When someone asks how I am these days, I have two answers: “I’m fine” and “I’m tired”. They both mean pretty much the same thing, but it depends on who I’m talking to which one I choose to use.
When most people say they’re tired, they mean just that. Maybe they didn’t sleep well, had a busy day, or any other number of things.
When someone with Chronic Fatigue Syndrome says they’re tired, what they mean is quite different. Being tired with this illness can mean:
- Being so exhausted that you can barely move, if you can move at all.
- Your body feeling so weak and run down that simple tasks like brushing your teeth or hair are insurmountable.
- Feeling hopeless and just sick and tired of being sick and tired with no signs of relief on the horizon.
- Feeling the exhaustion deep in your bones, and having even the smallest movements make it worse, or worse still, cause pain.
- and many other things.
Of course, these aren’t things that we say when someone asks how we are. For the most part, it’s just easier to keep conversations like this general and short…the feeling that the person you’re talking to doesn’t really want or need to hear all the details is one that happens often, and even those closest to us may be unaware of just how awful we feel.
The next time you ask someone with a chronic illness how they are, and they respond with “I’m fine” or “I’m tired”, take a moment and think – there is probably a lot more going on below the surface than you realize.
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!
Dear Chronic Fatigue Syndrome,
You and I have been friends a good long while, although my doctor only recently figured that out. I knew there was something wrong, but everyone I was sent to was unsure of what to diagnose. You sure are a tricky one, hiding in plain sight like that. You’re so good at disguising yourself as so many things, and that makes it hard for doctors to see you. You are the ultimate player of hide and seek.
I wanted to talk to you about a few things today, since I have some things to say to you.
I am tired. My body hurts. My brain feels like it’s been replaced by cotton balls.
But mostly…I’m just tired.
You make it so hard to do things most people take for granted. Simple things, like brushing my teeth, cooking food, and vacuuming. I miss being active. I miss my job, my friends and my hobbies.
I miss my life.
I miss being able to do what I want, when I want to do it. I miss not having to plan out every detail of every expenditure of energy, to see if something can be done more efficiently. I miss just existing without having to plan for it and know I won’t be able to do what I want to.
It’s frustrating, being like this. It makes me want to scream at you, some days, Chronic Fatigue Syndrome. Why can’t you just let me be how I want to be for a day? No, I don’t even need a day. An hour. Please…I’ll do anything.
For many, that relief never comes.
You know, it’s a good thing we are resilient, and can keep it together most of the time when you drag us through hell and back, trying to make us give is.
We won’t give in, though. We are strong.
A CFS Patient
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?
You’ve been going to the doctor for months. No, wait…years. You’ve been going to the doctor for years. They’ve sent you to all types of specialists and tested for all sorts of things, and it’s all come back a bit odd, but mostly within a normal range. You start to feel like your doctors have stopped taking you seriously…have written you off as a hypochondriac.
You know something’s not quite right, even though everyone keeps telling you you’re fine. Your endurance and stamina are slowly sapped from your being…you can’t focus, can’t concentrate…can barely walk around your apartment sometimes.
After another year or so of complaints, your doctor sends you to one more specialist. It feels like it’s just to shut you up, but you know she means well. The specialist runs a few tests and gives you iron infusions, which do nothing except make you feel awful and raise your iron levels very slightly.
You wait another couple of months, and then you go back to your specialist. You practically beg him…”Please, you have to help me. I can barely function to take care of myself most days.”
He says he knows you have depression and anxiety – could it be from that? You say no…you know what depression fatigue feels like, and this is different.
He goes back and forth and asks a few more questions, and then, after a little while…
“You have Chronic Fatigue Syndrome. There’s not much we can do. It may or may not go away over the course of the rest of your life. The best thing you can do is to try and stop yourself from getting frustrated. We’ll follow up in a couple of months. Thank you for coming in.”
You thank him quietly and leave his office, walking slowly to your car. You get into the car and sit there. You KNEW there was something wrong. You hoped, begged for answers…and now you have them. You entered his office hoping for relief, and you have left with something for which relief is limited. It feels hopeless, and you feel helpless.
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.
I have been waiting for months for a referral to a diagnostic program out of town, and my appointment is tomorrow!
I am both excited and nervous. Nervous, because who wants to go talk to someone they’ve never met before about the intimacies of their mental health, but excited because maybe this will be a stepping stone on the way to improving this thing. It’s been an entire year with NO progress whatsoever…tons of failed medication trials, tons of attempts at various other things, and no upward progression.
