Chronically ill people spend more time in their homes than healthy people. That makes it even more important that our home environment meets our health needs. At times having a healthy home is difficult to achieve because a limited income constricts our housing choices. There are ways to improve your environment no matter where you live.
One way to control your environment is by using cleaning products that are not toxic. http://www.care2.com/greenliving/5-simple-alternatives-to-toxic-cleaning-products.html Those with Environmental Illness are especially sensitive to chemicals and their health can be severely effected by exposure to cleaning chemicals. They are the canary birds of our current society warning us of the dangers of the proliferation of chemicals present in every day life. Like the canaries in the coal minds warning of gas in the tunnels these individuals show us the danger of chemical overload can present to our bodies.The following link is to the Environmental Resource Center and contains lots of information on the subject: http://www.ei-resource.org/ .
Another housing consideration is if your housing is accessible enough so you are able to function well in it. I live in a mobile home and it meets my needs well since it is all on one level. This has enabled to do my laundry without being exhausted by stairs. It has a small square footage which makes it easier to clean. I am able to live in a quiet environment which allows me to rest more thoroughly.
Is your home helping you to be more functional? If not are there simple solutions to make the home safer? Brighter lights for those with dimming eyesight might be as simple as a light bulb change. Taping down scatter rugs would make walking safer for someone no longer steady on their feet. Installing wall bars in the bathroom could keep a person independent in the bathroom.
Sometimes simple renovations or purchases can make a home more comfortable. Flooring could be changed to make it more walker or wheelchair friendly. A more accessible tub or shower could be installed. A chair that lifts could be bought to assist rising out of the sitting position.
It just takes a minute to sit down and think about your problems and how you can address them. Often an Occupational Therapist is a good person to give advice in this area. http://www.saot.ca/OT.htm
What do you do if your housing really is contributing to your health issues? You may have to consider moving. You may have come to the time when you require more care or a home without chemical problems in the air. Many local governments have housing for the disabled you may qualify for or assisted living facilities. The final decision will be yours. Will your home help your health or damage it?
Thursday, October 29, 2009
Saturday, October 17, 2009
Sleep the Great Health Restorer
I struggle with my sleep being fully restoring and constant fatigue is my major symptom of chronic illness. I have learned a few things that have helped me have a better quality of sleep. Adequate sleep is important for your immunity as well as many other body systems.
The most important issue that I uncovered was that I had sleep apnea. Being diagnosed and using a CPAP machine at night to help my breathing increased the quality of my sleep. The following link describes apnea and other sleep disorders and their symptoms. http://www.sleepeducation.com/Disorder.aspx?id=50 The next link describes a CPAP and how it is used. http://www.sleepeducation.com/CPAPCentral/ One advantage of the CPAP after you get used to the mask is the quiet sound of the machine acts like white noise to block out other sounds making it easier to fall asleep.
I started to use an eye mask to block light while I slept and ear plugs to block noise. I bought a memory foam bed topper to decrease pressure on aching joints and pressure points. Education on sleep hygiene helped me make some wise changes in my routines around sleep and the comfort of my bedroom. This link gives helpful advice on sleep hygiene and how it helps the quality of your sleep. http://www.sleepeducation.com/Hygiene.aspx
Shutting off my racing thoughts to allow me to have a restful sleep rather than a restless night remained a problem. Writing down a list of things to do the next day allows my mind to let go of those future tasks. Journalling to relieve emotional stress allows me to let those issues go overnight. Sometimes I need to use a relaxation CD to allow muscle tension to release before I can sleep.
Changing all my meds that have fatigue and tiredness as side effects to evening doses instead of taking them throughout the day was another step to a more restful sleep and to a decrease in fatigue during the day.
Allowing myself to return to bed on the morning that I awake severely fatigued has helped also. As well as resting lying flat at times through out the day so my fatigue doesnot become so overwhelming that I am so overtired that I cannot sleep.
The most important issue that I uncovered was that I had sleep apnea. Being diagnosed and using a CPAP machine at night to help my breathing increased the quality of my sleep. The following link describes apnea and other sleep disorders and their symptoms. http://www.sleepeducation.com/Disorder.aspx?id=50 The next link describes a CPAP and how it is used. http://www.sleepeducation.com/CPAPCentral/ One advantage of the CPAP after you get used to the mask is the quiet sound of the machine acts like white noise to block out other sounds making it easier to fall asleep.
I started to use an eye mask to block light while I slept and ear plugs to block noise. I bought a memory foam bed topper to decrease pressure on aching joints and pressure points. Education on sleep hygiene helped me make some wise changes in my routines around sleep and the comfort of my bedroom. This link gives helpful advice on sleep hygiene and how it helps the quality of your sleep. http://www.sleepeducation.com/Hygiene.aspx
Shutting off my racing thoughts to allow me to have a restful sleep rather than a restless night remained a problem. Writing down a list of things to do the next day allows my mind to let go of those future tasks. Journalling to relieve emotional stress allows me to let those issues go overnight. Sometimes I need to use a relaxation CD to allow muscle tension to release before I can sleep.
Changing all my meds that have fatigue and tiredness as side effects to evening doses instead of taking them throughout the day was another step to a more restful sleep and to a decrease in fatigue during the day.
Allowing myself to return to bed on the morning that I awake severely fatigued has helped also. As well as resting lying flat at times through out the day so my fatigue doesnot become so overwhelming that I am so overtired that I cannot sleep.
Friday, October 16, 2009
Counteracting a Winter of the Soul
I love living in a country that has very distinct seasons. Spring, Summer and Fall can be brief but beautiful and Winter can seem to linger cold and still for too long. Have you ever had a winter of the soul? A time when life is bleak and you are in mourning for a stage of your life that has past.
