fix the POTS. By the 5th and 6th days the deep purple and ice cold in my toes had overtaken my feet and shins. By the 6th day my resting heart rate was back up into the 70's and 80's most of the time with a few periods of it being in the 50's. It wasn't consistent. That isn't so bad, but I was going into the 120's and 130's when standing up. The other issue is that my fibromyalgia was coming back in a big way. My leg muscles and shoulders were getting achy, tender, and felt like acid. I lost my ability to control the muscle pain.

I took it for 8 days total, and I never improved more than that. I asked my cardiologist his thoughts on this and he said it wasn't doing what it needed to, and the side effects were not worth it. So he told me to stop. He said I might be better off being untreated based on how I reacted to it. There are other options I could try, like Calcium Channel Blockers, but he didn't suggest it. He said because my heart itself isn't in danger and it's working well, I should be okay without treatment. I'm also not a fainter. If I were a fainter it might be important to try something else. But for me POTS is a cause of fatigue, pain, discomfort, and exercise intolerance. It's annoying and draining, but not damaging... we think. I'm not sure I'm ready to try the next thing anyway... exhausted from all the changes to my body!

Metoprolol was a teaching experience. Without it I feel fatigued all the time from being too revved up all the time. On it, I felt the same level of fatigue from not being able to rev up at all. It felt different. It might have been better for my body to be more calm on it, but it made it just as hard for me to function. I think I had less adrenaline to help me function while on it too.

So I'm going to do what I have been doing that seems to help: extra salt, electrolytes added in all water and tea I drink, licorice root as needed for low blood pressure, green tea as needed to cut down on fatigue (other sources of caffeine make me worse, but green tea does help), and going for walks as often as I can tolerate. I may want to try other prescriptions in the future, but I have a feeling I don't tolerate any prescriptions well due to my chemical sensitivities. I haven't had lucky on any so far for any condition...


Best part of getting off Metoprolol? My feet can feel the sun again and it feels good! They were so ice cold not even the sun would warm them up! They still turn purple from blood pooling, which is helped by elevating my feet, but not the dark purple and numbness that Metoprolol caused. 

Unrest Documentary by Jennifer Brea

Jennifer Brea made a documentary about her illness, but it isn't just her illness. It's an illness millions of us have. The documentary is "Unrest," and it's now streaming on PBS and Netflix. "Unrest" is about Chronic Fatigue Syndrome. 

My husband and I were able to watch it last night since Netflix now has it. PBS aired it, but not locally, so we had to wait for Netflix. If you don't have access to either streaming service, you can pay to rent it on Amazon and other streaming sites.

"Unrest" is an expansion of her powerful Ted Talk:




Many of you might prefer her Ted Talk, which has essentially the same information as in the movie, simply because the movie is much more difficult to watch. "Unrest" makes you watch people suffering with CFS/ME up close and personal. It reveals the reality of what being bedridden from fatigue is really like. It's not easy to watch, even as someone who has been bedridden from CFS/ME. I know the illness from the inside, having it myself, but watching it from the outside was still difficult for me. Her Ted Talk has the science and the facts in a more condensed format too, for those who want to learn, but don't want to commit to watching the full documentary.

As someone with Chronic Fatigue Syndrome and knows other people with it, I would like to strongly encourage you all to get everyone you know to watch "Unrest." What I hope the movie accomplishes:

1. Breaks down stereotypes about the illness. We are not lazy, we are not just tired, we are not just being selfish. With this illness, willpower doesn't work. We can't just "buck up" and push through. It doesn't work. "Tired" is normal. Chronic fatigue is not. They are not the same thing.

2. Encourages the funding of research on CFS/ME. As she explains, CFS/ ME receives the least funding of all major debilitating illnesses, and therefore very little progress is being made. As it is now, most doctors I've talked to have told me I just need to exercise more or go see a psychologist. The problem is that research that has been done shows that exercise can be detrimental to CFS patients, making their condition much worse. I know this is true from personal experience. And the illness is not a psychiatric one - that's what doctors say when they don't know how to treat you. I would so much rather hear, "I don't know."

