Coping with Someday in Constant Pain: Dorian (aka coffeesister) Interview

Two firsts with today’s post: Dorian is Dave’s wife, meaning the two interviews are our first back-to-back couple interview. And Dorian is also the first person I’ve interviewed who lives with a significant limitation on her Somedays: she lives in constant pain, meaning even getting out of bed is a Someday. Despite that limitpaination she doesn’t let it make her bitter and withdrawn. Check out what she has to say…

Dorian (aka coffeesister)Who: Dorian aka coffeesister of Drink Deeply
Dorian is coffee for the soul; brewing up help, health & happiness from a simple, stimulating & sustainable life while offering life lessons, potential perspectives & empathetic encouragement to all takers for that’s why we’re here: we’ve all been lent to each other.

Name one moment in your life when you threw a pity party for yourself and the reasons why you felt you weren’t able to achieve your goals. Were you feeling stuck? Had you felt you failed? What wasn’t working in your life?
I’ve had chronic pain, in one form or another, throughout my life but that didn’t prepare me for being bed-ridden by my late-20s. I’d gallantly pushed on despite migraines, chronic daily headaches, tendinitis, mild scoliosis & asthma for over a quarter of a century — even keeping a job through what was presumably mono, despite having to drop out of college. Then.. No amount of willpower nor sense of urgency nor the strongest determination could make up for the fact that I was debilitatingly weak, constantly tired, painfully sore & cognitively spent.

We (fortunately, I wasn’t alone; thank you, Dave) were building our first home, finally working in theatre & newly living near my family (another God-send) yet I felt like I was alternately missing out or ruining it. Although I’d always had bad bouts with my so-called health, none of the tricks I’d learned over the years were working. Employing everything I knew about sleep, diet & exercise simply gave me bouts of functionality. My world had turned around & I was left with a new reality in which I not only had few enough good days but fewer answers.

Being starving artist types who live paycheck to paycheck, insurance had just never been an affordable option so my doctor could do little more than guess once what tests we could afford offered no answers. With symptoms like tiredness, grogginess & confusion as well as nothing but the likes of “Chronic Fatigue Syndrome” to point to for an eventual diagnosis, I was treated by most people as if I had a psychological disorder instead of a physical one. That’s when the party really got going because I too began to wonder.

Even our lowest moments fulfill a need in us or express our desires. When you threw yourself that pity party, what did you hope to gain? What need did you fulfill?
My life hadn’t been particularly easy so, for a time, I took a much needed break. You know, the ol’ “if you can’t beat ’em, join ’em” routine. The more rest I got, the more bouts of functionality came my way & that Dave-person even managed to get me my own computer so things weren’t bad per se if still not forming a life anything like I’d ever envisioned or known. As I shared recently on Twitter; surprisingly enough, being horizontal does get tiresome.

Dave & I believe that it’s important to be content in your life, regardless of circumstances, but just as important to not be satisfied. Thankfully, I wasn’t. I do love to think & it may have become increasingly challenging to do so but I’d certainly had plenty of time to do so anyway. The computer was used for research as my doctor had pointed me in the likely directions — speaking of which, Fibromyalgia Awareness Day was just last week — & the conclusions eventually started adding up.

When life stops us dead (or at least forces us to play dead), there’s a reason. When there’s no discernible cause for the hiatus from life as we know it, there’s a damn good reason. Not only did I need to reassess my current situation, it was high time I found the throughline for my nearly 30 years. I recognized I was still very young, despite feeling very old, & had always been wise for my years so I’d equally not felt the need for in-depth retrospection & long since known myself quite well. Looking at my own life with a fresh perspective was a challenge & a gift.

Tell us what you did to break up the pity party. What actions did you decide to take? Did someone help you buoy your spirits? Push you along?
I’m still working toward more thriving than surviving but it’s crucial not to miss out on life along the way. No matter what you’re going through, your psyche’s still capable of laughter, your heart still responds to beauty & your soul still needs to be fed. I continued Stage Managing intermittently despite ending up in a practically comatose state after each show, teaching myself how to use this new body & mind in the process. That also allowed me to work with teens which was my first vocation. Staying connected to my passions kept me sane & combining them kept me going for the teen volunteers were learning what I did (but no longer could do on my own).