For me that winter was a long bout of mono on top of my other chronic illnesses. Months turned into years of overwhelming fatigue, crushing brain fog and a great sense of loss for the work I no longer can do. Both my children left the nest and I was no longer able to assist my disabled brother and aging mother. I was required for health reasons to move out alone into a small bachelors suite while I struggled to focus on regaining a measure of my own health.
How did I counteract the bleakness? I read my scriptures and focused on finding joy. I added small things to my life that gave me joy such as listening to music or having fresh flowers in a vase. I learned to listen to my body and rest as much as it needed and worked on overcoming my resentment when my health didn't allow me to do the things I desired to do. I accepted the unconditional love and acceptance of my pets. I started a joy journal where I recorded small things I was grateful for in the day such as the beauty of the stars in the winter sky. I looked for inspiration in the lives of great people such as Helen Keller and Mother Theresa.
I still struggle at times to see the colors, the beauty in everyday life but now I have an arsenal of joy starters to counteract the bleakness. Here is a joy starter to share with you. The following is a link to a motivational movie showing beautiful photos and inspirational quotes on how to find joy in your life. http://www.simpletruths.tv/land.html
For me that winter was a long bout of mono on top of my other chronic illnesses. Months turned into years of overwhelming fatigue, crushing brain fog and a great sense of loss for the work I no longer can do. Both my children left the nest and I was no longer able to assist my disabled brother and aging mother. I was required for health reasons to move out alone into a small bachelors suite while I struggled to focus on regaining a measure of my own health.
How did I counteract the bleakness? I read my scriptures and focused on finding joy. I added small things to my life that gave me joy such as listening to music or having fresh flowers in a vase. I learned to listen to my body and rest as much as it needed and worked on overcoming my resentment when my health didn't allow me to do the things I desired to do. I accepted the unconditional love and acceptance of my pets. I started a joy journal where I recorded small things I was grateful for in the day such as the beauty of the stars in the winter sky. I looked for inspiration in the lives of great people such as Helen Keller and Mother Theresa.
I still struggle at times to see the colors, the beauty in everyday life but now I have an arsenal of joy starters to counteract the bleakness. Here is a joy starter to share with you. The following is a link to a motivational movie showing beautiful photos and inspirational quotes on how to find joy in your life. http://www.simpletruths.tv/land.html
Saturday, October 10, 2009
Thanksgiving
Giving Thanks
For the hay and the corn and the wheat that is reaped,
For the labor well done, and the barns that are heaped,
For the sun and the dew and the sweet honeycomb,
For the rose and the song and the harvest brought home --
Thanksgiving! Thanksgiving!
For the trade and the skill and the wealth in our land,
For the cunning and strength of the workingman's hand,
For the good that our artists and poets have taught,
For the friendship that hope and affection have brought --
Thanksgiving! Thanksgiving!
For the homes that with purest affection are blest,
For the season of plenty and well-deserved rest,
For our country extending from sea unto sea;
The land that is known as the "Land of the Free" --
Thanksgiving! Thanksgiving!
Author Unknown
For the hay and the corn and the wheat that is reaped,
For the labor well done, and the barns that are heaped,
For the sun and the dew and the sweet honeycomb,
For the rose and the song and the harvest brought home --
Thanksgiving! Thanksgiving!
For the trade and the skill and the wealth in our land,
For the cunning and strength of the workingman's hand,
For the good that our artists and poets have taught,
For the friendship that hope and affection have brought --
Thanksgiving! Thanksgiving!
For the homes that with purest affection are blest,
For the season of plenty and well-deserved rest,
For our country extending from sea unto sea;
The land that is known as the "Land of the Free" --
Thanksgiving! Thanksgiving!
Author Unknown
Monday, October 5, 2009
Laughter Yoga
I was at a TOPS rally on Saturday. The key note speaker was a Laughter Yoga Instructor who also clowns. She lead us through laughter and yoga breathing exercises. There were no jokes, we learned to laugh on cue. Our bodies don't recognize the difference between genuine laughter and staged laughter. It was a little awkward as we began to laugh but soon the laughter was genuine and it was difficult to turn it off on command. Over 100 people were laughing heartily and it was contagious. What a joyous break in the day. I was wonderfully relaxed and my mood elevated after the exercises.
I have heard laughter described as "jogging for the soul". Indeed there are many health benefits to laughter including a healthier immune system. There are over 6000 Laughter Yoga Clubs around the world. The following link includes videos of laughter yoga. Check it out and see if you could benefit from some laughter in your life.
http://www.followthelaughter.com/Laughpic.htm
I have heard laughter described as "jogging for the soul". Indeed there are many health benefits to laughter including a healthier immune system. There are over 6000 Laughter Yoga Clubs around the world. The following link includes videos of laughter yoga. Check it out and see if you could benefit from some laughter in your life.
http://www.followthelaughter.com/Laughpic.htm
Tuesday, September 29, 2009
Finding Joy
How do you find joy while coping with a chronic illness? One way is to study and learn about finding joy. The following link contains a blog talk radio recording of Maureen Pratt discussing Finding a Heart of Gratitude and Joy Despite Illness. http://www.blogtalkradio.com/invisibleillnessconf/2009/09/15/Finding-a-Heart-of-Gratitude-and-Joy-Despite-Illness-with-Maureen-Pratt
Diane Keller who lives with FM and Chronic Fatigue, has a wonderfully uplifting and informative site. I have enclosed a link to her page on Joy where she discusses making an extensive list of things that bring us joy and deliberately adding more of those things to our daily life. These joyful things can be as simple as a hot chocolate on a cold day or stroking a purring kitten's fur. http://dianekerner.com/joy.html
"What we have once enjoyed we can never lose. All that we love deeply becomes part of us." Helen Keller
Diane Keller who lives with FM and Chronic Fatigue, has a wonderfully uplifting and informative site. I have enclosed a link to her page on Joy where she discusses making an extensive list of things that bring us joy and deliberately adding more of those things to our daily life. These joyful things can be as simple as a hot chocolate on a cold day or stroking a purring kitten's fur. http://dianekerner.com/joy.html
"What we have once enjoyed we can never lose. All that we love deeply becomes part of us." Helen Keller
Saturday, September 26, 2009
Accessible Exercise
Exercise is essential for muscle tone and strength as well as flexibility. Below I have described two accessible forms of exercise along with links to further information.
