Given the current opioid hysteria, now, even more than ever, we need to be well versed and informed when we are asked about or discuss chronic pain. Enter new fibroVOICE: Kimberly Hayes. Her article serves as a great introduction to or review of non-medicinal coping techniques. We do sometimes forget the basics, especially when we are afraid--and there is no doubt the current atmosphere is treacherous for those of us who require pain medication. Explaining chronic pain in a way that others understand can be frustrating. Also, we sometimes "know" coping mechanisms we are using but are not quite sure how to articulate them to others. Whether you are just beginning your chronic pain journey and are looking for tips or if you have been at it a long time and just need a clear, concise, and non-emotional way to discuss it, Kimberly's article will serve you well. ~Meshea Crysup, fibroLIFE
Managing Chronic Pain: Tips Beyond Painkillers
by Kimberly Hayes
What is Chronic Pain?
Sore muscles and aches are nothing out of the ordinary, but when that pain lasts longer than six months and it affects your ability to live a normal life, it is re-categorized as chronic pain. Chronic pain affects some 100 million Americans and it is the most common cause of long-term disability. Left untreated and unmanaged, chronic pain can make it almost impossible for a person to continue living a fulfilling life. Beyond the physical symptoms, those with chronic pain also often develop mental and emotional struggles like isolation and depression.
There are various illnesses and injuries associated with chronic pain. These causes include:
● Post surgery pain
● Residual pain from past trauma
● Nerve damage
● Chronic fatigue syndrome
● Interstitial cystitis
● Inflammatory bowel disease
● Temporomandibular joint dysfunction (TMJ)
Chronic Pain and Prescription Drugs
Managing chronic pain often involves taking medication. While most of these medications are safe to use under the supervision of a doctor, there is a risk for developing a dependence and addiction, especially with opiates such as OxyContin (generic name oxycodone), which is 50 percent more powerful than morphine. A pain pill addiction develops when a person takes the medication in a way that is not prescribed. Other signs of a pain pill addiction include drinking or doing illicit drugs while also taking the pills. Those addicted to painkillers become physically dependent on them.
Signs someone may be addicted include:
● Use of medication when no pain is apparent
● Loss of control over use of painkillers
● Increased tolerance
● Withdrawal symptoms when not in use
● Social issues and withdrawal
● Doctor shopping
● Obtaining medication through illegal sources
● Extreme behavioral changes
● Nodding off
● Secrecy and manipulation
● Financial, school, or work problems
● Mood swings
Managing Chronic Pain
When it comes to managing chronic pain, you can’t expect to just pop a pill to make everything better. Much of chronic pain management requires lifestyle changes and support from your friends, family, and medical network. There are also several alternative treatments for chronic pain including New Age medical practices like acupuncture and herbal supplements. Finding the best way to treat your chronic pain is very personal -- what works for others may not work for you. However, there are a few key things doctors all agree on when it comes to managing chronic pain.
Stress is a major trigger when it comes to chronic pain flare ups. Learning how to manage your stress levels is a great way to prevent pain and anticipate its return. Some of the best ways to prevent stress is daily maintenance including eating healthy meals, regular physical activity and plenty of sleep. However, it also helps to have activities to turn to when stress becomes uncontrollable. Yoga, meditation, and exercise are all great ways to promote a positive mindset and separate oneself from stress.
A positive mindset can do wonders. Giving yourself regular affirmations can boost self-esteem and help with the difficulties that often accompany chronic pain such as depression and anxiety. Instead of creating a habit of negative thinking and self-doubt, remind yourself that you have power in this situation and you can overcome the limitations set by your chronic pain condition.
Chronic Pain Support
When it comes to chronic pain, those who have never experienced it can never truly understand. Finding a support group with people who are in similar situations as you is one way to reduce isolation while surrounding yourself with those who truly understand. You can find a support group through your local community center, house of worship, or even using online resources.
Chronic pain makes it difficult to live a fulfilling, normal life. Often those with chronic pain are prescribed medication to help manage, but lifestyle changes and support can holistically treat the issue. Learning stress management, using affirmations, and finding a support system that understands the difficulties that come with chronic pain can help beyond simply taking a pill to manage chronic pain.
Welcome New fibrovoice:
LIVING a fibroLIFE© is happy to have Jackie Waters returning as our guest blogger this week. Jackie’s post is on coping with chronic pain, in general. While not specific to Fibromyalgia, hers is a voice I believe should be heard and I am honored to share her work with all of you! Be sure to check out her website as well! www.Hyper-Tidy.com
~Meshea Crysup, Founder fibroLIFE©
& LIVING a fibroLIFE Blog©
Chronic pain is an ailment that affects nearly 100 million people worldwide. Defined as pain that that lasts longer than 6 months, many people battling this condition find themselves depressed because of their quality of life. While living with chronic pain will need some adjustments on your end, you can still manage to live a happy and active lifestyle. Here are some changes to consider to help manage your chronic pain!
Eat a healthy diet
The saying “you are what you eat” rings true for those battling with chronic pain. In most cases, chronic pain is a result of chronic inflammation, and there are certain foods that trigger flare-ups. While acute inflammation is the body’s natural defense system that is needed to assist with healing process, chronic inflammation occurs when the initial injury fails to heal properly, resulting in long term bouts of pain. To minimize your chronic pain, try to avoid processed foods (think most boxed foods in the middle of the grocery store) and do the majority of your grocery shopping on the perimeter of the store. This is where the whole foods like fruits, roots and vegetables reside. Processed foods are packed with additives and preservatives that are guaranteed to cause you more pain and flare-ups. You will also need to lessen (or eliminate altogether) your sugar intake, including artificial sweeteners. When you consume too much sugar (baked goods, soda, candy) your body can’t process the excess glucose fast enough, which increases levels of pro-inflammatory messengers. Your diet needs to be rich in leafy green vegetables such as spinach, kale and collards. You may eat fatty fish such as salmon, tuna and mackerel, and fruits such as strawberries, blueberries and cherries.
Develop an exercise routine
When you are in pain, it may seem as if moving your body will make it worse. Actually, it is just the opposite and one of the most recommended ways to minimize chronic pain is to exercise frequently! When you exercise, your brain releases chemicals called endorphins that improve your mood and block pain signals. As your body grows accustomed to being in motion, your tolerance for pain will actually increase!
Another pain-reducing effect of exercise is that it strengthens your muscles, which helps prevent re-injury and more pain. Exercise also keeps your joints moving well --a great benefit for those living with any form of arthritis --and it keeps your weight at a healthy size, which is great because extra weight will only add to your pain.
As stated earlier, many people who have chronic pain tend to suffer with depression because they feel like they can no longer live the same productive, fun life they are used to. Being active is beneficial for your mental health because it boosts your self esteem and allows you to do something positive for your overall wellbeing. To know what type of exercise is best for you, consult with your doctor or physical therapist, but chances are, you can get a gym membership or put together a little home gym of your own, and significantly help your situation.
Avoid long-term use of prescription medications
To combat chronic pain, prescription drugs such as opioids and antidepressants are prescribed. While those who have had substance abuse issues in the past are more likely to develop an addiction to painkillers, those who have never had this problem before are at risk as well. In a desperate effort to ward off pain, it is easy to ingest more pills than the prescribed amount, which can lead to a long-term dependency on the drug. To avoid abusing your prescription, be sure to only take the correct dosage as needed and participate in other pain-reducing activities such as meditation, exercising or hot yoga.
