Fibromyalgia is god's way of saying, your tougher than the rest and you can handle it.
Believe you can and you're halfway there.
Theodore Roosevelt
Change your thoughts and you change your world.
Norman Vincent Peale
“When one is in very great pain and fear, it is extremely difficult to pray coherently, and I could only raise my mind in anguish to God and ask for strength to hold on.” - Sheila Cassidy
“Pain was not given thee merely to be miserable under; learn from it, turn it to account.” - Thomas Carlyle
"If you can dream it, you can do it." Walt Disney
P= Perserverance, the tenacity you need to get through your illness!
A= Attitude, your attitude determines your altitude! Keep your thoughts positive.
I= Initiate, Initiate your future by keeping close to family and friends. Don't isolate.
N= NEVER, ever, give up or loose hope. Your breakthrough
101 Ideas to Empower Persons In Pain to Survive and Thrive!
101 Ideas to Empower Persons In Pain to Survive and Thrive!
As you all know, just getting through any day with persistent pain is a challenge.
These are easy-to-do, empowering tools and resources to help you better manage your pain, improve your care and, ultimately, enhance your quality of life.
Remember to have fun—and seize the day!
Self-Care
Relaxation/Meditation
1. Seek out things that make you laugh—remember, laughter is the best medicine!
2. Slow down—and breath deeply…
3. Use aromatherapy—relax to your favorite scents.
4. Meditate, with a group or by yourself.
5. Listen or make music (i.e., play a CD, sing or play an instrument.)
6. Get a massage by a professional masseuse – or someone you love…
7. Take a long bubble bath and light some candles.
8. Buy a bouquet of flowers to cheer up your surroundings!
9. Grow something—commune with Mother Nature!
10. Stir your imagination—imagine a pleasant experience, moment, sensation…
11. Make or craft something (i.e., knit a scarf, do pottery, build something, do woodworking, etc.)
12. Go to an outdoor concert, and don’t forget to pack a picnic.
13. Treat yourself to a manicure and/or pedicure. Be a Queen for a day!
14. Explore an antique store—lose yourself among the treasures…
Cognitive/Mental Strategies
15. Practice mindfulness—be in the moment…
16. Try art therapy (i.e., paint or draw a picture that shows how you feel!)
17. Use narrative therapy (i.e., write your pain experience.)
18. Keep a gratitude/affirmation log (write down three things you’re grateful for each day.)
19. When depression and/or anxiety hits, don’t fight it. Know it’s a part of the natural pain experience. But don’t hold on for too long…
20. Accept that everything you’re feeling is real and normal.
21. Take a class, learn something new—and stimulate your mind!
22. Wear a bright color—they excite the senses!
23. Reflect upon affirming, positive memories…
24. Read a great book—or a breezy romance novel.
25. Express your true and authentic self. You’re the only you!
26. Think positive, affirming things about yourself.
27. Take a trip, even if it’s a virtual one.
28. Seek support through a professional pain counselor.
29. Make a change and surprise yourself (i.e., get a new haircut, try a new recipe, etc.)
30. Get dressed up and put your make-up on, just because it makes you feel good!
31. Keep a positive attitude, hang in there and keep the faith!
32. Practice appreciation for your healthcare providers—more often than not, they’re trying their best to help…
33. On a bad day, remember what Scarlet O’Hara said, “Tomorrow is another day!”
34. Notice and appreciate the splendor season changes…
35. Learn a foreign language…or two! Exercise that part of the brain that doesn’t read pain signals.
36. Choose something you love, and do it every week, same day and time. A joyful routine gives you something sweet to look forward to…
37. Don’t let your pain define you. Remember that while pain is now a part of your life experience, it’s not your identity.
Care of the Body
38. Exercise regularly and keep your body moving. Hydrotherapy in warm water is especially effective with pain conditions.
39. Eat a healthy diet (fruits, vegetables, lean meats, etc.)
40. Avoid or quit smoking!
41. Practice good sleep habits—enjoy waking up refreshed and renewed.
42. Be open to alternative and complimentary therapies (i.e., acupuncture, guided imagery, etc.)
43. Have realistic expectations about therapies (i.e., have you given your physical therapy regimen enough time to help?)