A relaxation exercise related to Tai Chi is Qui Gong or seated relaxation or meditation exercises. This form of exercise is performed from a seated position and involves slow, purposeful movements. It is a very accessible form of exercise. It is very peaceful and surprisingly effective as an exercise because of the gradualness of movement. Click on the following link for a demonstration video. http://www.altmd.com/Videos/Sitting-Qui-Gong-Lesson
Another form of seated exercise is called Sit and Be Fit. It is a television program that is broadcast on PBS stations. From a seated position on a chair exercises are performed for stretching, strength, and cardio. The following link describes the exercise program and contains a link to broadcast schedules so you can find it on your local PBS station. http://www.sitandbefit.org/
A relaxation exercise related to Tai Chi is Qui Gong or seated relaxation or meditation exercises. This form of exercise is performed from a seated position and involves slow, purposeful movements. It is a very accessible form of exercise. It is very peaceful and surprisingly effective as an exercise because of the gradualness of movement. Click on the following link for a demonstration video. http://www.altmd.com/Videos/Sitting-Qui-Gong-Lesson
Another form of seated exercise is called Sit and Be Fit. It is a television program that is broadcast on PBS stations. From a seated position on a chair exercises are performed for stretching, strength, and cardio. The following link describes the exercise program and contains a link to broadcast schedules so you can find it on your local PBS station. http://www.sitandbefit.org/
Friday, September 25, 2009
Pacing Yourself
Pacing myself is one of the self care skills I still resist. Life is much smoother when I do it but part of me grabs a day with a little extra energy and wrings out all the tasks possible leaving me totally exhausted.
Yesterday we hit a weather record set at 34 C. My poor dogs were sweltering in their heavy coats. So I set up the table inside under a ceiling fan and trimmed up Cassie the older more cooperative dog. She allowed all the work except her legs and I scissored the worst mats off them. I was wringing in sweat and quite exhausted. I sat and had a drink of water. Then instead of laying down for a nap I caught Ozzie to start his haircut.
He quite enjoyed feeling the cooler air on his trimmed back. Then he begin to wiggle and squirm and resist the trimmer. I lost my patience and shouted at him to stay still and he jumped off the table looking ridiculous with a partial cut. In stead of resting then I caught him and tried to trim his ears and face with him resisting and me short on patience. Finally I gave up and let both dogs outside even though Ozzie needed his legs done and his stomach.
I was frustrated. There was hair everywhere and Ozzie wasn't anywhere near finished. I stripped out of the hair covered clothing and slipped on clean cool clothing. I finally laid down to rest and decided to leave the mess until later in case I could finish Ozzie's cut. Several hours of rest later I brought Oz back to the table and finished one leg and let him run around while I rested. I repeated this until all four legs were completed. Then I turned both dogs outside.
I looked around to the mess of hair. I felt overwhelmed and discouraged. I rested while I watched a show then I got up and gathered the fur and vacuumed up the worst of the mess during commercials and laying down during the show. I was totally exhausted, hot and grumpy.
If I had just quit for the day after Cassie and tackled Ozzie another day I wouldn't be paying for yesterday's efforts today with aches and pains, exhaustion and the need to return to bed and sleep the morning away. Hindsight is 20/20. Hopefully next time I have an opportunity to pace myself I'll be able to focus on my health needs and not just the task at hand.
Here is a good article on the skill of pacing yourself: http://home.flash.net/~brucepa/Key3.htm
Yesterday we hit a weather record set at 34 C. My poor dogs were sweltering in their heavy coats. So I set up the table inside under a ceiling fan and trimmed up Cassie the older more cooperative dog. She allowed all the work except her legs and I scissored the worst mats off them. I was wringing in sweat and quite exhausted. I sat and had a drink of water. Then instead of laying down for a nap I caught Ozzie to start his haircut.
He quite enjoyed feeling the cooler air on his trimmed back. Then he begin to wiggle and squirm and resist the trimmer. I lost my patience and shouted at him to stay still and he jumped off the table looking ridiculous with a partial cut. In stead of resting then I caught him and tried to trim his ears and face with him resisting and me short on patience. Finally I gave up and let both dogs outside even though Ozzie needed his legs done and his stomach.
I was frustrated. There was hair everywhere and Ozzie wasn't anywhere near finished. I stripped out of the hair covered clothing and slipped on clean cool clothing. I finally laid down to rest and decided to leave the mess until later in case I could finish Ozzie's cut. Several hours of rest later I brought Oz back to the table and finished one leg and let him run around while I rested. I repeated this until all four legs were completed. Then I turned both dogs outside.
I looked around to the mess of hair. I felt overwhelmed and discouraged. I rested while I watched a show then I got up and gathered the fur and vacuumed up the worst of the mess during commercials and laying down during the show. I was totally exhausted, hot and grumpy.
If I had just quit for the day after Cassie and tackled Ozzie another day I wouldn't be paying for yesterday's efforts today with aches and pains, exhaustion and the need to return to bed and sleep the morning away. Hindsight is 20/20. Hopefully next time I have an opportunity to pace myself I'll be able to focus on my health needs and not just the task at hand.
Here is a good article on the skill of pacing yourself: http://home.flash.net/~brucepa/Key3.htm
Thursday, September 24, 2009
Weighty Matters
Weight often becomes an issue for those who have a chronic illness. Either you're unable to keep on the weight because of loss of appetite or health reasons or you gain weight because of medication, poor diet or lack of exercise.