At times you may feel resentment toward your body because of the pain you are experiencing. While this is normal, the best way to get back to living life on your terms is to maintain a positive attitude, reduce stress, and treat your body well. Chronic pain does not have to stand between you and the life you want to live!
This is essentially “Part 2” of fibroSecret©(Part 5)! I am including the link to the first part below. Take a quick glance back if you have forgotten what it said, then continue below!
Thank you for using your valuable time and energy to read what I have to say. I am humbled and honored.
Meshea Crysup, Founder fibroLIFE©
Well, now that you have reviewed the first part of this blog post, you know the “backstory”, so I am going to just start with this picture from last evening.
This a pictures of me yesterday evening. With me is my friend, Katie. We were at our usual Wednesday night “Pizza & Beer” place. (Shout out to Billy’s Italian Restaurant here in Vicksburg, MS!) I will tell you straight up, it is not flattering to me in the least. I am not proud of how I look—I hate being so overweight (Something you who follow me know I am constantly battling!)
If I am so displeased with pictures of myself why do I take them so often and post them? A picture is worth a thousand words. Pictures put a name to the face. Pictures personify what I am saying—the familiarity of the face leads to my being your “friend”, not just a blogger. Pictures actually give you access to—literally let you INTO—my fibroLIFE©. PICTURES SHOW YOU I REALLY AM LIVING MY fibroLIFE©!
I am far from perfect at doing so, but I endeavor always to practice what I preach—not just “talk the talk” but actually “walk the walk”. I am constantly telling each of you to get out of the house, daily even if you can. I am constantly telling you it is worth the energy to fix yourself up—which for this girly-girl means hair, make-up, jewelry…the works! I am constantly telling you to LAUGH! I tell you to take vacations! I tell you to go to parties! I am constantly harping about LIVING your fibroLIFE© to the fullest and not worrying about what other people think about you being out, “gussied up”, laughing, and having a good time. I take and share the pictures to SHOW you that I mean every word I say and that IT IS DOABLE!
There was a time, however, when I would not have shared this picture, pictures from my vacations, or any other for that matter. There was a time when I was afraid to let anyone see that there were times I actually still LIVED, in spite of having Fibromyalgia (FMS). As I explained in the first part of this post, we are already so misunderstood—so many people think we are faking it or it is all in our head. I did not want people to think that about me. What I found was, however, people will always think whatever they want to think. Haters gonna hate!
What I now do is just the opposite of what I once did. Now, I LIVE my fibroLIFE© in full view of everyone—keeping very little of it actually private. Not because, “I’m all that and a bag of chips!” I am not special in any way except that I am willing to put the time and energy into sharing my fibroLIFE© to improve Fibromyalgia (FMS) awareness and understanding. I am not exceptional in any way except that I am willing to LIVE my fibroLIFE© so publically in a sincere attempt to inspire, encourage, and literally SHOW others it is acceptable and doable to LIVE a fibroLIFE© to the fullest—happily and unashamed!
The story behind the picture:
Instead of being afraid of what people think, now I educate people. How? If someone had said to me last night, or if someone who sees this picture says, “You look like you are feeling great!” this is how I respond:
Thank you! In order to be here tonight and look this way, I had to rest four hours this afternoon. I am very glad it worked though!
The full story behind that particular picture is this:
10 PM Hands hurting so badly I literally wanted to just scream
2 AM Could not go back to sleep after waking from increased pain
3 AM Finally just got up rather than disturb Hubby
3 AM to 11 AM
I did some stretches and “in-home-walking” while listening to uplifting music.
I spent some time with Cally—our furry daughter, canine.
I prioritized and EDITED my day according to how I was feeling.
I fixed Hubby’s breakfast and backed his lunch for work.
I put a load of laundry in and ran the dishwasher.
I gussied up a bit and went to the coffee shop.
I enjoyed the comradery of “the regulars”, felt less “alone”—more “normal”.
Answered some emails, corrected some facebook advertising I had messed up.
Had Coffee Klatch with RHV partner, Morgan, for updates and planning.
Went home. Put laundry in dryer.
11 AM Pain escalating again and fibro fog getting worse/went to bed
3 PM Sleep had been broken/restless, but I was better.
I took my shower, got gussied up, folded the laundry and put it up.
Then I rested more while waiting on Hubby to pick me up for dinner.
6 PM PICTURE GOES HERE
9 PM Had not accomplished a fraction of what I wanted to for the day
Pain escalating, tried to play Words With Friends for distraction
Could not focus nor stand to hold my phone due to pain in hands
10 PM Trying to be still, not disturb Hubby. Finally slept off and on
2 AM Pain woke me up. Had to just get up. Wrote an inspirational/informational message to SOMEONE ELSE to REMIND MYSELF not to feel sorry for “poor me”—other people have problems too. I felt too badly for it to be “publishing quality”, but the person it went to would be able to follow it.
4 AM Accepted the fact that today was going to be very limited, again…
7 AM Wrote this post.
The rest of the day: REST
The story behind the pictures you do not see:
Some will read that and feel like I accomplished a lot. In a way, I did. However, in order to LIVE a fibroLIFE that FULL, I have to limit my physical and emotional stress. For example, I have recently had to dial back, considerably, the SIMPLE facebook promoting I was doing for our B&B Association. I cannot think through it, I get behind which stresses me, so I get foggier, get more behind, get more stressed, then the pain increases… I have not been able to edit Morgan’s latest book due to the fibro fog. I did not feel I was safe to drive to a luncheon earlier in the week, so a friend picked me up. There are many things around home that need to be done that I do not have the energy or stamina to do, AND IF I DID DO THEM, I would end up in horrible pain. (FMS pain is not like being a little sore from doing too much. It is varied, complex, and extreme! “If I were a horse…” pain is what I call it. It is so bad that if I were a horse, I would be put out of my misery.) There are many things Hubby would like for me to do—business calls, errands, etc. I cannot. Things that others “just do” and take for granted, I have to edit out of my fibroLIFE© or I end up needing help getting to the bathroom in the middle of the night because the pain is so bad and my mobility so limited. If I take on more, I am actually able to do less, and less, and less…
Yes, I had fun last night. The laughter released endorphins which help decrease the pain naturally. That is a very healthy thing for me! The socialization helps keep my anxiety down and helps me not feel isolated from the rest of the world. No, you cannot look at the pictures I post and see any of the pain, mental fogginess, or severe “editing” of my life. There are many other things the picture does not show, however. It does not show all the times I have had to NOT go to dinner, lunch, the coffee shop because I could NOT go. I do not take pictures of those times. I am not brave enough to share them—I am not sure I ever will be. I can and do talk and write about those times freely, but I am afraid to let the world see me at my worst.
I am no longer afraid to let the world see that I LIVE my fibroLIFE© to the fullest. In fact, when people say I look like I am feeling great, I am glad. That means what I am doing is working. That means by sharing my experiences—what has worked for me what has not, the ways I have learned to deal with limiting my activity, etc.—I am possibly helping others. What better way is there to LIVE one’s LIFE? Not just a fibroLIFE©, but any LIFE?
Still not convinced to let others see you are having a good day?
I understand your fear—and I know it will take time and baby steps to overcome it, as well as encouragement from others.
I really do understand how scary it is to let those you know are talking about you behind your back see you actually LIVING. I assure you, they are going to talk regardless.
Furthermore, I really do understand the energy it takes to “gussy up”, go out for dinner, and laugh. More importantly, I understand the benefits of it as well.
LIFE is short. Please, LIVE your fibroLIFE© to the fullest, every single day, happily and unashamed.
