Posts Tagged ‘Disabilities’

This blog has remained pretty inactive recently. Due mainly to my continuing struggles with my health, both physical and mental.

Short update on those: Some appointments in my health system finally opened up to see a PA for medication- they have no psychiatrist currently and therapists, nurses, and PAs have all been closed to seeing new patients. I sneaked by to see my therapist months back only because I had seen her years before and therefore was able to get categorized as a returning patient. But since I hadn’t seen someone about medications, I was still a new patient and therefore unable to see anyone who prescribed meds. They have started opening that up and now have some availability for current psychotherapy patients to be seen for medications.

Anyways, so depression has been bad and just finally getting to where I can try to see if it’s helped with medications.

Meanwhile my physical health has been total crap. I have been dealing with near constant nausea, that my anti-nausea meds aren’t helping with, fatigue, feeling weak, and sleep problems.

So I have spent my night sitting on my couch watching videos on youtube, mostly ted talks and tedx talks, because when I stand I start shaking and often end up throwing up.

So that is what I was doing when youtube recommended I watch this:

Obviously nutrition is an important aspect of health. Yet sitting here too sick to stand and dealing with debilitating depression watching this my question is- so how do we make good nutrition accessible to people dealing with serious illness?

I mean, I want that answer for myself!

Getting carry out food is sometimes the healthiest option I have but it’s expensive. I now am able to get groceries delivered so that is a huge improvement, as I at least can get the food without having to sacrifice all my spoons on the process. Of course actual food that is not ready to eat or microwavable meals still requires all the work of prepping it. I actually tried recently one of those food delivery services that delivers just the items needed fora few recipes. All you have to do is cook!

… yeah, turns out that “just the cooking” is the part that is hardest for me.

Hell, right now I have some melons I got delivered that I was going to cut up and eat… except even just standing and cutting is difficult for me right now.

Instead of telling people to think more about the choices of what goes into their mouths, I think we need to consider more what is restricting those choices? What makes us choose certain types of foods over others?

And when you start talking about food as medicine, then that means thinking about the specific restrictions that chronically ill people, who rely on medications, have.

Telling me right now that food can be a better treatment for my depression than medications isn’t super helpful. I would love to eat more healthy, fresh, home cooked meals! Almost always my reason for not is because of barriers to that, which are primarily related to being chronically ill.

I can renew my medications online, and my pharmacy actually has free delivery. I don’t even have to have the ability to get to the pharmacy. Then, for pills all I have to do is open a bottle and swallow a pill. No preparation, no cooking, no standing, required. My biggest illness barrier to taking it is not throwing it up. And pharmaceutical companies actually have planned ahead for that for some medications, with many being available in non-pill formats. Besides my inhaled meds for asthma, I personally also have dissolving tablets that can be taken sublingually, and suppositories (gross, but sometimes necessary). Other meds sometimes come in injection forms.

So if nutrition is potentially as effective, or more effective, in treating certain illnesses, how do we make it something that  is accessible for all people with those illnesses? So that the illness isn’t a barrier to accessing the treatment of that illness? Doctors get that my anti-nausea meds can’t be in pill form because you can’t make “not throwing up” the requirement for taking a medication meant to stop me from throwing up. Yet that is what we do when we treat food as medicine. Often the thing we say it can treat is the very thing that makes eating well difficult!

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So this is a post I would love some feedback on, particularly from others with invisible disabilities.

My last several Krav Maga classes have not gone very well for me, and it has me wondering if I should find a way to speak with instructors about my health issues. In particular because Krav Maga classes have this borderline bootcamp feel. Though so far, when I’ve needed to slow down or even rest I haven’t gotten shit from instructors about it, so that’s good and maybe I’m making something about nothing.

The class before my last one, I had a migraine and was nauseous. I took meds before class and was feeling better, up until I started the class and it came back. So I had to take a lot of rest during the class and half ass a lot because I spent the whole class on the verge of throwing up.

I’ve also been having issues with my last several classes with my asthma due to missing my inhaler/inhaler not working. And part of the problem with my asthma is the symptoms don’t seem bad during activity. I can feel when I start having trouble breathing and need to cut back, but it looks no different than just being a bit out of breathe from working out. I might cough a little bit during an activity, but it’s actually after when it gets bad. If I push through feeling short of breath during activity, triggering an asthma attack, the coughing will progressively get worse for hours after the activity. And if it’s bad, the coughing and trouble breathing will last days. So it’s not noticeable to anyone else at the time, but is a big issue for me.

