On success in chronic illness

Mornings like this I find myself floundering. For the second time with this illness, I find myself detached from the outside world. After months of striving to balance an ever- decreasing workload with an ever-increasing symptom load, I stepped back to make my health my number one priority, something which my body no longer deemed a choice. On the one hand, it feels reasonable to wait to return to “the world” once I can shower, prepare food, do therapeutic exercise, and otherwise maintain my day to day life with a reasonable symptom load. When I try to perform above my capacity day after day, and my symptoms are consistently high, quality of life suffers steeply.

Connecting with an online community of other “chronies” (as I’ve started saying) fosters both solace and insanity in my head. There are many success stories and endless promises that certain lifestyle changes, combined with acceptance of a new normal, can allow the ill to return to a semi-normal life. This gives me hope, and useful tools, but also leaves me frustrated that all of my efforts have not yet returned me to this elusive place of sustainable functionality. Some days I find myself frenzied, striving frantically to incorporate as many positive practices as possible. If I do four types of meditation daily, a variety of therapeutic exercises, maintain a consistent eating and sleep schedule, manage my emotions, and check off the boxes next to the list of patient management techniques, then I should get better, so these things say, and so I say to myself. So I practice being a model patient. For months and then for years. And yet here I am. This is not to say I haven’t improved in symptom management, the books and techniques I’ve found helpful have become my new holy canon, and I a devout follower, acting with no little amount of faith in the unseen promise of the holy grail. But I still face moderate to severe, disabling symptoms on a daily basis. So what am I doing wrong? Perhaps I’m over emphasizing The role of the illness in my life. Some literature suggests I have become over-identified with the role of being sick. If I can change my perspective and adjust my life to build up other identities, my perception of my pain and illness will adjust so that it is no longer such a strong force in my life, they say. And yet, my bodily capacity has comprehensively redefined my sense of self. It is a force that binds my body in ways that willpower and positive management cannot cure, and that requires immense determination to maintain basic activities of daily living (think getting clean, eating, maintaining home, etc).

So still, I find myself running circles and tying myself in knots as I fight daily to obtain a sustainable life and symptom load. As I grasp for certainties, I realize the fallacy of trying to obtain concrete answers for the situation. I’m struggling to gain control over (an) illness(es) that are poorly understood in the scientific and Lay communities. Everyone, myself first and foremost, wants the patient to return to functional daily living, involving activities of self-care and work. The onus for obtaining this model of success often falls on patients, who must at once accept long-term changes, yet also strive to minimize the negative effects of these changes on themselves, their loved ones, and broader society. This is not to say that the patient is powerless or that pain and illness management techniques are not helpful. However, obtaining positive coping skills does not eradicate illness, and emphasis on patient management can cause the unintended effect of patient blame, including self blame, for lack of concrete improvement. The body, which was once taken for granted, is now the target of myriad, often contradictory, suggestions that promise the patient return to normalcy. When these fail or fall short, the onus of blame too often falls back on the now problem patient, rather than the broader lack of understanding and knowledge about the illness and human body itself.

So as I chase myself in circles, striving daily to transform my own illness experience into a success story, I wonder where there might be room for a little more compassion and a little less frenzied grasping. Can we gain a greater sense of control by accepting that this is not a force which we truly can control? Most success stories seem to emphasize a patient over-coming or surpassing their role as a patient. Might there be space for a success story of a patient who is simply coming to terms with the bodily limitations of illness, and it’s consequent emotional and social repercussions? Is there an opportunity for a patient to be successful by doing their Best to adapt, cope and accept their new reality simply as it is today — not with hopes for a different and more functional future, but rather a growing respect and honoring of the bold endurance and courage that it takes to embark on each new day as an unknown bodily-bound Journey over which we do not have complete control? And Can we create gray space in the medical model for the patient who lives in the undefined, ungraspable, incurable space between sick and well?

On pushing vs surrendering

I’m just reaching the end of the two-week period of acute immobility due to back spasms. These moments provide ample opportunity for thinking, perhaps a little too much. I spent part of the time wandering through guilt-induced thoughts, typically starting with the phrase “I should(n’t)”: I should have this better controlled by now; I should be pushing myself harder today; I should be more helpful to my significant other; I shouldn’t feel so sorry for myself; I shouldn’t be resting like this; it goes on and on…As my symptoms have lessened, the haze has started to clear, and these thoughts have revealed themselves for what they are: distorted.I am disproportionately hard on myself. It’s clear now that  I would speak very differently to a friend in my shoes. When I can see more kindly, I can acknowledge that I’m doing my very best in a very trying situation.

