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My name is Wylie, and I'm your PainPal
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What IS Chronic Pain ... Really???
Blog 8
It's remarkable just how much our Health of body and mind, plays a critical roll daily in our Quality of Life, like prayer and faith play a roll in our spiritual life. Usually we take this for granted, but actually it goes far deeper ... truth is we can't experience the suffering, agony or simple unhappiness that others are going through, because we can only look on. I grew up with my Godfather having a disability, so I was somewhat trained to be thoughtful and on the look-out for things he might need. But it's way different now that it's MY Body that is disabled.
Sometimes, I can't quite believe I've had to go through this experience: more than 15 years of Chronic Pain, surgeries, pain medications, coping, depression, and trying to learn positive ways to keep going ... maintain, hang in there, and sometimes, do a bit more and TRY to achieve some of my dreams and goals with dedication, discipline, patience and perseverance ... and most of all, something inside, driving me forward, not giving up, and not stopping or giving into the sporadic raindrops of despair or the hail of anger, but rather finding a strength within, an internal DETERMINATION.
These days I try to keep up my PEP: Prayer, Exercise and Practice
Activities are a choice, but it's a choice I have to make, to overcome the Chronic Pain. Prayer, Exercise and Practice are the three activities I've learned that help to keep my head above water and keep me moving in the direction I'm trying to go, because it's the Chronic Pain that acts so much like an anchor around my neck/body when I'm treading water. Each day is an opportunity to do better, to get better, to try to get better, to produce or to heal, or not ... sometimes a NEW day is just an opportunity to rest and try smell the roses. The opposite of course, is that I could just give in to the pain and hopeless feelings and say F*** It, I don't care. But, that's just too easy :(
It's odd, but sometimes God gives us the opportunity to prove to ourselves who we are AND who we Need To Be for Ourselves, and in the process, we find out who we'd like to become. Perhaps that's part of what's SO difficult about enduring, and dealing with a disability: when I became disabled, no one gave me the heads-up, that I was in fact now DIFFERENT, a uniquely different person from who I once had been, with completely different needs than I once had.
That lack of physical ability became the biggest barrier and constraint, affecting not just my physical situation, but my emotional well-being too. During some of the early years I lost my desire to get out, because with time, Chronic Pain acts like torture, and the mind breaks and says: "Fine, I'm done. I'm not going to do something I know will bring me pain ... I'm finished overcoming and persevering. It's just too much. I can't take it, day after day after day and over and over and over again."
That was when I really had to come face to face with what I'd lost. And I had to grieve about this loss ... and that took WAY longer than I thought it would. Actually as I look back, I was in denial for many years. I didn't accept my changed situation well at all ... that I was a DIFFERENT Person, for several years. I just didn't want to. I didn't want to be disabled, plus there were surgeries on the horizon that could (were supposed to) make me better.
But also, while there was a loss of being able to do some things I'd like to do, I could still take medication, and I could still walk ... to the lake or ocean, a little, go to Church, and even do some gardening. But I just kept running into the same wall: AFTERWARD ... after any activity longer than say 10 to 15 minutes, the spasms and/or the pain would be double, triple, even worse than it was normally. That's the daily choice I faced then, and today: either restrict my movement and rest, or endure acute pain and then worse suffering i.e. chronic pain.
Sadly, this isn't a subject that medicine knows very well, and I have first hand experience going on 17 years. I've had (and continue) to learn a lot about Chronic Pain and disability, including, how to speak of it and characterize it, and find solutions for my particular situation. I'm a fairly good problem solver, but WOW, this health situation is a dozy!!
As this post is about Chronic Pain, here's some definitions:
1. Pain that is persistent, often lasting more than six months; clinical symptoms may be the same as for acute pain, or there may be no symptoms evident.
2. Pain that continues or recurs over a prolonged period, caused by various diseases or abnormal conditions. Chronic pain may be less intense than acute pain. The person with chronic pain does not usually display increased pulse and rapid respiration because these autonomic reactions to pain cannot be sustained for long periods. Some factors that can complicate the treatment of persons with chronic pain are scarring, continuing psychological stress, and medication.
3. Pain that lasts beyond the term of an injury or painful stimulus (from a chronic or degenerative disease, and pain from an unidentified cause).
4. Pain that is long-lasting discomfort, with episodic exacerbation, that may be felt in the back, one or more joints, the pelvis, or other parts of the body.
5. Pain that returns periodically every few weeks or months for many years. Chronic pain is often described by sufferers as being debilitating, intolerable, disabling, or alienating and may occur without an easily identifiable cause. Studies have shown a high correlation between chronic pain and depression or dysphoria, but it is unclear whether the psychological aspects of chronic pain precede or develop as a result of a person's subjective suffering. (In my case, it's after!)