By Meshea Crysup, fibroLIFE© Founder, Author, FMS Patient-Expert
We all know the quote, which debatably may or may not be attributed to Albert Einstein, “Insanity: Doing the same thing over and over again and expecting different results.” I will be the first to admit that I actually use this quote a good bit. It is, on the surface, very logical. I would go so far as to say that, for the most part, it is correct. I do believe, however, there is a legitimate exception to this concept. I will explain by starting with yet another favorite quote: “The path isn't a straight line; it's a spiral. You continually come back to things you thought you understood and see deeper truths.” ~Bill H. Gillespie
Contrary to my nature, I will endeavor to be concise.
· We each have certain issues.
· We can only deal with them at whatever stage of life we are in at a given point in time.
· As we mature, change, experience more, etc., we develop our skillset, and are thus able to deal with our issues more deeply, completely, etc.
· Once our inner being senses we are ready, we go back or revisit it—but not to just make the same old mistake again.
· We “return to the scene of the crime”—or maybe more aptly, the “scene of the time”—to learn from it on a deeper level—process it more thoroughly.
· We recognize what is happening and process it a little more quickly each time—thank goodness!
· This is not the same as making the same mistake over and over and over…
· Still, the hurt can be just as “fresh”, the wound just as “raw”, as the very first time.
· Yet, it truly is a good thing—it is personal growth and we do emerge wiser, stronger, better…
“The healing process is best described as a spiral. Survivors go through the stages once, sometimes many times; sometimes in one order, sometimes in another. Each time they hit a stage again, they move up the spiral: they can integrate new information and a broader range of feelings, utilize more resources, take better care of themselves, and make deeper changes.” Allies in Healing by Laura Davis”
― Laura Hough, Allies in Healing: When the Person You Love Is a Survivor of Child Sexual Abuse
Do not get frustrated with yourself when you are in this position.
Remind yourself that it is a normal, healthy thing.
Endure it—embrace it—move through it—and move on—again.
Do no harm to others or self.
Apologize, if you need to, to others, and yourself.
Each time, come out the other side LIVING a happier, better LIFE than the time before!
by Meshea Crysup
Founder of fibroLIFE© & LIVING a fibroLIFE Blog©
This is the fifth blog in an ongoing series in which I confess my fibroSecrets©. I have found that many others with Fibromyalgia (FMS) are keeping the same fears in, dealing with them—or worse yet, not dealing with them—alone. My goal is to help each of us find the courage to LIVE a fibroLIFE© without fear or secrets and to help those who share a fibroLIFE© to better understand.
fibroSecret© five: I was afraid to have a “good day”.
Actually, I am hedging there a bit—afraid to admit what I am about to admit apparently--I was afraid to admit I was having a “good day”.
How sad is that? Seriously, how sad is that?
If someone with a heart problem has a “good day”, they do not have to worry about people thinking they have been “faking” their heart problem! Their friends are happy for them!
If a person has cancer, no one assumes they are “cured” when they have a “good day”. Everyone considers it a blessing they should embrace!
If someone with arthritis is having a “good day”, most people realize that tomorrow, or the next day, they may be worse again. Most do not expect them to function at this “higher level” all the time.
But if you have FMS, or some other Invisible Illness, the perceptions are entirely different! I heard it growing up, as relatively healthy adults in my life talked about other adults who were not as healthy. I saw it as a nurse, as other nurses, doctors, therapists, etc., assumed they could “just tell” who was faking and who was not. I learned, first hand, that family and friends could not be trusted to understand and that healthcare “professionals” were often anything but professional, if they could not “see” an illness or condition to their personal satisfaction.
This life lesson greatly impacted how I LIVED—or rather did not LIVE—my fibroLIFE© for far too long. I missed out on far too many things out of fear of what others would think, say, and/or do if they saw me or heard about me having a “good day”. The truth is, sometimes I still have to fight this battle. Actually, I am fighting this battle this very day!
I have been pushing the envelope for a good while now. I took on more than I should have. I over-extended myself. I committed to things that I knew would cause me increased anxiety and stress. No one “made me”. It is “who I am”. I take responsibility for that, and I do work on not being that way, but sometimes I fail. I hate having FMS. I hate not accomplishing all the things I can conceive of. I resent not being able to do all the things I see that need to be done and that I know how to do.
So, here I am, in a major flare, having to re-commit to the much less stressful, demanding fibroLIFE-style© I must live to LIVE optimally, and re-tackling the fear again of “outing myself” on “good days”. I told everyone involved that I could go into a flare and have to do less. I tried to manage expectations, explain how FMS works—ironically keeping those with FMS from working—and I believe those I have gotten close to do understand.
So, this morning, I had to make another right decision for me, and just not worry about what others think. I needed to get out of the house. I needed to try to write something—accomplish something. I needed to be alone, but not alone. (I do not feel up to talking, being entertaining, etc. but I needed to get out and interact some—another whole series of blogs would be required to fully explain FMS and the truths behind that one sentence!)
I am struggling to “find words”, but as long as I am not talking—yes I am capable of “not talking”—no one knows that.
I am writing, so it “looks like” I am being productive again.
The truth is, I feel awful. My pain is up. A much better blog post is in my head but, frankly, I do not have the energy to fight the fog that keeps causing it to disappear from my mind’s eye. That same fog, along with a headache that just will not go away, keeps it from flowing from my mind, through my fingers, onto the keyboard, and out to all of you as the quality piece of work, full of much more valuable insights and information, that I know is “in there”.
What to do now?
I am going to leave the title of this blog as is, and, hopefully, write the blog post it is supposed to be another day. (Why? Because I feel that strongly about being REAL with all of you!) But in truth, today, my most relevant fibroSecret© eluded even me until just now.
The truth is, I am afraid…
But not that people will see me out and think I am “cured” or have been “faking it”. Right now I am not concerned that someone might think I will be doing as well tomorrow as I appear to be doing at this moment.
Today’s fibroSecret©--apparently fibroSecret Six-- is this fear:
What if I do not “get better enough” again to pull that “much better blog post” out?
What if, this time, I pushed too hard, and I cannot return to my former “optimal state” which was already sub-par, to me?
What if this is going to be my “new norm”?
This fibroSecret© Six is not unwarranted either. As I have gotten older, “optimal” has become less and less. I have had FMS from as far back as I can remember. I was able to work very high-stressed positions when I was younger. I was very high-functioning and I have witnessed that decrease incrementally over the years. What if this time is one of those times?
Maybe this will be fibroSecret© Seven: If this is my “new optimal”, I will make the best of it too! I will LIVE my fibroLIFE© to the fullest extent possible!
But if you know me, you know, that is really not a secret at all!
Stay tuned. I will write fibroSecret© (Part 5): I Was Afraid to Have a “Good Day” Re-visited! It will be that “much better blog post” that I cannot pull out of my foggy, tired, aching fibroMind today! I cannot tell you when, but I will do it!
My Dysfunctional Childhood Greatly Contributed to My Fibromyalgia
(Part 4 of On-going Series)
by Meshea Crysup
I do not talk about this for sympathy or to belittle anyone involved. I discuss it because secrets hurt—especially fibroSecrets©
Daddy is still alive. I visit him, we talk on the phone, etc. We never discuss the past. In his mind, it never really happened. He always blocked it out as soon as it was over. What purpose would it serve to make him face the truth at this point? He is 80+ years old. I forgave him long ago, for both our sakes—but mostly for mine.
