Privilage and (Dis)Ability

This is a follow up to my last post.

There are several reasons why I'm careful and guarded about who I give my energy to, but one of the biggest reasons is that I am a highly sensitive and empathetic person. I read people's energy, and it affects my own very quickly. This is dangerous for me because I don't have much energy to begin with. If someone is full of joy and positivity, it overwhelms me and makes me feel numb. If someone is full of resentment and anger, it spikes my adrenaline and makes me feel weak and worthless. If someone is full of melancholy, I feel a kindred spirit that I'm safe around because I'm not being met with expectations from them. I need to be around calm, relaxed, and laid back people to feel my best. People who are full of drive and determination, want to be too helpful, want to solve problems, want to vent and let off steam, or just want to have too much fun all overwhelm me. This doesn't mean I don't respect when people feel these ways. I am not asking you not to feel these ways, I simply need to guard myself from these feelings to protect myself.

If you know me personally, you might remember I used to be someone eager to analyze the problems of the world and try to come with explanations to understand them, maybe even come up with solutions to solve them. I wanted to talk about politics, religion, world events, and major news stories. I enjoyed thinking through world problems so much that I pursued a degree in Theology.

I can't be that person anymore. I am so overwhelmed with living day to day in my own skin, that I'm unlikely to have an empathetic and caring response to any world problem. You tell me children are dying every day from starvation in that country? I put up a wall immediately. If I choose to give care to this statement I'll be too sick to function. The emotions will exhaust me. You probably expect me to want to talk about how to solve this problem, and then appeal to my empathy and ask for my help in putting a plan into motion, or at least complain about the people who don't help. I can't do this. I can't feel my heart break for every suffering person in the world. It will cripple me. I need my energy to go towards standing upright, talking, digesting, doing chores, working my part time job, managing my pain, and staying on touch with the most important people in my life. If you ask me to spend my energy worrying about dying children that I have no ability to help, you're asking me to not have energy to take care of myself.

You want me to support Black Lives Matter, join the Me Too movement, join a political camp to either praise or hate on President Trump, become an activist for a controversial organization like Planned Parenthood (pro-abortion) or First Choice Clinic (anti-abortion), have a strong vocal opinion on vaccines, participate in Pride events like parades, stand on my Capitol steps protesting injustice with you...

You want me to be what you want me to be, a soldier in your activism army, and you're not listening to me. Yes, I live in the USA, the land of "tolerance," yet with extreme amounts of intolerance. I live in the land of having the privilege to be tolerant or intolerant. You want me to use my privilege to stand up for or against something. You want me to use my privilege to solve problems.

I can't.

And you're not listening to me.

I don't have the privilege of having energy to participate in the world. I wish I did. I have a whole lot of care deep in my heart and soul that I want to give.

I am not a cold-hearted closed-off person naturally. It's not my nature to ignore problems. I respect my body and soul's need to be calm and restful in order to live my life to the fullest I can in this condition. I am going against my own needs if I choose to get riled up over world problems. I need you to go solve those problems for me. I'm going to give my love, support, and respect to those of you who use your privilege, a.k.a ability, to go solve those problems.

Because that's the definition of privilege: Ability.

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

So in other words, I don't have the ability to spend energy on solving problems in the world.

I want you to stop viewing me, a white female college educated adult living in middle class USA, as a person of privilege and ability. I want you to start viewing me and people like me the way you view all the other minorities you're so concerned about. I am in a minority, one that is grossly mistreated: The sick and disabled.

Thankfully, there are activist organizations who are rallying the privileged/ people with ability to help people in my minority group. Next time you're looking for a world problem to solve, please consider helping those who don't have the ability to help themselves.

