For the first two years my psychiatrist was treating me, she was treating primarily for depression, with anxiety as the secondary thing that she was trying to treat. I kept telling her that I was depressed because I was feeling anxious (and physically terrible) and she kept insisting that I was really depressed and that the depression was causing the anxiety. This was before my Chronic Fatigue Syndrome was diagnosed, and desperate for some relief, I went along with her treatment recommendations.
In retrospect, now that I know about the CFS, I believe that my treatment-resistant depression can be largely attributed to that. I mean…if you were so exhausted that you could barely move most of the time, wouldn’t you be depressed too? Wouldn’t you feel anxious about life? I know I have an anxiety disorder, and I know I have depression, but my CFS diagnosis has completely changed how I look at and approach everything.
Having a chronic illness changes your entire life. It can make doing even the simplest of things, things that you took for granted “before”, impossible. Something as simple as brushing your teeth can suddenly seem insurmountable. Putting food in the microwave to heat it up seems like too much effort, even though your brain tells you it’s not that bad. Everything seems like a challenge, and the entire time, your brain tells you that you need to just push through and do it. For some, pushing through works…unfortunately, for a lot of people with CFS and similar conditions, pushing through is not an option and can result in an exacerbation of symptoms.
If you have been diagnosed with mental health issues and chronic illness(es), stop for a moment and think about this. Is it the same for you? Based on my experience, this seems like something that is probably more prevalent than people think it is. It took the CFS diagnosis for my psychiatrist to change her view on my treatment, and things are starting to look up in terms of my mood. Now, if I just had the energy to do the things I want to do, I’d be good to go!
The Merriam-Webster Dictionary defines “recovery” as “the process of becoming healthy again”. For those of us with mental and/or chronic illness, it can often seem as though becoming healthy again is something that is either completely out of reach, or so far away that we can’t imagine what it must be like.
I hate the word “recovery”. It gives a false sense of hope. It makes people who don’t know all the details think we’re going to recover completely from whatever we are fighting with, in our minds and in our bodies.
For many, “recovery” is unattainable. We are never going to become healthy again. Of course, not everyone wants to hear this, but at some point we have to face the facts…chronic illness sucks. Mental illness sucks. Sometimes it feels like EVERYTHING sucks, but we know that’s not true, even though it may feel like it is.
I am writing this post knowing that it may offend people. For a lot of people, the concept of “recovery” is something they cling to when they have nothing else, and this is something I admire greatly.
But I can’t do it. I can’t lie to myself and think that I am going to recover.
And if it’s a “partial recovery”?
Well, then let’s come up with a new word. What do you think?
As someone who is currently taking a hiatus from working, something I get asked often is, “What do you do all day?” I know there are many others like me who are in a similar situation, and this is a great opportunity for us to talk about it.
The day usually starts off around 5am, when I wake up for the first time. I try and go back to sleep…sometimes I’m successful, and sometimes not.
Eventually, between 7 and 8, my dog wakes up fully, and it’s time to take her outside. I can barely muster the energy to throw on some clothes, but she has to go, and I have to take care of her. After I drag us outside, we usually go back to bed for a bit, or crash on the couch. Sometimes, I fall asleep on the couch for another hour or two, and then the phone rings – my dad, checking in to make sure everything is alright.
My dog is usually still asleep at this time (after having eaten her breakfast), and I attempt to drag myself to the kitchen to eat something. My appetite is sparse most of the time, but I know my body needs food, and force myself to eat something. Most of the time, I grab whatever requires the least amount of effort, and then crawl back onto the couch.
I lie there for a while, sometimes watching tv or fiddling with my phone, sometimes drifting in and out of sleep. This continues until my dog wakes me up because she needs to go out, and then we make a quick trip outside. After that, we just kind of rinse and repeat for the rest of the day. Sometimes there’s lunch in there, sometimes not.
At dinner time, I usually drag myself to the kitchen and grab something…anything, whatever is fast and not going to make a mess. I feed my dog her dinner, and then back to the couch.
We go outside a couple of times, and then eventually, we go to bed.
There are days where the routine changes a bit…maybe I have a medical appointment, or something else going on. Maybe the laundry has piled up to the point where I have nothing left to wear. Maybe I realize I haven’t had a shower for almost two weeks.
Unless people have experienced being depressed like this, they cannot understand what it is like. It may look “lazy” on the outside, but if they knew what was going on inside, they might be more understanding. Having major depression is not something I would wish on anyone…and yet, sometimes it would be nice if people had experienced it, so they could understand.