3. Helps family members and friends to come to an understanding of what their CFS loved one is going through. It's so difficult to explain ourselves, mostly because people don't listen with the intent of understanding. Most people in my life try to tell me what to do to get better, but very few have asked me about my point of view with the illness. I hope this movie breaks assumptions and encourages real dialog between the patients and friends and family. As it is, it takes so much energy to communicate, and so much recovery time from speaking. It's extremely discouraging to have our energy wasted on words that no one truly listens to.

Please watch it. Help us to get help. Start the conversation that will open up people's minds to the reality of Chronic Fatigue Syndrome.


I would like to share a few personal thoughts:

"Unrest" serves as a great introduction to CFS/ME. I really appreciate the overview it gives. But that's just it: it's an overview of people who are bedridden from CFS. There is so much more to learn about it.

Many of us with CFS, like myself, are not bedridden. At least, I'm not anymore - not most of the time. Some days I am bedridden, but I'm mostly chair-bound these days. Not an office chair, a comfy reclining home chair. Yes, sitting up in a chair is a big improvement over laying down in bed. Back in 2013 I was bedridden for months, and then stuck in bed more than 50% of the time over a year and a half. If I didn't get lucky with finding my doctor I may still be bedridden. I got very lucky with finding a doctor who could help me... but he's not local. I fly half way across the country to see him, because all the local specialists I went to told me I was a mental patient and a hypochondriac. One of them did diagnose me with chronic fatigue syndrome after 6 months of going back to her complaining about the extreme fatigue. She also did the Tender Point Test and diagnosed me with fibromyalgia. She also diagnosed me with anxiety and depression after I came back to her to say that the Cymbalta she put me on was amplifying my pain tenfold and made me suicidal. Without running tests, she sent me to a psychologist. She didn't even send me to the ER after saying I was suicidal.  Most CFS patients are not lucky like me. They haven't found a doctor who can help them. They're stuck with doctors like I first went to, doctors that don't know what they're doing. Doctors with no training in Chronic Fatigue Syndrome.

My doctor is a Naturopathic Doctor, and a rather unique one (HumanNatureNaturalHealth.com) - I've learned that many people automatically dismiss anything a Naturopathic doctor has to say, so I'm careful who I reveal this to now. Someone even told me I'm hurting myself just because I'm seeing an ND and not MDs... as if I didn't already get worse under the care of MDs. But the fact of the matter is, no matter what your opinion on naturopathic doctors is, he's the only doctor who's made progress with me. When conventional medicine fails, I hope you can understand why we seek out the unconventional for help. Please don't dismiss what works. I'm not dismissing MDs either - they all have their specialties and play important roles in health care. They've helped me with other conditions, and I am very grateful for some MDs I've seen in my life. I'm about to go to another MD, a cardiologist. But when it comes to CFS, I couldn't find help from MDs.

Those of us who can work part-time were not featured in this film. I respect that. I understand why she didn't share our part of the story. "Unrest" needed to be convincing by showing the worst of the illness, and I was at that "worst" point for a while myself. I use the word "worst" lightly here, because I don't compare people's suffering. Suffering is suffering, no matter the level of it.

