This (thankfully, nearly ending) winter has been one of the hardest I’ve ever had. I talked about it some here, but, new developments.

Aside from the actual pain, fatigue, foggy brain et. al. that comes with my particular brand of chronic illness (and exacerbating issues), the most difficult and frustrating thing for me has been a steadily decrease of my own functionality.

Growing up in poverty, abuse and a fully dysfunctional environment, I hated the absolute helplessness I felt as a child. When I grew up, I told myself, I was going to take charge. I was going to do whatever it took to live a better life. For me, growing up wasn’t a chance to escape rules or boundaries, find myself, enjoy freedom – it was a chance to have the power to make things better for myself. I dragged my heels on that, to be honest, because I didn’t quite know how to be a functional adult. But when my oldest was born, I knew I wanted better for him so I went back to school and have worked (mostly) ever since. I always felt the buck stopped with me and if I couldn’t provide, nobody would.

After finishing school, I worked for a ministry under the government. Great pay at the time, but I was covering a stress leave and I knew that if the person I was covering for came back, I would be out of a job just… like… that. *finger snap* I was perfectly skilled for the job and I enjoyed it, but I had a one-year-old at home and I couldn’t risk being unemployed. So I found another job. And I worked that job until I went on maternity leave with my second (and final) child. I was technically laid off when I went on mat leave, I didn’t have a job to return to. And so, even though we are allowed 12 months maternity leave, when my baby was 4 months old I started job searching. I was thinking it would take a while, that this way I’d be on top of it. Instead, by the time baby #2 was 5 months old, I had another job. I worked that job for 2 years, until in 2008 we decided to return to our hometown, it being more affordable. Yeah, that 2008, the recession-hitting year. In hindsight it was a terrible time to make the move, but I didn’t know that then. Years of job and financial instability followed, but I worked as often as I could, first with another temporary government job and then a string of construction-related admin work, which I loved.

Over the years I had become more tired and sore, doctors kept telling me all my tests were fine and that I had kids, so of course I was tired. I was tested for rheumatoid arthritis and lupus frequently, based on the symptoms, results were always negative. In 2014, a year after starting the worst job I’d ever had – one with a frankly abusive boss, too much stress, not enough pay and often way too many hours – I was finally sent to a specialist who diagnosed me with fibromyalgia. I realized that I would never be able to do better at my job, I didn’t have the stress or energy threshold to take on any more than I already did, and I would never be treated better. I gave notice. I worked another 3 months at the request of my boss, who shockingly could not find anyone else willing to take my position, and who didn’t seem to understand that I didn’t have to stay and continued to treat me worse than poorly, and then trained my replacement. I had another job to go to, one that I felt would be easier given my limitations.

Two months after starting my new job, I was rear-ended on my way home from work. Massive soft tissue injury. I went to the hospital, saw a doctor who poked at my neck for a few seconds, wrote me a prescription for T3s, and told me to visit my own doctor. My doctor told me to go to physio. Not one medical professional sent me for x-rays or scans, I had never been in an accident and didn’t know what should be done, so I trusted them to do what was best. Months later my physiotherapist asked about x-rays and was shocked when he heard I’d had none. He suspected that I’d had a thin fracture in one of my vertebrae and that it had likely caused a concussion, which would have explained the constant fatigue, confusion and overall fogginess I had at that time. I was let go from my job, I didn’t argue because I knew I couldn’t do better.

Two weeks after leaving work, I lost all feeling in my hand and dropped a cup I was holding. My arm just fell. I had thought that I was feeling down from losing my job and that was the reason why my body felt so terrible, why I was so exhausted, why I couldn’t get up. I knew my neck pain was worsening, I couldn’t sit up more than half an hour at a time, but I had thought it was simply depression making things feel worse. But then I couldn’t feel my hand and everything from the base of my skull down to my left hand was either excruciating, tingling or numb. A friend who had had surgery for a herniated cervical disc told me my symptoms sounded like hers and that I needed an MRI. Off to the hospital, I requested and was referred for an MRI which found, surprise surprise, bulging discs.