Feeling somewhat like myself again, it was time to fill in the blanks. Both the figurative ones, such as what I had been doing to my health all these years, & the literal ones, like a malfunctioning brain, had to be addressed. Everything we experience is a collision of perspective & circumstance so fundamental change, especially to the point of restoring health, relies on understanding how each came about. I asked the people who knew me best (w/mug raised to that Hunny o’mine & me mum) comparative questions about my symptoms, frame of mind & any other differences they’d noticed past to present. I kept a “brain book” — like a journal but far less interesting — to track my thoughts since my gray matter was no longer reliable. I used the scientific method to ascertain what caused which & which worsened when. It doesn’t matter what’s not working or how you may break, the human spirit can dominate but it will triumph if you do more than mend the cracks; rebuild (we have the technology).

Can you look back on that moment and tell us how you felt when you did decide to take action? What results came about from your decision to take charge and move on?
Empowered. I tell you what; did I mention empowered? All the best things in life are active. Just as you can’t steer an anchored ship, you can’t create change until you make changes. Sure, some of them will be wrong.. YAY you! Mistakes mean you took a risk, you tried. We can’t learn without mistakes. A societal majority has misrepresented success. Success is NOT not failing, has nothing to do with what you do, even less to do with what you own & everything to do with who you are. The key to discovering who I was, as it is with all of us, was to discover my mistakes. It wasn’t that I blamed myself but that I knew I’d missed something because, when I hadn’t taken action, my body had been forced to. However healthy you may be, heed your body’s messages. It knows what it needs.

I was so used to pain it didn’t occur to me as I was growing up that it wasn’t normal. We really do acclimate to whatever we don’t know isn’t typical. In turn, we don’t know what it is that’s atypical so we don’t talk about it. Other, equally damaging things in my life have also fit that pattern. I came to realize that I hadn’t just been in denial when it came to my health but was in denial about being in denial. Upon figuring out that constant pain wasn’t a common phenomenon, once I quit self-medicating with alcohol in my teen years, I was no longer covered by parental insurance. When I couldn’t conveniently avoid the pain & play at normalcy that way, I assumed instead that my pain was just worse than most people’s. Rather than face that there were indeed people without any, thus recognizing pain as a problem, I allowed myself to believe it was only severe pain that was considered a warning sign & downplayed my own.

I’d been downplaying quite the collection of symptoms over the years. It had become habit so as not to worry others & I’d lost track, no longer noticing the progression. We can give ourselves no better gift than to take stock periodically. If all’s well &/or we’re comparatively improved, we feel appropriately grateful whereas, if the comparison doesn’t hold up, we can take appropriate action. In order to function from day to day, it can be important not to keep a constant watch on the big picture lest we get overwhelmed. Be sure to install multi-paned glass in the picture window of your life so you can focus on each pain pane as needed then be sure to step back now & again for that telling big picture. At nearly 30, I finally stepped all the way back for the first time & discovered not just a slew of random symptoms but a myriad of related symptoms all pointing to one thing: autoimmune disfunction. It wasn’t a specific answer but it was the key to fighting back.

Everyone has a Someday problem hiding deep inside, even little ones. What variety of the Someday Syndrome do you currently harbor? What would you like to achieve but haven’t yet?
“I’ll do that (insert someday here) when I feel better.” The sad fact is that I very often must wait til I’m feeling better which is precisely what makes this Somedayness so insidious. Anything we need to legitimately consider in our daily lives can all too easily become more habit than prudent. When money’s especially tight, we become wary of spending it. My energy is like a constantly devalued currency in an unstable economy. Its value will plummet without warning &, the next thing I know, the simplest task had far too great a cost. It’s human nature to steer clear of actions that have negative consequences; the more difficult something is, the more reticent we become. When it’s not only difficult but likely means you won’t be able to do anything else for a time, that reticence becomes procrastination.

I’ve always been an expert procrastinator. My saving grace being that I use my procrastination skills to stay open to unexpected opportunities; ready, able & willing to set everything aside as priorities change from day to day. Ultimately, this is simply mindful living — letting the moments take me where I’m most needed. However, with so little energy currency to spend at any given time & the added taxation on any action of additional pain, staying ready can become standing (or lying) still. Limiting our expenditures can turn into a pattern of not spending at all. “Better safe than sorry” has its place & one of the mantras I live by is “when in doubt, don’t” but, when it’s fear masquerading as doubt, then it’s time to do, damn it, DO!