Patient care
The management of chronic pain is often difficult and may be frustrating for both sufferer and caregivers. Best results are usually obtained through multimodal therapy combining sympathetic guidance, encouraging patients to recover functional abilities, by combinations of drugs (e.g., nonsteroidal anti-inflammatories, narcotic analgesics, and/or antidepressants), physical therapy and regular exercise, occupational therapy, physiatry, psychological or social counseling, and alternative medical therapies (e.g., acupuncture, massage, or relaxation techniques). Surgery and other invasive strategies are occasionally employed, with variable effectiveness. (In my case, several knee surgeries, with two more reconstructions likely.)
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It's tough to find a catch all definition of the kind and type of pain I have, the frequency, magnitude, etc... when I walk or stand, the acute pain goes way up, and when I'm sitting or have my legs up on the couch, the acute pain drops but the trauma's been done, and the chronic pain from inflammation and irritation continues. In fact just to get back to a baseline, I need about three full days of rest with my legs up on the couch, and minimal activities. It may seem obvious, but it took me a few years before I came to understand that everyone's situation is different. Perhaps that's why medicine has taken so long to advance, because what works for my body is NOT guaranteed to work for others.
On the other hand, thinking about my situation emotionally, helped me realize just how much Chronic Pain made me feel #vulnerable and #depressed. There's no medication or surgery for that! I felt guilty for not fulfilling my 'best' self, but there were also times when I'd just feel #sad. Maybe it was loneliness, maybe it was thinking about what I was missing out on, or those times when the questions would come cascading in mind: Have I failed in life? Why can't I be happy? Am I #happy with myself?? How can I be happy with myself?? What's wrong with me?
I used to be a regular guy, athletic, an outdoors-man, a sportsman. One day you'd catch me playing Frisbee golf, the next I'd be hitting in a batting cage or playing putt putt golf, or actually playing 9 to 18 holes of golf, or in the winter playing hockey or going downhill skiing on the weekend. I was a mover and a shaker, a social butterfly, kickin' a** and taking names. Now however, since the disability, would you believe I barely walk 1000 steps a day? That's a measurement according to my iPhone (actually I average about 850 steps). If you look up what a normal, average amount of steps an adult walks a day, you'll see that 1000 steps is seriously, SERIOUSLY Low (I guess given the disability, it ought to be that LOW ... but it's still depressing to me to see the actual numbers confirm my situation ... there's just no wishing it away, or hoping I wake up ... THIS is MY REALITY).
For years, I didn't understand what I was REALLY going through; WHY my body was making me go through hoops, physically and mentally, just to stand and make something to eat, brush my teeth, or do household chores, much less go to the grocery store, etc... Going to an Art Museum, or on a hike, those activities are out! I haven't played golf or thought of skiing either. All physical activity gets a sort of mental sensor, or has to be mentally filtered.
For example, when I'm asked to go, or think about going to hang out and listen to live music, my thought isn't about who I'm going to see or who I might meet, like it used to be. No, I'm thinking, can I park close to the front door, will they have stairs, should I bring my wheelchair or the scooter? I can't even dance one dance, or walk a block, much less a few, without real pain consequences. If I did, the ramifications include (you guessed it) lots more pain & poss spasms, than if I had stayed home to rest with my legs up on the couch.
Why? The chronic pain I have revolves around weight bearing pain: when I put weight on my knee joints, the acute pain gets worse, and the inflammation in the joint and irritation gets much worse too (chronic pain). I use ice packs each day to try to lessen the inflammation that's going on. But the important thing I had to learn, was that the Chronic Pain doesn't go away when I wake up the next day ... it's actually like some of the torture I've seen on TV: a recurrence of the trauma, over and over and over and over and over and over and Over and Over and OVER and OVER AND OVER again, day after day after day after Day after Day after DAY after DAY, and there really are times I've felt like I was going to go crazy.
Thankfully, I have help and I no longer try to take this all on by myself.
Yet that's how I started ... in denial and trying to handle disability by myself. (Wow! The ego on this guy! Smh!)
Sure it's likely I was simply naive and ignorant, but I was even in denial about how much I was hurting. But after awhile, I finally came to some grip of the totality of my loss of mobility and the loss of my quality of life. The truth: I couldn't work and I was just surviving each day.
Thankfully, with professional guidance, the help of friends, and the concern and love of family, I got through the grief of the loss of my mobility, and I got past the denial ... with honesty. By being honest with myself, I started to learn how to cope and put those coping methods into practice. In particular, I think the best thing I did was that I learned to stop being so self-judgmental. Plus I look for and found friends who cared about my well-being and helped me to do so too.
Looking back, I notice Two turning points:
The first, when I realized and began to recognize my own self-worth, even WITH the disability. This was completely due to my faith and the realization that if God thought I was worth knowing and having a relationship with, and if God chose me to have faith, that meant something, that in fact, I must really have some worth. And ever since, I've been trying to grow and learn what it means to 'Love others as you Love yourself' (the second of Christ's Great Commandments).