But I also think it's very important that people understand how hard we CFS patients are trying to keep living our lives. I work 12-15 hours a week. Some weeks that's too much for me. Other weeks, as long as I supplement correctly, I can handle a few more hours. Because I'm able to work part time, I find myself in this grey area of illness. Social Security Disability isn't taking me seriously, even though I can't work enough to pay my bills. Many of my friends and professional connections don't take me seriously, and I'm thankful for those who do take me seriously. They see me at my best: when I'm geared up for work, having saved my energy to spend during those hours. They don't see me when I'm back at home laying on the couch struggling to get up to go to the bathroom. They don't see me when I have to crawl up the stairs because I don't have the strength to walk up them. They don't see me when I'm stuck in bed until noon because my body won't wake up enough for me to get up, even though my eyes are open. I call in sick when I'm that weak, and sometimes I get in trouble for calling in sick - how can I be useful and reliable to the company when I call in sick? I have to carefully reserve calling in sick only on days when I'm doing badly enough that I can't drive. If I can drive, I can work, even if it's taking all my strength just to stand up. I hate this, because I believe in being an effective employee - why accept money for doing a poor job? I want to be able to always do my best at work. If I can't drive, then I'm sick enough to call in. I hide the rest of my reality from them, not entirely by choice, but more due to the nature of my illness. I also know how to supplement in order to boost my adrenaline enough to be able to keep working if I don't have the energy to make it, and my co-workers see this, so they know I have the ability to keep going sometimes... but when I do this, I pay very hard for it later. I need a lot of recovery time, and that recovery time can be painful to endure. It can mean I can't come back to work the next day. I'm typically scheduled for 4 hour shifts every other day, sometimes with 2 days between shifts. This works really well for me. Other people with CFS are not lucky enough to find an employer willing to schedule them like this... I doubt I could find another job in this town that would work with me this well. I can't express just how grateful I am for my job, and that's why I haven't quit, even when I've felt to sick to keep working.

And I know people with CFS/ME who manage to work full time, but they don't perform very well at their jobs. They're giving all they have just to be able to afford their home and food, but they make lots of mistakes at work and really struggle to maintain a professional image. Once they get home they can't clean, cook, or take care of personal business. They're drained. Their stories were not told either. I would love to see a follow up documentary to cover the rest of us who are not 100% bedridden.

Thank you for reading. Please share this along with telling people to watch "Unrest." Let's be heard. Let's get funding for medical research on CFS/ME. Let's educate doctors. Let's educate our employers, friends, and family. Let's connect with each other and bring more meaning and value to our sick lives.

If you would like to help take action, please sign the petition to get research funded:
https://www.unrest.film/nih-petition

Sugar = Depression

People don't want to talk about depression and suicide. I don't blame them. I always feel so powerless when my friends bring it up to me. I know trying to cheer them up will just push them away. I know that when I'm feeling depressed I'm too zoned out to even talk about it. It's such a tough issue.

I'm currently wearing a heart monitor, a Zio XT Patch. I have a lot to write about to explain what's going on it, but I don't have the energy right now. To make my point, I do need to explain that I'm relaxing a little (not a lot) on my strict diet because we want the heart monitor to record what I'm like without all the medical aids, including my diet.

This has meant I've let myself eat sugar. I bought the SO Delicious chocolate covered coconut milk ice cream bars because the only thing in them that's not allowed on my diet is sugar. They were a safe sugary option for me. They're super good! So I ate too many over the last week. Each time I eat one, I'm noticing what happens a few hours later: I get very depressed. Not sad. Just mentally everything goes black and the only emotion that comes through is a mild current of anger. The "everything is stupid" type of anger, like I'm a teenager again. It comes along with a headache. It's awful. I lose sight of myself in this blackness. Then eventually it turns into hunger and total weakness - probably low blood sugar. I'm saying this now because the feeling is starting again... because I ate the ice cream a few hours ago. It's hitting me.

I still get depressed without the sugar, but it's really blowing my mind that sugar has this profound of an effect on me. It has a direct correlation with serious depression episodes. I'm not entirely sure what to do to get out of it - the past several days this week with the sugar depression I just had to go to sleep and sleep it off. Of course sleep doesn't come easily. I'm not supposed to take any sleep aids either, but I've had to take some magnesium to calm the anxiety in my body from the sugar so it was possible to sleep. I'm afraid of how I'd be with both sugar and a lack of sleep.