These are organizations related to illnesses I have. Please consider using your privileged energy to care about world problems on these organizations:

Myalgic Encephalomyelitis (ME)
Millions Missing

Postural Orthostatic Tachycardia Syndrome (POTS)
Dysautonomia International

Endometriosis
Endometriosis Foundation of America

Multiple Chemical Sensitivities
Chemical Sensitivity Foundation 

I have wanted to write a post like this for a while, but I have worried about sounding like a fraud. I'm in a very good situation, considering I'm suffering from these illnesses. I have a good roof over my head, access to high quality food and water, husband and family who are very supportive, I am capable of working up to 12 hours a week (most of the time, I call in sick more than I like to), have been able to see really good doctors, and won my disability case. I have a lot more supporting me than the vast majority of people with chronic debilitating illnesses. I am extremely grateful, because I would still be 100% bedridden (if even alive) if not for all the privilege I have in my life to support me. I really want others with chronic debilitating illnesses that do not have this much support in their life to have more support so that they can be helped. This is my life goal now: finding help for the helpless in this minority group. These organizations make it possible. They help people who cannot win their disability cases despite being 100% unable to work, do not have family support, don't have roofs over their heads, do not have access to quality foods or water, cannot see doctors due to cost or accessibility, can't find a doctor to take them seriously and help them, and want to give up on life.

You want empathy from me? Give some to me and people like me too. I hope you understand why I'm too overwhelmed now. Thank you for listening.

The Problems of Privilage

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

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

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

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

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

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

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

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

So I challenge you:

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

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

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.

Product Review: Computer Glasses, Gamma Ray vs Gunnar

You may have heard about, or already using, blue light blocking computer glasses. They're glasses with an amber tint to the lens that filters the blue light from screens.

Why wear these? Blue light is what disrupts our melatonin production (making it hard to fall asleep at night), gives off the wrong circadian rhythm cycle messages in our eyes, and creates a lot of the eye strain from staring at screens. There are all sorts of studies on this, but Harvard has a good simple, fast article about it.

I can't use my phone or computer for long without wearing these glasses. It doesn't take more than a few minutes for me to start squinting, getting red eyes, tears start producing... and before I know it the dreaded screen headache. It was never that bad for me until recent years, after developing these illnesses. I used to stare at a computer for hours and hours during my teens and early 20's without much complaint. I'm a gamer, what can I say? But now I have to use screens in small doses or wear my computer glasses.

For a few years I've been wearing a pair made by Gamma-Ray, which I bought on Amazon. This particular pair isn't sold anymore, but the brand is pretty much the same, you just choose the frames you like.

They help a lot, and I've relied on them. They've served me well. But I was never entirely happy with how easily they smudge, and how hard it is to clean the lenses. I often just put up with feeling like I have a film on the lens. I've also been unhappy with how they're flat, letting light in from the sides. If I'm near LED lights (which also affect my vision like screens do, so be cautious about putting them into your home if you're light sensitive), the light from them hits my eyes from the sides. Most of the time this isn't a problem.

But I started to question if other brands really were making computer glasses better. There are a couple name brand companies that claim to do it best. Gunnar and TrueDark (Bulletproof's Dave Asprey supports the TrueDark brand) both are the elite brands, and both offer glasses with curved lenses to protect the sides of your eyes too.

I found a pair of Gunnar glasses on discount, so I decided to buy it and try it out. I bought the Blizzard Heroes of the Storm (video game) themed glasses, lol. Gunnar makes glasses for specific video games. Anyway, they have larger lenses than my other pair, and they are curved. Also, the frame is very thin, and my hope was that I wouldn't be looking at the frame in my peripheral vision like I do with my Gamma Ray glasses.



They're ugly as sin on me! 😀 lol

But that doesn't matter so much. For a pair of glasses that was originally around $80, I'm actually not impressed.

First of all, the frames feel cheap, like a toy. I worry that they'll be easy to break.

Secondly, yes, they are curved lenses, but not as much as I expected. They do offer a slight advantage in width over the Gamma Ray glasses, and I do get more eye protection. But not as much as I was hoping for. The problem is that the curvature makes me really dizzy! If I'm looking straight ahead at the screen there is no problem, but I cannot walk around with them on. They give me vertigo like nothing else does!