Founder of fibroLIFE© & LIVING a fibroLIFE©
Fibromyalgia Patient-Expert, Blogger, Author, & Speaker
As I have previously shared about my pain and other FMS symptoms, my non-restorative sleep issues also are a part of my earliest memories. I cannot remember a time when I was not afraid. I grew up at knife point, gun point, and on the other end of a fist. There is much more to the story, but you get the picture. Terrified each night, I literally replayed entire episodes of Gilligan’s Island in my mind, inserting myself into the storyline, for mental distraction and emotional escape. I would eventually sleep, but I often felt as if I had not.
Perhaps I was predisposed and this was the trigger, but I cannot--and I do not—say this was the cause of my FMS. I am positive, however, that it contributed to a “perfect storm situation” in which Fibromyalgia could, and did, thrive. I am not alone in this—I am not the only one with this fibroSecret©.
Researchers have found that the hippocampus, which is the part of the brain responsible for short and long-term memory, is altered in abused patients. “Re-remembering” of pain and perceiving pain more intensely—two things connected to FMS—are possibly related to this change or even other, unidentified changes.
Some fibroVOICES© I greatly respect have expressed their discomfort with articles on this link between childhood abuse and FMS. I understand the concerns of contributing to the notion still held by far too many that “FMS is all in the head”. This link however, in my opinion, actually further validates FMS as a legitimate illness. The fact is, without a “psych diagnosis”, the government (Social Security Administration) does not acknowledge the diagnosis of FMS. Non-restorative sleep’s integral part in FMS and its subsequent effects, provide a legitimate explanation for this.
I believe we have far more to fear in keeping this fibroSecret© than we do in encouraging speaking up and getting the help needed. In fact, for me, making the connection between my life-long depression and anxiety, my dysfunctional childhood, and FMS gave me a greater understanding of the complexities of my illness. It was the first step in my accepting that I did need to take antidepressants and ant-anxiety meds. This is an important part of my personal FMS treatment plan. In fact, it is the very aspect of it that has physiologically enabled and psychologically empowered me to more fully LIVE my fibroLIFE©.
by Meshea Crysup, Founder fibroLIFE
LIVING a fibroLIFE Blog
I have always been introspective. Even as a very young child--three or four--I agonized over what I had “done” with my day, everyday. Uncharacteristically for a young child, I understood that, like money, I only had so much “time to spend”. I had this innate sense that LIFE was short. I just knew that LIVING my LIFE was not the same as existing. In truth, one of my earliest fears was that I would merely exist...
Heavy stuff for a child. Heavy stuff as a teen in a very dysfunctional situation. Heavy stuff for a new wife, new mother, divorcee, second-time wife, second-time divorcee... Heavy stuff, and ironic, for someone with Fibromyalgia (FMS). After all, it is notorious for stealing its victims lives. Not via death, but rather through the limitations imposed upon them by the pain, fatigue, mental fogginess, mood disorders, and a seemingly endless list of “other symptoms”.
I am not sure I believe in irony however--a post for another time, probably even another place. What I do believe however is that as surly as I need air to LIVE, I have to find ways to encourage others to LIVE. Regardless of having FMS, another chronic condition, sharing the LIFE of one who does, or all the other endless variables possible in LIFE, each of us only has so much LIFE to LIVE. We only have so much TIME to SPEND. It is not up to me how you spend it, nor am I trying to make it so. I just want to be sure you realize this truth and are keeping an account of how you are spending your limited time. I just want to be sure you are not merely existing, but rather, CHOOSING how to LIVE your LIFE!
Time...Life...both are short. Please, choose how you spend them!
Meshea Crysup, Founder fibroLIFE , LIVING a fibroLIFE Blog, Fibromyalgia Patient-expert
LIVING a fibroLIFE© is happy to have Jackie Waters as our guest blogger this week. Jackie’s post is on coping with chronic pain, in general. While not specific to Fibromyalgia, hers is a voice I believe should be heard and I am honored to share her work with all of you! Be sure to check out her website as well! www.Hyper-Tidy.com
& LIVING a fibroLIFE Blog©
Jackie Waters is a mother of four boys, and lives on a farm in Oregon. She is passionate about providing a healthy and happy home for her family, and aims to provide advice for others on how to do the same with her site Hyper-Tidy.com.
How to Cope with Chronic Pain
By Jackie Waters
Living with chronic pain can be quite the adjustment for someone who has previously lived a very active lifestyle. When bouts of pain arise, it can be very frustrating and make you feel like your quality of life has diminished. Although the pain in your body causes you to not want to be mobile, there are several things you can do to give you some much needed relief. With effort and a positive attitude you can turn this once debilitating situation around for the better!
Make changes to your diet
Most chronic pain stems from chronic inflammation in the body. Acute inflammation is the body’s attempt to self protect and remove harmful stimuli in order to start the healing process, which is needed for the body to function properly. Chronic inflammation is where the problem lies, because your immune cells start to overreact and fail to eliminate what was causing acute inflammation. One of the best ways to combat chronic inflammation and reduce pain is to make sure you are eating a diet rich in green vegetables and fatty oils such as olive oil. You will also need to eat lots of foods that are high in omega-3 fatty acids, such as flax meal, beans and walnuts. Eat coldwater fish such as salmon, trout and mackerel at least 3 times a week. For snacks, eat a serving of fruit or unsweetened greek yogurt. Avoid the consumption of processed foods and refined sugars because they trigger inflammation and pain in the body. This type of diet will not only help you find relief from your pain, it will also give you more energy, which is a necessity to get through your days!
Do not become dependent on prescription painkillers
One of the easiest ways to cope with pain is to be prescribed medication for it. While medication such as opioids and antidepressants provide temporary relief, many people find themselves addicted to the pills later down the line. While those who have had previous issues with substance abuse are more likely to become addicted to painkillers, those who have not had such issues are still at risk because they tend to overuse the prescribed amount in search of relief. While this fact may alarm you, do not try to avoid the use of pain pills until you are in extreme discomfort, because waiting may actually cause you to break down and use more pills than you should. The best way to avoid a dependency is to only use the recommended dose of medicine for your pain. If you still find yourself hurting, find alternative ways to minimize your pain such as meditating or practicing yoga.
When you are in pain, the last thing on your mind is exercising. However, the natural endorphins that are released from exercising can boost your mood and change your brain’s overall response to pain. When you exercise you strengthen your muscles, which helps prevent re-injury and more pain. As you begin exercising frequently, you begin to overcome limited functioning because you are challenging your joints and muscles. Whichever method of exercise you choose does not have to be strenuous in order to be beneficial. You can start by going on brisk walks around your neighborhood for 30 minutes a day or participating in a beginners yoga class. Ask your doctor or physical therapist for advice on what exercises will help you the most.
Chronic pain does not have to be a battle that takes your life away from you. There are going to be good days and bad days, but as long as you commit yourself to staying active and positive, you can still manage to live a happy and healthy life!
By Meshea Crysup, Founder fibroLIFE© & MesheaCrysup.com: LIVING a fibroLIFE©
We are all aware—and probably guilty of taking—those silly “tests” on facebook. Every once in a while, however, they seem to “nail it”. In fact, one I took yesterday did just that!
I am the one laughing, making sure others laugh…
That “morning person” that everyone hopes to avoid (Remember Donna? Remember Kris?), or perhaps, really hopes to find and have in their life (Like the guy at my fav coffee shop who always thanks me for bringing the whole place “UP” when I come in!)!
The glass is always more than half-full. Someone always has it worse-off than I do.
Something good comes from everything.
There is always something to be happy about.
And, of course, my favorite soapbox: HAPPINESS IS A CHOICE!