I also ate a muffin made from flax and oats, no other grains. The oats alone were enough to know what happens to me when I eat grains: fibromyalgia flare. It hurt. My skin, especially  my legs, got really tender to the touch. Waves of achiness went through my muscles. And I hate to say it, but it's true... taking the Eucharist has Mass has done the same thing to a much lesser degree. Grains are truly my enemy.

But why did I also mention suicide? Because I just binged on an anime on Crunchyroll called "Orange." If you're feeling depressed, go watch it. It's powerful. It's about a girl who sends a letter to her past self to coach her through her social anxiety issues in order to get her to save the life of a friend who will end up committing suicide. She has to overcome her own social fears to be strong for him, and he has to want her help - all the while he hides his deep depression from her. I won't spoil anything. It was really hard to watch, but also really inspiring and beautiful. It had a lot to say about the value of good communication skills.

Back to my heart monitor...
It hurts. All my doctor's supplements for me really have done a lot of good for me. I've been off of them for a month now, maybe longer? I'm not clear on the time frame at the moment. I've gained 10-15 pounds (the scale is different each day), I'm weak and totally drained, adrenaline takes over when I need to work and the adrenaline feels gross and dominating, I can't sleep well, my hair stopped growing much, bruises are taking weeks to heal, I'm dizzy really often, vertigo almost daily, my gut is screaming at me often, my heart is palpating and fluttering too often, I'm often panting for air, I'm dehydrated and can't seem to drink enough water... I'm going downhill fast. I'm so looking forward to going back on my supplements. They're a hassle to take. They're expensive. But they're all I've got that's working. I function so much better on them. Not perfectly well, not even close, but so much better.

I'll write about everything else later.

Video Update/ Disability Process

I have needed to talk about or write about a lot that I've experienced in the last few months, but have been so incredibly fatigued. So today I decided to do video blogging. I made a playlist of 3 videos here:

Kindling Health Vlog Playlist: http://www.youtube.com/playlist?list=PLMMJaf2l9ztXEgTmt_IBt2NwWC0ZmFN8m

I personally don't like to watch blogs, I greatly prefer reading. If you don't like this format, I understand. Sorry. But for my mental health I needed to journal somehow.

Latex Mattress Review Part 2: The Bed and Bedding Review (Updated!)

If you read part one of my review on my new latex mattress, you will have learned the need for choosing a natural non-toxic mattress. I encourage you to at least skim that post before reading this view, because this review is based on my need for a natural bed.In this review I'll cover 4 bedding items I bought from Sleep On Mattress: The Pillow, Foundation, Mattress, and Mattress Pad. In the upcoming Part 3 I'll discuss other pillows, sheets, and blankets. Bedding should not be as complicated as it, but because it is, this review deserves 3 parts to cover it all!

The Pillow: Malouf Convoluted Contour Latex Pillow
(Click the link to see the pillow on the company's website)
Yep, the name is a mouthful, as my husband was quick to point out, but bear with me! After too many dollars and too much neck pain from buying several different pillows online, I decided to try something novel: going into an actual store and trying out pillows before I bought them! The problem is that I can't step foot into most stores without getting sick. Thankfully for me, Sleep On Mattress is a store in Bismarck, ND, where I live, that caters to people like me. They offer natural synthetic-free bedding, and they're located in a mall that isn't heavily scented (like most malls are - I normally would never dare step foot into a mall.) I learned about them because they advertised their organic latex beds through the health products store I work at, Terry's Health Products. Amazingly, the very first contoured latex pillow I tried in the store ended up being a winner! It's a Malouf pillow, but done right (I tried others of this brand first, which I'll get into in Part 3.) It is made from natural talalay latex in a polyester case, so I removed the polyester case and replaced it with an organic cotton zippered case:

I love this pillow. So. Much. One side has a higher loft than the other and it's contoured, so it supports my neck if I'm on my back or side and it doesn't put too much pressure on my ears. It's soft and supportive without being hard and firm, meaning that it keeps my head at the right height and angle all night, whereas other latex pillows I tried let my head sink down to the mattress or didn't let my head sink in at all.

