Living with Chronic Pain

I just spent an hour or so crafting an email to a young woman looking for some support that I was connected with through a mutual friend. A young woman who lives with chronic pain and has tried using mindfulness as a tool to work with better managing her pain levels, with little success.

Knowing how best to respond to these sort of inquiries has been a challenge for me in the past. In my view, trying to take up meditation for the first time while in the midst of great difficulty (physical or otherwise) is just extremely difficult, if not near impossible. But I wound up finding an angle to share from that I feel pretty good about. Here is the email in its entirety, in hopes that it may offer benefit to other fellow folks who live with chronic pain as well.

Dear ________,

My apologies for the delay in getting back to you. Thanks for writing and feeling comfortable to share with me a bit about what you’re going through and your experience with mindfulness in relation to living with chronic pain.

I myself have a nerve condition called CRPS, which I developed when I was in my late 20’s (I’m now 40-years-old). I was on meds for a number of years which, as you said, took the edge off. I also walked with a cane for a few years as a result of my pain and challenges in moving. I’ve been off my meds now for a few years and only use my cane once in a great while, on my high pain days. I’m on disability for my condition but I am able to work very part time.

What you shared in regards to when your mind quiets it then floods with emotion/grief makes so much sense, I can totally understand that based on my own experience back in the beginning of my journey with living with chronic pain. Meditation is not a one-size fits all approach – and especially when it comes to living with chronic pain, I think it’s important to be aware that meditation can bring up more discomfort in our mind than it helps to alleviate in the body.

I can share from my own experience a couple of things that have been incredibly helpful – and I’ll share too that both of these things took me a long while to really “get” and truly understand in a way that I was able to benefit from them and experience a reduction in my physical pain levels.

1. Mind/Body Connection. As a mindfulness practitioner since my early 20’s, I was grateful to have some background in the practices of mindfulness and sitting meditation before the onset of my illness and pain AND it also took me a long while to really see how closely and intrinsically linked the mind & body are. After my injury (which is what led to my nerve condition) as time went on, I saw more and more clearly that the more I generated stories of thought about how bad the pain was, how awful it was that I’d be in this pain forever, how I’d never be able to do X Y Z again, and so on, the more these thoughts and stories amped up my physical pain. As soon as I started thinking about how bad the pain was and started running with that story, my pain was immediately worse. So a big game changer for me with my pain levels had to do with making friends with my body and with my pain when it kicked up – prior to making friends with my body, I treated it like an enemy with which to battle and fight against. I would literally say (internally) to my body: I hate you, I hate this, NO! And this fight mode increased my pain, every time. So I learned to start making friends with my body and my pain – when I was unable to do something I wanted to do, when I was bed ridden with pain, I would say to myself: It’s okay body, I’m here for you, I’m going to take good care of you. And this befriending process changed my experience with pain almost right away, because I wasn’t adding to the fury of it by tensing up and hating and fighting against my own body. I would also put my hands on the high pain area and send it kindness through light touch, helping to care for my body. And as hard as it oftentimes was, I would smile to my body when my pain was unbearable. These friendly approaches to my body were very helpful and an important part of learning how to better manage my pain.

 

2. The Art of Resting. Gosh this one took me a hella long time to embody. Friends who have known me for a long time will often ask me what changed in regards to my condition, as they saw how bad it used to be for me, walking with a pain and being incredibly limited in movement with high pain levels and now I’m at the point where no one would know I’m someone who lives with chronic pain and physical limitations. And the answer I give them is this: the greatest thing that has helped my condition is that I’ve learned the vital importance and power of the art of resting. It used to be that I fought against resting tooth and nail – No! I shouldn’t be resting, I should be doing something more important & productive!! Resting means I’m lazy and selfish and and and!!! Despite what my body was telling me very clearly, I would rally against resting, trying to push through with the no pain no gain sort of approach (which is just death and destruction to those of us living with chronic pain). And early on, even when I was laying down (because I had no choice but to lay down because my pain was so bad) I certainly wasn’t resting – my body was laying down but my mind was super spinning and fighting and hating the fact that I was in pain and laying down in the middle of the day. So for me, I learned that the art of resting involves resting both body & mind. It became absolutely necessary for me to learn how to rest without feeling guilty about it; without feeling like I should be doing something else. It took me a lot of practice – and it was worth every bit of the challenges I had learning how to do it. For me still currently, I regard resting/napping as my super hero power. I am able to do quite a bit with my time these days and it’s largely because I diligently manage and balance my time every single day in between activity and rest. I put a great deal of importance on the art of resting in my life. And I regard resting not as selfish but actually as one of the most altruistic acts I can do. Self-care directly translates to my ability to help care for others. When I’m miserable, so is my husband, so are my friends when they’re around me. Resting is what gives me ongoing strength and fuel to keep doing the things I am still able to do, even though what I can do is in some ways very different than what my pre-injury self could do.