One of these more recent friends is someone I really only know from facebook. We are both members of a few of the same fb groups. I actually began talking to him because he lives in India and I am constantly seeking to understand other cultures and religious beliefs, in this case, Hinduism. (Fascinating, ANCIENT belief…!)
Well, as per usual with FMS, I was up in the wee-hours this morning. I was trying to distract myself from the pain by doing some “mindless” (Meaning it was easy, not taking a lot of ability to focus.) promoting of Rediscovering Historic Vicksburg, as well as posting some inspiring and motivational Memes, along with “my two cents”, on my personal page and fibroLIFE©, and MesheaCrysup.com: LIVING a fibroLIFE©, when a fb message popped up instructing me to check my email. What I found there left me in tears—happy tears. But, typical girly-girl that I TOTALLY AM, I was also smiling. Not just any-old-smile: A Spontaneous Smile!
My fb friend from India had put together a movie to go with one of my songs! He even mixed in pictures of my family, friends, and me…smiling! Ironically, he only knew that I had written the song. He asked who “the voice” was. I really smiled—and cried some more—when I told him it was all me. The voice, music, lyrics—all me. He replied, “Mmm…that’s why you’re so popular!”
I simply replied, “I don’t know about that, lol!” I was thinking, however, “No, I am not popular—I just LIVE, laughing and smiling as much as possible.”
I told my fb friend I could not thank him enough and asked why he did such a thoughtful thing. He replied, “The future depends on what we do in the present? Ahaaaaa!”
He was quoting something I had “mindlessly” posted, and in true-Meshea-fashion, had elaborated on, about two hours earlier. This is it:
By Meshea Crysup, fibroLIFE© Founder
…the possibility of “fogging” also has caused me to experience extreme stage fright, which, anyone who knows me can tell you, is NOT me.
It just so happens I saw two of my doctors this week and the prescription was, (drumroll please) “You have to start playing music again for your own wellbeing.” Apparently playing, singing, performing, and writing since you were a very young child, then totally giving it up, is not mentally healthy. Something about, “…shutting down, discarding, and burying a huge part…” of who I am. (Of all people, you would think I would have figured this one out on my own! Maybe I knew…?)
So, after seeing the docs, I actually dug up files of songs I wrote in 2004 and 2005, files of Alix—one of my former students and dearest friends—and I practicing and singing, and some other “old stuff”. I have been listening to them, sharing some of them with both new and old friends, and have even had my guitar out to play a bit. There have been some tears, I will not deny, but most of them happy ones. In fact, the entire experience has been a positive one, except for the whole “old computer files are difficult” part. Admittedly, I have not figured out how in the world I am going to perform in spite of—as a part of—LIVING a fibroLIFE©. I am sure I cannot do so on a regular basis. However, I am going to sing and play for people again. I am going to write again as well.
My main take-away from this, however, has been a fact that I knew, but did not want to admit: Fibromyalgia—my fibroLIFE©--has gotten a “bad rap” on this one. While it is true that it makes embracing the singer/songwriter/musician part of myself difficult, the real reason I have totally suppressed that important part of myself really has nothing to do with FMS. It has just been easier to “blame” FMS than to face the real issue. It is time.
Naturally, having discovered this truth in my own fibroLIFE©, I felt compelled to share it with all of you. LIVING a fibroLIFE© is remarkably hard. No doubt, FMS effects many aspects of LIFE so completely that we have to greatly modify how we LIVE. However, for your own wellbeing, take a bit and ask yourself: Is there something I am blaming Fibromyalgia for in my LIFE because it is easier than facing the real issue?
…I wanted to take a picture of this moment
For all my friends to see.
So many who know me now did not know me then.
I wanted them to meet the real me…
I Caught a Glimpse of Me Today!
By Meshea Crysup, fibroLIFE© Founder
I am not going to spend a long time on this post, because time—clear thinking, productive time—is a luxury I cannot afford to waste. I did feel, however, that I had to share this with all of my friends and followers, LIVING a fibroLIFE©.
This morning, we had a bit of crisis at the home we still own, four-hundred-plus-miles-away, in Paducah. No one was hurt, but still there was “business to be done”.
On top of that:
· I had Coffee Klatch, which is my weekly meeting with “Partner-in-Time”, Morgan Gates, and Realtor Extraordinaire, Kim Steen, to discuss the status and plan steps of Rediscovering Historic Vicksburg©.
· I am struggling horribly getting the formatting correct on Rediscovering Historic Vicksburg Book Series© first book, of course written by Morgan Gates.
· I needed to get a new ad out for a part-time tour guide for Haunted Vicksburg Ghost Walk, opening for its seventh season this very weekend.
· I needed to find out the times for Ash Wednesday Service at the various Catholic churches in town, then go pick up, Hubby and his colleague for the service, and take them back to work.
· Plus, I had just the usual “every-day-LIVING” we all must do!
Those of you with FMS (Fibromyalgia) know that can be three month’s work, let alone a few hours in one morning! Today, however, I rose to the occasion--I caught a glimpse of me.
· I made phone calls, managed multiple texts, found files and other older information needed, and was not inarticulate when discussing the damage and management of the situation in Paducah.
· Coffee Klatch was “Click, click, click…” for me, mentally. No fog, in spite of the Paducah crisis going on.
· I had an epiphany regarding the formatting issues with Morgan’s book.
· Morgan and I whipped up the ad during out meeting—bam!
· I called around—yes I used the phone, for talking, multiple times today—identified the best Mass to attend, rounded up Hubby, plus one, went to Mass, and got them both back to work.
· I wrote, in my head, nearly in their entirety, at least three blog posts I want to do regarding my Catholic Lenten experience.
· I wrote down the title to no less than five songs I heard that I really want to work out and actually perform in front of people!
· I called my former, fibroLIFE© co-Director and Dear-Friend-Extraordinaire, Kathy Keeney to discuss the tree that blew down (That’s a whole other blog post.) and a possible visit soon.
Then, immediately after that phone call, I went to the end of the driveway to collect the garbage can after trash pick-up. I felt the wind in my hair and on my face—always a feeling that moves and inspires me—and I broke down in tears.
I cried, and cried, and cried…
I am still crying.
My mind is literally screaming, repeatedly, “I miss me!”
In spite of the tears, I am still not foggy, the pain is not overwhelming, and I am not yet too fatigued to continue, and continue, damn it, I will!
I got my computer back up after having it with me for Coffee Klatch, found the poem I wrote many years ago, and, in spite of all the things I still need to do, I whipped this out. (Yes, I LIVE with Fibromyalgia and TODAY I was able to say I say I “whipped something out!”)
WHY did I take the time to do so?
Some who read what I write about LIVING a fibroLIFE© think—and have told me in no-uncertain-terms—that I must not struggle as much as they do because I insist we all can, and must, choose to LIVE in spite of FMS. I wanted to share this very real moment, especially for them.
If I allowed myself to think thusly, I would see a stranger looking back at me in the mirror, a good deal of the time. I would give up. I would be defeated. I would not be doing my darnedest to remain “relevant” in the real world. I do not allow myself to think that way, however.
True, I am not this me nearly as often as I long to be. But always, I am me! There is no shame in being the “me” I usually am now. I refuse to stop LIVING. Even on the days I cannot do so at “Meshea-Speed”, I stay positive, I stay engaged, and, most importantly, I keep trying.