I can’t believe it’s been an entire year…it’s all blended into what seems like both one long day and a series of very long days that took forever to get through.
I will make a more detailed post about my experience after the fact!
It’s not something I see talked about a lot…maybe because people don’t want to admit they’re doing it, or maybe because they aren’t, and it’s just me.
Like most people, I don’t like doing dishes. Even on a good day…I hate it, but will do it because I know it’s necessary. When I’m depressed, though, the thought of having dishes to wash prevents me from preparing food and quite often will event prevent me from eating.
To help combat this, I took a trip to the local dollar store, and picked up some compostable paper plates and bowls, plastic cutlery, and even a few aluminum trays that I can throw stuff in and put it in the oven to cook if it’s something that’s going to be messy and might be hard to clean from one of my glass baking dishes or cookie sheets. I know this sounds incredibly lazy, but it’s been a real life-saver in that it’s making it so that I actually make sure that I’m eating properly.
As I’m doing this, in the back of my mind a little voice keeps saying, “this is bad for the environment! Stop!” But I can’t…not eating when I’m feeling this way is a major problem for me, and if this works? I have to do it. I have no other options.
Another thing I’ve started doing is not buying too much food that won’t last long in the fridge – I mostly buy fruit and vegetables either canned (the no salt added kind for veggies), or frozen. That way, if suddenly a week has gone by and I’ve been doing everything BUT eating those healthy things, I’m not throwing them away and wasting them and the money I paid for them.
I’m looking forward to the day where I start eating my meals off regular dishes again, but for now…this will have to do.
I haven’t been able to work for eight months. Most of that time has been spent sitting in my apartment, alone, trying new medications, trying various techniques suggested by my doctor and therapist and just kind of….waiting for time to pass to see if I’m going to beat this thing or not. It’s been rough. It’s been hard. It’s been one long jumble, and most days I can’t believe it’s been as long as it has.
And yet, here we are. Eight months of living in limbo, trying to make things better without much success.
It’s interesting – the people who know me well know the struggle I’ve been facing on a daily basis. They know it’s hard for me to get out of bed. They know my apartment looks like the apartment of someone who has barely been functioning for months…it’s a disaster area, in dire need of a deep cleaning and de-junking. They know it’s not pleasant, and they know it’s not “time off”. Being bombarded by BPD and major depression is like fighting a constant war with myself, and most days I’m not sure if I’m winning the war or not. But, I’m sitting here and writing this, so I must be winning…for now.
And then there are the people who think it must be so nice to not be working – “You must be enjoying having some time for yourself!” “I wish I didn’t have to work and could take time off like you are.”
Yes…I am enjoying having time for myself. It is like a wonderful holiday, and I never want it to end.
Unless someone has had their own personal experiences dealing with multiple mental illnesses, the majority of people have no idea just how unpleasant and HARD things are. It is fucking HARD to get out of bed every day, and some days I don’t make it. My hair doesn’t get brushed for a week (or more) which means I haven’t showered for that long either. About 3 months into this thing, I cut off all my hair…it used to be down past my waist, but not being taken care of for that length of time in between brushings made it almost impossible to deal with. A lot of it also fell out due to the general stress I was experiencing, and it was just too much. But it’s just hair…it’ll grow back, and I know that.
If you have someone in your life who is currently unable to work due to mental illness, please do not minimize their struggle. Be supportive. Instead of telling them it must be nice not to have to work, ask them if there’s something you can do to help make things a little easier for them. Maybe they want you to bring them some food, or just be there to talk. When people are in this state, we are extremely vulnerable, even if the majority of us won’t admit it. It’s a hard place to be, and although we may say no 100 times when you offer your help, there may just be that one time where, instead of the “no” you’re used to, you get a “yes”.
We need friends and family to help us get through the rough patches. And even if it all seems like one gigantic rough patch, eventually it’s going to get better.
I am currently taking things one day at a time. Sometimes one hour at a time. And sometimes one minute at a time. Because every minute of every day is a struggle, and it’s exhausting.
But I’m still going, and if you’re reading this then you are too, and that’s all that matters.
It was only going to be a little while. I just needed a few weeks to “recharge”. Everything was going to go back to normal, and I’d go back to work.