44. Educate yourself about your pain condition. But don’t obsess and let it consume you…
45. Listen to your body talk—you know it better than anyone else!
46. Learn to say “no”—avoid stress by not over-burdening/committing yourself.
47. Spend time in the sun—and don’t forget that all-important sun block!
48. Practice good posture. A well-aligned and supported spine is virtually guaranteed to help any pain condition.
Relationships
49. Do something nice for someone—it feels good, and that energy is sure to come back your way.
50. Learn to forgive those who have disappointed you throughout your pain experience; anger is further fuel for pain!
51. Adopt a pet. Unconditional love is good for the soul…
52. Give someone a hug—who knows, you might just get two back!
53. Volunteer for your favorite charity, school or organization. Doing good is chicken soup for the soul!
54. Throw yourself a party. Celebrate an accomplishment with family and friends!
55. Get involved in your community (i.e., attend neighborhood council meetings, help plan a block party, etc.)
56. Seek out fellow chronic pain sufferers through on-line discussion boards and support groups at medical centers. These bonds could last a lifetime.
57. Don’t forget about lovemaking with your partner. Intimacy is second to none to revive the soul and senses!
58. Spend quality time with a child or children (yours, nieces or nephews, etc.)—they’ll help you see the world with eyes of wonder!
59. Have an afternoon tea with some girlfriends.
60. Accept an invitation to a party or other social event, even if you’re in pain. It’s great misdirection—and you’ll probably find yourself having a dandy time!
61. Be open to talking to family and friends about your pain experience—and answering their naturally inquisitive questions. If they’re curious, they probably care. Try not to shut them out…
62. Remove toxic people from your life—as stress and strain that comes from bad relationships makes pain worse. It’s appropriate to walk away from inappropriate people!
Assertiveness
63. Remember it’s your body—and ultimately all possible treatment options are your choice.
64. Be prepared for your doctor visits (i.e., have questions ready, be educated about your pain condition(s), etc.)
65. Partner with your doctor. You’ll get better pain care results if you work as a team.
Find a good advocate at your health insurance company.
66. Bring a family member or friend with you when you go to a doctor’s appointment. They can advocate for you—and it’s good for your doctor to know someone cares and is watching out for you.
67. Examine and weigh your therapy options—the biggest “guns” may not be the answer for you.
68. Don’t let your doctor pressure you into a therapy that you don’t want to do!
69. Interview your pain management provider (i.e., What kind of therapies do you support for my condition?, Are you open to alternative/complimentary therapies?, etc.)
70. Remember, one size doesn’t fit all when it comes to pain treatments. We’re all unique—and what helps one person may not help another.
71. Seek out references with any doctor referral (i.e., talk to other patients, look up his/her standing with the state medical board, etc.)
72. Make sure your treating healthcare professional is assessing your pain level during each visit—remember, pain assessment is “the fifth vital sign.”
73. Find out if your hospital and/or clinic has a “Patient’s Bill of Rights”—and if so, make sure your treating healthcare professionals are following it.
74. Learn about the potential side effects of any and all medications you are considering or presently taking. Sometimes their adverse side effects can create more harm than the problem you’re taking the medication(s) for.
75. Run—don’t walk!—from any physician or other healthcare professional who doubts, dismisses and/or discounts your report of pain!
76. Encourage your family and friends to educate themselves about your pain condition(s) (i.e., provide them with website resources, articles, etc.)
77. Educate yourself about all of your therapy/treatment options (including complimentary and alternative choices)—this will enable you to make the best, most informed decisions about your pain management care.
Clinical Advice
78. Using a rating scale such as 0 to10 (0 = no pain, 10 = worst pain) is a useful way to communicate your pain to others and assess changes in your own pain.
79. Use the rating scale to rate how much relief you are receiving. For example, if your pain therapy relieves your pain from a “10” to a “7”, this is a good step. But knowing your pain is a “7” should suggest that you still require additional help.
80. Prevention of pain is key. Anticipate things that bring your pain on (exhaustion, dehydration, stress, etc.) and make every attempt to prevent pain versus responding only when it happens.
81. When taking pain medication, always consider what non-drug treatment you could use along with it. Using heat/cold/massage/relaxation can diminish anxiety and distract you from the pain until the medication can begin working.
82. Discover accurate and effective words to describe your pain (i.e., burning, stabbing, aching, pins and needles, electrical, throbbing, etc.) to help your healthcare provider with diagnosis and treatment.
83. For chronic pain problems, it is generally better to take medications on a regular, around-the-clock schedule rather than only on a “prn”/as needed basis only when pain is severe.