It is not easy. I love the days—the precious, few days—like today, when it is easy, but no one has an easy life. We all have a LIFE struggle of some sort. Fibromyalgia, frankly, is but one of mine—but it is just that: mine. I am not unique. I have not been singled out, punished, etc. No matter how much it may seem so, during my many long hours of pain, fog, and fatigue, I do not have it worse than most of those around me. I have it differently than most, but not worse.
Yes, I am so very glad to be the more capable me at this moment, but I must choose to LIVE when she is drowned out by FMS.
…Reality set in and I knew in a day, hour, or moment
Fibromyalgia could again take it all away.
I prayed, “Dear God, help me remember.
Dear God, help me remember…”
I caught a glimpse of me today!
Yes, I want to remember, but I am through crying—this time. Yes, I said it: this time. I mourn too—just like you—even after twenty-plus years of no longer being able to be that me. I really do understand the struggle of LIVING a fibroLIFE©. I am not super-human. I do not think I am better at this “LIVING a fibroLIFE©-thing” than any of you. In fact, I am probably not as strong as many of you are. That is why I know, beyond a shadow-of-a-doubt, you really can choose to LIVE your fibroLIFE© too.
It is time to stop crying—stop “missing me”. I am right here: Stubborn, obstinate, determined, and always, always, LIVING my fibroLIFE©.
Below is the poem, in its entirety. I wrote it over fifteen years ago. Some days, it still applies. Some days, I still grieve…but I move on…every time. Every. Single. Time. ~Meshea Crysup
I Caught A Glimpse of Me Today
Though ever-present pain greeted me
When I opened my eyes,
My mind was not foggy.
I praised God as I realized…
I caught a glimpse of me today!
I could think clearly
And concentration did not make my head ache.
I could be my old creative self.
I was elated at the possibilities of what I might make…
I caught a glimpse of me today!
I felt like my former witty self;
Ideas flowed quickly as before.
I prayed that it would last.
I hungered for more…
I caught a glimpse of me today!
A song was on my lips,
Unable to remain in a heart so eager;
I sang out loud to God and myself.
No one else was around to hear, but it didn’t matter…
I caught a glimpse of me today!
The reflection in the mirror
Was not merely the shadow of a memory;
There she was, just like before.
She was real…
She. Was. Me.
Though my body was racked with pain
There was joy on my face.
At that moment I was secure,
Confident of God’s grace…
I caught a glimpse of me today!
I felt confident of my gifts and talents.
I was sure of my abilities.
I wanted to play and sing, write, teach, organize, lead, encourage, cook, sew…
The hardest part was choosing just one of these…
I caught a glimpse of me today!
Happiness flooded my soul
And brought the twinkle back to my eyes.
Optimism was again truth,
Pessimism again lies…
I caught a glimpse of me today!
I wanted to take a picture of this moment
For all my friends to see.
So many who know me now did not know me then.
I wanted them to meet the real me…
I caught a glimpse of me today!
Reality set in and I knew in a day, hour, or moment
Fibromyalgia could again take it all away.
I prayed, “Dear God, help me remember.
Dear God, help me remember…”
I caught a glimpse of me today!
All Rights Reserved
by Meshea Crysup, fibroLIFE Founder
I imagine those of you who spend a lot of time online trying to help others with Fibromyalgia (FMS) have heard that question many times. I know I have. Even worse, it is usually those closest to me—family and friends—that just have to ask. I will admit, sometimes I even wonder myself. After all, there are so many of us now on facebook, Twitter, Pinterest, etc. Is there really that much to say about FMS? Is there really a need for so many of us talking about the same thing?
I have been in a flare after being sick and having to take antibiotics. Because of that, I have not blogged on FMS or posted and shared much about it for about two weeks now. However, during that time, I have been contacted several times regarding FMS. I would like to share just a couple of them with you.
A friend from Paducah was having new symptoms. She wanted my advice. Of course, any new symptoms must not be assumed to be “just FMS.” She has followed me online for years and attended many of my talks, so she knew this, but she needed me to tell her that I really meant it for even her! It turned out to not be fibro-related as well as pretty serious. She let me know the outcome and thanked me for still being here for her all these years.
I received a text. It simply said, “My name is______ (I am not revealing her name) and I am having __________. (I am not revealing her symptoms.) Could this be from my FMS?” After our text discussion, she simply said, “Thank you!” I still do not know her last name, where she lives, etc. I do not need to. I have put my name and number online via blogging, facebook, websites, etc. for years and have told people consistently, “If you have questions, TEXT ME anytime. When I am able to, I will reply.” I was so moved that she took me at my word! It also got Hubby's attention which is great, because he is not always so sure I am really making a difference. Actually, I was feeling very useless because of my flare and her text may have helped me more than my reply helped her!
I have a few more incidences, similar in nature, but you get the gist of it.
YES, my being online blogging, sharing, opening up, reaching out, encouraging, educating, etc. really does make a difference! It not only helps others, but it helps me as well!
I am just as convinced that, Yes, YOU—all of you, each of you— no matter how big or small, YOUR online presence really makes a difference as well!
fibroLIFE Basics©: Tracking your symptoms is worth the time and effort!
You do not have to understand Fibromyalgia (FMS) at the healthcare professional’s level to LIVE a fibroLIFE©. What you must do, however, is figure out what causes your symptoms to increase and decrease. In fact, this is not something anyone else can do for you nor can any healthcare professional accurately answer for you. Yes, it is true that there are predictable changes, activities, stressors, etc. that will cause FMS to be worse, but the degree of effect of each of these is different for everyone. You have to determine your own “cause and effect” perimeters. The only way to do that is to track your symptoms.
There are tools available online and in books to help with this. You can create your own if you prefer even. What really matters is that you actually have a system that you are using!
Because my focus is in keeping Fibromyalgia as simple as possible for you, I advocate tracking the “Big Four”: Pain, Fatigue, Fog, and Mood. fibroLIFE© actually has a symptom tracker that utilizes pictures as visual aids to make it easier to identify what it is or how it is that you that you are feeling. I do not use “…on a scale of one-to-ten...” Frankly, who remembers what “six” felt like three days ago?
I do make little notes related to the “Big Four” pictures that I circle or mark to document information that will help me later understand the “cause and effect” aspects. For example, if I document that my pain was worse than usual, I will also note if it was storming, had turned cold, if I had overdone it the day before, if I was taking a cold, if I had experienced a very emotional incident such as a fight or a death, etc. I also tend to note how much pain medication I have to take. For me, this is a very consistent indicator as to how badly I am hurting.
Of course we have many other symptoms with FMS, but often they can be indicated with a brief note as well. If not, fibroLIFE© does have more detailed symptom trackers. I do not recommend them for long-term use, however. After over a year of testing various symptom-tracking systems with several FMS sufferers, we found the more basic the tracker, the more apt they were to use it. Tracking symptoms in depth for a few days is not as important or helpful, usually, as tracking “the big 4” an entire month at a time.
Doctors also got to see these trackers in use during the same time period and found the information very helpful in quickly understanding what their patients day-to-day fibroLIFE© looked like. In fact, the tracker is designed to show an entire month’s worth of symptoms at a glance. This type of information tends to promote communication between doctors and patients, improve doctor/patient relationships, and lead to improved and more effective FMS treatment plans.
Whether you are trying to determine what is wrong with you, have already been diagnosed with FMS, or have been dealing with FMS for years, symptom tracking is an essential part of minimizing fibro and MAXIMIZING LIFE—an essential part of LIVING your fibroLIFE©!