With this kind of perspective in place, I’m able to see how much emotional and mental pain I create by pushing myself so hard. There is no perfect way to manage an Illness. Yet I try very hard every day to find new ways to improve my quality of life and work with(in) these challenges. I’ve often said, that when I have to push to do everything, it’s hard to draw the line where pushing becomes harmful. It takes a lot of determination to get up and accomplish anything when your body is screaming at you that it would rather not be moving. Yet, I know that listening and spending my entire day in bed  will really only make me worse. The challenge becomes pushing without pushing too far, and I tend to kick it into overdrive and get into a place where I’m completely ignoring my body’s signals (In fact, I’m doing it right now…). What I’m realizing is that pushing at all  may be the problem. Pushing entails working against something, fighting against something, resisting my body and denying its symptoms. What will happen if I just surrender, if I let my body be the driving voice? My fear is that my world and my body will shut
down, But my hope is that by working with my body and with my symptoms, we (my body and I) can embrace and create a new daily reality.

Patient practice: It’s frustrating to feel like your body is controlling you and it’s natural to push back against it. But it’s not sustainable. I’m going to start pretending my body is someone else’s and that’s my job to take care of them. I’m also setting reminders on my phone throughout the day to do a few minutes of deep breathing allowing me the opportunity to check in with my body and my brain. Are you being harder on yourself than you would on someone else? Can you find a little ways to treat yourself like you would a friend? Is there something you’re resisting on a regular basis, perhaps something that
gives you a false sense of control that really makes you more enslaved to your symptoms?

On finding freedom in illness

Creating and sticking to a daily routine can be a critical part of symptom management.  The sense of unpredictability in chronic illness can be overwhelming, and daily routines and rituals can help us to gain greater control and predictability of our symptoms.  However, figuring out the routine that works for you, and then sticking to it, is a challenge in itself.  I find myself struggling against two things: First, on both good and bad days, I’m tempted to deviate and fulfill the urge to simply do what I’d like.  I struggle against feelings that this illness has consumed my life and my voice, and I want to rebel against the confines of a routine.  My will does not want to recognize that my freedom & independence are actually fostered through the stability and predictability that comes with sticking to effective daily routines for symptom management.  Second, I struggle to create a routine with sufficient flexibility to account for the variability of my symptoms.  On good days, I’m able to stick to my exercise routine, prepare food, shower, or even socialize.  Other days, I need to scale things back, and find myself struggling against the urge to push myself, driven by the long list of “shoulds” in my brain.  It’s an ongoing process of trial and error, requiring a higher level of self-compassion than I am typically able to offer myself.  I also tend to overemphasize scheduling pain and fatigue management techniques, and forget the importance of scheduling time for just enjoying.

Patient Practice: Changing our habits and routines can challenge our sense of self and we can feel the loss of spontaneity that we once had.  Brainstorm one or two ways to reclaim your routine from your chronic illness.  Is there something you love to do that you set on the back burner while you’ve been prioritizing symptom management?  Is there a daily ritual you can incorporate that is simply just for fun?  By making your routine your own, you increase its sustainability while reclaiming power from your illness.

On pain brain

During time periods of high symptoms it is easy to get overrun with what I call, in my case, pain brain.  During these days, weeks, or months, a dark haze settles over my perception of the world and myself.  Because my body is suffering, my mind suffers too.  It is important to remind yourself during these times, that the fog will lift and in a few days, weeks, or months, you will begin to see more clearly again.  When simple tasks feel overwhelming, when you’re struggling with thoughts questioning your own worth, and your mind fills with questions about the future that your body cannot answer, this is a sign you’re experiencing your own pain brain.

When you’re living in the pain brain, it’s a good idea to try not to listen.  Don’t make any decisions.  Don’t take your thoughts seriously.  Allow yourself time for extra self-care.  And most of all recognize that your pain brain will be temporary.

Patient practice: reminisce about a good day you had in the relatively recent past.  Use it as a reminder that while this moment feels endless, deep, and dark, it is temporary.  Regardless of how it feels right now, there are brighter days in your future.  Talk to a loved one, let them know you’re having pain brain and the thoughts you’re struggling with.  Let them reframe your situation for you, putting it in a kinder light.  Soak up their love, and if you can, go outside and soak up some sun.

On looking up (and being stuck on the ground)

Frequent and debilitating low back spasms are one of my most common, recurring, and disabling physical experiences. It makes it nearly impossible, if not completely, to sit or walk. During these days/weeks, I make a nice bed on the floor, gather everything I need within arms reach, make up songs, watch lots of TV, and try to combat the depression and hopelessness that can hit when you’re experiencing high pain coupled with high disability for an extended period of time.

 

On Grief: 48 Hours After Diagnosis

2 years and 10 months ago, to the day, I woke up in pain. Not a headache, not a little soreness, but a pain that racked my body such that I spent the next 3 weeks laying on my living room floor desperately watching every episode of Friends and Gilmore Girls to distract myself from my fear and agony. It has been a long, challenging journey from that day to today, filled with a lot of crying, laughter, anger, gratitude and a heck of a lot of love.