84. Fortunately, there are many choices of analgesics (be it traditional, complementary or alternative)—so if a particular pain therapy that has been prescribed doesn’t work or causes side-effects, ask to try another.
85. In general for chronic pain, long-lasting medications are preferred to offer several hours of undisturbed sleep or activity.
86. If your doctor prescribes physical therapy, be sure to find a therapist you have a repore with. Explain your symptoms carefully, and go over your doctor’s report together. Also be sure to immediately alert your therapist to any pain you’re experiencing as a result of a therapy exercise.
87. “Breakthrough pain” is pain that occurs in episodes between doses of medications. Discuss this with your physician to determine if breakthrough medications are needed.
88. Inactivity or decreased function is a major problem in chronic pain and results in muscle weakness, dependence, depression—and this cycle only worsens over time. Try to maintain activity if at all possible.
89. Depression and anxiety are generally an integral part of the pain experience—and can become severe. Don’t hesitate to tell your pain management provider about these feelings and indeed ask for a referral for a support group and/or psychologist. Your doctor should know psychologists who specialize in pain.
Web-based Resources
90. Check out The Intractable Pain Patient’s Handbook for Survival by Dr. Forrest Tennent. Download a copy here: http://pain-topics.org/pdf/IntractablePainSurvival.pdf
91. Here’s a wonderful resource to help the people who care about you. Surviving a Loved One’s Chronic Pain by David Kannerstein, PhD and Sarah M. Whitman, MD. Download a copy [http://www.ppmjournal.com/PDFs/PPM_J...annerstein.pdf
92. Here’s a great, up-to-date resource about pain medications! American Chronic Pain Association’s 2007 Medication & Chronic Pain Supplement. Download a copy http://www.theacpa.org/documents/ACPA%20Me...007%20Final.pdf
93. Get educated and informed about your pain condition(s)! Pain Information Library sponsored by the American Pain Foundation.http://www.painfoundation.org/page.asp?fil...brary/Index.htm
94. Go to the American Chronic Pain Association’s website and read their “Ten Steps from Patient to Person” http://www.theacpa.org/pf_02_04.asp
95. Review For Grace’s “Women In Pain Bill of Rights” to get a better understanding of what you should expect in your patient/doctor relationship.
96. Go the National Pain Foundation’s “My Journey” section and find links to patient support groups throughout the US:
http://www.nationalpainfoundation.org/MySu...nkDirectory.asp
97. Go to PainTopics.org’s website and find an excellent section on pain patient resources, tools and information: http://pain-topics.org/patient_resou...2.php#chronic1
98. Download a notebook from the American Pain Foundation to journal your pain experience: http://www.painfoundation.org/Publications/Notebook.pdf
99. Visit Pain.com and see their full array of consumer support tools and forms: http://www.pain.com/sections/consumers/pai...ort/pain_tools/
100.Become a member of American Pain Foundation’s thriving on-line PainAid community. Take the first step http://painaid.painfoundation.org/
101.Power Over Pain is a grassroots movement that encourages those in pain to become advocates in their own communities. Join the charge to put pain on the map as a major health issue: http://www.painfoundation.org/poweroverpai...ile=network.htm
These are easy-to-do, empowering tools and resources to help you better manage your pain, improve your care and, ultimately, enhance your quality of life.
Remember to have fun—and seize the day!
