Posts Tagged ‘invisible disabilities’

There is a very common belief that it is important for people to see their bodies as part of themselves, not something separate from you, not just a vehicle you are in, but an intrinsic part of you.

I think there is a lot of value in this, specifically when talking about body image and harmful “diets” (or eating disorders masquerading as diets), the idea of one’s body as separate, and an object to fight against is part of the harmful mentality encourage by these.

I also know that for myself one of the best feelings I get from fitness is a deep sense of connection with my body, and an appreciation for what it does.

On the other hand though, I just read something about loving yourself even if you are unhealthy. My initial thought to that intro sentiment is that I see no contradiction there because I am not my body. My body can be ill and difficult, without me seeing those as inherent to who I am.

When it comes to being chronically ill, my feelings toward my body are very divergent from the mentality often encouraged in body positive spaces. I do often see my body as the enemy. I also do not love my body most of the time (in terms of function, not appearance). I also do feel like this depersonalization of my body is a mentally healthy approach to chronic illness at times. When I can’t do as much as I want, not seeing my body as intrinsic to who I am is part of recognizing “this is because my body is ill, this is not a reflection of me being a failure, or me being a weak person”.

Thus my limitations reflect back on my illness and by extension my body, not on me as a person.

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There are a lot of lists of this nature on the internet, but I want to do my own.

The Cost

This is one of the main things that inspired me to want to make this post. Being chronically ill is expensive. Between the doctor appointments, regular medical tests, and prescription medications, plus the non-prescriptions medications. I’m not even talking here about the hidden costs like missing work because of being ill.

It’s not just how much it costs, but also the consistency of it. This comes up a lot for me in discussions with people about certain medical costs, and I realize that we look at things in a very fundamentally different way based on our health backgrounds. I find this with family a lot, who know about my chronic illnesses and medical expenses, and yet they still often seem to have trouble understanding that I know these costs will exist. It’s not 100% predictable, but I can come up with good estimates of how much it costs me monthly.

For example, at my new job I had the option of putting money into a flex spending account for healthcare costs, that money can only be used for healthcare expenses but is not taxable. It used to be that you couldn’t roll over the money year to year, so it was use it or lose it, but for mine I can roll over up to $500 if I don’t use it all. I don’t know that it will end up making a big difference tax wise for me because I don’t make that much money, but I figure I might as well get some benefit from it knowing I will be spending a lot of money on medical costs. I have $50 per biweekly pay put into my flex spending account, which is actually less than what my yearly medical costs are going to be so I will probably end up upping that in the future.

Where I’m going with this though- I have had a number of conversations with my mom about this because she is always worried I’m going to lose money with it because what if I don’t spend it all? I have to remind her that there is no question for me about if it’s going to get used. For people who are generally healthy these things are pretty variable. Maybe you get sick and see a doctor maybe you don’t. Maybe you have to have extensive tests done and hit your deductible, but unless something goes wrong you won’t. For me, there is some question to some of it, if things go bad and I end up in the ER several times again- that’s not a planned expense. But I know I have doctor appointments on average once ever couple months even when things are normal. I’m supposed to have regular blood work done because of the meds I’m on which means I always end up hitting my deductible. I have medications I take every month that is a predictable cost. There is no question, I will spend more than the $1300 that goes into my flex spending account during the course of the year.

Taking medications is not bad

That I take a lot of prescriptions medications is scary to a lot of generally healthy people. Aren’t I worried about them? Have I talked to my doctor about trying to take less? What about side effects?

I don’t take these medications for fun, I take them because I need them. Can side effects be scary? Yes! It’s also scary that doctors don’t always pay attention to interactions or notify you of possible side effects. I was on one medication for years before being informed that oh yeah, kidney stones are a known side effect of them, and that’s why you keep getting kidney stones. And actually, that only came up because I discovered that information online myself and brought it up with my doctor. Because of this I try to make sure I am educated about my medications and use drugs.com to check interactions to double check if my doctor and pharmacist miss anything important or scary.

It’s also scary that medications are not always well tested on people like me before being approved for use. The medical industry has a long history of testing medications on some people, specifically white men, and assuming that those results apply to all other people just the same.

But what I’m actually more concerned about and scared of is not having any medications and being unable to function. I’m afraid of more serious medical problems resulting from not treating my illnesses.