My issue is the latter. I find myself struggling with my weight for a number of reasons. I attend TOPS for the benefit of a weekly weigh in and the reinforcement of a group working toward the same goal of a healthy weight. I have found it the least expensive of the weight loss programs offered with the benefits of weigh in,lessons and group interaction. http://www.tops.org/default.aspx
A few days ago a friend who was recently diagnosed with Type 2 Diabetes called me. http://www.diabetes.ca/about-diabetes/Wanting to spare me the health issue she is now facing, she urged me to walk daily if only for 10 minutes. She told me to walk for 5 minutes and turn around and walk home. Gradually I should add a second walk when I am able. A few minutes a day will help me stay mobile and work on retaining my muscle mass.
She also shared her new diet which is heavy on the less starchy vegetables and light on the refined carbs. Already she is seeing weight loss while eating healthier. She is journalling her food intake and is finding that to be a big help in keeping to the diet she is now on.
My goal of a healthier weight and body is an ongoing one. I take inspiration from friends and TOPS members who are on the same journey.
My issue is the latter. I find myself struggling with my weight for a number of reasons. I attend TOPS for the benefit of a weekly weigh in and the reinforcement of a group working toward the same goal of a healthy weight. I have found it the least expensive of the weight loss programs offered with the benefits of weigh in,lessons and group interaction. http://www.tops.org/default.aspx
A few days ago a friend who was recently diagnosed with Type 2 Diabetes called me. http://www.diabetes.ca/about-diabetes/Wanting to spare me the health issue she is now facing, she urged me to walk daily if only for 10 minutes. She told me to walk for 5 minutes and turn around and walk home. Gradually I should add a second walk when I am able. A few minutes a day will help me stay mobile and work on retaining my muscle mass.
She also shared her new diet which is heavy on the less starchy vegetables and light on the refined carbs. Already she is seeing weight loss while eating healthier. She is journalling her food intake and is finding that to be a big help in keeping to the diet she is now on.
My goal of a healthier weight and body is an ongoing one. I take inspiration from friends and TOPS members who are on the same journey.
Wednesday, September 23, 2009
Chronic Illness and Mental Health
Many chronic illnesses have a mental health aspect to them. Health limitations and isolation can cause us to develop reactive depression or anxiety. Depression and anxiety can also be chronic illnesses in of themselves as are many other mental illnesses.
The stigma of mental illness is less now then in in the past. However, some cultures and older people tend to view depression or anxiety as a character fault rather than a legitimate health issue. Those views can cause people to delay or resist getting help. Unfortunately, people can live with debilitating mental health problems without getting commonly available assistance.
Medication can be a first step in stabilizing chemical imbalances in the brain. Counseling can help us to learn coping skills and to deal with underlying issues. Good life skills such as, a healthy diet, regular sleep, socializing and exercise can help our bodies to be healthier and allow our minds to recover.
Reaching out to access the available help can increase the quality of your life. http://www.cmha.ca/bins/index.asp
The stigma of mental illness is less now then in in the past. However, some cultures and older people tend to view depression or anxiety as a character fault rather than a legitimate health issue. Those views can cause people to delay or resist getting help. Unfortunately, people can live with debilitating mental health problems without getting commonly available assistance.
Medication can be a first step in stabilizing chemical imbalances in the brain. Counseling can help us to learn coping skills and to deal with underlying issues. Good life skills such as, a healthy diet, regular sleep, socializing and exercise can help our bodies to be healthier and allow our minds to recover.
Reaching out to access the available help can increase the quality of your life. http://www.cmha.ca/bins/index.asp
Tuesday, September 22, 2009
Distraction:Hobbies and Interests
When my aches, pains and health concerns have me worn out and frustrated I have a wonderful weapon in my arsenal ......distraction! Just as you can distract a cranky toddler by exchanging the delicate china ornament with their favorite toy we can distract ourselves from focusing on our health issues by pursuing our hobbies and interests. Suddenly a depressing day can seem a little brighter and the pain a little less noticeable.
It can be as simple as looking at seed catalogs on a chilly February morning or as elaborate as painting tiny figurines for an action game. Your attention and focus is removed from your body and time begins to slide by. In fact that is how you can know you've found your bliss when you lose track of time and are distracted from your physical or emotional ailments. You have discovered a place of momentary rest from chronic illness.
What if your chronic illness has taken away your ability to enjoy your favorite hobby? How do you cope? Sometimes you can adjust with a shift in skills. If you love scrap booking but the scissor work and grasping hurts your aching hands maybe it is time to look at scrap booking on the computer. Different hand movements less stressful for your hands allow you to continue your hobby in a new way.
I enjoyed sewing and handwork but my brain fog and fatigue made it impossible for a time for me to pursue those interests. A friend with a chronic illness introduced me to knitting circle looms. I soon was making hats in a rainbow of colors and textures. This wonderful product didn't require me to count stitches or remember patterns. I could lay it down and come back to it later without losing my place. Best of all I felt productive and creative.
It can be as simple as looking at seed catalogs on a chilly February morning or as elaborate as painting tiny figurines for an action game. Your attention and focus is removed from your body and time begins to slide by. In fact that is how you can know you've found your bliss when you lose track of time and are distracted from your physical or emotional ailments. You have discovered a place of momentary rest from chronic illness.
What if your chronic illness has taken away your ability to enjoy your favorite hobby? How do you cope? Sometimes you can adjust with a shift in skills. If you love scrap booking but the scissor work and grasping hurts your aching hands maybe it is time to look at scrap booking on the computer. Different hand movements less stressful for your hands allow you to continue your hobby in a new way.