Self-Care
Relaxation/Meditation
1. Seek out things that make you laugh—remember, laughter is the best medicine!
2. Slow down—and breath deeply…
3. Use aromatherapy—relax to your favorite scents.
4. Meditate, with a group or by yourself.
5. Listen or make music (i.e., play a CD, sing or play an instrument.)
6. Get a massage by a professional masseuse – or someone you love…
7. Take a long bubble bath and light some candles.
8. Buy a bouquet of flowers to cheer up your surroundings!
9. Grow something—commune with Mother Nature!
10. Stir your imagination—imagine a pleasant experience, moment, sensation…
11. Make or craft something (i.e., knit a scarf, do pottery, build something, do woodworking, etc.)
12. Go to an outdoor concert, and don’t forget to pack a picnic.
13. Treat yourself to a manicure and/or pedicure. Be a Queen for a day!
14. Explore an antique store—lose yourself among the treasures…
Cognitive/Mental Strategies
15. Practice mindfulness—be in the moment…
16. Try art therapy (i.e., paint or draw a picture that shows how you feel!)
17. Use narrative therapy (i.e., write your pain experience.)
18. Keep a gratitude/affirmation log (write down three things you’re grateful for each day.)
19. When depression and/or anxiety hits, don’t fight it. Know it’s a part of the natural pain experience. But don’t hold on for too long…
20. Accept that everything you’re feeling is real and normal.
21. Take a class, learn something new—and stimulate your mind!
22. Wear a bright color—they excite the senses!
23. Reflect upon affirming, positive memories…
24. Read a great book—or a breezy romance novel.
25. Express your true and authentic self. You’re the only you!
26. Think positive, affirming things about yourself.
27. Take a trip, even if it’s a virtual one.
28. Seek support through a professional pain counselor.
29. Make a change and surprise yourself (i.e., get a new haircut, try a new recipe, etc.)
30. Get dressed up and put your make-up on, just because it makes you feel good!
31. Keep a positive attitude, hang in there and keep the faith!
32. Practice appreciation for your healthcare providers—more often than not, they’re trying their best to help…
33. On a bad day, remember what Scarlet O’Hara said, “Tomorrow is another day!”
34. Notice and appreciate the splendor season changes…
35. Learn a foreign language…or two! Exercise that part of the brain that doesn’t read pain signals.
36. Choose something you love, and do it every week, same day and time. A joyful routine gives you something sweet to look forward to…
37. Don’t let your pain define you. Remember that while pain is now a part of your life experience, it’s not your identity.
Care of the Body
38. Exercise regularly and keep your body moving. Hydrotherapy in warm water is especially effective with pain conditions.
39. Eat a healthy diet (fruits, vegetables, lean meats, etc.)
40. Avoid or quit smoking!
41. Practice good sleep habits—enjoy waking up refreshed and renewed.
42. Be open to alternative and complimentary therapies (i.e., acupuncture, guided imagery, etc.)
43. Have realistic expectations about therapies (i.e., have you given your physical therapy regimen enough time to help?)
44. Educate yourself about your pain condition. But don’t obsess and let it consume you…
45. Listen to your body talk—you know it better than anyone else!
46. Learn to say “no”—avoid stress by not over-burdening/committing yourself.
47. Spend time in the sun—and don’t forget that all-important sun block!
48. Practice good posture. A well-aligned and supported spine is virtually guaranteed to help any pain condition.
Relationships
49. Do something nice for someone—it feels good, and that energy is sure to come back your way.
50. Learn to forgive those who have disappointed you throughout your pain experience; anger is further fuel for pain!
51. Adopt a pet. Unconditional love is good for the soul…
52. Give someone a hug—who knows, you might just get two back!
53. Volunteer for your favorite charity, school or organization. Doing good is chicken soup for the soul!
54. Throw yourself a party. Celebrate an accomplishment with family and friends!
55. Get involved in your community (i.e., attend neighborhood council meetings, help plan a block party, etc.)
56. Seek out fellow chronic pain sufferers through on-line discussion boards and support groups at medical centers. These bonds could last a lifetime.
57. Don’t forget about lovemaking with your partner. Intimacy is second to none to revive the soul and senses!
58. Spend quality time with a child or children (yours, nieces or nephews, etc.)—they’ll help you see the world with eyes of wonder!
59. Have an afternoon tea with some girlfriends.
60. Accept an invitation to a party or other social event, even if you’re in pain. It’s great misdirection—and you’ll probably find yourself having a dandy time!
61. Be open to talking to family and friends about your pain experience—and answering their naturally inquisitive questions. If they’re curious, they probably care. Try not to shut them out…
62. Remove toxic people from your life—as stress and strain that comes from bad relationships makes pain worse. It’s appropriate to walk away from inappropriate people!
Assertiveness
63. Remember it’s your body—and ultimately all possible treatment options are your choice.
64. Be prepared for your doctor visits (i.e., have questions ready, be educated about your pain condition(s), etc.)
65. Partner with your doctor. You’ll get better pain care results if you work as a team.
Find a good advocate at your health insurance company.
66. Bring a family member or friend with you when you go to a doctor’s appointment. They can advocate for you—and it’s good for your doctor to know someone cares and is watching out for you.