The latex on the pillow falls apart very easily, and that is my only complaint. It needs to be treated gently. Sorry folks, this will not work in a pillow fight. In simply switching out the cases I lost lots of small chunks of latex. You can see in the photo that some of the points are missing. I haven't had any problems with losing latex since then, and it hasn't affected how comfortable and supportive the pillow has been for me.


The FoundationI do not have a brand name on this foundation, my apologies. This was the hardest part of purchasing the new bed. Let me back up a bit. My husband was willing to try a new mattress if it meant improving my health, but he did not want to lose the frame we already owned. It's an upholstered queen size frame with a built-in head board that looks very nice. I also like it, so I agreed we could keep it (even though it's all synthetic and probably has plenty of flame retardants, it's old enough where it has off-gassed, the mattress doesn't actually touch the frame at any point, and we hardly ever lean up against it.) That meant we needed to buy a traditional foundation to support the mattress, because the frame is meant to hold a foundation.

(Latex and Memory Foam mattresses cannot use a box spring. They need to be supported by a foundation with no more than 3-4" between each slat. The mattress will wear out too quickly on the wrong type of foundation or on a box spring, because they'll allow the mattress to sink in when it should never sink in at any point.)

I looked into a couple of different options: a Savvy Rest Insert without any synthetic material concerns (sold by Sleep On Mattress), a much cheaper basic wooden foundation with a removable synthetic cover that had flame retardants (I don't have a brand name on this) (also sold by Sleep On Mattress), and a solid wooden Amish foundation that was on sale on Amazon.com. If money were not a barrier, I would have chosen the Savvy Rest Insert without question. It really was the right choice for us, but our finances said otherwise. The basic affordable wooden foundation with the removable cover made me a bit nervous - did the wood absorb some of the flame retardants? For someone without MCS it would have been a great option. The Amish foundation on Amazon looked like it would fit my needs very well, but there were just enough reviews cautioning me against buying it. Then we were presented with a new option: Sleep On Mattress had one metal and wood collapsible foundation for sale. The price was right at $130, it appeared to be right for our needs, and it was easy to transport because of the collapsible frame. My husband chose to go with it. Sleep On Mattress does not normally carry it, but I bet they can order it for you if you're interested.

The foundation has been working just fine, but if I were to make the decision over again, I probably would have tried to convince my husband to get the Savvy Rest Insert instead.


Setting this foundation up was not at all as easy as it was supposed to be. This photo shows the foundation after we opened it up from the collapsed form. We then attempted to put the two horizontal support bars on. The idea is that the end of the bars go into holes - they should slide right in. The reality is that the fit was very tight and they required a cloth and a hammer to force in.



Then we inserted the wooden boards across the top. The ends of the boards have plastic caps with two little pegs in them. The pegs go into holes in the metal frame to support the boards. 3 of these pegs were broken off. The construction was fairy poor on these pegs, and I wouldn't be surprised if most of them break off in tearing down the foundation - if we ever do that.





We then put an old sheet over the top of it as the cover. It came with a synthetic flame retardant infested cover, but the cover came separately so we simply didn't put it on.

Even though the wooden slats are flexible and look thin, the foundation has worked well. It is supporting our 150 lb latex mattress.

...But it's also a bit squeaky. This was my greatest concern when buying a metal foundation, and it proved to be a bit of an issue. The squeaking is only on my side of the bed, and I only hear it when I get in and out of bed. Thankfully it never squeaks once I'm already on the mattress. A wooden foundation can squeak too, but squeaky metal tends to be higher pitched and it echos through the rest of the foundation.