So I feel like maybe I should take time to explain somehow that due to my invisible illnesses/disabilities, I sometimes have to go slower, or take rests. I haven’t done this before now because… well I hate having to single myself out.

Has anyone else had experience with this?

inthedarknessallalone

A drawing of mine. White lines show the form of a woman sitting knees to her chest in the corner with a black background all around her.

I recently read an article online 30 Things People Don’t Realize You’re Doing Because of Your Depression. It was good and relatable for me. A lot of the things are related to socially withdrawing and trouble keeping up with basic things like cleaning the house and even personal hygiene.

One thing not in there that I think people don’t think about it the financial cost depression can have.

First there is of course the direct financial cost- costs for therapy and medications.

But, at least for me, there are secondary financial costs that I don’t think most people would recognize as being due to depression.

A big one for me is getting carryout or fast food because it is so hard to get the motivation and energy to prepare food at home. It’s not even comfort eating for me (preferring those foods to homemade ones), if I had someone to cook up some steamed broccoli for me I would be so friggin happy with that. But doing it myself… it’s time, it’s energy, to prepare the food (even relatively easy to prepare foods), and then also to clean up, and this is a problem if I’m too tired to keep up with cleaning the house because if my kitchen is a mess and piled with dishes it can make me feel more depressed and also I then don’t want to contribute more to it.

But eating food from restaurants all the time is expensive! Fast food is cheaper but not as healthy so I tend to get carry out/delivery from other places were I can get some better food options.

There is another aspect to it as well which is just managing to give a damn about financial planning for the future. Because depression tends to make me feel like the future is crap and who even knows if I will make it till whenever so it makes it hard to care about the long term financial aspects of things like getting delivery food all the time. It’s not a lack of knowledge about it, it’s finding the mental energy to care about it and deal with it. For me, with my depression I find mental energy functions very much like spoons when talking about physical energy. Being depressed, I always feel like I have to really prioritize what I can give a damn about. Do I care about not getting fired from work? Do I care about getting through school? Do I care about taking care of my physical health? Do I care about taking out the trash, doing dishes, cleaning the house, and so on? Do I care about the long term financial repercussions of what I spend on dinner tonight? And there are a lot more things I could add here. Pick 2-3 of those tops, but there are not enough mental spoons for all of them.

I don’t know how many other folks struggle with this sort of thing with depression or if it’s just me, but at least for me this is definitely an aspect of depression I don’t think people understand is due to depression.

I love swimming, and I’m realizing one of many reasons that I really enjoy this form of exercise is due to migraines. Since exercise is both a trigger for migraines and makes them a lot worse, they clearly make exercise difficult.

Cold on the other hand is such a godsend for migraines. So swimming in cold water kind of balances it out. Because of having my head immersed in cold water, I don’t get the pain I would with other types of exercise.

As I’ve been doing strength training several days a week before swimming, a lot of the time I am dragging, having trouble doing the strength training because of a migraine. But getting in the pool to swim, I feel better and it doesn’t hold impact my ability to work like it otherwise would.

Of course when I googled I discovered a few people who said that chlorine triggers their  migraines, so it wouldn’t quite work for those folks. Also wouldn’t have the same impact if the water isn’t cold.

But for me, this is another reason to enjoy swimming 🙂

I’d been meaning for a while to write about my experiences with motivational interviewing, and specifically the aspect of non-judgment in it, at my job but I guess I haven’t done that yet.

I was reminded of this recently though when I had some personal training sessions at my new gym. Which left me thinking that boy, personal training certifications should also come with motivational interviewing training!

Of course, I always think everyone in the world would benefit from a little social work training, so I’m a bit bias of course.

Let me back up first though and talk a bit about my experiences with this at work. Motivational interviewing is a method of brief intervention that is meant to help motivate people to change, but it does so in ways that are not pushy and never judgmental. Many of the underlying principles of motivational interviewing come out of person centered therapy as developed by Carl Rogers. I, myself, am a huge Rogers fan. His theory for psychotherapy is that change for people comes through unconditional acceptance and positive relationships, and so that is the primary purpose of a psychotherapist- to provide that unconditional positive regard and warm relationship.

Motivational interviewing comes primarily from the substance abuse field. It is a method of working with someone who maybe is starting to see the problems with their substance use but often are not ready to make changes yet. We call this the contemplation stage. And the idea is first off, that you go with what they say and accept it without judgment. There is not judgment about their use, their reasons for use, or their reasons for not wanting to become sober. Of course the motivational interviewing part comes in with emphasizes the change statements they themselves make in order to help them move toward wanting to make changes. But it is NEVER directive. A therapist using motivational interviewing will never direct a client that they need to abstain from substances, or tell them that they are wrong for their reasons for using or the things they like about it or why they don’t see it as a problem. (ie “I don’t want to stop using because I will lose my friends”, “well those people aren’t really your friends then”- this is not motivational interviewing. Motivational interviewing would explore what this means for the client and accept without judgment that they fear losing meaningful relationships to them if they quit using).