Thirdly, the lenses truly are better. There is a noticeable difference between the Gamma Ray lenses vs these Gunnar lenses. Gunnar is known for having the best lenses, and I understand why now. It's like I'm not looking through a lens at all. They're very clear, and I don't see the frames in my peripherals. They definitely block out the blue light. It doesn't look like there is an amber hue while I'm wearing them, but the screen looks very purple to me when I take them off. They simply do work better for me, even though the Gamma Ray glasses are more comfortable and don't make me dizzy.

Gunnar:


Gamma Ray:



Can you see the difference?

I was happy with the Gamma Ray for years. They do work, they significantly cut down on eye strain and redness. But the Gunnar filter better. I don't see the amber color when I'm wearing them, my screen still looks white. It just doesn't look as glaring, bright, and shiny.

Ideally I'd rather have a pair of Gunnar glasses that have all the features I like without the way the lenses are curved to make me so dizzy. I'd also love a pair that isn't black and has a more feminine shape. I'm asking for too much, aren't I? Sigh.  

Product Review: Fitbit Alta HR 2

 I have been extra unwell this month, but I have several things I want to write about before I forget to. After all, this blog is to help me chart my progress as much as it is to help you, my readers, find your own path based on my experiences.  

I decided to buy a few things for Black Friday, one of them being the Fitbit Alta HR 2. This review will look at it not for fitness or athletic reasons, but almost strictly for how well it helps keep track of heart rate issues.

The reason I, as a person diagnosed with POTS and Inappropriate Sinus Tachycardia, have been so hesitant to even bother investing in a tracking device is because they simply haven't been good enough. They're still not good enough. The new Apple watch might be good enough from what other people have told me, but I really don't want to buy any Apple phone or PCs or tablets to pair it to. What I mean by "good enough" is that they are not accurate enough measuring HR on the wrist (a chest strap is still the most accurate), but also that they don't record HR often enough and miss when the HR spikes. I also am getting really burned out on this whole chronic illness problem I have, so the constant reminder that I have problems isn't the best for my mental health. The problem is, I was constantly reminded I have health problems even without wearing a tracker, so is there really a difference if I wear one? Maybe it's more fun for me to see and track details about my problems as they come up?

I decided to go with the Alta HR 2 for one main reason (other than the major sale price): it will take continuous heart rate measurements. Most trackers only track while you're working out, if you put it in work out mode, and capture your heart rate every 5 minutes or so. This one will show me my current HR every time I look at the Fitbit itself. I did have to program it to be in "continuous" mode, it doesn't automatically do that, but it works fairly well.

I've used this for a couple of weeks now. It already revealed something that I've learned from my Oura Ring, except that the Oura only measures HR at night. This is measures through the day.



I was in PMS when I first started to wear the Fitbit. It showed that my average resting heart rate was around 80 during PMS. I started my period on Sunday, December 9th. See the difference after that day? My average resting HR went down to the lower to mid 70's. My Oura Ring is still much better for using HR to track my period because it's measuring HR only at night, when I'm still. Going to work having an active day doesn't factor in to affect my lowest heart rate. My Oura also gives other good tracking info for my period, like body temp and respiration rate changes. If you're looking for the better tool to track your period with, I'd recommend the Oura Ring over Fitbit.

The green in the HR chart is when my heart rate is normal. When my HR is above 94 bpm it turns yellow, which is the "fat burn zone." I have to laugh really hard at the fact that I'm often in "fat burn" for 5 or more hours every day... and I have fat to burn on my body! I'll show more details about this in the next photos. With this weekly chart view alone I can see that I have tachycardia problems. If I wanted to, I could change the fat burn zone to start at 100 bpm, and then all the yellow would only show when I'm in tachycardia. The medical definition is that a normal resting heart rate is 60-99 bpm. But if you're just sitting on the couch listening to relaxing music and your heart rate is 94-99, don't you think that's too high? That's why I'm leaving it set at the default 94 bpm. I definitely feel like my heart is working out at 94 bpm.