I enjoyed sewing and handwork but my brain fog and fatigue made it impossible for a time for me to pursue those interests. A friend with a chronic illness introduced me to knitting circle looms. I soon was making hats in a rainbow of colors and textures. This wonderful product didn't require me to count stitches or remember patterns. I could lay it down and come back to it later without losing my place. Best of all I felt productive and creative.
Monday, September 21, 2009
30 Things About My Invisible Illness You May Not Know
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: multiple endocrine failures along with several other diseases and conditions.
2. I was diagnosed with it in the year: 1986 Addison’s disease
3. But I had symptoms since: 1984
4. The biggest adjustment I’ve had to make is: to pace myself in how I use my energy
5. Most people assume: that I look normal so I must be well
6. The hardest part about mornings are: that I seldom feel rested or have more energy than when I went to bed
7. My favorite medical TV show is: Mystery Diagnosis because it took so long to diagnose me and House because he is so brilliant at diagnosis and so contrary in character.
8. A gadget I couldn’t live without is: my CPAP because it increases the quality of my sleep
9. The hardest part about nights are: Shutting off the worries and chatter in my mind
10. Each day I take _19_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: read and study them and then decide if I should give them a trial
12. If I had to choose between an invisible illness or visible I would choose: invisible because it allows you more privacy about who you share your health issues with
13. Regarding working and career: I truly miss being in the work world and contributing. I miss providing for myself and the independence that gave me.
14. People would be surprised to know: how exhausted I am every day
15. The hardest thing to accept about my new reality has been: that as active as my mind is at times, that my body often just cannot do the things I wish to accomplish
16. Something I never thought I could do with my illness that I did was: go on two hot air balloon rides and they were glorious
17. The commercials about my illness: there are none because it is so rare. The FM is in a commercial for a new US drug that is supposed to take away the pain.
18. Something I really miss doing since I was diagnosed is: waking up just once rested and energized and ready to do anything the day involved.
19. It was really hard to have to give up: working with children
20. A new hobby I have taken up since my diagnosis is: knitting on knitting boards or circles
21. If I could have one day of feeling normal again I would: spend it walking in nature going places that I don’t have energy to go to now or traveling to a distant country and being able to see all the sites.
22. My illness has taught me: to appreciate beauty and nature and my innate worth
23. Want to know a secret? One thing people say that gets under my skin is: that if I just had more faith I would be healed.
24. But I love it when people: accept my limitations and remain my friends
25. My favorite motto, scripture, quote that gets me through tough times is: What doesn’t kill you makes you stronger
26. When someone is diagnosed I’d like to tell them: that there is hope and that your illness may be given to you for a larger purpose than you can comprehend
27. Something that has surprised me about living with an illness is: how lonely it is at times
28. The nicest thing someone did for me when I wasn’t feeling well was: cleaning my home when I was in the hospital, looking after my children when I was too ill to care for them
29. I’m involved with Invisible Illness Week because: I know the stigma of having an invisible illness and having my health needs ignored since they are not obviously physical disabilities
30. The fact that you read this list makes me feel: acknowledged and accepted
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
1. The illness I live with is: multiple endocrine failures along with several other diseases and conditions.
2. I was diagnosed with it in the year: 1986 Addison’s disease
3. But I had symptoms since: 1984
4. The biggest adjustment I’ve had to make is: to pace myself in how I use my energy
5. Most people assume: that I look normal so I must be well
6. The hardest part about mornings are: that I seldom feel rested or have more energy than when I went to bed
7. My favorite medical TV show is: Mystery Diagnosis because it took so long to diagnose me and House because he is so brilliant at diagnosis and so contrary in character.
8. A gadget I couldn’t live without is: my CPAP because it increases the quality of my sleep
9. The hardest part about nights are: Shutting off the worries and chatter in my mind
10. Each day I take _19_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: read and study them and then decide if I should give them a trial
12. If I had to choose between an invisible illness or visible I would choose: invisible because it allows you more privacy about who you share your health issues with
13. Regarding working and career: I truly miss being in the work world and contributing. I miss providing for myself and the independence that gave me.
14. People would be surprised to know: how exhausted I am every day
15. The hardest thing to accept about my new reality has been: that as active as my mind is at times, that my body often just cannot do the things I wish to accomplish
16. Something I never thought I could do with my illness that I did was: go on two hot air balloon rides and they were glorious
17. The commercials about my illness: there are none because it is so rare. The FM is in a commercial for a new US drug that is supposed to take away the pain.
18. Something I really miss doing since I was diagnosed is: waking up just once rested and energized and ready to do anything the day involved.
19. It was really hard to have to give up: working with children
20. A new hobby I have taken up since my diagnosis is: knitting on knitting boards or circles
21. If I could have one day of feeling normal again I would: spend it walking in nature going places that I don’t have energy to go to now or traveling to a distant country and being able to see all the sites.
22. My illness has taught me: to appreciate beauty and nature and my innate worth
23. Want to know a secret? One thing people say that gets under my skin is: that if I just had more faith I would be healed.
24. But I love it when people: accept my limitations and remain my friends
25. My favorite motto, scripture, quote that gets me through tough times is: What doesn’t kill you makes you stronger
26. When someone is diagnosed I’d like to tell them: that there is hope and that your illness may be given to you for a larger purpose than you can comprehend
27. Something that has surprised me about living with an illness is: how lonely it is at times
28. The nicest thing someone did for me when I wasn’t feeling well was: cleaning my home when I was in the hospital, looking after my children when I was too ill to care for them
29. I’m involved with Invisible Illness Week because: I know the stigma of having an invisible illness and having my health needs ignored since they are not obviously physical disabilities
30. The fact that you read this list makes me feel: acknowledged and accepted
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
Sunday, September 20, 2009
Overcoming Isolation
One of the consequences of chronic illness can be isolation. Because of physical or emotional reasons we may spend a great deal of time at home alone. This can cause our world to seem smaller and our ailments to seem proportionately larger. Often we are lonely and withdrawn and can feel it takes too much effort to reach out to the world.