I spent months barely upright. I couldn’t hold my head up without pain, half an hour was my absolute limit. I continued physio and was referred to a neurosurgeon. Side note, that was early 2015, and I finally have an appointment with a neurosurgeon this April, 2020.

Eventually physio helped to stabilize things and I found another job in the fall, at a used-car dealership that was poorly managed and always at threat of going under. I was laid off in December after they couldn’t afford to pay me anymore, about a week after both the owner and the accountant dodged my questions more than once about the extended benefits I was due to receive after 3 months.

Finally, 2016 I found a job I loved. It was a job that I knew how to do like the back of my hand. It was a brand new position, I could tailor it how I saw fit. Everyone there was great, had my weird sense of humour, I felt like I fit in right away. As much as the job I’d resigned from years before was the worst job of my life, this one felt like the best, and I was thrilled to finally find something I could see myself doing long term.

Why have I subjected you all to my 15 year work-slash-medical history, you may wonder?

Last fall my health took a nosedive. After a couple years of extreme stress in my personal life, my depression hit an all-time low and I couldn’t seem to do anything to fix it. SAD came busting in like the kool-aid man the less daylight there was. Pain and exhaustion came on stronger and stronger. By mid-December I was barely slogging along. We got the time between Christmas and New Years off, as usual, and I thought for sure I just had to make it until then. I’d rest for a few days, I’d recuperate, I’d feel better again.

Except… I never felt better. I cooked a small Christmas dinner for my own family and my mother and it wore me out far more than it should’ve. I rested the next day. And the next. And the next… Each day I thought, “Tomorrow is going to be the day when I feel better.” The magical feeling better day never came. It took me 3 days to work up the motivation and energy to go buy groceries. I did virtually nothing else the entire time, besides cook dinners. I was baffled and angry. I felt cheated that the time I’d been looking forward to for 2 months had done nothing for me. I went back to work feeling as piss-poor as I did when I left.

And that was when I knew this was something different. This was worse, far worse than what I’d experienced before. It was like a 3 month never-ending flare by that point. At this point, 4 months and no end in sight. I don’t have better days anymore. I have bad days, and horrible days, and unbearable days, and that’s about all there is.

The point to all this? In the fall my sister lost her job. After months of doing the work of 3 employees, burning herself out, receiving no support. Her anxiety was sky-high, she was losing weight. She still kept at it though, cause she’s not a quitter – until she chose to stick up for her employees to an abusive customer – and was made an example of over it. I feel that the company was ridiculous in how they handled it, and that she should not have lost her job over it. I told her, as I’ve told many people over the years, that an employer will replace you without a moment’s notice, don’t let your job be a detriment to your health, work to live and don’t live to work.

I lost the job I loved last week. Since coming back in the new year, I’ve debated with myself over and over again whether I should give it up, whether I should look into disability, whether I could take a leave of absence. My muddled brain couldn’t come to any decision. I felt every day like I was drowning, slogging through, just trying to survive until bedtime and hoping tomorrow would be better. My functionality came nearly to a screeching halt.

When you live with a chronic illness, the only way you can get by day to day is to normalize it. Your body gets used to being in pain – it hurts, but it’s normal. You get used to being permanently exhausted, it sucks, but you push through. If you think every day about how hard it is, how painful it is, how frustrating it is… a person just can’t live that way. It would be beyond depressing. So that’s what I did. I didn’t complain because I knew the complaints wouldn’t matter – they were the same every day, people would just get tired of hearing them. I wish I could find the quote again, but the truest thing I ever read about this was about how chronic pain is always new to the sufferer, but gets old very quickly to everyone else. So I don’t often complain. It’s a catch-22, if you complain all the time you’re a whiner, if you don’t, people assume you must be fine.

Sometimes things happen so slowly it’s like the proverbial slow-boiled frog. I’m a little more tired this week, next week will be fine. I’m more tired than last week this week, but maybe next week will be fine. Everything hurts worse than usual, but it’ll be better soon. By the time you realize it’s not getting better, only worse… you’ve gotten so used to it that you feel like you’re being ridiculous if you can’t handle it.