67. Examine and weigh your therapy options—the biggest “guns” may not be the answer for you.
68. Don’t let your doctor pressure you into a therapy that you don’t want to do!
69. Interview your pain management provider (i.e., What kind of therapies do you support for my condition?, Are you open to alternative/complimentary therapies?, etc.)
70. Remember, one size doesn’t fit all when it comes to pain treatments. We’re all unique—and what helps one person may not help another.
71. Seek out references with any doctor referral (i.e., talk to other patients, look up his/her standing with the state medical board, etc.)
72. Make sure your treating healthcare professional is assessing your pain level during each visit—remember, pain assessment is “the fifth vital sign.”
73. Find out if your hospital and/or clinic has a “Patient’s Bill of Rights”—and if so, make sure your treating healthcare professionals are following it.
74. Learn about the potential side effects of any and all medications you are considering or presently taking. Sometimes their adverse side effects can create more harm than the problem you’re taking the medication(s) for.
75. Run—don’t walk!—from any physician or other healthcare professional who doubts, dismisses and/or discounts your report of pain!
76. Encourage your family and friends to educate themselves about your pain condition(s) (i.e., provide them with website resources, articles, etc.)
77. Educate yourself about all of your therapy/treatment options (including complimentary and alternative choices)—this will enable you to make the best, most informed decisions about your pain management care.
Clinical Advice
78. Using a rating scale such as 0 to10 (0 = no pain, 10 = worst pain) is a useful way to communicate your pain to others and assess changes in your own pain.
79. Use the rating scale to rate how much relief you are receiving. For example, if your pain therapy relieves your pain from a “10” to a “7”, this is a good step. But knowing your pain is a “7” should suggest that you still require additional help.
80. Prevention of pain is key. Anticipate things that bring your pain on (exhaustion, dehydration, stress, etc.) and make every attempt to prevent pain versus responding only when it happens.
81. When taking pain medication, always consider what non-drug treatment you could use along with it. Using heat/cold/massage/relaxation can diminish anxiety and distract you from the pain until the medication can begin working.
82. Discover accurate and effective words to describe your pain (i.e., burning, stabbing, aching, pins and needles, electrical, throbbing, etc.) to help your healthcare provider with diagnosis and treatment.
83. For chronic pain problems, it is generally better to take medications on a regular, around-the-clock schedule rather than only on a “prn”/as needed basis only when pain is severe.
84. Fortunately, there are many choices of analgesics (be it traditional, complementary or alternative)—so if a particular pain therapy that has been prescribed doesn’t work or causes side-effects, ask to try another.
85. In general for chronic pain, long-lasting medications are preferred to offer several hours of undisturbed sleep or activity.
86. If your doctor prescribes physical therapy, be sure to find a therapist you have a repore with. Explain your symptoms carefully, and go over your doctor’s report together. Also be sure to immediately alert your therapist to any pain you’re experiencing as a result of a therapy exercise.
87. “Breakthrough pain” is pain that occurs in episodes between doses of medications. Discuss this with your physician to determine if breakthrough medications are needed.
88. Inactivity or decreased function is a major problem in chronic pain and results in muscle weakness, dependence, depression—and this cycle only worsens over time. Try to maintain activity if at all possible.
89. Depression and anxiety are generally an integral part of the pain experience—and can become severe. Don’t hesitate to tell your pain management provider about these feelings and indeed ask for a referral for a support group and/or psychologist. Your doctor should know psychologists who specialize in pain.
Web-based Resources
90. Check out The Intractable Pain Patient’s Handbook for Survival by Dr. Forrest Tennent. Download a copy here: http://pain-topics.org/pdf/IntractablePainSurvival.pdf
91. Here’s a wonderful resource to help the people who care about you. Surviving a Loved One’s Chronic Pain by David Kannerstein, PhD and Sarah M. Whitman, MD. Download a copy [http://www.ppmjournal.com/PDFs/PPM_J...annerstein.pdf
92. Here’s a great, up-to-date resource about pain medications! American Chronic Pain Association’s 2007 Medication & Chronic Pain Supplement. Download a copy http://www.theacpa.org/documents/ACPA%20Me...007%20Final.pdf
93. Get educated and informed about your pain condition(s)! Pain Information Library sponsored by the American Pain Foundation.http://www.painfoundation.org/page.asp?fil...brary/Index.htm
94. Go to the American Chronic Pain Association’s website and read their “Ten Steps from Patient to Person” http://www.theacpa.org/pf_02_04.asp
95. Review For Grace’s “Women In Pain Bill of Rights” to get a better understanding of what you should expect in your patient/doctor relationship.