I take my medications because I need them, not for fun.

What being “tired” really means

This one is specific to me and my experience, but I hate when people who do not have chronic illnesses act like they understand me being “tired” because they didn’t sleep well last night either. For me, being tired does not feel like just not getting good sleep.

Now part of this is that I do not in my daily language distinguish between sleepiness and fatigue, though the two are different things. Different things that I often experience at the same time though. When I say I feel tired, I usually mean both sleepiness and fatigue.

Part of being tired for me is sleepiness. It is a need for more sleep than generally healthy people normally need. It is struggling just to stay awake through the day.

It’s also fatigue. Which is much harder to explain if you’ve never experienced it. It’s a feeling in my body, in my muscles, of having no energy to do anything. It also hurts. Which is something that is hard to explain, but there is a pain that goes with severe fatigue. Being tired often means being so tired I physically hurt for me.

The connection between physical and mental health (that goes both ways)

Talking about fatigue and pain brings me to the connection between physical and mental health. My physical health causes mental health difficulties for me. But there is mutual feedback between the two in a very negative way. And trying to figure out which is which is sometimes not possible. I am exhausted and that causes me to start feeling depressed, and my depressed thinking is specifically related to my physical illness, feeling worthless because I can’t do the things I need to do, et cetera, but we also know depression can cause physical symptoms including pain. Knowing exactly which is physical and which is mental is not possible, the two are woven together to tightly.

It doesn’t go away

This is one I’ve said many times before, but I’ll say it again- one of the hardest parts of chronic illnesses is the fact that it doesn’t go away. I am tired of being sick and tired all the time but I can’t change that. It’s impossible to convey what it feels like to always feel so sick and in pain knowing it’s not going to pass and get better.

Today I took the afternoon off work (YAY finally having a job with paid time off!) to get some doctor appointments out of the way. Sadly only managed to fit two in- neurology and podiatry.

Neither was particularly exciting. Neurology was more adjusting and changing meds as usual, because my migraines still very frequent. Also my abortive prescription has stopped working for me, so switching to another (that my doctor has to try to convince my insurance to cover by explaining that their preferred medications for me were tried and not effective.)

Podiatry was for my foot pain. Mostly just suggestions to do the things I’ve been doing :-\ (insoles in my shoes, and stretches). But I also got a steroid shot that supposedly will help with the pain temporarily.

But also after my neurology appointment I got a sheet with info on “headache hygiene” with suggestions of things that are supposed to help prevent migraines which included such things as waking up at the same time every day and going to bed at the same time everyday, getting regular exercise, and avoiding skipping meals.

For me personally the one that stood out was not skipping meals. For those who haven’t read posts where I’ve mentioned it before I practice intermittent fasting- so I frequently go 16- 24 hrs without eating anything. I like this method and feel much better with it typically. So I’m curious what the evidence is that fasting will cause migraines, and has me wishing that advice like this came with citations to the research to back it up for patients who want to look into it.

This isn’t specific to just this particular piece of advice but I notice this happens a lot with doctors is that things just generally considered good and healthy become advice for any ailment, regardless of if there is evidence it is actually linked to that ailment. Just like the doctor did on Voyager.

fluids

Photo of the doctor in the television series Star Trek Voyager with the text “Everybody should drink plenty of fluids”. In context Kes, an alien species the Doctor was unfamiliar with, had medical complaints, he told her he had no frame of reference for what she was experiencing but she should drink plenty of fluids. She responded “fluids?” and he states “everybody should drink plenty of fluids”, indicating his advice was not at all specific to her complaints. 

 

It would be nice if doctors had to provide citations just like academics. Instead looks like I’m off to do my own research on this.

This started as a facebook post on this article that showed up on my feed:
 
I’m not sure how I feel about the way spoon theory has been expanded to others sorts of disabilities- as I’ve seen the types of spoons used with. It does strike me in some sense as being a very different issue that distorts the language we use when people apply the same language of spoons to things that are actually quite different, but then at the same time, I kind of feel like if it helps explain disability maybe expanding the meaning helps….
I am torn though lol, because as soon as I type that I think “but sometimes it obfuscates the issue”.
 