The Mattress: Sleep On Mattress's own Latex Mattress

The mattress we chose to go with is Sleep On Mattress's own brand of a 9" Dunlop Latex mattress with an organic cotton and wool casing. The wool is the fireproofing that brings it up to industry standard, so they didn't have to add synthetic flame retardants. They have it manufactured for their own store. They explained to me that they were searching for a natural latex mattress comparable to Savvy Rest (an organic latex mattress company that's top tier), but with a lower price tag. Making their own ended up being the most economical, and the mattress is therefore more affordable than the Savvy Rest. It is normally $2,000 for the queen size, but in exchange for this review I was given a reduced price. If you are interested in this mattress, but are not from Bismarck, don't despair! They will ship!

I was told that they are in the process of making different models of their own store brand of latex mattress, some with gel and foam added in, and with different heights. So if the mattress we bought from them doesn't sound right for you, ask about their other models. The owners are interested in working with you to find what you need instead of pushing their agenda on you. They'll help you find what you need, and they do understand the issues between natural and synthetic mattresses!

When we purchased the mattress I expected this review was going to be very easy to write. I expected within a week I'd be able to write all about it with ease, but that hasn't been the case. 3 weeks later and we're still trying to make a decision on the mattress! This isn't a bad thing, and I'll explain:

First and foremost, is the mattress solving my MCS problem? Was it worth purchasing a natural mattress to better my health? YES! On the old memory foam mattress I regularly fought a rising heart rate every night I went to bed, and if I couldn't fall asleep before my heart rate skyrocketed, I'd be doomed to toss and turn and take even more herbal sleeping pills to try to knock myself out. I regularly had stress dreams and nightmares. I would often feel high anxiety as I was trying to fall asleep and again when I woke up. I experienced more fibromyaliga pain in that bed than anywhere else. I also had more skin rashes when I slept in that bed.

I haven't had a single nightmare or stress dream since sleeping on this new latex mattress. I have not experienced the skyrocketing heart rate on most nights (but I had the problem on a few nights after a food reaction or being in a public place where I was reacting.) I'm waking up feeling peaceful, not on high alert. The fibromyaliga pain has been greatly reduced, and I'm feeling it more after eating the wrong foods and not so much in bed. My skin rashes are reduced, but not gone (but there are other causes, such as the mycotoxins in my body.) Yes, I feel SO MUCH BETTER on this mattress, and my sleep is higher quality.

Secondly, is it comfortable? Yes... The floor model of this mattress was softer than the one we received. The floor model was about right for us, in that it was firm enough to give support, but comfortably soft around pressure points. My hips and shoulder sank in the right amount. The mattress we received was definitely more firm. It didn't let our pressure points sink in much, and my husband and I both woke up stiff and sore for the first week. The longer we sleep on it, however, the softer it gets. We've had it for 3 weeks and both of us are less stiff and sore, and I'm feeling my hips and shoulders sink in further. At first we were seriously discussing buying a topper to soften it up. Sleep On Mattress offers a soft dunlop latex topper in 2" or 3" that is of the same quality as the mattress itself. We chose not to purchase the topper because the mattress continued to soften up. It's still not as soft as the store model. I went back into the store and tried it out and I could immediately feel the difference. It is, however, finally feeling comfortable for me. If my husband decides it needs a topper then we'll go with a 2", not 3", because we both like a slightly firm mattress. 3" would probably soften it up too much. All we would want from the topper is softer pressure points.  (Update: we bought the 3" topper, and it's so so so so much better than expected: please see my review of it below.) If you're the type of person who needs a firm, but comfortable and cozy, this mattress will probably be perfect for you. It's not nearly as firm at the floor, thankfully, but if you feel best sleeping on the floor then you're probably not shopping for a mattress anyway.

One adjustment I had to make to reduce my shoulder pain on the new mattress was lift my pillow up a bit. I'm a side sleeper, so a little more loft was all it took. I did this by adding a homemade organic cotton pillow under my latex pillow. I made it a while back to try to add loft to other pillows I was trying to make work for me, but that failed because the pillows I was trying to make work were simply wrong for me. I made the pillow very flat, so it only adds about half an inch, but that was enough in this case. I'm noticing that as the mattress softens up with use the pillow is starting to feel a little unnecessarily high, so it might continue to soften up enough that I no longer need to use the second pillow.

