Lessons: Learning From Life With Chronic Pain

There are many lessons that can be learned, while trying to adjust and learn to live with chronic pain / illness. It can be difficult to remember to focus on the lessons and opportunities that can be found in the difficult and dark times of illness, but it's healthy to recognize that we're still growing... perhaps just differently than we previously anticipated - there are lessons I've learned over the past 3.5 years (since my accident) that I may not have had the chance to learn, otherwise (however, I wish they didn't have to be such painful lessons... oh well, such is life). Here are some of the lessons I've learned / am learning:

Never take life for granted! We aren't promised the next moment, so we must appreciate life here and now, in the present. Hug, love, laugh, share... make sure you show your love and appreciation to those that are there for you. Do it today... do it now... because everything you have today could be gone in a moment.

Enjoy the moment. This is related to the previous one. Living in the present moment is a wonderful... though sometimes a difficult and painful... lesson to learn. I like this picture and quote - I think it sums it up pretty well.

Learn how to say "no." I don't think of myself as having been a "yes" person, but I don't like having to tell people "no." Living with chronic illness has made saying "no" more of a necessity. It's not healthy for me to always say "yes" to people... not to mention, my future is so unsure / uncertain (I can't know how I'm going to be affected by my illness at any specific time) - I answer with "yes, but..." (a side note that I may have to cancel at the last minute) or "no," because I simply don't know whether I'll physically be able to do something. I have to thoughtfully consider my own limitations. Thus, I'm learning more about myself.

Trust your gut. I've always been pretty good at listening to my intuitions and trusting my gut instincts, but I randomly struggle with it. When it's related to health, things can get a bit tricky. We place our trust in doctors, and it's intimidating to even consider contradicting or questioning our doctors. But, if you disagree and / or are uneasy with the treatment plan your doctor recommends, you should discuss it with him / her. If you know that something just isn't quite right with your body, you should keep asking questions and seeking treatment (even if you have to go to multiple doctors to try to find some answers).

I feel like living with chronic pain has taught me to listen to my body better. I'm much more aware of when something I feel is different or "off." I don't think I really paid much attention to the subtleties of my body before having chronic pain / illness.

One difficulty with this, though, is that the pain can cloud your thinking. It can be difficult to judge whether something is, for example, bad enough to justify a trip to the emergency room. I know that I have a huge struggle with making any kind of decisions, when my pain gets very bad... so, I'm still working on this.

Acknowledge and accept limitations. This has been a huge struggle for me. I've never liked limitations, and especially not the strict ones that my chronic illness creates for / imposes on me. One of the most important things here, I believe, is to remember that acknowledging and accepting limitations does NOT mean you're "giving up" or "giving in" to the disease. It's just being more aware of what you can and cannot do, and living life within those borders.

I'm not able to spend much time in the sun. I have to break up tasks into baby steps. I have to take frequent breaks. I have to take so much into consideration, when deciding whether or not to do something (where it's at, what the lighting / sound / smells / etc will be like there, who will be there, how long I'll be out, how much walking / standing / sitting is required, etc...). It's definitely an ongoing process to accept the limitations and learn to live with / around them, but I'm learning.

Learn to be flexible. I've always been a planner, and I can't do that anymore because I can't know how I'm going to feel in the future (even in the next 5 minutes). I'm learning how to plan differently, by making lists of things that I need (or want to do) - I write if there's a deadline or specific priority to it, otherwise I don't put a date on it and just tackle things as I feel able to.

My husband and I are having to learn to "wing it," by just taking things one thing at a time. That sometimes means we cancel plans at the last minute, which both of us absolutely hate - we don't like it affecting / impacting other people. We've actually brought some humor to the necessity to "wing it" (much thanks to my husband for always being able to make me smile / laugh) - it makes things a bit more bearable, but it's still frustrating (especially when it impacts others).

Be patient. One of the lessons that can be learned from living with chronic illness is patience. What a huge challenge this is for me! Being patient is reinforced by many of the challenges and limitations we face - we live each moment not knowing what the next moment will hold... when the pain is going to worsen or return. It's a learning process to be able to live in the moment and truly enjoy what is happening in the present.

Learn how to ask for and accept help / assistance from others. I'm so used to being the one to help others... it has been very difficult for me to learn how to ask for help from others... and then to be able to accept that I need help, as well as the help that others offer me. It's an ongoing process, but I've gotten better at it. I don't like feeling that I can't do so many things, especially simple things that most people never consider to be a challenge at all. But, I've found that it's usually more painful to refuse to ask for help, than it is for me to accept the help of others... if nothing else, it's easier on my physical health... it's still a struggle emotionally.

There are many other lessons I've learned and / or am learning, but these are some pretty important ones.