96. Go the National Pain Foundation’s “My Journey” section and find links to patient support groups throughout the US:
http://www.nationalpainfoundation.org/MySu...nkDirectory.asp
97. Go to PainTopics.org’s website and find an excellent section on pain patient resources, tools and information: http://pain-topics.org/patient_resou...2.php#chronic1
98. Download a notebook from the American Pain Foundation to journal your pain experience: http://www.painfoundation.org/Publications/Notebook.pdf
99. Visit Pain.com and see their full array of consumer support tools and forms: http://www.pain.com/sections/consumers/pai...ort/pain_tools/
100.Become a member of American Pain Foundation’s thriving on-line PainAid community. Take the first step http://painaid.painfoundation.org/
101.Power Over Pain is a grassroots movement that encourages those in pain to become advocates in their own communities. Join the charge to put pain on the map as a major health issue: http://www.painfoundation.org/poweroverpai...ile=network.htm
The Spoon Theory
This is an excellent tool and very inspirational to me in my life. My husband and I use this on a regular basis so I don't have to say I feel like sh*t all the time. Instead I can say I don't have enough spoons. Please read at the link below. This is about Lupus, but relates to ANY chronic pain. Hope you find this as helpful as we do.
by Christine Miserandino www.butyoudontlooksick.com/the_spoon_theory
Marriage and Fibro DO Mix!
Throughout my life, I have always suffered inexplicable aches and pains. By age I was raising three children all under the age of 5 and had gone through two abusive marriages and subsequently two stressful divorces. During that time doctors attributed my pain and lack of sleep as merely the common "stresses of parenthood." I was routinely prescribed Prozac and Valium and hastily shoved toward the exam room exit.
By the time my 30s rolled around, things really began to heat up. I had long since been re-married for a third time and after an eight-year struggle to get pregnant, finally gave birth to my fourth child. The pregnancy was fairly uneventful, but following the birth I was plagued with serious bleeding, hair loss, and menopausal-like symptoms brought on by nursing. I did not sleep through the night for literally months on end, and my back and shoulders hurt so bad that I could barely carry my baby. I began experiencing Irritable Bowel Syndrome, dizziness, mental fog, numbing in the hands and feet, severe anxiety and depression, and the constant drug-like stupor of the chronically fatigued. Every little thing that touched my body seemed to batter and torment me, from the clothing rubbing against my skin to the shoelaces that caused agony to the tops of my feet. I tried "going for walks" as the health care people had suggested and although my husband was always willing to accompany me, he became increasingly annoyed at my constant complaining and the fact that I could not walk more than a quarter of mile before stopping to re-adjust my shoelaces. Even when I showed him the bruises on the tops of my feet and the blisters that never seemed to heal, he dismissed it as me merely "bruising easily."
During those years most doctors simply saw me a hypochondriac, and although he will deny it, I know my own husband even began to see me in that light. How could he not? On the outside I looked perfectly fine, and if the doctors said nothing was wrong, then it had to be "in my head," right? Most health care providers were not even beginning to understand, acknowledge and much less diagnose fibro back in those days, so it was completely understandable why my husband was so perplexed, distant and annoyed with my never-ending mental and physical troubles. It must have been very painful for him to mourn the "loss" of the woman he had married.
Needless to say, I had become an absolute mess. I was barely functional and by 35 suicidal. I had also gained an obscene amount of weight as the result of the trauma, depression and anxiety that I had been subjected to in my earlier years. I was finally diagnosed with fibromyalgia when I was about 37, and even though there was now a name to go with my long list of symptoms, it was a name that neither my husband nor I were familiar with, and we both struggled to accept and understand what was happening with my mind and body.
Now that I was finally being taken seriously by the health care system, I was prescribed several medications to treat the anxiety, depression, pain and sleeplessness. After a lot of trial and error and constant adjustment with combinations, doses, and medications, and the momentous arrival of my horse Avalon, I began to see some light at the end of the tunnel. My husband, however, was still struggling with the whole "fibro" thing. Although he never complained about my weight gain, or the fact that the house was no longer spotless or that I seldom put on makeup or did my hair anymore, he did have a very difficult time with the sad reality that I was no longer physically able to do a lot of the things that we had once enjoyed together.