That was the plan, anyway.
Here we are, 8 months later. Haven’t returned to work. Haven’t found a suitable treatment option for this time around. Don’t remember a large portion of the last 8 months because it’s both blurred into one big clump of days and there were so many medication trials and failures that I don’t even know what’s what anymore.
I am lucky to have qualified for income assistance from the government during this time – I have a lovely doctor who filled out the forms I needed, to allow myself the time I needed to take to get myself in order.
But it’s taking a lot longer than I’d planned. I’m not sure what I expected…When you push yourself to the full extent an already fragile, BPD and depression-riddled brain can handle, nothing good ever happens. When you push yourself to that extent for work for months (maybe even years), it does some serious damage. As my therapist has stated, “It took a while for it to get to this point. It’s going to take a while for things to get back to normal too.”
She has a point…but I still didn’t think it would take this long. This is an important lesson that those of us with mental illness must learn, and it can be a hard pill to swallow. Recovering from things takes time. Most days, I still feel like my brain has suffered some sort of trauma. I can’t think properly. Can’t remember anything. Can’t even be creative, which was a major fuel for my work. Hell, if I can manage to brush my hair and teeth, it’s a good day.
I know I’m not the only one in this boat…and that’s ok. On the days where I feel weak, or like I failure, I just have to remind myself…it’s ok. Things take time. I am not weak, or a failure. One of my friends has pointed out that, in fact, the longer this goes on, the stronger I am.
Because it’s been 8 months, and I’m still here. I’m still fighting it on a daily basis. I haven’t let it win. And I’m not going to. Eventually, things will get back to normal.
And if they don’t?
That’s ok, too. I’ll make it work out in the end. Because if nothing else, I am strong, and I am resilient.
for my poor, neglected blog.
I started this blog because I wanted to have a place to record my thoughts and share them with others.
However, between being in the middle of a major depressive period for months and my BPD, doing that on either my huge laptop or my tiny phone just seems…hard. Life is hard right now. My laptop is too big to be dragged to my bed, and it’s so awkward on the rare occasion I DO bring it there. I have an iPad, but it’s an iPad 2, and it’s on its final legs.
Sooo…it’s tax refund time, and I decided to treat myself, because damn it, I worked myself into a state of not being able to work for that refund. I DESERVE to do something other than just pay bills with a portion of that money!
Enter the Asus Transformer Mini…I just ordered it on Amazon! I’ve been doing extensive research, and although it has mixed reviews, it’ll do exactly what I want it to do, and I like the ideas of it having a proper Windows 10 install AND coming with a stylus! It says it’ll be here on the 15th….I am very excited.
I’m hoping that having this new tool at my disposal will allow me to get back to my blog, and also improve my communication with the few friends I cling to. It’s the perfect size for staying in bed with me when getting up is too hard, and it’ll fit in my purse.
Stay tuned for more updates! I’m hoping to get into a regular rhythm of posting once I figure out the best way to do that for myself.
But, you know…mental illness. That might not happen either.
And that’s ok!
Living with Borderline Personality Disorder and a number of other mental health conditions can result in us asking ourselves…who are we really?
I know I’m not alone in this. I have Work Me, Socializing Me, Shopping Me, Family Get-Together Me, With Friends Me…but the one thing I can’t seem to nail down is who am I, really? I like to be by myself, and although I seldom find myself without something to do, I’m never sure which one of the “Me”s is present. Any of them? None of them? Is there another “Me” hiding in there somewhere…the Real Me?
For example – Work Me is very straight and to the point. Professional, polite, full of smiles. Shopping Me goes into the store, tries to avoid people she knows, gets what she needs, is polite to store employees, and gets out as fast as possible. Socializing Me is capable of small-talk (even though I hate it), always seems happy and smiling, and tries to make everyone feel included.
But who am I, really?
After being diagnosed with BPD more than ten years ago, I am still struggling with the answer to this question. I’ve been forced to take the last few months off work and life in general due to a significant major depressive episode with associated anxiety, and although it’s a struggle to get out of bed every day, I hope that one thing I will learn from this experience is why I really am. I am currently on my fifth medication trial and am still working with my psychiatrist to try and find something that will work for me this time.
This, of course, brings up the next question – if I discover the Real Me, is that really “real”, or is that just Medicated Me? Is there a difference?
I’m not so sure.
Can you relate to this?