When Home Feels More Like a Prison

By Mia Maysack, PNN Columnist

Recently, my primary care doctor recommended I go in for a “sleep study,” which is exactly what it sounds like. My immediate thought was, “I've been doing my own sleep study for 28 years, want to know what I’ve learned?”

But jumping through society's hoops is an art form that I've somewhat mastered, so let's flash forward to the appointment that took place weeks later.  

I’m in a closet sized room with a sleep study “fellow” -- meaning I'm going to sit there and essentially explain my whole life story to him, and then I get to do it again with the actual doctor.  

He's asking me about sleep, naturally, so I tell him there’s no sense of regularity as I am fortunate if I get a couple solid hours of sleep a night. I ordinarily never reach my REM cycle, so eventually my body will crash and burn -- resulting in too much sleep that's damaging to my natural rhythm and makes the existing problem worse. 

Chronic pain impacts every aspect of my life, but they have no interest in discussing that because this appointment is only about sleep. How is it productive to disregard the biggest motivational factor in the situation at hand?  Guess I'll have to go to medical school to find out.

Then comes the medication talk, which has actually gotten easier over the years as I've stopped playing the role of a pharmaceutical guinea pig -- hence there being less to discuss. All of the drugs he recommends I have already tried, and I am now only interested in holistic approaches.

This is when he brings up anxiety and depression, almost as ammunition against me -- or so it felt like. Do I consider myself anxious or depressed? How long have I been afflicted?  Then comes a whole new list of pill suggestions that are thought to help anxiety and depression. I feel like we are both wasting our time.

pain art courtesy of painexhibit.org

pain art courtesy of painexhibit.org

"Anyone would feel that way if they endured never-ending, agonizing pain,” I told him.   

He looks at my paperwork, sees that I've selected “homemaker” under employment and proceeds to say, “You don't work, so..."

This remark was declared in such a way as to suggest it is no wonder that I'm not tired, because I don't do anything all day.

"I actually work quite a bit," I objected and proceeded to list my duties.

I maintain the house while my lovely fiancé works. I cook, clean and do laundry. I have ownership over taking care of our doggy daughter, Aiva. I facilitate monthly group meetings, write newsletters, moderate online forums and volunteer countless hours. I also attempt to maintain a bite-size version of a social life and strive to make self-care a priority. 

Oh! And I live within a body that mostly feels as though it is deconstructing from the inside out.

He reported that naps are detrimental to our health, which is a comment I shrugged off because, clearly, he's never been chronically ill and has yet to be a parent.

People may peer into the window of my life and think to themselves how nice it must be to sit around at home all day while a man goes out to earn his keep as well as mine. But I've got some quick facts for anyone that would spend even a split moment envying the life of a chronic pain warrior.

I've been in the process of pursuing disability for just shy of four years -- which I began a decade after I really should have. But I was so hard on myself and likely a bit too proud, for this isn't at all the life I had envisioned. But I am grateful and committed to making the best out of it while demanding my ailments be validated.   

Prior to getting engaged, the place we live in was paid for in full by me. Even after becoming unwell to the point of stepping away from full-time work, I still continued to attempt working part-time outside of the home. But I was digging myself a hole in the ground, which led to the need of accepting even that was not in the cards, which led to the emergency need to access my retirement funds. 

I do not share this information for attention or pity but merely to drive the point home as to how crippling all of this can be on a person, especially over a long period of time. For some of us, home is less a place of tranquility and feels more like a prison.

Yesterday, I cleaned and organized our home, got laundry done, ran some errands and cooked a delicious healthy dinner. Today, I stayed in bed until 10:45 am, didn't leave the house, have difficultly navigating the stairs, hope to vacuum later if able, and have pain in every extremity. 

These are things that this fellow, as well as the doctor that graced us with his 30 second presence, didn’t seem to care about, let alone have the time to begin to understand. 

I'm thankful that I can do the things I can when I am able. It's imperative we take full advantage of the gifts we have while still able to do so, as we never know what tomorrow will bring. All it would take is a slight change in circumstance to make what may feel like the worst even worse.

Living as Spoonies, we are much too quick to accept being dehumanized. We even do it at times to ourselves.  May we all unapologetically let go of the weight of feeling we must somehow justify, explain, excuse or defend ourselves. Do what you can, where you are, with what you have, and know that is it both worthwhile and good enough.  

Benefits from my sleep study appointment include the mention of melatonin supplements, something I've tried in the past and will consider trying again, as well as “light therapy” to promote a regular internal clock which I plan to follow up on.

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Mia Maysack resides in Wisconsin.  She lives with chronic migraine, cluster headaches and fibromyalgia.  Mia is the founder of a wellness and life coaching practice for the chronically ill, and was recently honored by the U.S. Pain Foundation as its “Pain Warrior of the Month.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.