Fortunately there are many ways to breach that isolation. My Chronic Disease Nurse (part of Team Penny) recommended a couple of programs to me when I moved to a new town so that I would be less isolated and also have my physical needs met. One program was the Adult Day Support Program http://www.albertahealthservices.ca/services.asp?pid=service&rid=1026103 . Which has helped me socialize, learn new skills, exercise, have health monitored, eat a lovely balanced lunch and go on outings to new places. The other was The Adult Day Support Modified Aquasize/Swim program. Which consists of an outing to a warmer more accessible pool in a nearby town where we have a modified aquasize lesson and have a lunch outing. I attend each program once weekly.
I have made lasting friendships with people of varying disabilities and also the program organizers and assistants. Yes, I did have to make an effort to leave my comfort zone to attend but the resulting human contact and interaction has been well worth the effort. There are times I am unable to attend because of my health but overall these programs give structure, companionship and increased health to my life.
Overcoming isolation doesn't always have to happen in a planned program. Even though that can be a great start if we have lost contact with the outside world. It can be as simple as e-mailing a friend or posting on a chatline. Getting out of the house to do simple chores can allow socializing with the bank teller or the librarian. Sometimes we need to overcome the inertia of isolation by picking up the phone to reach out to family or friends.
Solitude can be renewing but too much solitude can cut us off from society and the connectedness that makes us human.
Fortunately there are many ways to breach that isolation. My Chronic Disease Nurse (part of Team Penny) recommended a couple of programs to me when I moved to a new town so that I would be less isolated and also have my physical needs met. One program was the Adult Day Support Program http://www.albertahealthservices.ca/services.asp?pid=service&rid=1026103 . Which has helped me socialize, learn new skills, exercise, have health monitored, eat a lovely balanced lunch and go on outings to new places. The other was The Adult Day Support Modified Aquasize/Swim program. Which consists of an outing to a warmer more accessible pool in a nearby town where we have a modified aquasize lesson and have a lunch outing. I attend each program once weekly.
I have made lasting friendships with people of varying disabilities and also the program organizers and assistants. Yes, I did have to make an effort to leave my comfort zone to attend but the resulting human contact and interaction has been well worth the effort. There are times I am unable to attend because of my health but overall these programs give structure, companionship and increased health to my life.
Overcoming isolation doesn't always have to happen in a planned program. Even though that can be a great start if we have lost contact with the outside world. It can be as simple as e-mailing a friend or posting on a chatline. Getting out of the house to do simple chores can allow socializing with the bank teller or the librarian. Sometimes we need to overcome the inertia of isolation by picking up the phone to reach out to family or friends.
Solitude can be renewing but too much solitude can cut us off from society and the connectedness that makes us human.
Saturday, September 19, 2009
Energy and Balance - The Spoon Theory
Energy and the tasks required for the day often are a delicate balancing act when you have a chronic illness. It is difficult to commit to future plans because you are unsure of what your energy level will be at that time. If you are like me you fear being considered unreliable. Sometimes our friends and family members don't understand our inability to be spontaneous or make long term plans.
Counselors would try to explain my energy balance like a chequing account. Energy deposited and energy withdrawn. It is a very understandable analogy. Unfortunately it didn't really convey to my friends and family the actual cost of those deposits and withdrawals on me physically.
The best way to explain this came to me when I read Christine Miserandino's explanation to a friend of how her energy balance was effected by her Lupus. As she sat in a diner she grabbed a handful of spoons and The Spoon Theory was born. Please read the entire story at her site by clicking this link. http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Since sharing The Spoon Theory with family and friends I sometimes get comments such as, "Have you used all your spoons today?" or "Will that activity cost you too many spoons?" or "Are you saving up spoons to be able to attend the wedding?" It has become a an energy level shorthand that we share. I feel acknowledged and understood by those closest to me.
Energy levels and finding balance will always be a part of my life. Finding a way to explain these issues in an uncomplicated way has been a real blessing in my life.
Counselors would try to explain my energy balance like a chequing account. Energy deposited and energy withdrawn. It is a very understandable analogy. Unfortunately it didn't really convey to my friends and family the actual cost of those deposits and withdrawals on me physically.
The best way to explain this came to me when I read Christine Miserandino's explanation to a friend of how her energy balance was effected by her Lupus. As she sat in a diner she grabbed a handful of spoons and The Spoon Theory was born. Please read the entire story at her site by clicking this link. http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Since sharing The Spoon Theory with family and friends I sometimes get comments such as, "Have you used all your spoons today?" or "Will that activity cost you too many spoons?" or "Are you saving up spoons to be able to attend the wedding?" It has become a an energy level shorthand that we share. I feel acknowledged and understood by those closest to me.
Energy levels and finding balance will always be a part of my life. Finding a way to explain these issues in an uncomplicated way has been a real blessing in my life.
Friday, September 18, 2009
Purposeful Pets
I have a bit of a menagerie in my home and my day is set by the rhythms of my pets' lives. A white canary named Snow White serenades me awake in the morning with trills and chirps. My two dogs,
A homily repeated by my mother from her farm days echoes in my head as I start the day, "You take care of the animals FIRST." Even on difficult days I drag my body from bed and start on the daily routine of pet care. My breakfast and shower or even a return to bed waits until after their needs are met.
My responsibility to these domesticated animals gives a sense of structure to my life. In return for my stewardship I receive back unconditional love, a window into the world seen through the senses of another creature and improved health. I share nature music and jazz with my canary and my enjoyment is increased by her interest. My dogs urge me outside for a walk or a run beside the scooter (depending on the day and my energy level) and I benefit from the fresh air and exercise. Even the goldfishes' lazy circles in the water lower my blood pressure and bring me an almost zen like relaxation.