But that issue aside… I really could relate so much to the author’s annoyance at a friend who found that sex is the key to getting more spoons. Not specific to sex, but I have definitely had trouble with people understanding that spoons is not something limited to “difficult” activities, or chores- relaxing, fun activities take spoons too. I actually had been thinking to blog about this for awhile and just struggled with how to phrase my issues.
But I have recently run into people who seem to think that “fun”, “relaxing” activities don’t count for spoons for me, they should recharge me, they should help me with my stress not add to it. Which in terms of stress- yes, relaxing activities and seeing friends can help. But spoons isn’t code for stress, my disabilities are not code for stress. It’s not about stress. Spoons are about the energy needed for things, and that includes watching netflix on my couch.
“Just for fun/To relax” activities also, in my experience, cost more than healthy people realize, too. It’s often not just the activity itself that costs spoons but the spoons to be presentable for it- showering, putting on clean clothes, bushing my hair. I feel like people often forget the true meaning of spoon theory- which is in large part how healthy folks take these things for granted. When Christine Miserandino’s friend starts her day by “getting ready for work” Christine has to correct her- getting ready for work is not one thing, you don’t get up and get ready with a chronic illness, as she puts it:
It looks a bit different for me and probably different for many different spoonies, but there are similarities. I often wake up late, I slept through my first 3 alarms again because when I push myself too hard alarms will not wake me up, I am already exhausted and my whole body hurts but I have to force myself out of bed, then I have to shower but I have to actually plan out what I can do in the shower day to day… shaving is usually too costly for me. I do that once in a blue moon, usually on a weekend, when I’m feeling well. What I wear is based on spoons available as well. Make up and doing anything special for my hair costs more spoons and yet there is an irony that many people, women in particular, with chronic illnesses tend to wear makeup and spend more time on our hair than healthy people, because makeup and hair products and styles are camouflage for us. When things are the worst for me health-wise, wearing make up does not feel like an option. I’ve learned some tricks to try to lessen the appearance of the thinning in my hair. I wear makeup to cover up under eye bags and petechiae from vomiting, so that I look healthy. So that I’m not constantly being told how tired and sick I look or being asked what’s wrong all day.
Luckily my morning medicines do not need to be taken with food so I get to skip on breakfast in the mornings. Thankful for that.
But this is what it means to have to think about “spoons”. Healthy people don’t have unlimited energy. Healthy people can’t do everything they want or need to in a day all the time. There is limited time and energy for work, volunteering, taking care of kids, working out, spending time on hobbies, and keeping up with your chores. That’s normal. Spoon theory isn’t about managing all those activities, though they are part of it too, but it’s about all the little things that healthy people don’t have to plan out and factor into their energy reserves for the day. Healthy people have to plan out how they will manage and fit those obligations and wants, spoonies have to manage that and also make careful decisions about things like showering, dressing, what clothes we can or can’t wear that day, managing medications (I always feel an irony in needing to budget out the spoon needed for medication set up each week…. but if I come up short and don’t have it I will be screwed because I won’t have my meds ready to take for the week). It’s also about the fact that some days we have so few spoons those small things are the only things healthy people take for granted are all we can manage.

My first introduction to Jillian Michaels, before I really knew about the biggest loser or anything related to that, was looking at workout videos that were available for streaming on Netflix years back and I tried one of hers, and I didn’t finish it because her mentality pissed me off so much. Specifically what pissed me off was she stated at one point something along the lines of “I know you feel like you’re dying, but you aren’t, so don’t stop”.

tumblr_mvg0xf9wln1smdqr0o1_1280

Image of Jillian Michaels with a quote “I want you to feel like you’re going to die.”

Excuse me?

Are you in my living room with me? Do you know my health background? What makes you talking to people you don’t know and can’t see qualified to actually say that none of those people are actually in danger if they push through feeling like they are dying?

That attitude and disregard for the well being of people so disgusted me that I couldn’t stand to finish the video with her. I later learned more about her and discovered that her entire fame as a trainer is based around a total disregard for the well being of others

This is also an attitude that I see often put forth  in“fitspo”- encouragement to just push through no matter how awful you feel, and the insistence that feeling “bad” is always normal.

The truth is though, not all kinds of bad feelings during workouts are normal, ok, or safe! Pushing through some of that “I feel like I’m dying” can be dangerous! “I feel like I’m dying” sometimes is the precursor to death!