Lessons Series:
Lessons: Learning the Hard Way (Part 1)
Lessons: Learning the Hard Way (Part 2)
Lessons: From Suffering to Empowered
Lessons: Learning From Life With Chronic Pain
Lessons: Learning to Accept Imperfection (Part 1)
Lessons: Learning to Accept Imperfection (Part 2)


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Lessons: From Suffering to Empowered

When you're diagnosed with a disease that is incurable, it can throw your life into a tailspin. All of a sudden, your life comes to a screeching halt. You're forced to focus on making it through each moment... hour... day... and simply taking life one tiny step at a time. Everything you've hoped and dreamed for your life comes crashing down around you, and uncertainty takes over. All of the things that you used to enjoy doing, you're suddenly unable to do. And, if you have an invisible illness that comes with stigma attached to it, you can't depend on a whole lot of compassion and support... even from some people that you thought were closest to you. People tend to fear what they don't know or understand, so many people simply detach themselves from the situation... leaving the person living with chronic illness feeling increasingly isolated.

I've actually read that some people living with chronic diseases actually wished their diagnosis had been cancer, instead of whatever they have. It may sound crazy, but I can sorta see where they're coming from. Of course, they don't really wish they had cancer and are by no means belittling cancer's severity... but, it would be amazing to have the same respect, compassion, understanding, and support that's given to cancer patients.

There may be less understanding and compassion for many of those living with chronic illness, but we can't just sit around and feel sorry for ourselves. We must learn to move from a suffering patient to an empowered individual. Some of the lessons that can help move us toward empowerment, include the following.

Be your own advocate. I've had to learn to be an advocate for myself. I don't blindly take advice from anyone, including doctors. There is no cure for Migraine, period. I'm simply doing my best to work with my doctors to find some way of improving my life, despite having this illness.

Let it go. This one is difficult for me, and I'm guessing that it will continue to be difficult... but I'm really working on it. I think there are several things I need to let go of, including:

• My fears and anxieties - I must hand these over to God. Allowing myself to get wrapped up the many fears and anxieties that inevitably come from living life in chronic pain helps no one. I don't want to be frozen in fear, and let life pass me by. 
• What others say and/or do - I can't let other people's thoughtlessness upset me. Whether or not others choose to try to understand what I'm going through, to be compassionate about what I'm going through, etc... is NOT up to me. It can be hurtful, but it's out of my control. All I can do, is love myself enough to do what I need to do to be as healthy and live as good a life as possible.
• The effects of my illness - I need to let go of the times that I have to turn down an invitation or miss an event. I can't control when the pain will be that bad (or how others will respond to canceled plans)... I need to learn to be more forgiving of myself when it happens (and, again, not be affected by how others respond / react).

Celebrate tiny milestones. Since so much of life becomes taking baby steps, it's important to remember to celebrate even the smallest of milestones. While others may not think that taking a shower, for example, is an achievement, it may very well be a big one. Give yourself credit for the steps you're making toward living the best life you can with chronic illness.

Find joy in new and/or different ways or things. You may not be able to do many of the things you once enjoyed and were good at, but that doesn't mean you can't do anything. Explore new areas and interests, and you might just find a hidden talent that you may otherwise have never have discovered. It's extremely difficult to lose the things we thought we valued so much, but living a life guided by trust in God can open us up to a whole new world and to opportunities that we never even considered or thought possible.

Decide you're going to go forward. Illness and disease can be an obstacle that you sit back and give in to OR it can be a challenge that you learn to live with and succeed despite it. Let this propel you forward into the future before you. Allow yourself to see where you've been, and where you are now... but you can't focus solely on what you've lost. Until there is a cure, you have to come to terms with the fact that there is a new normal - this is the new life you have to live... choose to live it!

Lessons Series:

Lessons: Learning the Hard Way (Part 1)

Lessons: Learning the Hard Way (Part 2)

Lessons: From Suffering to Empowered

Lessons: Learning From Life With Chronic Pain

Lessons: Learning to Accept Imperfection (Part 1)

Lessons: Learning to Accept Imperfection (Part 2)

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Lessons: Learning the Hard Way (Part 2)

© Jamie Valendy

Accident Disability
Fast-forward to October 10, 2008. I was in a car accident that ended up changing my life forever. In one moment, so much was taken away from me... and, I didn't even know it until much, much later. Chronic, debilitating migraines began, as well as bad shoulder and neck pain... my life was flipped upside-down.

By this time, I had mostly come to terms with not being able to participate in sports. But, my self-image was based very much on my intellectual ability. I was an organized, driven, hard-working, and smart person. I loved challenging my mind!

Suddenly, I couldn't remember things that were said or happened a few seconds beforehand. The accident took the parts of myself that I identified with and shattered them into tiny, unidentifiable pieces. I couldn't think logically, I couldn't remember anything (I had LOTS of pieces of paper with notes on it, especially when I was dealing so much with my attorney and the insurance companies because I didn't want to forget anything that was said...), I couldn't solve simple problems, etc. To say that I was frustrated would be a huge understatement! I felt completely helpless... and I spiraled into depression.

I lost a lot of my independence, which was very difficult for me. I've always been a planner, and now I can't really plan because I never know how I'm going to feel. I don't really drive anymore because of visual disturbances and sensitivities, and I'm still jumpy in cars (though it's much, much better than it was the months following the accident). I sometimes have trouble being able to take care of myself (showering, cooking, eating, sleeping, etc.), and I haven't been able to work. ...And, it was all due to someone else's actions, which happened in just a moment.


