Wednesday, January 28, 2015

A detailed retelling of my break down. What it was like to work while chronically sick.

Every time I go through a period where my gut is irritated and unhappy, I'm reminded of how horrible my health was just over a year ago. I didn't know it back then, but my gut health was one of my most significant problems, causing issues in the rest of my body. I haven't detailed just how terrible my health was on this blog because it's not a time in my life that I like to revisit. I've only said as much as I needed to in order to make my point in that post. I think I will revisit it, to some degree, in this post as a way of connecting with my readers who are currently suffering. The best time to write about this topic is when I'm not feeling my best, because I want to express the pain in some way. (I'm okay- don't worry. What I'm experiencing at the moment will pass in an hour or two. I knew something was wrong when I woke up this morning because my dreams were very hostile and angry, and sure enough, my gut isn't in good shape today.)

Most people would assume that when you're deeply suffering you have two options: you either fight to survive, or you break down in tears and give in. What if neither option works for you? That's where I was at for a few months in late 2013. I simply didn't have the energy, strength, or mental capacity to fight or cry. I wasn't sure if I wanted to keep living, because I couldn't see the point when I was a total vegetable. Crying wouldn't have helped because it would have taken up the tiny bit of energy I needed to stay alive. I was blank. My brain didn't work right: I couldn't think well, my memory wasn't working, I didn't feel time passing, and my dreams were so weak they couldn't even form a story. My body wouldn't respond to my will: I spent my days mostly in bed because I couldn't support myself, getting up and going to the bathroom felt like I was training to run a marathon, cooking and eating felt futile and unimportant because of how much energy it took, and everything hurt all the time.

Some days were better than others. I was at my weakest after 13 days on Cymbalta. It made me so much worse! Before that horrible anti-depressant experiment, I was functioning on some level. I was still going to my 30 hour per week secretarial job, but I wasn't holding myself together. I couldn't remember the names of people who came into the office regularly, my eyes were crossing as if I hadn't slept in days, I took much longer to complete a basic task than I should have needed, and I just couldn't get excited about things happening in the office that I should have been excited about. During the year I was at that job I got worse and worse. When I first started the job in 2012 I did feel exhausted, but capable of working. Shortly after starting the job, I got a MRSA abscess on an area of my body with extremely delicate skin and tons of nerve endings. I took 2 weeks of sick time to recover from that (much of that time was spent in the doctor's office and in the ER screaming at the top of m lungs in sheer pain.) A few months after that I lost all motion in my right wrist and thumb, finding myself in a splint and brace for 4 weeks. I had to do my job with my left hand, which wore it out. I then found my left hand in a splint and brace for 4 weeks. By that point, my exhaustion had turned into physical pain, and after several months of seeing doctors, I was finally diagnosed with fibromyalgia. It's a wonder they ever put up with me - I'm shocked they didn't fire me for being too sick all the time. It was then that I was put on Cymbalta, which forced me to be bed ridden. I missed about 3 weeks of work because it was impossible to get out of bed, even after I quit the Cymbalta. That's when my parents brought me out to New Hampshire to see a naturopathic doctor who could help me, and he's been the greatest blessing for me (along with my husband and parents, who I love very very much!) I quit my job after I came home from seeing him, because I finally learned, in detail, just how poor my health was. I knew I needed to put all my energy into recovering, not working. And frankly, I no longer had the strength to work. It was no surprise to anyone that I quit my job.