The thing is, not only can someone who doesn’t know us, what we are feeling, and what our health is, say for certain if we are really ok when we feel bad during a workout, sometimes we don’t know enough to make that judgment either!

I’m thinking about this now following my brand new diagnosis of asthma!

See, after a krav maga workout last week I started coughing, which is not very unusual for me. Though the coughing kept getting worse, was far worse than ever before. and lasted longer than usual. Maybe or maybe not related to me working out around others and feeling embarrassed to stop and take a breather when I felt like I couldn’t breath.

After this I started looking up info on coughing after workouts and talked with a few people about it, since like I said- it’s far from the first time I coughed following a workout. I’ve always before though just thought that was normal. One woman replied to me online telling me she was the same, until it was so bad she ended up in the ER and found out the coughing was not normal but rather asthma. Thankfully I got in to my pcp for the diagnosis and prescribed an inhaler before ending up in the ER.

It reminds me that sometimes feeling like you can’t breathe isn’t normal out of breath from a workout, sometimes it is a serious (if not treated) medical condition!

It is really dangerous that we have this mentality that workouts should make you feel like you are dying and the correct response is always just to “suck it up” and push through anything and everything no matter what. People absolutely can get hurt by this.

So I was feeling better recently and getting back to lifting and I started thinking about this issue….

I feel better when I work out.

Or I work out when I feel better.

Which is it?

Of course it is both, I do believe that working out can make me feel better. I also know that working out depends on how I feel, so I need to feel well enough to workout. But to say how much is a vs how much b is impossible for me to say. When I’m working out and feeling better physically… how much of me feeling better is because I’m working out? How much of my working out is because I just happen to be doing better physically at this time.

 

I don’t really have much more to say on this issue, but wanted to throw it out there. I was thinking about this recently and meaning to post about it and never got around to it until now. Which is a bit ironic that I’m posting it now since I’m actually feeling terrible because of a workout right now. I finally started Krav Maga but after the class I started coughing terribly and I’m still struggling with it more than a day later. I need to go see my doctor, it seems from my googlings and talking with others I might actually have a form of asthma. I’ve often had coughing fits that last hours after runs but I thought that was rather normal, maybe normal-normal, but at least not a problem. Turns out I might have been ignoring serious issues.

I’ve been a bit MIA recently due to a cold that knocked me on my ass and still has me completely drained of what very little energy I usually have, even though it’s been over a month now. That along with the fact that my feet still hurt a lot, leaving me limping more often than not.

This is one thing I find that people who do not have chronic illnesses don’t often understand- the problems are not limited to the direct symptoms and issues related to one’s chronic illness, but combined with otherwise minor acute illnesses- colds, flus, et cetera, can become much more severe.

This is something I’m also running into with my job working with individuals with chronic illnesses, and advocating for them which means educating colleagues about the dangers to some of my clients in close quartered public spaces like shelters.

For me a cold or a flu when combined with my chronic illnesses tends to just mean that the cold or flu lasts a lot longer than usual, and exacerbates my typical fatigue and pain. Thankfully for me though, it doesn’t typically mean hospitalization or putting my life in dangers- but for many others it does mean that! For some of my clients it means that.

So with work I’ve been trying to advocate for procedures that take this into account for my severely ill clients, understanding that what might be unpleasant for a generally healthy adult, can be life threatening to them. And doing this has really highlighted for me how in so many ways people who do not live with chronic illnesses just don’t have to think about various things like this.

So I think I mentioned before that my new job is working in integrated healthcare- integrated physical, mental, and substance abuse healthcare.

And so at work there is a lot of talk about people dealing with chronic physical illnesses, and also mental illnesses. Both of which I fall under, and feel a little awkward at times about because I’ve never had cause to mention these factors at work, and particularly when talking about people with them it brings to mind my typical awkward feelings around the fact that coworkers looking at me would likely assume such things don’t apply to me.

In a recent training we talked about this 4 quadrant model for physical health and mental health.

(phrasing here is all mine, so I may be off in terms of what the official terminology is meant to be)

Quadrant 1 is people with low physical health problems and low mental health problems- someone who is generally healthy but may need to see a doctor for an injury, acute illness, and may see a therapist to deal with depression or stress during times of particular upset in their lives but does not have a severe and persistent mental illness.