So for months I had disregarded my own advice to put myself first, that I could be replaced in an instant, that nobody had any loyalty to me. In my perfect little job, working with the people I loved, I thought I was safe. I’d talk to friends and family and say that work had gotten so hard, that I hated going but I loved my workplace. It wasn’t this job, it was working at all that had become too difficult for me. I knew it, but I didn’t really want to admit it to myself. I told myself I just needed to hang on until I could see the psychiatrist, the neurosurgeon. I told myself that I just needed my medication adjusted, I just needed some light outside, I just needed someone to fix my neck and I’d be fine. I thought that if there was a problem with my inability to work to full capacity most days, I’d be spoken to about it.

It turned out I was 100% wrong. I was blindsided with no warning, no notice, no discussion – given papers and told not to stay the rest of the day. That’s it, done. Dismissed. When I asked if there was anything I could do, I was told someone else had already been hired. And I was out of a job. Just… like… that. *snap fingers*

I thought that if I talked to my boss about how things were for me, that if I asked for leave, I’d either be let go or I’d leave everyone hanging. Every time I took a sick day, I heard the next day about how I let everyone down, it was busy, I made things hard. The last sick day I took, I came back to “You really screwed everyone yesterday.” There were a lot of days I couldn’t really work properly and I should’ve stayed home, but I didn’t want to let anyone down and I thought being there at half capacity was better than not being there at all.

It may sound like I’m complaining about losing a job, but I’m not, not really. I’m disappointed that I had no warning, that I didn’t deserve a discussion. I’m hurt by that. The decision was made for me, that I couldn’t work anymore, and that’s probably not a bad thing. Barely hanging on by my fingernails to a job that should have been so easy, I know that I am in no position to find a new job, and I know that I’ll likely need to go for disability now. That’s probably for the best.

I don’t know what I could’ve done differently. I think had I brought up that I felt I couldn’t work well, I likely would’ve been let go sooner. I think that this time, the illnesses and the injuries got the best of me. I hit a point where not only was my body overwhelmed but my brain was too, and I had lost the ability to even care about anything. My marriage, my job, my hobbies. Couldn’t care. Couldn’t work up the energy to. I’ve felt very defeated for a while now.

These days it’s hard to shower. Hard to pick an outfit. Hard to make a decision, hard to make food, hard to go shop. Everything feels difficult, everything feels like it takes more energy than I have. And still, I didn’t realize how bad things had gotten until I looked over the disability application and realized that so much of it applied to me. I’d expected my symptoms to look minuscule, I expected to feel like a baby for not coping and instead… it has shown me exactly how non-functional I’ve become.

Second point? If you’re dealing with someone with a chronic pain illness, and they aren’t keeping up, don’t assume they aren’t trying.

Imagine two people tasked with walking up a hill. One of them (Person A) has nothing to carry, the other (Person B) is carrying a 100 lb. weight. Person A arrives at the bottom of the hill bright eyed and bushy tailed, ready to go. Person B arrives already tired, because you know, the weight. Person A sprints ahead, maybe halfway up he starts to wear out a little and slow down. Person B makes it 20 feet up and has to rest. Person A gets to the top, a bit weary and out of breath, but he’s made it. He looks at Person B and yells, “What’s taking so long, are you even trying?” He skips down the hill and goes out to lunch with friends. Person B struggles to the top, hours later, and sits for quite a while. He wonders why it took him so long to do what Person A did in no time. He feels like a failure. He knows everyone else is going to look at him like he’s lazy. He picks up his weight and drags back down the hill. He goes straight home. He is exhausted and sore. He drops onto the couch and lays there for the rest of the day.

This is what it’s like living with a chronic illness like fibromyalgia, chronic fatigue, all those things that won’t kill you but just make life really, really difficult. You start out tired and sore, you get more tired and sore, you lose all ability to do anything long before the average person is even a bit tired. Tomorrow you have to get up and carry that weight again, and you never get stronger. People like me aren’t being lazy, we’re trying hard – maybe harder than you. It’s just that much harder for us to keep up.

Lesson: Take care of yourself first. Always. Period.

And for me, onto my next chapter I suppose.