Examining your Someday Syndrome problem, what are you currently doing to resolve it and eliminate it from your life?
Ever trade one obsession in for another? Quit a bad habit by replacing it? Stop making yourself sicker day after day by being afraid to do anything? ur doin it wrong! Going from one extreme to another leaves out a world of possibilities. Fear loves to parade around inside our heads all dressed up as doubt. Good ol’ doubt; so wise, so sane, just there to help. Fear, when legitimate, doesn’t hesitate; it knows it’s justified & rears its scary head. Thank God. It’s the reason we don’t typically open the door the killer’s lurking behind in real life. When fear’s feeling over-protective not to mention a bit controlling, it hides. Because of this prowess, the only way to catch it in the act is that taking-stock-thing.

If I had to choose just one mantra, it’d be “coffee makes everything better,” which I’d then question because it would actually be “question everything.” We have to ask ourselves all the obvious “Why?”s then follow up with as many “Really?!”s as we can muster only to then ask my personal favorite, “So what!?” So what if it hurts to do that? It’s really not worth a little pain?? Why settle for less when you can have what you want??? I’ve been out of bed for a decade now & have learned a lot about keeping my body going while giving it the chance it needs to get healthier. Unfortunately, some good habits had devolved into bad ones thanx to my bossy friend Fear. Fortunately, I reached a point where I looked around & asked, “What the Hell?!?”

The big picture was once again of a life on hold. Pane after pane revealed how miserly I’d become with my health. From simple things like not making myself an always coveted hot beverage when Dave wasn’t available because the back pain & aggravated headache seemed too high a price to no longer venturing far from home for fear of getting stranded as will happen when the wrong muscle acts up at the wrong time. Big change always starts with little changes so things like being the one to make our nightly tea are what started to get me back on track. My Grandma’s death proved my final boarding call for the “you created a life, live it already” train. Not only did I reflect on the first time she kicked me in the butt, that I might make more of my life, but I ended up spending time with her daughter (aka Momma) who equipped my butt with the things I’d need to get on with that life. I seldom answer Twitter’s update query, “What are you doing?” but — since returning home with vitamins my body can absorb, meds that do what my body can’t & my beautiful wooden cane, Chester — I could.

Many people suffer the same problems you do. You’re not alone, and neither are they. What would you tell people in your situation right now to help them avoid what you’re going through?
Any time there’s not a tangible reason for a day to be lacklustre (frustration, health issue, disappointment), something needs to give. If you can’t pinpoint a problem but can’t declare a good day, your soul’s trying to tell you something. Decoding soul-speak can be tricky; common messengers are dreams, new frustrations (especially things that weren’t previously frustrating), cravings (often occurring with health issues) & recurring thoughts. Small changes can provide a new take on things as each day’s choices bring a different perspective. If nothing floats to the surface &/or you’re not typically so self-aware, the key to unlocking a current discontent or needed change is to journal. Nothing orderly or defined, mind you, & you needn’t continue indefinitely. Just shake a few things loose with some free-writing first thing in the morning or last thing at night. If you find yourself staring at a blank page, e-mail random thoughts (try using a time limit) to someone you trust or even yourself. Act on new ideas, try new things, change things up every chance you get & you’ll find what’s lacking.. or accidentally fulfill it.

If you could ask for one thing, right now, to help you overcome your Someday Syndrome, what type of help would you ask for?
Ask me what I’m doing now & again. If I can’t answer, I’d better have a Hell of a reason. Simply put, everything I do has a physical price so I’m constantly weighing the cost against the return. Feedback provides such high return value as to make the cost consistently worthwhile. In turn, I have to be willing to proudly proclaim my accomplishments. Most people aren’t going to understand what a big deal walking to the store is, much less consider making coffee something to be proud of (unless I were 4 rather than 40), nor should they but I will. We don’t need reassurance to realize we’re doing something of value. What comes in handy though is prompting; we get a chance to remember what & why we’re doing whatever it is that’s uniquely ours with the irreplaceable bonus of knowing someone noticed. As much as I love to blog & — yes — tweet, the motivation does wane without feedback. Everything I do is done with the hope it’ll touch another soul so each & every response touches mine.