Right now I am working in integrated healthcare. So I work with folks with physical health, mental health, and/or substance abuse disorders. A lot of what I do with this is actually applying the concepts of motivational interviewing to physical health disorders. A big one I work with is diabetes. And boy, have I noticed what a huge difference it makes in folks that they are not being judged! If I talk to someone with diabetes that is not well controlled about their diet, often they first thing they say is “I know, I know, I need to stop eating/drinking X” or something like that. They know. They have gotten the lecture many times from doctors and nurses. And those lectures don’t work. The tone completely changes though when I don’t respond by telling them what they have to do, or warning them of all the dangers of not doing what I tell them (the most common approach taken by doctors). From there, they often start talking about their own ideas for how they can make changes that make sense for them.

“I know, I shouldn’t put sugar in my coffee because of my blood sugar. I just can’t stand black coffee and I can’t get going in the morning without my coffee.”

“That makes sense, you need that boost of energy from coffee in the morning but you don’t like the taste of black coffee. And that would be a huge change to go from that much sugar to just black coffee.”

“Yeah, exactly. Though I think I could maybe cut down on the sugar a little bit”

“Yeah, cutting down a little bit would help and it would probably be less harsh of a difference than just trying to drink coffee black when you aren’t used to that.”

And then we explore more about how they feel about this and what their thoughts and plans are. They are used to being told though that they just shouldn’t put sugar in their coffee and that’s not a change that they are ready or willing to make. So they sit through the lectures and don’t do anything differently after.

 

I was reminded of this when I went through personal training at the gym because the trainer I worked with was very directive. And that did not work with me either. I like working out, but personal training made me feel like I was taking a class, with directions I had to follow whether they were what I wanted or not, and with homework and scolding if I didn’t follow directions or didn’t do the homework. (ok, so “scolding” might be a drastic way of phrasing it, but still, it was that feeling of having to do what you are told and if not you are “in trouble” in some sense.)

There were of course a few specific issues I had too. I told her early one what my goal in joining the gym was- about my current limitations, but how I want to regain the former activity and strength I had.

She accepted my comment that I was not trying to focus on weight loss, only to turn around and tell me how I needed to focus on fat loss. As though rephrasing it that way made it different.

Even though my focus was activity she also made nutrition the focus, telling me how I had to stop intermittent fasting. She also claimed this was both the reason I am fatigued all the time (not my illnesses!) and also why I’m fat. I do not react well to people who do not have the same health issues trying to explain to me the right way to deal with fatigue or the magic cure for it. Even someone who also struggles with chronic illness and fatigue, doesn’t mean their experiences are the same as mine.

The thing is, these topics probably could have been covered a lot better using a more motivational interviewing method. First off, motivational interviewing, if I say I am focused on activity more than nutrition we would focus there, not try to keep redirecting me back to nutrition. Advice would never be directive or one size fits all. She could have asked me how to I feel about intermittent fasting, how it works for me, if I want to change it (the answers would be that I feel better eating this way and no I do not want to change that). She could have asked if there were things I wanted to change, what they were, what my barriers to change are, how things might be different without those barriers, how to address those barriers, whatever. I’m not saying my diet is perfect all the time or that I couldn’t eat in a way that is healthier for me sometimes, including eating in ways that help me manage my illness better. I’ve written here before about the struggles of my illness making eating well more difficult, and yet when I don’t it can make my illness worse. It’s a bit of a catch 22 at times, because if I don’t have the spoons to cook, I don’t have the soons to cook. That’s how spoons work.

 

And I don’t mean to sound that mean toward her or anything because I could go through a lot of things I think she also did well working with me! And the reason I didn’t continue with the personal training was mostly financial (and in a related sense spiritual). My point was more so that being on the receiving end of that really had me thinking how much better (in my opinion) things like personal training could be if they utilized more motivational interviewing skills.

AKA a day in the life of a spoonie.

 

I wrote this last night but then wasn’t sure about posting it or not. I’ve been debating if I should post this or not. But I kind of think it’s an important post in the way of recognizing what low spoon days can look like. For me, my “spoons” or what can I manage, will vary day to day. Some days are better and those are the days I work, get school stuff done, workout, et cetera. And it’s easier to talk about those times, and the struggles I have during those times. It’s hard to talk about the bad days. The days I get nothing or almost done and little acts leave me crumpled on the floor in tears from exhaustion and pain. I still struggle with feeling embarrassed and ashamed of these days. Internalizing the message that this is a reflection on me as a person, the idea that if I was a better person I would be strong enough to overcome it. Even though I know logically that is not how this works. 