Third, how easy was it to set up? Well, let me be clear: this is a 150 lb mattress that comes compressed and rolled up into a tube. It's not easy to transport due to the weight and awkward length. Once it's unrolled, it's like trying to move a queen sized piece of Jello that weighs 150 lbs. Once the mattress is set up, leave it set up. Don't plan to move it. My husband and I were able to carry it out of my truck, up the stairs, down the hallway, and into the bedroom. By "carry" I mean slide on the carpet as much as possible. We were able to unroll it, get a full encasement allergy cover on it, and then get it in place on the bed. Nether of us are that strong. Neither of us want to do it again. But it was well worth it, and we quickly forgot about the hassle after a few nights of sleeping on it. And if setting it up yourself really bothers you, have the guys at the store do it for you. ;)

It came in an awkward box:



It was plastic wrapped to keep it rolled up and compressed:




Removing the plastic made it quickly decompress and unroll, before we could control the process. First thing we did was slide this allergy protector on it, which was the biggest pain of all. I'll explain which allergy cover I got in Part 3. We had to lift the mattress and pull up the cover an inch at a time, which was very tedious and difficult. I forgot to get a photo of the mattress before the cover was put on, so I pulled back the cover for this photo so that you can see the organic cotton and wool casing. Notice how the mattress falls like jello off the end of the foundation to the floor:

Set up and made our bed (forgive all the clutter, we had to push our stuff out of the way to set up this bed). As you can see, it's thinner than most mattresses. Our former mattress was 12" thick, and this is 9" thick. Big difference! We're closer to the floor, we don't have to jump up onto the bed to sit on it, and best of all, we're not stretching out our sheets! We have deep mattress sheets, but even they would come untucked on our old mattress. Our blankets hang further off the sides of this bed, which means we no longer have cold air attacking our legs in the middle of the night!

Final verdict (which I will update in another few weeks to see if it softens up more):

The mattress was worth it! While I would prefer it to be a bit softer, it is comfortable now that it's had time to soften up. I love that we have the option to add a latex topper of the same quality if we choose to soften it up more. The latex feels better than the memory foam in that I can adjust my sleeping position on it easily, whereas the memory foam mattress wrapped around my shape a bit too much to make it easy to move. I love that I'm getting better, deeper, more restful sleep on it! I'm not reacting to the mattress at all, so my body can actually relax at night!

If you're intrigued by all the benefits of this mattress, but the firmness worries you a bit, Sleep On Mattress does sell other latex mattress options. They carry a Talalay line that has some synthetics, but is mostly natural. They also carry the top-of-the-line Savvy Rest mattresses, which are certified organic latex mattresses. They had a couple options in the store to try in this line, and they have different feels. Again, this store is awesome because they will work with you. And they do ship! You don't have to live in Bismarck to buy from them!

UPDATE 12/22/16 - Latex Topper:The mattress continued to soften up and my body began to adjust to it. I actually found it to be comfortable and would have been happy with it as it was. My husband, however, still found it to be too firm, so we ordered the 3" soft topper. He decided against the 2" because he wanted to make sure we bought the best topper and not take a chance on a thinner model that might not have been enough for him.

I'm being sincere when I say that the mattresses was comfortable before the topper. But I'm also being sincere when I say that the topper is an AMAZING addition! I was worried it was going to soften it up too much, but this latex is amazing in that it softened it up a lot for my husband (who is obviously heavier than I am) and didn't soften it up much for me. The topper is very supportive, but lets pressure points sink in easily. I was worried about losing support by going softer, but I didn't lose any support while gaining pressure point relief! I stated in the original post that I needed to prop up my pillow so that my shoulder wasn't squished on the original mattress. I do not need to prop it up now. This topper lets my shoulder sink in the perfect amount and my head rests perfectly on the pillow. My husband went to the chiropractor, finally, and got rid of his back pain (for now - he needs go to regularly.) So he can say for sure that this mattresses and topper is not giving him back pain. He's sleeping very well, waking up feeling good (not stiff and achy like on the mattress before the topper), and is actually starting to compliment the bed!