What was it like in detail?
Oh my goodness. Try going to work every day with a foggy cloud wrapped around your head and your eyes. I was always a bit dizzy. My speech was mumbled and slurred, and I couldn't find the right words to say. I had a difficult time focusing my vision because everything I looked at was a little on the blurry side. My legs and arms had a constant dull ache which would turn into sharp jabbing pains when I moved them. I had to go to the bathroom every 5-20 minutes because my bladder muscles felt too weak. I was nearly constantly clenching so I wouldn't leak. My gut gurgled and churned on a regular basis. I could often feel it pulsing (the same type of feeling as when a nerve twitches under your skin.)  My skin was almost always icy cold and pale, and I hated touching my body because it felt achy and cold. My brain refused to work, even when I tried as hard as I could to focus it. Every thought I wanted to have turned into a blurry, floating, dreamy image that would linger for a second then fly away, leaving my brain blank. I found myself thinking out loud to people, because I really didn't have the ability to think about my response before responding to them. I'm sure I said a lot of things that made no sense to people. I caught myself not breathing fairly often, and when I was breathing it was very short and shallow breaths. I caught myself staring at my computer screen for minutes at a time, having no clue how much time had just passed while I was zoned out. My coworker/ office mate would often start talking to me and I would be so zoned out that I didn't even notice. I got scared very easily, and my adrenaline and heart rate would sky rocket when someone unexpectedly walked into my office. I was also growing more and more dyslexic, in that I was often typing the last letter of a word first, or writing a number different from the number someone told me to write down. I couldn't trust that I took accurate notes. Oh my goodness, then there were the times when I was teaching Faith Formation classes as a substitute or even leading the classes of 1-8th graders through the hallways or to the church - I found myself sweating and panting from all the stairs and long hallways through the church education building. It was embarrassing to look like I was working out at the YMCA every time I needed to physically work with the kids. 

When I could no longer work and I quit my job, the time I spent my days laying in bed was miserable, but better. I didn't have to work, didn't have to impress anyone, didn't have to think straight, didn't have to be coherent to anyone... I was free of the burden of being a functioning member of society. The problem was that it allowed me to focus only on my pain all day long. I couldn't see anything other than my own misery. In a way I felt better because I wasn't spending my energy on things other than my health, but in a way I felt worse because I wasn't using my body anymore. It was a true "break down." I laid there with my whole stomach and gut churning and throbbing, my legs and arms aching and stabbing, my muscles building tension like they were violin strings getting tuned, my bones cracking and swelling with every motion, and my brain lost in the twilight zone.

I didn't know how to fight.
I didn't have the energy or care to cry.

A year a few months later, I'm writing this post while feeling about 50-60% better on average (though I have occasional periods of time where I feel 70% better.) I now have the knowledge and tools I need to fight, and so I'm spending every day fighting. The effort is paying off. I now have the energy and care to cry, but I haven't felt like it. The feeling of hope that has developed has me too happy and excited to want to return to how dark and painful those times were.

I sincerely hope that my story reaches your heart and helps build a sense of empathy within you. It's so easy to make assumptions about people who are sick. It's so easy to say, "Gee, maybe he'd feel a lot better if he didn't eat fast food all the time," when in reality that person is overweight and lethargic even though he's eating only whole foods and goes for daily walks. It's so easy to say, "Well you know that person just wants attention and isn't trying to do anything about their perceived pain; I mean, if you're in pain, go to a doctor and fix it," when in reality that person has spent $10,000 on doctors who haven't been able to help. It's so easy to say, "That person is useless to society, look at the way she brings everyone around her down with her depression and weak body," when in reality that person might be desperately trying to hold on to friendships and a social life so she feels like she does have meaning in her life, despite her constant pain. Please, avoid judgment. While many people do actually make themselves miserable by eating a stereotypical fast food diet and refuse to see doctors, many people are sick despite their best efforts to be well.

I ate mostly organic non-processed foods before I got that sick. I did get some regular exercise in (in that I wasn't a couch potato.) I did see doctors. I did try to get help. I still had a complete break down.

You should know that my memory was very bad during the time when I was my most sick. There's a lot that I simply cannot recall because my brain wasn't healthy enough to form memories. This post is probably lacking a lot of detail because of this. I sincerely hope that you cannot relate to this problem, but as I've been reaching out I've been meeting many people who, unfortunately, can relate. If you're one of the people who can relate, do not give up. Healing is possible. You probably won't find the help you need through western medicine, surgery, or drugs (as you probably have already learned,) but help is out there in other forms. That is what this blog is about. Don't give up.

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