However, with the arrival of my horse and the resulting increase in activity, I was able to lose quite a bit of weight and developed enough physical strength to go trail riding, and my husband and I were finally able to start a new and very enjoyable chapter in our lives. Unfortunately, I also developed a remarkably stubborn ability to simply ignore the pain in my body. I practiced mediation, yoga, visualization, and anything I could teach myself in order to learn to push the threshold of my limits higher and higher. If the pain reached unbearable levels, I would finally concede and take a small dose of narcotic pain medication. This usually dulled the pain enough for me to go right back to pushing myself even harder I felt that as long as I pushed and pushed and simply did not stop, my momentum would keep me from falling down. As admirable and useful as my tactics may have seemed, there came a point where they not only failed to serve me, but caused me great injury as well.
Shortly after a fall about three years ago, I started experiencing pain in my left ankle, especially when riding. At first it was easily evicted from my mind during activities and work, but it grew increasingly persistent and I found that it took more and more mental discipline to get through my daily chores and riding. After about two years of dealing with the pain, I got to the point that after only 15 minutes or so of riding, I would be dripping with sweat and sick to my stomach. After all the trouble of loading the horses, packing lunch and driving to the park, we would have to turn back after only a short time, and this infuriated my husband most of all. We began to have serious arguments over small and insignificant things, but they were only symptoms of a much larger issue that was not being acknowledged.
I believe the turning point came for my husband when, during pre-op for surgery to reconstruct the tendon in my left elbow (the right arm had been re-built a year earlier; I had torn it lifting an 80lb brick), I asked the surgeon to put some cortisone into my left ankle. Of course he said no, he would have to do an MRI to see what was wrong. At my six-week checkup after the elbow surgery, he informed me that I had a torn tendon in my left ankle. I asked him if this injury could cause severe pain and he stated that it "most definitely could be extremely painful." My husband was very quiet and did not say much on the way home, but from that point on I honestly believe the reality of the situation came crashing down on him and he finally realized that I was not just whining; rather I was actually minimizing to a great degree the daily pain I had to endure just to pretend to him that everything was "normal." I continued to ride and hike on the injured ankle, even doing a 5-mile hike with friends and family, but my husband no longer complained when I needed to turn back to the trailer on our trail rides. He finally got it!
Last October I finally had surgery on the ankle, and my surgeon had to work for over two hours to fix the tendon; it was so badly mangled and torn. I also developed a blood clot in my calf after the surgery, which broke off and went to my right lower lung, resulting in a pulmonary embolism. I was hospitalized for five days and am still, to this day, on blood thinning medication. My rather unceremonious brush with almost kicking the bucket really had an impact on the poor man I married. He took off from work for almost five weeks, catering to me the entire time. Since my elbows were not working well and it was very difficult to push myself all over the house with the wheelchair the hospital gave me, he purchased a very useful and fast little power scooter for me to get around on. He never said a word as I ran into corner after corner, chipping the walls off, but he finally did say something when I crashed into our bedroom door and ripped it off the hinges. I always have and always will have my controls set on "fast!"
My ankle surgeon also explained to both of us why I always had so much pain in the top part of my feet; I have unusually high insteps and a protruding bone on the top part of my foot. Even though he said nothing at the time, I know my husband's thoughts immediately went back to the years of his impatience with my constant foot issues, and I also know that he felt truly remorseful for his lack of patience and consideration. When we finally found a brand of Western boot that fit my feet without pain, he purchased my first pair as an anniversary gift, and proceeded to buy me eight more pairs, all in different colors and styles. Even the company sent me a free pair ($140 value!) when I wrote them, thanking them for such a fine product.
After over 20 years, my husband and I have finally learned the close and intricate steps that are a requirement for a unique partnership such as ours. Like two ballroom dancers, we dip and spin within the circles of our own little world, each giving at just the right time and taking at just the right time. When one stumbles, the other quickly moves to compensate for the fumbling steps, and so we have learned that together we can avoid a lot more falls than either of us alone could. Neither gives 50 percent at all times, but whenever one can only give 20 percent, the other kicks in with 80, and so it all evens out at the end. We give and we take. We respect each other's weaknesses, and support each other's strengths. Both of us have made great strides on the paths that have been set before us, and I am very proud of how we are now able to truly call ourselves a team.