I had set the goal of posting weeklyish to each of my blogs just before my current derailment so will be working my way back to that. Your feedback on any or all of them would be an immeasurable help & I encourage you to please share anything. Comment on the writing, format, theme, you name it, or just comment. ^_^ From the freshly brewed warmth & wisdom poured into every post at my primary blog, Drink Deeply, to the quotationaries — quotations w/commentary — Dorian’s Demitasse is filled with; I’m sharing what I’ve learned, my experiences & those I love with the intention of helping. Then there’s Drink Deeply [of me], where I share just that: moi.

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17 thoughts on “Coping with Someday in Constant Pain: Dorian (aka coffeesister) Interview

  1. Joely Black says:

    Thank you for such a beautifully written interview. It’s wonderful to see such courage in the face of odds like those.

    J xx

    Joely Black´s last blog post..The ultimate question

  2. Maree says:

    My situation is somewhat similar, I have constant severe neural pain caused by a damaged nerve in my face. I have permits for long term use of drugs of dependency. I use to take maximum dosages of several categories of pain killers sitting one on top of each other and was virtually housebound.

    Then at the end of 2007 I attended an ADAPT Pain Management program. These courses started in UK and are now run in multiple countries. It is a program based on teaching patients to break the link between their pain and distress and disability. It combines a structured living component with, cognitive behavioral therapy and education on nature of long term pain. I now take no pain killers and have my life back, although my pain is still tiring there is almost nothing I still avoid because of it. All of the participants in my program had similar fantastic results.

    The pain management team at Sydney’s Royal North Shore program who run an ADAPT program, have a fantastic book on living with long term pain. We used this book as a reference text in my pain management course. The title is Manage Your Pain – Practical and Positive Ways to Adapt to Chronic Pain. http://shop.abc.net.au/browse/product.asp?productid=163925

    This isn’t an advertisement, I don’t benefit in any way from the sale of this book but recommend it heavily for anyone who is interested in practical ways to use structure living concepts to overcome pain related disability.

  3. Inspiring but heart wrenching. People who rise to meet such challenges serve as inspiring testimony to inner strength of the human spirit. Such stories certainly provide a good reality check when tempted to complain or indulge in self-pity. Still, my heart aches for her situation. Dorian, thanks for your courage and your example.

    Jonathan – Advanced Life Skills´s last blog post..Friday with Friends – May 15

  4. I hardly know what to say for it’s hard to picture myself as particularly brave; after all, don’t we all cope w/one thing or another? Don’t get me wrong tho’, there are definitely times when I think to myself, “If they only knew.” The fine line is between finding my own limits & not letting myself use them as an excuse. I cannot thank the 3 of you enough for responding!!!

    @Joely – Thank YOU for the encouragement & again for retweeting this post! As you’re an accomplished writer, the compliment on my writing means SO much. I do believe any gift of expression I’ve been granted is directly related to the experience I have to share.

    @Maree – First & foremost, HUGE props to you for your own courage & accomplishments in overcoming! ADAPT is certainly aptly named & seems spot-on; I too am striving to stay med-free. Thanx ever so for sharing as such programs are crucial. Yoga has played much the same role for me & I look forward to one day being able to afford classes again.

    @Jonathan – YAY for StumbleUpon! You’ve summed it up perfectly as we all have more inner fortitude than typically realized & are hopefully ever forced to recognize. My ongoing hope is to encourage others to push forward w/all they have just as I’ve been kept going by encouraged determination. Imagine going full-force ahead w/fewer impediments!?

    (|_|*cheers*|_|)
    “Let us rise up and be thankful, for if we didn’t learn a lot today, at least we learned a little, and if we didn’t learn a little, at least we didn’t get sick, and if we got sick, at least we didn’t die; so, let us all be thankful.” ~ Buddha

    Dorian aka coffeesister |_|)´s last blog post..YOU so silly!

  5. RhodesTer says:

    Do I know you? Oh, wait.. yeah.. you’re my hero!

    XOXOXO awesomeness.

  6. Sandra L. says:

    Thank you for posting this. I needed it today, very badly.

  7. Benia says:

    You reflect so many positive things. I have just been working on aspiring to be positive despite my own Fibromyalgia challenges. It definitely helps to have a few good days behind me, of course, but I challenge myself constantly to balance needs and wants at each moment and make enjoying life my top priority. There are times when the pity party becomes inevitable, but it’s a stepping stone to becoming stronger.

    Keep on living life and sharing with others. You’re doing a great thing.

