Monday, February 1, 2016

Accepting Chronic Illness

I am tired.

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?
Or grief?

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.

It wasn't.

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!

No longer.
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.

Authenticity.
Acceptance.
Grace.



15 comments:

  1. I have been living with sjogren's for almost 14 years and I still have not accepted my illness. Some days I do veg out in front of the TV. I have no choice, my body doesn't ant to move and I battle fatigue all the time. It's a struggle to get through the day. Sometime I catch myself thinking "When I get back to my old self I will do this or that again". But I know that is not going to happen. I find myself still grieving for the person I used to be. I liked her. I like myself now, but I don't like the fact that I can't do thing because I'm so tired. I'm not motivated and I don't even want to socialize. I force myself to.

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    1. I understand about forcing yourself. That is pretty much how I have spent the last six months. Now, my body is rebelling in a big way. Thanks for sharing!

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  2. I was diagnosed with Sjogren's in 2003. Since that time I have struggled on a daily basis with all the medical concerns that come with it. This past year I found a physician who suggested some easy and not load bearing exercises to help manage some of the symptoms. I have to say I was very skeptical especially since fatigue was one of the major problems I was having. I started out with a Pilates/Yoga combo stretching/flexibility exercises just a couple days of the week for 20 minutes at a time. Very hard to start with but eventually became easier for me to do. I have since added strength training using light weights also for 20 minutes at a time for a couple days of the week. I also added some very low impact aerobics again at 20 minutes. I rotate these exercises 5 days of the week so as not to tax my joints and muscles. And believe or not, it is helping me cope better with Sjogren's & also fibromyalgia. I have more energy and can do more for longer periods of time. My joint pain has been substantially reduced. Granted there are still other symptoms that I will always have but being more flexible, having more energy and the ability to do things I did before easier certainly has made it better. It may not work for everyone but I think it is certainly worth a try. It has even improved my moods and disposition!

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    1. I definitely do believe it! Exercise has become an important component of my treatment plan. What I do depends on the day, but the most beneficial exercise has been water aerobics and yoga.Thank you for the reminder!

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  3. Have you had your hemoglobin and thyroid levels checked? It's quite common for Sjogren's patients to have thyroid disease (http://www.ncbi.nlm.nih.gov/pubmed/17558463) and also to have anemia (http://www.ncbi.nlm.nih.gov/pubmed/20174847) I've been dealing with BOTH for a couple of years (I've had Sjogren's for over 20 years and I'm now 71). Some days I'm so tired I can barely function, while other days I feel almost normal. The main thing you need to do is take care of yourself and listen to your body.

    BeckyJo

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    1. Hi Becky Jo, I am due for labs today so we'll see how the hemoglobin level is. I am already being treated for hypothroidism. Thank you for the feedback!

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  4. Once again, we are in the exact same spot. I just gave up the fight. I can't do it right now. And by admitting that I have been flooded with people saying and doing exactly what I need. I know it won't last. And I won't let my fear of losing support keep me from telling the truth. I'm tired. I want to give up and I can't do this on my own right now. It's too hard.
    On a side note, my neuro stuff has been very bad too. We should talk soon. I've had a lot of tests and they might interest you or be helpful. Love you Chris. Theresa

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    1. Yes, we will talk for sure. Love you too!

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  5. We are grieving the loss of the person we were, the life we had the future we planned. Grief takes as long as it takes.some days I weep for her, the woman I was.

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  6. So glad to discover this page....I could have written this exact article. I had to stop working in 1998 due to Trigeminal Neuralgia (known as the Suicide Disease) AND Glossopharyngeal Neuralgia...which is 10 times less common than Trigeminal. In 2002 I underwent brain surgery for the GN, which was somewhat successful, as I was able to come off of a massive dose of anti-seizure medication that left me in a constant brain fog. In 2011, after five years of symptoms and multiple doctors, my rheumatologist finally diagnosed my Sjogrens Syndrome. I also deal with migraine headaches (post car accident in 1989) and fibromyalgia. I am on multiple medications to deal with the various medication conditions that have literally robbed me of the life I once loved. But the biggest challenge on a daily basis is the fatigue. I find myself spending an increasing amount of days in bed, with the rare good (i.e. productive) day. I am 57 years young, and hate feeling like life is literally passing me by. As I sit here typing, I am trying to psyche myself up for a long overdue vacation with my husband, my brother and his wife - we are taking a cruise in a week's time. Seven days that I have to be up and mobile. Part of me is looking forward to it - the other part is dreading not feeling well and ruining the vacation for the ones I love. Marion, I feel just as you do. I hang on for the good days, and try to ride out the not-so-good ones. Sometimes, the sense of loss is just too much to bear.
    In friendship and understanding, Leslie

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    1. Hi Leslie, thank you so much for sharing your thoughts with us. I, too, frequently feel the same way in regards to traveling and vacations. My husband and I just booked this year's vacation in Ireland...a dream trip and bucket list item for us, especially me. But with it comes fear and uncertainty, both of which I am working at getting under wraps.

      I hope you have a fantastic vacation! - Chris

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  8. Hi Christine. I just happened upon your site and this post brought me to tears. I'm in the process of diagnosis (7 years long now). I've been diagnosed with everything from the Tired Mom Syndrome to adrenal insufficiency. The current theory is Sjorgren's and I'm going through all the testing now. What you say resonates with me on a level that no one in my day to day life understands. Beautifully said that acceptance is "less about being brave and more about being authentic". This is my goal in life right now. I swear living with chronic illness is like living a game a chess every day of my life; constantly having to strategize my next move and how that move may or may not impact EVERYTHING from my ability to work down to basic bodily functions like being able to go to the bathroom. What I run into is denying my reality and living in a constant state of 'when I get better' or 'I need to find the right diagnosis/ treatment and THEN' etc. It is my goal to live authenticly - being ok with where my body is in any given moment instead of living that chess game constantly striving for something that isn't and may or may not ever be, worried that I'm the cause of this illness or am making it worse or missing some critical piece to the puzzle that will make it magically go away. I feel like finding that place is the key to peace, you know? Finding a way to live authenticly, being present and accepting of what actually IS in this exact moment quiets the constant mind chatter and opens my eyes to the amazingness of being on this earth - the beauty of something as simple as my dog curled up next to me on my bed or the season change going on outside. I don't want to miss my life being stuck in a pattern of putting on that "brave" face and "fighting" for a different reality and I want to be ok with being sad, devistated, crushed when those feelings pop up without feeling like it's some sort of weakness or personality flaw (or worse, the depression label). I just want to thank you for being authentic and for sharing that with your readers. Such a gift!

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    1. What a gift YOU are to me this morning! Thank you for sharing your thoughts on this subject. I never thought about the analogy to a chess match, so that is so accurate. I agree, my life has definitely gotten better and more manageable since accepting the reality of my situation instead of waiting for "when I get better", etc. I just love this comment!

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