However, things were not always as they are today, and it took both of us a long time and a lot of effort to come to grips with the cards we had both been dealt. We endured many bumps along the way, and although everything will never be smooth sailing for a couple with the challenges that we face, we have developed strategies for keeping fibromyagia from robbing us of the time we have together and the love that we share.
While no one thing will work for everyone, following are some of the issues that I have personally learned are important to focus on when it comes to my attitude towards both my condition and my spouse:
- Educate. Educate. And then educate some more . Both you and your significant other need to fully comprehend the complexity of fibromyalgia. Attend classes, lectures and seminars, and support groups for both parties. Buy books and share them with each other. Print out articles from reputable sources, such as the National Fibromyalgia Association. Work together to lean about this condition, and what can be done to ease the symptoms.
- Understand that your spouse or partner cannot possibly truly comprehend the pain and suffering you must endure on a daily basis . They simply can't, and if you expect them to, it will lead to resentment, disappointment and strife. Even though you may be on the same road, you are not both in the same shoes. However, this does not mean that your partner cannot educate him/herself about your condition and empathize with your problems.
- Resist the temptation to convince yourself that nobody can ever be in as much pain as you are. Most people with fibro have learned to deal with pain and other symptoms on a daily basis, and sad as it may seem, we do become somewhat "used" to it. Your partner, however, probably does not feel ill every day, and therefore when he/she is sick, he/ she feels every bit as miserable as you do during a flare. Try to encourage your partner to be sympathetic to your misery by treating them, when they are sick, exactly like you would like to be treated - no matter how minor their illness or problems may seem to you. Grit your teeth if you have to, but don't trivialize their problems if you ever expect them to empathize with yours.
- Realize that intimacy is crucial for any relationship to flourish . There will certainly be days that the last thing you have on your mind is satisfying the intimate needs of your partner, but keep in mind that intimacy can take many forms other than sex. Cuddling, having a cup of coffee or tea together while snuggling under a blanket and watching a movie, going on a dinner date, writing a naughty email to your partner and having an online "affair" with him/her... there are dozens of creative ways that will bring and keep you both close. And keep in mind that there are times that your partner will want sex, and if you are possibly able to accommodate him or her, it will go a long way towards warding off the resentment and loneliness that so often break couples apart when they face chronic pain or illness. All human beings are innately sexual creatures, and to deny your partner this aspect of a healthy relationship each and every time you have an ache or pain may sow such ugly seeds of discord that the relationship may not be able to recover. Let your partner know that he or she is loved, and do the best you can to show it, however you are able.
- Learn to put yourself into "time-out" when you are feeling very (justifiably) irritable to avoid taking your problems out on your partner. This may sound childish, and you certainly have a right and even an obligation to let your partner know when you are unwell, but sometimes we are so miserable that we simply need to go somewhere to quiet our minds and calm down. When I am so miserable that I know I should not be around any person, much less the one I love most, I tell my husband that I realize I am grumpy and that it's not his fault. I tell him that I need to be left alone for a while to compose myself so I don't wind up taking it out on him. I usually go and cry or complain to my horse, and while she does not always say much, she sure is a good listener and enjoys my company no matter how rotten it may be. If you have a cherished pet then you already know how much comfort animals can be during times when humans simply cannot console you. Your significant other will appreciate knowing that they are not the cause of your crankiness and be grateful for yournot having it taken out on them.
- Learn pain control techniques and use them regularly. Try to do at least some type of exercise on a daily basis to help keep your muscles toned and your pain levels in check. I fully realize that it can hurt very badly to move those muscles, but not moving them results in an even more vicious cycle of pain that will leave you lying on your couch or in your bed for weeks, months or years, and will leave your relationship in tatters.
- Find a passion! It does not have to be expensive or exhausting and can bring great comfort and happiness to your life, which will be passed on to your loved ones in the form of a happier, healthier you! Animals are nothing short of miraculous when it comes to bringing us comfort and contentment, but there are other hobbies out there. Volunteering only a few hours a week for a worthy cause, gardening, sewing, scrapbooking... there is no end to the list of activities that you can start participating in, and the great part is that you can control how much or little you are able to do. The important thing is that you simply do something , no matter what it is.
Each couple is unique, and each will have to figure out what works well for them as individuals as well as together. One thing is certain, however. With love, trust, compassion, commitment and a heck of a lot of teamwork, your relationship will acquire the strength it needs to get both of you through the challenges that life with fibro inevitably brings.