  8. Silly Dave, you‘re MY hero!? ::heehee:: I love you too! ❤ xox

    @Sandra – Thank YOU for reading it! What a gift to yourself that, as you’re struggling, you’re seeking the support you need. What a gift to me that I could be any part of that.. Thank you also for sharing that need. ~_~ If ever I can offer another encouraging word, please don’t hesitate to e-mail me: Dorian [at] coffeesister [dot] com

    PS: Anyone kind enough to take me up on the request for feedback, feel free to e-mail me as well.

    (|_|*cheers*|_|)
    “Perseverance is not a long race; it is many short races one after another.” ~ Walter Elliott, The Spiritual Life

    Dorian aka coffeesister |_|)´s last blog post..YOU so silly!

  9. Benia, I’m just glad you can relate to “bouts of functionality.” There’s hope for us yet, eh? Thanx for the Twitter follow; DO tweet anytime you’re up for a bit of empathy. Balance & prioritizing a focus on the positive are definitely key but not easy. How right you are that pity parties aren’t actually a bad thing. I’ve noticed a number of Alex’s interviewees have hesitated to own up to any but allowing ourselves to wallow when nothing else is possible enables us to work thru those feelings & other ones become possible again.

    (|_|*cheers*|_|)
    “The soul would have no rainbow had the eyes no tears.” ~ John Vance Cheney

    Dorian aka coffeesister |_|)´s last blog post..YOU so silly!

  10. Jeanne says:

    Wow! I’d like to thank Dorian for directing me to this excellent post… fantastic! The observations made here can apply to so many chronic illnesses and can help anyone (healthy or not) have a more positive perspective on life. Kudos for a great interview!! 🙂

    Jeanne

    Jeanne´s last blog post..Housekeeping For Move

  11. Alex Fayle says:

    @Jeanne
    Glad you enjoyed the interview and yes, Dorian’s advice can be applied across the full spectrum of health – even people who don’t live in pain can learn to take things a little easier at times. 😉

  12. Jeanne says:

    Alex,

    Yes, I thought this was an outstanding post and I have shared the link with others.

    Jeanne 🙂

    Jeanne´s last blog post..Housekeeping For Move

  13. It was w/precisely that hope – to offer applicable advice to ANYone reading – that I answered each question! Thanx for the reassurance my own circumstances haven’t overshadowed the hopefully practical encouragement herein, Jeanne & Alex. ^_^

    @Jeanne – I am particularly pleased you’re sharing it w/others facing similar health issues tho’. It’s just too damn easy to lose track of how many of us there are & the support that comes from empathy is especially encouraging. Thank YOU for yours.

    (|_|*cheers*|_|)
    “Life is a shipwreck but we must not forget to sing in the lifeboats.” ~ Voltaire

    Dorian aka coffeesister |_|)´s last blog post..YOU so silly!

  14. Jeanne says:

    @alexfayle Thanks again for posting this great article. It has been getting retweets amongst chronically ill patients. 🙂

    @coffeesister This article really can be applied to so many situations. As you pointed out, fellow patients can often empathize better than anyone else.

    Jeanne
    @jeanneendo

    Jeanne´s last blog post..Five Days To Launch!

  15. […] realize “someday” is right now—like Dorian, who recently shared her experiences dealing with chronic pain and offered this advice: “Act on new ideas, try new things, change things up every chance you get […]

  16. […] realize “someday” is right now—like Dorian, who recently shared her experiences dealing with chronic pain and offered this advice: “Act on new ideas, try new things, change things up every chance you get […]

  17. Jen says:

    “I was so used to pain it didn’t occur to me as I was growing up that it wasn’t normal. We really do acclimate to whatever we don’t know isn’t typical. In turn, we don’t know what it is that’s atypical so we don’t talk about it.”

    I needed to read exactly that today. I have been doing the same thing for most of my 36 years and finally told my doctor about the pain (which had gotten worse) yesterday at my partner’s urging. I took my first prescribed pain medication last night and as it was wearing off today, the true extent of my pain hit me. I don’t know how I have been getting along up till now. I was asking myself if I could have become used to the pain, this level of pain, and it’s reassuring to know that I could have and probably did. Only when it disappeared for a while and then appeared anew could I truly feel it for what it was. Now I can focus on finding out what is causing it and managing the pain. Thank you!

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