Sticking to a schedule can be hard sometimes, and depression and anxiety make it even harder. When you’re too exhausted to move or do even the simplest tasks, how can you follow a schedule, right?
For the past few weeks, I’ve been scheduling everything including regular daily activities in Google calendar, and having it shoot alerts to my phone and email to remind me of things.
I’m sure that anyone looking at my calendar would think it was a little too detailed, but for me? Perfect.
Some examples of things that I have scheduled include:
- Journal/workbook time every evening to work on either my depression or anxiety workbooks (more about those coming up in a separate post), or one of my journals. I have been given a couple of themed journals as gifts in the past few months, and made the decision that I had better use them.
- Apartment cleaning – even if it’s not a full clean, I still make an effort to stick to the time I have scheduled for this.
- Watering plants
- When certain small, additional bills are due or come out of my bank account (Netflix, etc.)
- Social outings
Of course, my calendar also includes a lot of medical appointments and other stuff, but I would track that one way or the other.
I find that even though I’m not working and have “a lot of free time” (more on that later, too), trying to stick to a set schedule is helping me feel like my life has a bit of purpose.
It was about a year ago now, that my doctor uttered the words that have been following me around ever since…”You have treatment-resistant major depressive disorder.”
Wikipedia defines treatment-resistant depression as, “a term used in clinical psychiatry to describe a condition that affects people with major depressive disorder (MDD) who do not respond adequately to a course of appropriate antidepressant medication within a certain time.”
Sounds simple enough, right? Depression is present, but it doesn’t respond to “appropriate antidepressant medication” the way that a doctor would expect it to.
The reality, though, is a lot more complicated.
Treatment-resistant depression is trying over twenty medications and combinations of medications in a year and a half. A never-ending cycle of side effects, withdrawals, side effects, and withdrawals as you hop from pill to pill, hoping that the next one will work.
Treatment-resistant depression is a constant feeling of hopelessness with no relief.
Treatment-resistant depression is the feeling of constantly letting people down because you say you’ll do something for them, and then just….not doing it. Every time they follow up to see if it’s done and you have to say no, it makes you feel worse.
Treatment-resistant depression is going to your medical appointments every time, knowing that you have to go there, but also feeling like it’s pointless because no matter how often you go, nothing seems to change.
Treatment-resistant depression is having to give up your work because you just…can’t anymore. It’s hard enough to get up in the morning and take basic care of yourself. Sometimes that doesn’t even happen.
Treatment-resistant depression is struggling to find joy in something…ANYTHING. It is like the colour has been sucked out of your life.
Treatment-resistant depression is going through the motions, day after day, hoping that someday, something works. It’s wanting to give up every day, but keeping on fighting just in case there is hope somewhere. Because if you don’t have hope, some days you don’t have anything.
I’ve been quiet lately, but my brain has not.
I had my appointment from my last post a couple of months ago. It went well…the doctor I saw made some recommendations, everything seemed good, he sent the recommendations to my doctor…and she won’t follow through with them because she thinks he is incorrect. For a brief moment, I had a flicker of hope, because this doctor really seemed to know what he was talking about, but it was a waste of time, apparently. I have to go back and see my doctor in a couple of weeks, so we’ll see if I can convince her to follow the instructions on the report, but after over a year, I’m not holding my breath. I need to switch doctors to someone else, but this brings me to my second thing that’s been going on…
I am going to go see someone to get some help apply for disability..it would give me a little more income per month than the support I receive right now, and since I’ve been on that for a year without any improvement, I am hopeful that my application gets approved. I am not sure how long this process will take or what I will need to do, but I’ll find out later this week.
The main thing I’ve been dealing with lately is crippling anxiety – it’s not going away or getting better, and it seems like every day there’s something MORE ridiculous making me anxious when I know I shouldn’t be.
I’ve been trying to do some art in the last couple of weeks to see if that will help relax me…it has been going well. I also received an order for some custom background art, which was very stressful…the fear of everything I do being rejected seems to still be here at full force, although I haven’t done any major work for anyone for over a year. I also did a couple of small banner designs for someone, who said he loved them and insisted that he’d pay immediately…he still hasn’t paid, 15 days later, and that’s making me wonder if maybe he wasn’t really happy with them. He seemed so eager to pay…if he was seriously happy, wouldn’t he have done that by now? I even sent a reminder, and haven’t had a response.
Time is just ticking away, and I feel like I’m sitting here just waiting for things to change, trying to make things better…but it’s all very stagnant.