So, is this Fitbit helpful for POTS? (POTS being an increase of 30 bpm or more when going from sitting to standing.) I'll show you in photos why it's only mildly helpful, and why I wouldn't insist any POTS patient go out and buy one.

Here is a day when I was very symptomatic.



The problem is that each point on this chart is about 5 minutes apart. I watched as my screen on the Fitbit showed 150's and 160's, but those numbers don't show up here in the app. It's because when I peak, I only stay at that high HR for maybe a minute or two at the most. Not long enough for the Fitbit app to record it. It happened to catch that I was near 130 in the evening, but what if that peak was actually in the 150's? So yes, the app shows that something wacky is going on, but there are not nearly enough details to actually use the information. If I were to want to use this information medically, I could not. It might be enough to convince a doctor to prescribe a heart rate monitor, like the Zio Patch I already wore for 2 weeks.

But let me show you the day when I felt the most normal/ healthy since wearing my Fitbit.


I did not work on this day, and I was very restful all day. It's a big contrast to the last day I showed you where I was very symptomatic. The data can give a decent overview of which days are better than others, as long as you're not trying to rely on the finer, often more important, details.

What I'm finding is that the most helpful feature, by far, is being able to simply look at the screen and see my HR. I've compared its readings to my pulse oxygen meter's readings, and they're almost always the same.


Most of the time. When I'm symptomatic or my HR is changing too quickly it just shows me a few dash lines instead of a number. There have been plenty of times when I wanted to know where my HR was, but it couldn't read it. My pulse oxygen meter has the same problem - I can't trust that it will actually pick up a reading either.

As far as using the Fitbit for steps, food tracking, water logging, period tracking... that's not really what I'm using it for. I greatly prefer Clue for period tracking, and the feature on Fitbit is very irritating for someone who is not regular. I check my steps, but it really doesn't mean much to me. I learned what I wanted to from my steps with my Flex 2. At this point, the only thing step tracking is good for in my case is with the Achievemint app. If I were trying to get more physically fit I would use the feature, but I don't have the energy.  Food tracking and water logging? Hahaha, you really think I'm going to take the energy? I don't believe in counting calories. I believe in eating the right foods at the right times, and I'm already doing that.

As for sleep tracking? I'll analyze that against my Oura Ring later. I'm curious, but honestly I've been struggling way to much to have the energy to compare the two devices. This Fitbit does show all the same sleep stages that the Oura Ring does, but the technology is different, and I would be surprised if the Fitbit were accurate. The Oura Ring is only about 65% accurate (according to the Oura Ring user's group I joined on Facebook), and it specializes in sleep tracking.

One big problem I had right away, that I was able to change, was the band. The original silicone band that came with the Fitbit gave me eczema. This surprises me, because I used to wear a Fitbit Flex 2 for about 2 years. That silicone band did not cause a reaction with my skin. I went on Amazon and bought a pink genuine leather replacement band for $6. With my MCS issues you'd think that a dyed leather band would be more problematic for me, but nope, I've had no issues with it so far this week.

And if you're not concerned about the EMF radiation, the fact that I can read text messages on my Fitbit is pretty handy! I also like actually having a clock on my wrist too. It's a massive upgrade from the Flex 2 I was wearing. That said, I would prefer to keep my EMF exposure as limited as possible, while still actually using technology. I keep my Oura Ring in airplane mode for that reason. I could do the same for the Fitbit, but right now I'm using the "all day sync" feature.

In conclusion:

If you have the money to spend, yes, it's useful and might even be helpful, if you're not relying on accuracy. If you're tight on cash, don't worry. I don't think a monitoring device like this is essential for mild to moderate POTS patients.

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. :)