For those who know me, that is not a surprising statement to hear. After all, I have a chronic autoimmune illness; one where fatigue is one of the most prevalent symptoms. Tiredness is as much a part of my daily life as food and sleep. Most of the time, it's a given.
But lately, my tiredness is more than physical. It's mental, emotional, and spiritual. It's the type of tiredness that makes me want to stop fighting the daily battle of living with Sjögren's, and the host of other medical issues, that have plagued me over the years.
Is it tiredness?
Or is it depression?
The label isn't important to me. Actually right now, there's not much that is important to me because all I want to do is sleep. Or veg out in front of the TV for days at a time. I get fleeting moments where I see a glimmer of my usual self - the self that enjoys the living hell out of life on a daily basis because she knows that life is short. And precious.
There are also moments, hours even, where I can put on a smile and appear to the outside world as my usual self. I reserve my energy for this act when I am with people who really matter to me, because I cannot help but think that those precious people deserve so much better than a morose, down-in-the-dumps shell of a person.
Or at least I did think that. Now I am beginning to wonder, what would be so wrong with being myself all the time and letting people really see me? All of me. Why do so many of us feel this burning desire to pretend? To be who we are not in order to protect our loved ones? When you live with a chronic illness day in and day out,there is only so much energy to go around. Do we really want to waste any of it pretending we are fine when we are not??
Many of you know that last September, I started a new part-time job as a school nurse. It was my first venture working regularly since I went out on disability in 2008. I had been working as a substitute school nurse for about a year and a half and I wanted to push myself to advance to working part-time, fourteen hours a week. Surely that was manageable I thought.
There were a lot of extenuating circumstances during my new employment. My gallbladder gave out on me and I suffered for months before I finally went in for surgery. I was also working towards my school nurse license, which took a lot of my energy and time. I was experiencing neurological symptoms and then a worsening of my pain and fatigue issues. For a variety of reasons, I found this new place of employment MUCH more stressful than my other job where I sub at. I enjoyed what I was doing at the part-time job, but the price I was paying physically was no longer manageable. Actually, it was never manageable. The only reason I made it all the way to January was because I was so damn determined to succeed.
That's really the root of the problem: my drive to succeed. After going out on disability, I spent YEARS trying to figure out how I could get back to work in some capacity. While out on disability, I started a blog and wrote a book. Some people would call that working but honestly, I do not make a living doing it. And then when I did start working out of the home (as a substitute school nurse), I spent even more energy figuring out how to work part-time on a regular basis. But that wasn't going to be my end point. I had a plan. I was going to gradually build up to being back in the workforce full-time, and nothing was going to stop me.
Especially not Sjögren's!
But it did. Despite a WONDERFUL three week run on prednisone around Christmastime, it all began to unravel for me physically and I made the decision to give my resignation with the caveat that I would still be interested in subbing at this school as well.
I was struggling so much in the weeks leading to my last day that when my last day came, I felt nothing but relief. However, I wasn't prepared for all the realizations that would come with leaving a job that I had worked so hard to get.
Looking back, it's obvious to me now that with my medical needs, this particular job was not the right match for me. But I also realized that no matter how hard I pushed and how badly I wanted to succeed, my illness was not going away. I think that a part of me thought that as long as I TRIED hard, it would all work out. My symptoms would become more manageable. I just needed to stay positive and optimistic. I just needed to do more self-care to make my work days more doable. I needed to have faith in God and then I would succeed.
That's the way I have always managed having Sjögren's syndrome: I stay upbeat and I always continue forward, constantly trying new treatments and working on ways to manage my symptoms. Be courageous. Be brave! Don't give up. Keep your chin up!
Or at least, not right now.
Because I am so damn tired.
And oftentimes, chronic illness is just a bitch.
I have been living with Sjögren's for at least eight years now. I do what I'm supposed to do to manage my illness. I do what I NEED to do. So in some ways, I have accepted my illness. But I am now beginning to understand that I have not truly accepted my illness. Not really. I have still been clinging to the hope that I can overcome it and go back to living a life similar to the life I was living before those first symptoms appeared. Leaving my job has helped me to see that it is good to push your limits and to have goals, but there is also something to be said for accepting yourself for exactly where you are at in any given moment.
This brings me to now, this day. A day in which I woke up in the morning and the first thought I had was that I wish I hadn't woken up. Because lately, waking up means facing another day of challenges that drain the living hell out of me. I have to force myself to not snap at people. I cry at the drop of a hat. It's hard for me to be around people because they are not going to say what I need to hear. What do I need to hear? I need to hear that it is OK to be sad. It is OK to want to lie in bed all day and not want to do anything. Maybe not forever, but at least for a little while. I need to hear that it is OK to mourn the person I used to be. Because let's face it, that woman is gone. I don't want to hear that I can do anything I set my mind do because the reality is, I cannot. Maybe, at the end of the day, it's not so much about what I need to hear from other people, but rather, what I need to hear from myself.
Maybe acceptance and living with a chronic illness is less about being brave and more about being authentic. I think for me, true acceptance would mean being OK with where my body and mind are at on any given day, without judgement from that inner critic that says I need to be better. Or stronger. Acceptance would mean valuing what my body can do and not what I wish it could do. It would mean finding a way to live in a state of grace no matter what physical challenges lie in front of me.