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If You Knew You Would Not Be Judged…
One of the people I follow on facebook had this question posted today: If you knew you would not be judged, what one thing would you do differently? Surprisingly, everyone was declining to answer! Not surprisingly, I did not hesitate to answer. After all, the parameters of the question clearly stated, “If you knew you would not be judged…” What was there to fear? Apparently, no one else believed that they could trust that they would not be judged.
To be honest, I did not believe it either. I suppose since I knew I would be judged, I must not have cared. Why else would I have answered?
Another person I follow on facebook had a bit of a twist to a common quote. Instead of saying, “I’d rather regret something I did than something I did not do,” the comment made was, “I find what I regret most are all things that I did.” I could not relate at all. Of course, I regret things I have done, but at least I “did”—I LIVED.
I have faced challenges in life—big ones—as far back as I can remember. I had severe pain and was not well, but not actually sick either, as far back as I can remember. I lived in fear in my home—the one place every child should feel safe—as far back as I can remember. People did not believe I was in pain or sick. People did not believe that home was not safe. They did not always come right out and say so, but, even as a child, I could tell.
Maybe the fact that I have dealt with knowing I was being judged—and wrongly—from such an early age is why I was the one today who answered the question of what I would do differently without hesitation.
Add to that, staying safe and feeling well were never “givens” in my life—again, as far back as I can remember. So, yes, many of the things I regret are things I have done rather than things I did not do, but I am more than good with that. I want my mistakes in life to mean something—to be because I was trying to do something rather than not trying. Doing nothing is existing. Trying is LIVING.
What did I say I would do differently?
I said I would have studied Ancient History and Civilizations, become an Egyptologist, and have spent my life traveling—probably while remaining single.
Logically, the next question has to be: Since I feel so strongly at this point in my life that I wish I had done these things, what am I doing about it now?
I have read about Ancient History and Civilizations my whole life, and continue to do so today. The same with Egyptology. I travel as much as I can. Granted, I have not been able to travel to the places I read about, I am looking for ways to do so in the future. In the meantime, I am part of several online groups that have the same interests.
Also, because I love Ancient History, loving history in general was a natural progression. I have studied World History and American History for years. I have traveled to many of the places I have studied, including St. Petersburg, Russia. I plan to travel to even more of them. Also, I now LIVE in one of the places I studied: Vicksburg, MS. I am also, as my followers know, now DOING what I can to support “Rediscovering Historic Vicksburg”.
I am not worried about being judged by others. I am not worried about mistakes I might make because of what I am trying to do. I am too busy LIVING my fibroLIFE© to the fullest, in spite of Fibromyalgia (FMS).
I want to end with a few questions for you:
Yes, someone will judge you, but what would you have done differently?
Yes, you will make mistakes, but what are you going to do about it now?
It is a brand new year; what better time to start?
I heard a quote today I am going to borrow and modify a bit: I want to be at the scene of the TIME!
I am very excited about what all of us are going to do in 2017, each LIVING our fibroLIFE©!
Main Street Market Café
902 Cherry Street, Vicksburg, MS 39183
Unfortunately we all have those family members and friends who just do not get Fibromyalgia (FMS).
You can try to educate them.
You can get angry with them.
You can ignore them.
Before doing anything, however, take a moment to consider this:
When it is all said and done, does it really matter if they understand?
You can try to educate them.
Not everyone is teachable, for whatever reason. Perhaps they are not capable of learning, do not want to understand, are just convinced, for some reason, they have gotten better information from another source even though it is wrong, etc. Sometimes the situation or location is not conducive to making it a teachable moment.
You can get angry with them.
Anger is a legitimate emotion and one we are all entitled to. There are times when enough-is-enough and it is time to let someone know it. There is a fine line however between assertively informing someone that they are out-of-line and aggressively addressing the issue, ending up out-of-line yourself.
You can ignore them.
Sometimes it is best for you, the other person, for others, or perhaps for everyone, to just be the bigger person and let it go.
The question is, “Does it really matter if they understand?”
I am not going to pretend for a moment that I know the answer to all the possible hypothetical scenarios. I am not even going to say I would know the correct answer if I knew the details of an actual situation. In fact, the only one who can answer that is you.
Only you know the dynamics of the relationships involved, the personalities of the people involved, etc. Only you know if you want to use your limited energy trying to set the record straight. Only you know if you will be helping more than hurting or hurting more than helping by taking a stand. I do know, however, that whatever the topic, rarely will everyone you know agree with you or understand your situation.
In my own LIFE, there have been situations when keeping the peace, preserving relationships, not spoiling a special occasion, or just being the bigger person or more understanding person was the best thing for everyone involved, including, and maybe even most especially, myself.
Act the Way You Feel or Feel the Way You Act?
A Living a fibroLIFE© Blog by Meshea Crysup
So much of our own wellbeing is directly related to our own thoughts—our own choices.
Rest assured, I am not going to say that you can “positive-think-away” an illness or troubling event or situation, but I am going to say that how you think, even related to such uncontrollable aspects of your LIFE, can and will make a difference. Whether or not that difference is for the better or the worse really is entirely up to you!
~Meshea Crysup, Founder of fibroLIFE
Do you act the way you feel or do you feel the way you act?
When you get up in the morning, do you choose to think positively or, do you wake up and wait to see what thoughts just come to mind? Choosing to think positively immediately upon waking will set the tone for your entire day! No, it certainly cannot make Fibromyalgia (FMS) or any other chronic illness go away. Of course it will not change the facts of whatever problems you are dealing with such as finances, the loss of a job, etc. But choosing to think positively in spite of such things will make a difference in how well you hold up to, manage, and LIVE with and through such things.
I often hear people say, “I’ve got to wait and see how I feel when I wake up in the morning.” I am not denying the legitimacy of such statements. Certainly there are aspects of our health we have to accept, learn to work around, and just LIVE with. However, “waiting to see” how you feel also translates into letting LIFE “happen to you”. You have essentially handed over the power to the only things you really have control of—your thoughts and actions!
I do not say such statements lightly. As with all things I tell you, I do my best to practice what I preach. Yes, it is true that I cannot know for sure what I am going to be able to do each day. FMS varies in its severity and effect on me from moment to moment. Of course, if I wake up in a horrible flare, with increased pain, experiencing severe fibro fog, etc. it dictates what I am able to do. It does not have to dictate my attitude however. I control that!
It is my choice as to whether or not I let actually, legitimately, and physically feeling badly effect my mood. I choose whether or not I am a grouch to others or treat others with respect. I choose whether or not I am bitter about not being able to do whatever I want. I can just as easily choose to evaluate what I am able to do and embrace that! Even if all I am able to do that day is rest, I can choose to be thankful for all the good aspects of my LIFE and gear my thoughts toward how great it will be when I do feel better and can do at least some of what I would like to be doing!
This simple change will make a huge difference in your LIFE, but you have to choose to do it, consistently: When you awaken each morning, no matter what your physical condition and/or no matter what problems still exist, choose to be positive, optimistic, hopeful, and grateful! You may not notice a big change the first day, the eighth day, or even longer, however, eventually you will find that, while your situation may not have improved, how you feel about it, your LIFE in general, those you share your LIFE with, and yourself will have changed for the better! As simplistic as it sounds, it is true: Positivity attracts possitivity and leads to positive outcomes. Negativity attracts negativity and leads to negative outcomes. Why not choose to be positive?
So, again, while it is true that you cannot “positive-think-away” an illness or troubling event or situation, you certainly can “positive-think-yourself” into a calmer, happier, more stable place mentally and emotionally and it will make a difference in all other aspects of your LIFE. The choice really is yours and only yours—mine and only mine. No one else can make this choice for us.