I really wanted some mashed potatoes for dinner today, and did end up making them, but it took all day to accomplish.

A run down of my day:

Woke up late in the afternoon (spent most of my weekend just sleeping. After work Friday I came home and slept for 24 hours straight. I’ve been completely exhausted.)

I was awake but still incredibly exhausted, and so dizzy I couldn’t stand for awhile.

After a bit I started feeling better- better enough to take a shower. So I decided I would try to go to the grocery store to get some food. Which meant first taking a shower.

After the shower I needed to sit and rest a bit before getting dressed to leave. After a bit of rest I got dressed in jeans, a tank top, a zip up hoodie, and slip on shoes- a very simple outfit that didn’t cost many spoons. Then I headed out to the grocery store.

I managed to get to the store just before closing to get some groceries.

Came home,  brought my groceries into my house, and then immediately collapsed in a pile of grocery bags right at my front door where I lied crying, completely drained, in pain, and frustrated that something as simple as going shopping for some groceries left me so completely drained.

Rested there a little bit before I was able to get up and put away groceries.

Ate some raw veggies while resting more.

After awhile I was able to get up and put food on the stove and in the oven to cook.

Then rested while it cooked.

After awhile I had cooked potatoes, peas, and some turkey. A very good dinner.

That was around about 2am. Finally, by 2 am, I had dinner.

And that’s basically all I managed to accomplish today (well, that and managing to get some programs reinstalled on my computer because on top of my body not working, my computer is giving me shit too).

Welcome to a day in my life.

Thought I would post this because it reminds me of the things people often take for granted, like being to go grocery shopping or cook dinner and not have that take up all your energy for a day. To have that be just one small part of the day.

And now I am off to bed, hoping I have more spoons tomorrow because I obviously wouldn’t have been able to manage a full day of work on what I had available this weekend.

I rarely use twitter but hopped on for this hashtag. I recommend checking out the posts with it.

There is also this post about the importance of it: http://geekygimp.com/shitabledpeoplesay-why-we-need-this-hashtag/

I’m x-posting this from my facebook, because it seems like an appropriate comment for this blog:

My perspective on living with chronic illnesses changes day to day.
 
Some days I’m like “I have multiple chronic illnesses that make living hard and yet here I am working full time, working on my PhD, and sometimes even finding time to volunteer in my community! I am amazing! I’m like a chronically ill wonder woman over here!”
 
And then other days it feels like all of this is a very well balanced structure of playing cards that I’m trying to balance on a tray with one hand while riding a unicycle and there aint no way I can keep that up and it’s all clearly going to fall apart eventually.
 
Today is one of the latter.

This is just a post about me, and my health. I haven’t been particularly active recently between the plantar fasciitis and asthma.

So to catch folks up: turns out I have exercise induced asthma. Found this out after severe coughing following a krav maga class lasted several days rather than the several hours it used to. Went to my doctor, got diagnosed, prescribed an inhaler to use before exercise.

Inhaler helped but didn’t completely eliminate the coughing and trouble breathing. I then started having panic attacks when working out from panic that I wouldn’t be able to breath which just exacerbated the asthma.

Well, I finally got back to my PCP today about this. She prescribed a daily maintenance inhaler in addition to the as needed on I’ve been using. She also informed me that the as needed inhaler (albuterol) increases heart rate. Since I was (and am) supposed to use it before exercise, I think this as part of why I was having panic attacks (my fear + the physiological response to the albuterol). I feel a lot more relieved and in control knowing this.

Between this and improvements with my foot pain I’m hoping to get back to a higher activity level again.

So this post doesn’t directly address any big important topic, other than I think it’s good to recognize that health stuff happens, treatment is good, and if other folks are having trouble with a physical issue that is making it hard to exercise, it’s a good idea to see a doctor. Often it’s easy to put it all down to personal failing I think, especially breathing problems which we often attribute to “I’m just not in shape enough”. This is especially a problem for fat people because when our health problems are so often boiled down to “lose weight” regardless of what they are, it encourages people to not see doctors. Yet sometimes, medical intervention is necessary to allow people of any size to exercise safely, and there should be no shame in seeking that out.

And of course ignoring health problems because “I must just be out of shape” or “I’ll see a doctor after I lose weight” can be deadly. 

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.