The second turning point was after I'd recognized and started practicing and living with more self-esteem, I decided to start to Face My Fears. I can't imagine what that's like for others, but for me, it wasn't as easy as I hoped. I think the first practical example was that I found and started going to the dentist (yep, I was scared of needles in my mouth), but thankfully, I found a compassionate dentist who helped me through it, and towards that end, I also found a class teaching "Mindfulness Meditation". In taking that class, I learned about breathing techniques for when you notice that you're feeling anxious.
I also began to face my fear of asking others for help (perhaps that's a THIRD turning point!!). This was and still is a Big one for me. It's neither easy for me to ask for help or for things ... but I started recognizing that when I was asking for help, I was also giving others the opportunity to give and serve --- things I do pretty well, because I like to help others and see others happy! My family taught me how to be generous! Yet, being generous was something you did for others, not do for yourself.
Only recently did I recognize the fallacy of that idea. It's rather important that we all take good care of ourselves, in fact love ourselves, so that then we may do so for others. Just like a mother must take care of herself before she takes care of her child, there's an importance to self that I'd never understood. Remember the idea of: 'Know-Thyself'? I wonder how many of us really care to know ourselves? Why is it important? What good can come from it?
For me, to know and understand myself really has helped to guide me to learn How to Keep Going through the Chronic Pain. It's easy to give up --- take extra pain meds, drink, get high ... but to keep going ... to be productive, even if it's just a little each day ... to continue to go out, go to church, go to the Gym, go for groceries, even get to a park or just enjoy a car ride --- no matter how small or insignificant the activity (even typing on the keyboard) seems, it's the opposite of giving up.
That's another important lesson I've learned about Chronic Pain: Not to let it stop me, because the idea of conservation of momentum holds true --- it's easier to keep going than to stop and start again. I'm grateful I was forced to learn Time management early in college, because that's what I use to keep myself moving: I use the calendar to schedule appointments, events, visits, errands, Church service, whatever the activity (even phone calls or getting online) because it reminds me to Keep Going.
Exercise too, helps shield me from the Chronic Pain caused ink-black #depression; surging blood-flow and muscle charging seem to be opposite of the stale, #isolated, #uneasy, nothing and #malaise of #hopelessness brought up by depression's whispers:
you're worthless! you can't make it! you don't belong! you're alone! no one cares! why do you keep going! why don't you just stop?! Like the ever-flowing waters of Earth: emotions constantly surge (the good and the negative) and like gravity itself, #pain awakens and causes certain negative and hopeless #emotions and #feelings to arise frequently.
Yet, like every relationship (in this case, my relationship with Chronic Pain), it's important to be honest, #communicate and learn, and not let little things build up like steam until the whistle sounds to expel the pent up emotional angst. Expressing emotions is pivotal, in my case, to letting go the grief, the sadness, the uneasiness and anxiety arising so regularly due to Chronic Pain. Self expression through writing poetry, songwriting, singing, designing, exercise too, all help, but #Prayer (and going to Church) is by far the best way to let go and get through the hurts I feel so deep.
Without regularly notice, plus activity and #self-expression, those negative emotions from Chronic Pain would overwhelm me and get out of hand, building up to the point where they'd weigh so much more than my light-hearted, loving self. I have learned that there are some red flags forewarning me of this, which present themselves for me to heed and do something like take time to pray. But if I let them pass, soon I feel this crash-diving down into the mire and muck of gloom and #despair, and this scent of decayed life catching up in my nostrils and throat. I reach a fog-thick state of loneliness, where my #anxiety goes off the chart, as I notice this cutting off of breath feeling ... of hopelessness.
Yet, I fear God precisely because I've felt this everlasting-eternity-all-alone feeling. And even thought I trust God with all my Heart, depression can swamp my love with emotions of pain, hurt, and voices of despair. #Sadness makes me slip when I try to stand up with confidence, and then the Pain shatters that #confidence altogether. How can I keep going? How will I get through this feeling again? Will anyone help me? Who can I call? Isn't there someone who can help me? What do I do now? Where do I turn now?
The answer is always the same: seek & find.... FAITH. LOVE. HOPE.
Chronic Pain can sometimes twist my mind like a pretzel, tear it to shreds and eat it in front of me --- so to speak. Yet self-compassion and love are like the water that nourishes the seed of faith. Amazingly, Love is available to each of us. And isn't that a blessing too, that we can share LOVE with each other?!
Yes, at times, God's grace can feel like a mystery, but I continue to try to seek and find and search with all my heart, no matter the trials I'm asked to face ... even this Super Tough one called 'Chronic Pain'.
Thanks again for taking some of your time to read my Blog. I appreciate you. #PrayersUp
My name is Wylie, and I'm your PainPAL