This topper is normally about $400. Don't fear the price tag: it's worth it. Remember that latex can last 15-20 years if you take care of it. Most mattresses only last about 5-8 before you really should look into replacing them. So investing an additional $400 into a bed that is safe, healthy, won't make you sick, very supportive and comfortable, and very long-lasting is an excellent deal.

The ONLY thing I'm a bit sad about it is that we now have a 12" mattress + topper. Many of you might think this is better - it all comes down to preference. My husband likes the height better. For me it just makes it a tiny bit more challenging to put my sheets on. They are now a snug fit. I'm only 5'5", so I have to jump up a bit to crawl into bed.

I, of course, have photos to share:

It came in a much less awkward box. They were able to fold the topper in half before compressing it and rolling it up, so the box was actually very manageable. I could carry it up the stairs into the bedroom myself.


I was able to unroll it on the bed because because it wasn't awkward, unlike the mattress. The mattress was difficult to set up, but this was very easy.


It unrolled folded in half. What you can see in this photo (which I forget to get a good photo of for the mattress itself) is the organic cotton cover. This is the exact same cover (and type of latex) as the mattress has.



It does add some height, as you can see. You can also see how much padding it gives in order to soften up the mattress. Thinner versions are available (they're also cheaper), but I think it's good to see what the full size looks like when making a decision.

  (Sorry, excuse all my pill bottles in the background. I meant to clean up the bedroom before taking photos, but I only had enough energy to set up the topper.)



The Savvy Rest Cotton Mattress Pad:

I didn't purchase this with the mattress. I understood the benefits of it, but I thought the allergen cover might be enough for my needs. What changed my mind was reading up on how to care for a latex mattress, and I kept seeing that body sweat and heat can slowly deteriorate latex over time. I want this mattress to last me as long as possible (I've read 15-20 years when cared for correctly,) and I decided that I really don't want to have to wash the allergen any more often than necessary because it is such a pain to get on. The mattress pad is very easy to take off and wash, and it will collect any body fluids that get through the sheets. What really put me over the edge and made me buy the pad is when someone told me that they had a latex mattresses that molded. This really confused me, because latex is naturally mold resistant, and that was one of my biggest reasons for choosing latex over another natural mattress. She was not using a mattress pad. I wouldn't be surprised if the latex wasn't molding, but body fluid that got into the mattress was molding. She had mold toxicity in the past, and mycotoxins do sweat out of out of people with mold in their bodies. Either way, this made me decide to buy the topper. I do have a mycotoxin issue in my body, and I don't want mold to grow in my new safe mattress.

The topper is very nice: it's 100% undyed organic cotton with a stitching pattern to keep it from bunching. It is made slightly over sized so that it has room to shrink after washing. I washed mine in cold water with plant-based non-toxic detergent, and then I dried it by draping it over two dining room chairs and placing my air purifier under it. The air purifier creates quite the breeze on the high setting. Even after washing it properly, it did shrink to exactly the same size as the mattress. So that wasn't a problem, and it was very easy to care for.

I thought it might add a soft layer to the mattress, but it did not. At first it actually made the mattress more firm, but that was because I tied it too tight. After loosening the grip of the ties the mattress felt the same as it did without the pad.





Thank you for reading my review! Comment with any questions, and I'll be happy to answer them. You can look forward to Part 3, which will be on the bedding (blankets, sheets, etc) in a week or so. Let me get past Thanksgiving first. :) (Update - that might come after Christmas. This month is too stressful for me!)

Thank you so very much to Robert and Mike at Sleep On Mattress for this amazingly healthy mattress and for your wonderful high quality service! I've really enjoyed working with you both, and I cannot recommend your store enough!