48 hours ago I was officially diagnosed with Fibromyalgia. And it’s been a long, challenging journey from that day to today, filled with crying, laughter, anger, gratitude, and a heck of a lot of love. It’s gone a little like this:

The First 24hr

  • 4pm – Received official diagnosis
  • 430 pm – Call friend and say aloud for the first time “I have Fibromyalgia.” Too shocked to cry.
  • 5pm – Feel great sense of relief wash over me. Finally, an answer!
  • 8pm – Scour the internet for information. Pat myself on the back for how much I’ve already learned about chronic pain management. Sigh at the limited options left for me moving forward.
  • 11pm – Go to sleep. Yeah right! You thought you’d sleep?! What were you thinking?
  • 2 am – Get out of bed. Channel energy into playing with my boyfriend’s model skeleton for anatomy class and make an “art” statue out of it.
  • 4am – Fall Asleep
  • 11am – Wake up stiff and sore. Oh, the joy of Fibromyalgia mornings. Now I know what it is, this is good. Now I know this is how every morning will continue to be, this is not so good.
  • 2pm – Go out to lunch. My body is protesting every movement I make. I walk slower than everyone else and try to smile. I have to get used to this for real now. I can do this. I have to do this. 
  • 5pm – Cardio. “You can have weak muscles that hurt, or you can have strong muscles that hurt.”
  • 8pm – Scour the internet for more info. There must be something more I’ve missed.
  • 10pm – Feel reality kicking in with full force. Settle in for what I know will be a long night.
  • 1am – Thank god, Friends is on TV.
  • 3am – Angels in the Outfield comes on. I don’t remember it being this corny when I was a kid.

24-48 hr

  • 5am – Sam is going to adopt JP and Roger. Very strange skeleton-man Angel makes last appearance. “We’re going to be a family now!” I nearly cry, but its a smidge too corny.
  • 5:10am- I climb the stairs for bed. Next thing I know, I’m sobbing on the floor against the bathroom cabinets. I am so grateful to have an answer. I am so grateful to not be ill with any life-threatening condition. I am so grateful for my support. I am so grateful to have some more steps to take. I am so devastated that I will continue to be in pain. I am so devastated that this will continue to affect every aspect of my life. I am so devastated I will never be able to return to life as I once knew it.
  • 5:30am – Boyfriend finds me collapsed on floor. Sits with me. We grieve what has been lost. We grieve for the hard days to come. Boyfriend points out that in a few days more than half the time we have been together will have been post-wakingupinpainday. This is sad, but deeply comforting. We can do hard things together; we can make this work.
  • 5:45am – Boyfriend pulls crunch ice cream bar and smores poptarts from thin air. Oh yeah, we got this getting through tough stuff thing down.
  • 6am – Sleep
  • 11am – Make coffee bleary- and teary-eyed. Do some gentle yoga. Remember to breathe.
  • 12pm-3pm- Cry at every corny thing that happens on Boy Meets World. Laugh heartily when Eric says “I must say, I am reveling in the mastication of these comestibles!” If Eric can get through the SATs, I can SO do Fibro.
  • 4pm – Cardio. Rock out to Destiny’s Child “I’m A Survivor.” I may have fibro, but my body is way too bootylicious for ya babe.

While unleashing my strong-willed inner pop diva, I recognize the importance of letting ourselves experience pain and grieve when we have lost. Trying to stay strong without grieving is like trying to build a house without any tools. When we’re hit over the head with loss, we’ve got to rebuild. But without grieving, without letting yourself feel the hurt, you also close yourself to the exact tools that you need to keep moving forward. Without grieving, you miss out on feeling the gratitude for being able to experience what was lost, and for all that is still beautiful in your life. You don’t get to feel the love of your friends and family, who step in with icecreamcrunchbars and phone calls and text messages and hugs, while they bravely walk beside you through this tough moment. You don’t get to feel the joy in knowing that you don’t have to rebuild your house alone. And you miss out on that critical moment where you know, deep down: This is hard, REALLY hard. This hurts like hell. But I’m still here, and I’m going to be stronger and braver and more loving for it. And I’ve got some kickass people in my life who are going to be here to back me up, through all of it.

Pain is a part of life. It’s gonna hurt, and that sucks. But I can see that now that I’m building a life with a lot of meaning, filled with gratitude and love and joy and icecreamcrunchbars. And to me, a life without all of those things (especially the icecreamcrunchbars) would suck an awful lot more.

“The dark does not destroy the light; it defines it. It’s our fear of the dark that casts our joy into the shadows.” – Brene Brown, The Gifts of Imperfection


Love, Alex