Life with Chronic Illness

The Spoon Theory, Christine Miserandino, Lupus, Rheumatoid Arthritis, Elaina Avalos

Tonight was another night I should be working. I did. But I quit way before I should (?) have. Quite honestly, I could work all night. It’s the nature of my job. It requires a lot of administrative work. You can think of me as a spokesperson of sorts. One of the primary functions of my job is to communicate official information and respond to inquiries from those internal and external to the “organization.” That is the priority (always) for me. That is a necessary function of my role. But that often means, particularly at very busy times (like now), that everything else slides. Slide and pile. It slides and piles up.

What that slide used to mean, was working 7 days a week and at times, when there were particularly large “projects” or events, I worked late into the night to make up for the nearly full work day that I was interfacing with “customers.”

What am I saying? I developed some unhealthy habits. I absolutely do care about my job. I was very passionate about it. But, it has come at high price – my health and relationships. I have had a chronic autoimmune disease for many years. It could be several. That may be more clear over time. My first diagnosis was “Mixed Connective Tissue Disease.” The short version explanation for that diagnosis, is that you shows signs and have lab results indicating the possibility of multiple or overlapping autoimmune diseases. My first rheumatologist was leaning toward lupus – with issues related to my lungs. But he also thought rheumatoid arthritis was possibly lurking as well.

He immediately put me on the antimalarial drug, Plaquenil. It was believe to slow the effects of autoimmune disease, particularly for lupus patients. If I remember correctly, the link was discovered after autoimmune patients took the antimalarial for its intended purpose, and their autoimmune disease slowed or went into remission. I took Plaquenil for more than 10 years. I credit it with having a significant positive impact on my life. I believe that it slowed the deterioration of joints and the attack my own body was mounting on itself. But then it stopped working. That began the process of other trying other meds. Eventually, my new rheumatologist (new when I moved back to NC), diagnosed me with rheumatoid arthritis. I personally believe (haha…Dr. Elaina in the house), that there is more than one thing going on. But that’s where we’ve been for quite some time – rheumatoid arthritis.

RA can go into remission. And I can experience flares – or spikes of disease activity. I have experienced few true remissions. Which is why I believe his diagnosis may only be partially correct. I can experience periods of time where I feel much better. But stress, in particular, can not only cause flares, but worsen the path the disease takes, too. Chronic illness requires you to take good care of yourself, prioritize wellness, self-care, etc. I don’t and haven’t, for the past 11 years. Maybe 10 is more like it.

I haven’t, because I have put all I’ve had available, to my career. It has come with a price. And I’m not exactly saying I shouldn’t have been so dedicated. But I had no balance. DO NOT BE LIKE ME. DO NOT. I am begging you Interwebs pal, don’t do it. Don’t look back at 45 (as I am) and see your health slipping further down the crapper (haha), with your greatest hopes and dreams for yourself – so far out of your reach. Notice I didn’t say impossible? But man, they’re gonna be tough to get to.

But I digress. I am not well right now. I haven’t felt this bad in some time. Very few people – okay it’s just the doctors and Mom (and probably my insane dog), know this. Because I don’t talk about it. I was terribly sick today. Sick to my stomach. I take immune suppressing drugs and they can have side effects like this, sometimes. I have run out of nausea medication. For some reason, this nausea and sickness has been hanging on for the last two weeks. This week, I’ve had few actual meals. Yesterday, I was in so much pain, in my muscles and joints, I wondered how I’d make it through the day. But guess what? The show must go on.

I am single. I have one income. I have no dependents. I don’t own property. The government, though I work for it and would like a freaking break (haha), takes a ton of money from me in the form of taxes. Lol. I can’t stop. I gots to pay the bills. I take home a pittance every two weeks. I. Can’t. Stop. There is no other option. The problem is, how do you find balance? If I push, people think I’m fine. They have no idea how sick I am or how much pain I’m in. I don’t take pain meds – unless it’s over the counter.

“Be kind, for everyone you meet is fighting a hard battle.”

– Ian Maclaren

So I keep pressing. And I’ve hit a wall. I’ve hit the wall, very hard. I honestly have felt, at several turns this year, that I was drawing closer and closer to being hospitalized if I didn’t make changes. I’ve made some. I’ve been working hard at those changes. But there are times – like right now, that I’m truly uncertain how to make it another day. This morning, I was awake at 5:00 AM with my to-do list, rolling through my mind. But then I started getting sick. I didn’t want to go to work or any meetings either. But that just was not one of my options for today.

What does one do, in my position, with these big events coming and serving as the public face of an “organization” to its customers, but no physical energy to sustain? I come home and try to eek out more work. But it’s too much, friends. I will not fail this event or the people involved. But it comes at a heavy price for me personally.

What’s the answer? It’s not an easy one to discern. I know people think they can simplify things for you, into bite size, five bullet point articles and “life hacks” – but that is just not how it works for most of us. Finding balance is also hard work. If you are gearing up for this reality of making hard choices in the face of illness, let me tell you – don’t buy into the lie that you’re going to figure it all out right away. You might. But, if you don’t – you are not alone. It’s so hard. Especially when you must do it on your own.

This is life with chronic illness. I know there are countless others all across the world in these same shoes. I think there is power in sharing our stories. It is through story, that I believe we learn and grow and come to accept great truths. When we share “first” it gives others the gift of going second – to say, “Yeah, me too. Thank you for sharing this. I’ve felt so alone.”

The inner battles people face, the physical struggles they may endure, and any other number of things that impact their lives (our lives), feel very isolating sometimes. I have shared some of these things on my blog in past years. But I’ve often removed them, because of my awareness of what I do in my professional life. I’ve never felt comfortable switching between these two things. And yet, I’m a writer with a calling to be vulnerable in that. My day job and my calling often seem very much at odds. I’m not going to shrink back anymore though.

I’m here to say, I’m faltering. It’s hard. And I’ve hit a wall like never before. I don’t have the luxury of stopping. I know so many of you are in the same boat. If you’re feeling the strain and wondering how to keep pressing, please reach out. We can figure it out together.

Life with chronic illness is not easy. I’ve shared on the blog things I work on, to be well. Sometimes that looks like the podcasts I listen to. It’s therapy. It’s meditation. It’s prayer. It’s buying flowers at Trader Joe’s. I’m not getting it (fully) right, yet. But I’m closer to getting it right than I ever have been before. I’m working on it.

As I sign off, I wanted to mention the image above. The Spoon Theory, originally created by Christine Miserandino, has perfectly explained the choices a person with chronic illness makes, in order to get through an average day, and into the next. That is summarized above. But her website, “But You Don’t Look Sick” is a great resource and goes into greater detail.

I know people don’t like to talk about these things at times, but if you would be open to it, I’d love to hear from you about the ways you manage your own chronic illness. What do you feel like you’re really good at balancing? What do you find you still struggle with?