Archive for the ‘Disability’ Category

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!

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 🙂

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.

Ok, let me start by saying sorry to my followers that this blog has been so inactive. I have things I want to write about, but I have been busy with work, and trying to spend my free time working on my artwork. (If you curious I have a blog eboriginalsart.wordpress.com for it, or just follow me on instagram- ebay313).

Right now though, I thought I would talk about depression.

I have depression that is specifically linked with my physical health. When I am tired, fatigued, pushing myself past my physical limits, I get depressed.

One thing this means for me is that I can get fairly suddenly depressed, and just as suddenly not-depressed (as in, I am depressed today because I’m exhausted, but if I don’t keep pushing myself and I get enough rest, I can be not depressed tomorrow).

The good in this is that I have so much non-depressed time.

And you would think this means that the depression is better knowing it can be so “easily”ended (though honestly, getting enough rest is not actually often easy. Especially when working full time and trying to work on a PhD.) There may be some truth to that. But less than some may think.

Which is what I really wanted to talk about here. Whatever the cause of depression for anyone, I think part of the heart of depression, part of what makes it so difficult is how all consuming it can be. I am depressed today. Even after a weekend of rest I am still exhausted and feel like I need another week worth of sleep. I am fatigued and I am depressed.

When this happens, it doesn’t feel temporary. It doesn’t feel like something I just need to get some rest and get better from. It feels overwhelming. It tells me that the truth, the real everyday truth, is that my life is horrible, that I am horrible, that I am worthless. It says every time I have thought something different, that was a lie. There is no point doing anything, no point trying to rest even, because it’s all pointless and worthless just like my life.

I don’t want this to be negative or “whoa is me”, what I’m trying to explain in this post, for anyone who hasn’t experienced it, is how depression can swallow you. Even when it is short lived. And even all the more so for those who live with it every single day. It’s more than just an emotion. It’s more than just being sad. It really is just something all consuming.

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.

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.