People have asked me if life wouldn't be easier without the demands of pet ownership. Especially when I need to travel and have to line up care. Or when I am ill and pet maintenance is a challenge.
My life would be immeasurably diminished without my pets' presence. They bring me joy on my darkest days. I have learned from the dogs to sag into a deep nap and not worry about life's stresses. I have learned to glory in the sunrise of a new day and the happiness of a quick splash in a bath from my canary. I have learned to enjoy the patterns of the day from my fish. I feel needed and loved from sunup to sundown. My rather solitary home is brimming with life.
Most of us have read or heard of the benefits of pet ownership or even just exposure to pets. These benefits range from emotional and physical to spiritual. See the article at this link to find out the full range of benefits that come from having a pet. http://www.holisticonline.com/stress/stress_pet-therapy-benefits-of-pets.htm
Ozzie (a Malteze, Shih Tzu Cross) and Cassie (a Minature Schnauzer)
wait impatiently in their crates for me to take them outside to start the day. Three hardy goldfish swim in place and watch me intensely waiting for their morning food.A homily repeated by my mother from her farm days echoes in my head as I start the day, "You take care of the animals FIRST." Even on difficult days I drag my body from bed and start on the daily routine of pet care. My breakfast and shower or even a return to bed waits until after their needs are met.
My responsibility to these domesticated animals gives a sense of structure to my life. In return for my stewardship I receive back unconditional love, a window into the world seen through the senses of another creature and improved health. I share nature music and jazz with my canary and my enjoyment is increased by her interest. My dogs urge me outside for a walk or a run beside the scooter (depending on the day and my energy level) and I benefit from the fresh air and exercise. Even the goldfishes' lazy circles in the water lower my blood pressure and bring me an almost zen like relaxation.
People have asked me if life wouldn't be easier without the demands of pet ownership. Especially when I need to travel and have to line up care. Or when I am ill and pet maintenance is a challenge.
My life would be immeasurably diminished without my pets' presence. They bring me joy on my darkest days. I have learned from the dogs to sag into a deep nap and not worry about life's stresses. I have learned to glory in the sunrise of a new day and the happiness of a quick splash in a bath from my canary. I have learned to enjoy the patterns of the day from my fish. I feel needed and loved from sunup to sundown. My rather solitary home is brimming with life.
Most of us have read or heard of the benefits of pet ownership or even just exposure to pets. These benefits range from emotional and physical to spiritual. See the article at this link to find out the full range of benefits that come from having a pet. http://www.holisticonline.com/stress/stress_pet-therapy-benefits-of-pets.htm
Thursday, September 17, 2009
Lighthouses
I've changed my site template to include a lighthouse. I collect lighthouses and enjoy photographing them when I travel. They are a symbol of safety and security in a stormy world. For me they are a talisman to center myself on. A reminder that hope endures and that I can ride out my own personal storms.
At times when we are coping with a chronic illness we may feel that we are swirling in a storm of medical appointments, new diagnosis, work issues, relationship issues etc. What is your lighthouse in the midst of the tempest? Where do you find peace and healing while your world seems so uncertain and changeable?
For me that is a spiritual question and I find my strength through my beliefs. At times when life feels exceedingly demanding I retreat to my comfy couch and listen to spiritual music which uplifts my troubled soul. I cocoon at home and read the scriptures and often find passages that seem to address me and my problems. Sometimes I struggle and my prayers seem to reach only as far as the ceiling. At those times it is my unwillingness to hand over my burdens to be shared that block me in.
When I humbly present what I cannot cope with on my own small miracles occur in my life. A phone call from a friend or loved one seems to occur at just the right moment. A small service is offered that uplifts me and spares me energy. I see the beauty and wonder in nature more clearly.
Having a lighthouse as a symbol of that connection allows me to remember that endurance can be beautiful and that when the storm passes life continues on.
At times when we are coping with a chronic illness we may feel that we are swirling in a storm of medical appointments, new diagnosis, work issues, relationship issues etc. What is your lighthouse in the midst of the tempest? Where do you find peace and healing while your world seems so uncertain and changeable?
For me that is a spiritual question and I find my strength through my beliefs. At times when life feels exceedingly demanding I retreat to my comfy couch and listen to spiritual music which uplifts my troubled soul. I cocoon at home and read the scriptures and often find passages that seem to address me and my problems. Sometimes I struggle and my prayers seem to reach only as far as the ceiling. At those times it is my unwillingness to hand over my burdens to be shared that block me in.
When I humbly present what I cannot cope with on my own small miracles occur in my life. A phone call from a friend or loved one seems to occur at just the right moment. A small service is offered that uplifts me and spares me energy. I see the beauty and wonder in nature more clearly.
Having a lighthouse as a symbol of that connection allows me to remember that endurance can be beautiful and that when the storm passes life continues on.
Wednesday, September 16, 2009
A Clean Home Out Of Chaos
Have you ever felt that your home is falling into chaos because of your chronic illness? Sometimes the brainfog is so bad you can't decide what to do with what little energy you have for housekeeping.
A website that has helped me is http://www.flylady.net/ . I started off with the babysteps and gradually became more organized and dejunked a good portion of my home. Now this is a process and some weeks are better than others but overall my home is cleaner and better organized. I value the daily e-mails that help me to know what to tackle that day. The program is adjustable to your health needs, somedays I do less and other days I do more.
One tip is using a timer and working on something for 10 or 15 minutes and then resting. It is amazing how much I can accomplish in 15 minutes and the timer helps me to overcome my procrastination. I feel such a sense of accomplishment and after a rest I tackle another small chore. Some days I can only manage setting the timer for 5 minutes and then rest for an hour but every hour I have accomplished some small step towards keep my home managable.