Additionally, I will share the importance of finding/appreciating/investing in activities we are still able to do. Cultivating joy is so important – so trying to activate energy in the direction of the things we can still do vs. what we can no longer do was really important for me. I have had many different kinds of gratitude practices I’d done over the years too and have gotten so much benefit from strengthening my gratitude muscle – I have a daily and active practice of connecting with gratitude and it deeply enriches my life and my relationship with myself and the world around me. Perhaps something fun for you to do is something I’ve done in the past where I had a gratitude buddy to share with once a week or once every 2-weeks – so we checked in with each other and each shared our recent gratitudes, with maybe a little commentary about why we were grateful for the things we mentioned.

I’m a big proponent of starting small to work big, as I like to call it. Starting with small small super doable steps sets us up for success when it comes to bringing on board anything new in the way of change work/growth work. And I would encourage this approach with meditation too, if that is something you are interested in cultivating in your life. Please don’t feel like you have to sit for some long hellish amount of time in order to do it right or that you have to sit in some particular position. If you do want to start a meditation practice, I would suggest you start with 2-minutes. And be in a position that is comfortable for you, or as comfortable as you can get. It might be laying down. It might be sitting on your couch. Set a timer for 2-min and see if during that 2-min you can offer yourself kindness and practice to enjoy your in-breath and out-breath for just a breath or two. If silence is too much for 2-min, put on some ambient music you enjoy and have that accompany you for the 2-min, to help your mind settle. If the 2-min feels doable, continue sitting (or laying) for 2-min maybe 3-5 days a week and then feel things out for yourself – maybe you feel ready to increase to 4 or 5-min after a couple of weeks, and maybe not. The point is to start with a really doable amount of time in sitting meditation and not to set goals that are near impossible to stick with – consistency is more important than the length of time you sit for. There are some meditation apps I’ve heard great things about too that might be helpful – Insight Timer is one of them. Smiling Mind and Stop, Breathe & Think are others I’ve heard good things about. These are also all free, or have free options involved with them. 10% Happier might also be worth looking into (which is an app and podcast). Having guided meditations (and keeping them short) can be helpful.

I hope some of this was helpful. Please know I’m happy to chat more with you and I’m here if you simply want to connect with another sister living with chronic pain, which can be helpful in and of itself, as those without direct experience with chronic pain, while often well-intentioned, can only understand so much and I’ve found that friends/family can say things that really show how little they get it (and how could they?!).

With care,
Nicole

 

Pain Awareness Month

I live accompanied by chronic pain. Lots of people do. And for many of us, you would never know it by looking at us. This is me. This is what a person living with chronic pain can look like (see pic above :)

September is Pain Awareness Month in the U.S.

A number of years ago, I was a state pain advocate with the American Pain Foundation, which has since disbanded. As part of this advocacy work, I went to a small handful of pain conferences and had the honor of speaking at a couple of them, as well. A friend of mine and I led a pain support group for a short period of time and we also put together a holistic health fair. I’ve written articles and posts about my journey with chronic pain and illness. I’ve shared my story. This is all to say: I used to be active in this arena. But that was a long time ago.

Now, it’s rare for me to talk about the chronic pain I experience, because pain is no longer the main lens through which I view the world, as it used to be years ago. The only person that really knows what I go through is my husband. And not because I talk much about it, but because he’s the one that piles me into bed after a long day.

The 2018 campaign for Pain Awareness Month is #PainWarriorsUnite. While I truly mean no disrespect, I don’t personally resonate with this theme. In honor of Pain Awareness Month and also the approach of 100 Thousand Poets for Change, #100TPC, I wrote this earlier today:

I am not a warrior
when it comes to living with chronic pain and illness
When I was in the thick of it,
it wasn’t courage that kept me moving forward
It was fear
It was necessity
It was: Well, what the heck else is there to do?

I am not interested in going to battle
I have no wish to fight
And no, this doesn’t mean I’ve given up
There IS another way
A middle ground between going to war and giving up
And this is where I choose to reside

My sense from others I’ve come into contact with over the years, is that in spreading the message of being a warrior when it comes to living with pain and/or illness, whether mild or serious, creates the paradigm that those who feel hopeless and despairing, who don’t feel brave or courageous, who aren’t upholding the “good” fight, are somehow doing it wrong. I’m not so sure that sentiments involving fighting, going to battle or war, or being a champion or warrior are so helpful for our collective landscape and morale.

But I suppose that the idea that we can still be proactive and engaged without the necessity of fighting might be too much for many people to absorb and understand. After all, we’re a society built on duality and dualistic thinking. Well, we figure, if we’re not fighting against something, doesn’t that mean we’re being passive and ineffectual? This is a very common view when it comes to all sorts of matters, whether it’s in relation to: pain, illness, politics, social injustice, environmental advocacy, etc.

What I’m getting at is: words matter.