Lessons Series:
Lessons: Learning the Hard Way (Part 1)
Lessons: Learning the Hard Way (Part 2)
Lessons: From Suffering to Empowered
Lessons: Learning From Life With Chronic Pain
Lessons: Learning to Accept Imperfection (Part 1)
Lessons: Learning to Accept Imperfection (Part 2)


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Lessons: Learning the Hard Way (Part 1)

I didn't get this finished the other day (when the prompt was given for the HAWMC), but here we go... I'm sure that there are many things I've learned the hard way over the course of my life. The one that comes to mind now is that things can be taken away from you in a single moment.

Sport Injuries

© 2002 Jamie Valendy
(I'm in the front)

I used to play softball and run. I loved to do both so much. They helped me work through some difficult times, and they provided an outlet for all of my emotions (both positive and negative). I made some great friends, and I learned a lot about myself.

© 2002 Jamie Valendy

On April 6, 2001, excruciating pain started in my left hip, while I was warming up for a track event. I found out that it was an overuse injury (tendinitis bursitis) - I think I worked out about 4-6 hours a day (between high school track/cross-country, pitching lessons, and both high school and recreational softball), so it really shouldn't have been a surprise. It was my choice to work-out so much - I loved the thrill of the competition, of challenging myself to get better, and reaching goals. So, as difficult as it was, I paused my participation in competitive sports and went to physical therapy. I did just as the therapist told me to, including taking time off from impact workouts (i.e., running). Once he began to let me start jogging / running, he slowly increased how much I could do. My coach told me not to run faster than a 10 minute mile... then a 9 minute mile... and faster, as my hip seemed to heal. I always finished almost exactly at whatever speed / time he would let me run, even though I was itching to run faster and push harder. Eventually, I was able to start joining in some of the team workouts, but my coach wanted me to completely heal before running competitively again. I was able to run in the last few cross-country meets of the (fall) season, and I actually ran a personal record.

© 2002 Jamie Valendy
(I'm on the left, #3546)

In August 2002, when cross-country practices approached, I was excited. But, before the season began, I woke up one day and couldn't move because my back was in so much pain (I happened to be staying at a friend's house, where we all just laid out on the floor). I had to go back to physical therapy for that, and I ended up missing out on running and playing softball during my senior year of high school. It broke my heart! I still miss being able to compete in sports so much.

My ability to compete in the sports I loved so much was a HUGE loss for me, and I've had trouble dealing with it. But, perhaps it prepared me for the larger loss that was to come years later...

Okay, so apparently I have quite A LOT of things to say, so I'm going to let the words come out, and then split them up into a series called, Lessons. I'm not sure how many blog posts it will end up being, but I'm interested to see where things take me.


Lessons Series:
Lessons: Learning the Hard Way (Part 1)
Lessons: Learning the Hard Way (Part 2)
Lessons: From Suffering to Empowered
Lessons: Learning From Life With Chronic Pain
Lessons: Learning to Accept Imperfection (Part 1)
Lessons: Learning to Accept Imperfection (Part 2)


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

The Things We Forget

I know I haven't posted much in the last few days, but I'm still here. I started writing a post, and it's ending up being a series of five or six posts... oh goodness. It's exciting for me because I've been in a writing zone, but I'm just not quite ready to push "publish" yet... so, please stay tuned.

Today's challenge is inspired by the blog “The Things We Forget.” http://thingsweforget.blogspot.com/. So, I went to superstickies and made some short memo reminders that I enjoy (and need to hear / remember).

 

 

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

National Take Back Initiative

There's a National Take Back Initiative taking place April 28th (10am to 2pm) - see below for details. Local collection sites and law enforcement agencies will be available to safely dispose of accumulated unwanted, unused prescription drugs.

Find a collection site near you.

The Drug Enforcement Administration (DEA) has scheduled another National Prescription Drug Take Back Day on Saturday, April 28, 2012, from 10:00 am - 2:00 pm. This is a great opportunity for those who missed the previous events, or who have subsequently accumulated unwanted, unused prescription druges, to safely dispose of those medications.

Americans that participated in the DEA's third National Prescription Drug Take-Back Day on October 29, 2011, turned in more than 377,086 pound (188.5 tons) of unwanted or expired medications for safe and proper disposal at the 5,327 take-back sites that were available in all 50 states and U.S. territories. When the results of the three prior Take Back Days are combined, the DEA< and its state, local, and tribal law-enforcement and community partners have removed 995,185 pounds (498.5 tons) of medication from circulation in the past 13 months.

"The amount of prescriptions drugs turned in by the American public during the past three Take-Back Day events speaks volumes about hte need to develop a convenient way to rid homes of unwanted or expired prescription drugs," said DEA Administrator Michele M. Leonhart. "DEA remains hard at work to establish just such a drug disposal process, and will continue to offer take-back opportunities until the proper regulations are in place."

"With the continued support and hard work of our more than 3,945 state, local, and tribal law enforcement and community partners, these three events have dramatically reduced the risk of prescription drug diversion and abuse, and increased awareness of this critical public health issue," said Leonhart.

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).