Quadrant 2 is people with low physical health problems but high mental health problems.

Quadrant 3 is people with high physical health problems, but low mental health problems.

Quadrant 4 is people with high physical health problems, and high mental health problems.

As we are talking about this, and the trainer makes a comment how we may be people who fall in quadrant 1 and how that is a very different experience with the healthcare system than someone in quadrant 4… and I’m like, actually I would say I alternate between Quadrant 3 and Quadrant 4 as my depression is somewhat intermittent (typically dependent on how my physical health is), but certainly at times quite severe.

Which is also interesting to me, in mental health there are positions for peer specialists, and in my required trainings when I started the job there was a lot of talk about how peer specialists were created to recognize the benefits consumers bring to the table, and having someone who understands these experiences. Now, I wouldn’t fit the role of a peer specialist in a community mental health setting because I’ve never been a community mental health patient/consumer/client. But one thing that stands out to me in how this is talked about is there seems to be this idea that people are either mental health professionals with advanced degrees and licensing, or people with mental illnesses (or in integrated care, you could say physical illnesses as well). There still doesn’t seem to be any recognition that the people with degrees, and professional licenses, may also themselves have chronic illnesses.

And while I’ve never talked about it at work, I do think I have a benefit in this work being someone who has chronic illnesses, not struggled with not being able to afford care for them as well. Many of the things I’m told about what clients may do are things I’ve been through too. I understand all too well when you decide you just aren’t seeing a doctor anymore for your chronic illnesses because they never seem to help and the only thing you see from it is less money in your wallet/bank account. I’ve not had prescriptions filled or been inconsistent in taking them because I couldn’t afford them. Et cerera, et cetera. And I think really understanding that situation is a benefit, compared to someone whose never been through that.

Random closing thought though, whenever I think about this topic, I also think about my pill organizers, and so I have to say, for anyone who takes a lot of medication- especially if some are rather large- I highly recommend these 7 day organizers.

My 7 day 4 compartment pill organizers after my weekly pill prep

These are the ones I have, which have 4 sections each day. They also have ones with 3 sections, or 2 sections for each day. For the record, I am not being paid or asked to promote these by the company, though if they would like to pay me for promoting their products I would be totally amendable to that. But this is just my own love for these containers, and wanting to let other people who may benefit from them know about them.

What I like them are that each day is separate and so I can carry just one day with me in my purse, compared to most weekly pill organizers you see. I’ve had people recommend those really big organizer that are one big thing with 7 days in the week and 4 times slots for each day- but that’s only really convenient if you are home all day to take them. And it may be the best option if you are, but for someone like me- I’m often out of my house at times I need to take my meds, and I can’t carry around that big, whole week organizer with me! Also most pill organizers have small compartments! Which is fine if you take a few small pills, but if you are taking pills that are large (as I do) they don’t all fit in those typical small pill organizers. These are an inch deep and really do hold a significant amount of pills for each time slot. Also they are colorful and that’s always fun 🙂 Oh, and they are easy to fill. You can pull the plastic tops off completely to fill them.

Unfortunately they don’t have any for over 4 times a day- which is something that is really lacking in pill organizing products. My grandmother used to have to take medicine 6 times a day and I remember what they did for her was use one of those week organizers and just relabeled each compartment for a time instead of a day and had to set it up for the next day each night.

TFTR-Official-Blogger-Badge-1In the clubhouse for the Fat Girls Guide to Running the focus for October is meant to be on developing new habits. Much like the social running challenge, the timing seems to fit my life fairly well.

I just started a new full time job Monday! I haven’t had a full time job in… I think 4 years. That last full time job was also my first full time job. All my other jobs have been part time. Though at times that has meant combining multiple part time jobs and being in school full time. I’d actually say that latter is a more busy schedule, but moreso there is just a different feel to it.

Of course I’m not just working full time right now, but also in school part time. And trying to juggle both of these along with outside goals with my chronic illnesses/disability. Which is a challenge and incredibly overwhelming and the truth is I’m rather concerned about attempting to do so.

This past week the juggle did not go well. Monday was my first day of work followed by my first exam in an extra political science class I decided to take… that I’m now kicking myself for not dropping because what the fuck was I thinking taking more than the necessary amount of schoolwork?