I don’t identify with being a pain warrior. I am not fighting or at battle with my nerve disease (CRPS). I am a person living with chronic pain. And one of the best things I do in regards to my condition – which greatly aides in reducing my pain response – is to continually cultivate a friendship with my illness and my body. For me, I associate fighting and being at war as the state I was in during the first 1-2 years after my diagnosis, when I was in the thick of the fray of pain. I fought against my body, my illness, my state of limitation, my new realty that I hated. I was at war against what was unfolding to be my new way of life.

I’m done fighting. I’m done battling. I’ve moved onto befriending – and my life and my relationship with my illness and pain, greatly benefit every day from that transformation.

Please understand, befriending doesn’t mean to give up. Befriending means to accept, embrace, and transform. When I was in fight mode, I was trapped and full of fear and anger. Befriending mode, however, is very liberating. And for me, this has made all the difference in how I respond to physical pain when it arises.

_______

Pain is often invisible to the naked eye – whether it’s physical, mental, emotional, or spiritual. Please don’t ever think you’ve got someone all figured out at first glance – or even second, third, or one millionth glance. This is me. This is what a person living with chronic pain can look like:

 

 

 

 

 

This is what I look like sometimes

I just took this pic of myself about 30-minutes ago. It’s hard for me to imagine how this pic might look to you, whether you know me personally or not – maybe nothing looks amiss at all. But, to me, this pic is a visual message of how my nerve disease, CRPS, shows up for me sometimes, like today. I can see my illness, exhaustion, and poor state of health today in my face – largely in my eyes. Our eyes are the window to the soul, as the saying goes.

I just watched a 2016 documentary called Gleason, which tells the story about former NFL player Steve Gleason’s diagnosis, progression, and life with ALS. It is an extraordinarily well-done film and I would highly recommend it. After watching it, I was inspired to take this pic of myself and post it here, as a way of highlighting that this is what I look like sometimes. Some days I am bed ridden. Some days I’d rather have the energy and ability to be outside enjoying the sunshine, like today, but I don’t. Some days my pain levels are higher than my mental capacity to physically rally myself – though it is rare for me, anymore, to experience a day when my pain levels are higher than my mental capacity to spiritually and emotionally rally myself.

Physically my body may be weak and sore today. But in learning the art of resting (yes, it is an art for sure), I am able to do so much awesome and amazing stuff in my life, during the days that I am afforded more energy and better health.

The documentary showcased for me the possible benefits and power of sharing our story, which is something I still struggle with, personally. As a writer and a mindfulness practitioner, I am still uncertain as to whether documenting and getting involved in advocacy work is the direction that speaks to me, in regards to being someone who lives with chronic pain and illness. What is clear to me, is the importance of showing and sharing about all the sides of ourselves. To be authentically who we are, in our own skin. So on that note, this pic is what I look like sometimes.

Things that are helpful for me to keep in mind:

  • No one totally is as they appear.
  • We’re all human – we all have our challenges and heartaches and strife.
  • We all judge books by their cover – and we’re all always wrong about our assessment.

After Diagnosis

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(This is a continuing series of posts on my journey with chronic pain & RSD)

Since RSD is not common and most people have not heard of it before here’s a definition:

From rsdhope.org: Complex Regional Pain Syndrome, or CRPS, formerly known as RSD or Reflex Sympathetic Dystrophy is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas.

What came after the diagnosis I will only touch on in brief.  I am more interested in going into detail about how I’ve been able to use my mindfulness practice to grow and heal in relationship to my disease and physical pain.  I see no real benefit to anyone in my going over at length all of the bad days and challenges I underwent those first few years after my injury.  I think it’s easy to think that sharing these moments provides some relief but I think more often than not it simply perpetuates suffering and keeps us stuck in the cycle of pessimism and complaining.

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Diagnosis

pain

In 2005, a few days after turning 26 years old, I had one of those seemingly cliched days that I had only heard about but not yet experienced (and honestly hoped not to since they sounded a little too dramatic for my taste).  I had a day that changed my life forever.

It was early July and I was out in the backyard with my then 5-year old stepson Jaden and his 3-year old friend Cadence.  I was Cadence’s nanny at the time but due to the fact that my car had been set on a fire in a random act of arson (among a string of others that summer) the day before I had no way to get to the family’s house for work and so he was dropped off at our house for the day.  It was a warm summer day and the boys were playing.  We were in the midst of continuing the renovation work on our house and a brand new front door was propped up against a table in the garage waiting as its first coat of fresh paint dried.  The side door to the garage was open and one of our two cats wandered in and then a large crashing noise soon proceeded, followed by the cat bolting like the wind.  Hoping the door’s windows weren’t broken I rushed into the garage with bare feet (which is never a good idea, at least in our garage).  As I was hoisting the door up and attempting to situate it more sturdily I accidentally dislodged a piece of MDF that was hanging at about eye level.  The heavy wooden board fell right onto my bare left foot.

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