Daddy and Aunt Ada are like oil and water. (Actually, I am pretty sure they do not get
along because they are so much alike, but they would prefer the oil and water
analogy so we will just go with that!) One day, Daddy got a heads up from his
sister, Aunt Shirley, that she was picking up his other sister, Aunt Ada, and they were going to visit him. Regardless of what was socially acceptable, polite, expected, etc., (Not that Daddy had ever cared about those things...) Daddy just did not want to see her. This was his solution:
I knew I had to think of something, quick! So I dialed Ada’s number. She must have seen her caller ID
because she didn’t bother with saying hello. Instead, she said, “I’m about to come see you. Shirley will be here to pick me up any minute.”
I said, “Don’t come! It’s a trap!”
She yelled back, “What?”
I said, “Hell yes, it’s a trap! When you get here, they are going to sign you in and leave you. Whatever
you do, don’t come here. If you do, you’ll never go back home! It’s a trap!”
He was so proud, he could hardly contain himself! He laughed so hard he had tears in his eyes. Once
he composed himself a bit he, “Well, it worked! That was about four months ago
and she has not trusted any of them enough to come visit me yet!”
It was a cute little story, but what is my point?
You do not always have to do what is socially acceptable, polite, or expected. Sometimes, you have to just do what is best for YOU.
I am not saying you should use Daddy’s tactics. (Although I must admit I laughed as hard as he did! If you knew the two of them, you would be laughing right now too!) What I am saying is, whether you are physically not up to it, emotionally not up to it, or you just know it is going to be a negative experience for you, it is perfectly acceptable, perhaps even necessary, for you to decline invitations.
YES, even Christmas family events.
Of course we should make an effort to be socially active, a part of the family, not to let our health rob us of moments we cannot ever get back, etc. Still, the simple truth is not every family gathering is harmonious. Only you know your family dynamic well enough to decide, but if you really feel like it will drain you more than edify you, politely declining does not make you a bad or weak person. It is not selfish or cowardly. Actually, it is rather brave. (Perhaps not the way Daddy went about it...)
Again, politely declining is probably best and definitely more mature. However, do not allow your own holiday season to be spoiled by putting the expectations of others, even family, ahead of your own wellbeing. Whatever it takes—you know I do not mean something crazy, but within reason, right? Just checking!
Whatever it takes—have YOURSELF a Merry Christmas!
Once we stopped laughing, I asked Daddy if he really felt he had done the right thing. After all, she would not have stayed long, she is his sister, and he does like to have visitors. He said, “All we do is fuss when she visits. I have not had to fight with her in four months. Are you kidding? I’m already working on my next plan in case this one stops working!”
A LIVING a fibroLIFE© Blog
by Meshea Crysup,
Founder of fibroLIFE©
I never dreamed when I reached my fifties, I would share true words of wisdom by quoting the Rolling Stones. It is truly a gas, gas, gas!
Over the past two years I evaluated everyone I have met, decided which ones were approachable on the subject, and explained my ambitious vision to them. Most were impressed, or kind enough to pretend so, and some even wanted to be a part of it. Consistently, however, it would turn out that none of them had the time to spare. After all, fibroLIFE© has never made money; it has always been entirely volunteer. Interested, good people, just could not give up thier "day jobs", no matter how much they believed in what I was saying.
While I was unhappy about not finding anyone to help rebuild fibroLIFE©, my approach to the rest of my LIFE was working out pretty well! I did find people who liked to eat breakfast or lunch out, and had the time to do so. I met people with similar interest, such as history. Eventually, I even found a newly forming group to become a part of: Vicksburg Civil War Roundtable. In on the "ground floor" and true to my nature, when a chance for a leadership role presented itself, I took it! Ready, willing, and able, because I would have partners! It was volunteer work, not a job. No one would live or die, nor would I be fired, etc. if I went into a flare! Nothing would fall apart if I fell apart for awhile! Perfect!
I was excited from the get-go! I was involved in the meetings, planning how we wanted to “grow the group”, promoting what we were doing on facebook, through networking with history-based businesses and organizations locally, etc. I could not do it every day and I surly was not doing it all according to my own very high expectations. Regardless, I was meeting new people, taking part in very interesting discussions, excited about upcoming events, developing new ideas--all things I thrive on when I am well enough to do them.
Wait a minute…
That sounds an awful lot like LIVING!
Duh! Talking about not seeing the forest for the trees!
I had been locked into thinking I had to recreate the former dynamic of fibroLIFE©. If I were ever going to have any degree of success again with fibroLIFE©, I truly felt I had to find non-fibro people dedicated to the cause, just like I had in Paducah.
Maybe the successful rejuvenation of fibroLIFE© would not happen or look like what I was expecting?
Maybe what I needed was to recognize, be thankful for, and embrace the fibroLIFE© I was building here?
After all, fibroLIFE© in Paducah got people out of the house, got them involved in activities, encouraged creating partnerships between fibro and non-fibro people so the fibro person could be a part of something that would not falter or fail when they had a flare.
As far as "the big picture", I always resisted re-inventing the wheel. I never wanted to duplicate what someone else was doing very well already. fibroLIFE© promoted and shared the great work done by others and focused on what we identified as lacking. Our vision and methods were always different. fibroLIFE© has always been basically me, LIVING my LIFE openly and sharing my successes and failures in the hope of inspiring, motivating, and encouraging others to LIVE their own fibroLIFE© to the fullest! fibroLIFE’s credibility was based firmly upon my never telling anyone they could do anything I had not already done myself! I insisted that we owed it to ourselves to examine our LIVES--what we were passionate about-- and look at the opportunities around us, and then embrace every opportunity available, right where we were, whereever that may be. I do not recall quoting them exactly, but in my own way I was always LIVING, and encouraging others with FMS to LIVE, according to one of my favorite Rolling Stone's song:
You can’t always get what you want.
But if you try sometimes, you just might find—in fact I am positive most of the time—that you get what you need!
Without even realizing it—by just being myself, doing things that interested me, determined to be a productive person in a meaningful way in spite of FMS—I found the non-fibro partners I needed. True, they are not doing any of the things I thought I needed them to do. No one is blogging about FMS, planning fibroLIFE© events, working on the next tool or book, etc. In fact, not a single one of my new partners are doing anything that would cause them to ever say, “Oh and I have been helping out with this organization called fibroLIFE©”.
My newest “partners-in-time” are people with extraordinary enthusiasm for and talents in other areas of LIFE that interest me. I have always loved history! When I moved here, I was shocked at how Vicksburg did not embrace its very important role in history. I have been on a soapbox from day one wanting to help change that. My new, non-fibro “partners-in-time” have enabled me to do just that!
I am not planning any fibroLIFE© events. I have halted all the fibroLIFE© projects I still believe in but cannot do on my own. I am not pursuing any of "the usual stuff". Intead I am LIVING by becoming involved in something in the non-fibro world. I tapped into something I have always LOVED, and I am sharing it with you, to SHOW you in stead of just telling you, that YOU CAN TOO!
Afterall, that has always been the fibroLIFE© way!
I am LIVING, minimizing the fibro, maximizing the LIFE!
I am LIVING in spite of FMS.
I am LIVING my fibroLIFE©
It is not remotely the way I had hoped for or thought it had to be.
Just between you and me, and anyone else who will listen, I believe this way is going to be even better!
No you can’t always get what you want.
No you can’t always get what you want.
But if you try sometimes
You just might find
You’ll get what you need!
~The Rolling Stones