The exam did not go well. Not that I have received a grade yet, I just know it didn’t. I was so exhausted after work I could not think straight and forming coherent sentences seemed a challenge. Not a good state to be in for an exam.

Since starting this job I have not done any work on my research practicum. Also had to push back meeting with the professor I’m working with.

And I have not worked out at all this week.

My life has basically been: get up, go to work, come home, eat dinner, go to sleep, repeat. And still not getting enough sleep (for me) under this schedule, leading to me being increasingly exhausted everyday.

Assuming you’ve read this far, you may be wondering- what the heck does this have to do with new habits? Possibly also, how does this make now a good time to talk about developing new habits for you?

Well, for one thing, just getting used to my full time work schedule is a new habit for me! Balancing any other habit around that is also new in that sense. Balancing all of this is a new habit. I have a lot of new habits!

So my habits I am focusing on for October?

  • Get used to my new work schedule
  • Get used to my new bed time
  • Start setting in school work time after work during the week
  • Get used to fitting in workouts around those things
  • Work on drinking more water again

Aside from the last, these also can be considered to be in order. I’m also trying to remind myself that everything isn’t going to happen at once. Let me get used to my work and sleep schedule first. I took this week off schoolwork due to work, that’s ok, that will get added into the mix next week. It will probably be longer for me to really get into a good habit regarding workouts among all of this.

Water is already something I’m working on though! I was drinking plenty of water and in the habit of it but started to fall out of the habit. So last weekend I decided to redownload an app that lets you track how much water you’ve drank. You have empty cups and you just tap it to fill it for each cup of water you drink. it also will record the time you clicked the cup.

I set my goal on the app for 16 cups of water/ 128 ounces a day. That being the minimum for days I don’t work out. I would aim for 24 cups or water/ 192 ounces a day on days I am working out. That number just based on what amount of water I typically feel hydrated and good drinking. Also with a 64 ounce water bottle, increments of such are easy. No workout- aim for 2 bottles worth of water. Workout- aim for 3 bottles worth of water.

Since I started using the app last weekend, Friday was actually the first day I hit my goal. Since this is a habit I only slipped up on much recently I’m not expecting it takes too long to get back into the habit and after I do I will likely delete the app. The app is just helpful as I get back into the habit of it.

So those are my New Habit goals for October 🙂

Random training post because I feel the need to vent a bit about this.

I ended up taking a full week… actually more- 8 days, off from all workouts. Not planned. Seem to have picked up some virus. Nothing serious, but that’s the thing about chronic illness, catching a little virus that should normally be no big deal will completely knock me on my ass.

So the past week has been a “just getting out of bed takes all my energy” week.

As much as I try not to let it, I do get frustrated when this happens.

Starting to feel better, but not back to my normal even yet.

Still, well enough to workout today. Squats were the next up on my schedule, which was not a good fit for how I was feeling.

I’ve been doing body weights squats in my warmup before I do any with any weight at all. I do some jumping jacks to get blood flowing, then some body weight squats, more jumping jacks, then some body weight lunges, more jumping jacks, then some stretching and foam rolling before I get over to do my warm up sets with the bar.

Before I even started my first warm up set with the bar I could feel my legs shaking a bit- not a good sign. It should take far more body weight squats and lunges than that before my muscles start feeling any fatigue. But I pushed on with the workout at planned. Warm ups went well, first working set of 145×3 went well enough. Then the second working set was meant to be 170×3 but I managed only 1 rep, failing the second. I could have rested and tried again, but I knew if I tried 170 again I wouldn’t be able to lift it again. I was supposed to do 190×3 after 170 too but obviously that was not going to happen.

Instead I dropped back to a very low weight for some zercher squats to finish up with.

On one hand- I absolutely feel better to have done anything after the past week. On the other hand I’m frustrated that it was a squat workout since I feel like I’ve been making no progress at all on squats for a very long time. Which isn’t exactly true. I started really struggling with them and was scaling back my weight more and more for awhile, and just now have been able to bring it back to around where it was. I’ve been looking very forward to finally inching back forward with squats as with my other lifts (progress is slow in general for me, but inching forward is still forward), so it feels extra frustrating to me that it was squats I couldn’t get up to the weight I was supposed to.

But such is life. Hopefully my next squat workout I won’t be as fatigued and will be able to get the planned amounts of weight.