Give flylady a try and see if it helps you. Be aware that the site is jam packed with info so just start with the babysteps button listed on the left side of the screen. Take it one day at a time and trust the process.
A free blogtalkradio seminar on Simplifying Your Home and Housework with Marcia Ramsland at 4 pm Pacific time Sept 17, 2009. The seminar will be archived if you can't listen to it until later. http://www.blogtalkradio.com/invisibleillnessconf
Marcia, entertaining media guest expert, speaker, and professional organizer, is well known as “The Organizing Pro” for her practical tips and clever solutions in homes and offices. She appears on national radio and TV, and her tips in national magazines like Better Homes and Gardens, Woman’s Day, and Real Simple magazines. Marcia is the author of the popular “Simplify for Success” book series, Simplify Your Life, Simplify Your Time, Simplify Your Space, Simplify Your HolidaysAges and Stages of Getting Children Organized (Thomas Nelson) and booklet. Marcia has a daughter that got Fibromyalgia at age 17 and knows well what it's like to have an invisible illness in the home. For more on Marcia's helpful resources go to www.OrganizingPro.com Marcia has donated a copy of her book "Simplify Your Life."
I hope these two information sources help with keeping your home clean and organized.
A website that has helped me is http://www.flylady.net/ . I started off with the babysteps and gradually became more organized and dejunked a good portion of my home. Now this is a process and some weeks are better than others but overall my home is cleaner and better organized. I value the daily e-mails that help me to know what to tackle that day. The program is adjustable to your health needs, somedays I do less and other days I do more.
One tip is using a timer and working on something for 10 or 15 minutes and then resting. It is amazing how much I can accomplish in 15 minutes and the timer helps me to overcome my procrastination. I feel such a sense of accomplishment and after a rest I tackle another small chore. Some days I can only manage setting the timer for 5 minutes and then rest for an hour but every hour I have accomplished some small step towards keep my home managable.
Give flylady a try and see if it helps you. Be aware that the site is jam packed with info so just start with the babysteps button listed on the left side of the screen. Take it one day at a time and trust the process.
A free blogtalkradio seminar on Simplifying Your Home and Housework with Marcia Ramsland at 4 pm Pacific time Sept 17, 2009. The seminar will be archived if you can't listen to it until later. http://www.blogtalkradio.com/invisibleillnessconf
Marcia, entertaining media guest expert, speaker, and professional organizer, is well known as “The Organizing Pro” for her practical tips and clever solutions in homes and offices. She appears on national radio and TV, and her tips in national magazines like Better Homes and Gardens, Woman’s Day, and Real Simple magazines. Marcia is the author of the popular “Simplify for Success” book series, Simplify Your Life, Simplify Your Time, Simplify Your Space, Simplify Your HolidaysAges and Stages of Getting Children Organized (Thomas Nelson) and booklet. Marcia has a daughter that got Fibromyalgia at age 17 and knows well what it's like to have an invisible illness in the home. For more on Marcia's helpful resources go to www.OrganizingPro.com Marcia has donated a copy of her book "Simplify Your Life."
I hope these two information sources help with keeping your home clean and organized.
Tuesday, September 15, 2009
Go Team Penny!
I've found a great site called chronicbabe.com. Jenni Prokopy has created a real girly site for women with chronic illness. She offers a biweekly goodybag by e-mail with lots of good info on how to live well with a chronic illness. Be sure to sign up for it while you check out her site. http://www.chronicbabe.com/
One of the things Jenni advocates is for us to have a team of people who are your support network for your health and well being. These team members can be friends and family members but often include medical professionals as well as others like hairstylists who contribute to our feeling our best.
Today I checked in with my dietitian for a yearly visit. She is on Team Penny even though she probably doesn't even know it! She shared some great info on triglycerides.Did you know that triglycerides are one of the fats in your blood and that they contribute to thickening of your blood. I learned that we control them by limiting foods high in sugar and enjoying starchy foods and fats in moderation. The starch portion of your dinner plate should cover only one quarter of the plate. Two kind of non starchy vegetables should cover one half of your plate and then protein the remaining quarter.
She reviewed my eating record and pointed out that I was drinking too many sugary drinks. My goal is to increase my water consumption. She also gave me info on how to increase my fiber intake. All in all a good visit.
Who's on your team? Maybe you need to start to build one.
One of the things Jenni advocates is for us to have a team of people who are your support network for your health and well being. These team members can be friends and family members but often include medical professionals as well as others like hairstylists who contribute to our feeling our best.
Today I checked in with my dietitian for a yearly visit. She is on Team Penny even though she probably doesn't even know it! She shared some great info on triglycerides.Did you know that triglycerides are one of the fats in your blood and that they contribute to thickening of your blood. I learned that we control them by limiting foods high in sugar and enjoying starchy foods and fats in moderation. The starch portion of your dinner plate should cover only one quarter of the plate. Two kind of non starchy vegetables should cover one half of your plate and then protein the remaining quarter.
She reviewed my eating record and pointed out that I was drinking too many sugary drinks. My goal is to increase my water consumption. She also gave me info on how to increase my fiber intake. All in all a good visit.
Who's on your team? Maybe you need to start to build one.
William Watson Lodge, Peter Lougheed Provinical Park, Alberta
Lower Kananaskis Lake
There is a wonderful facility for the disabled in Alberta, William Watson Lodge. Offering paved pathways and low rent cabins it makes the wilderness accessible for everyone. I recently spent a few days there and had a great time scooting allover on the paths taking photos and walking the dogs.
Even in September there are still wildflowers blooming,
Mushrooms and fungis were growing in the moss and at the base of trees.
I kepts looking for fairies to come perch on them.
I even saw wildlife on my journeys.
If you would like to learn more about this facility download the brochure in the link below.
Monday, September 14, 2009
National Invisible Chronic Illness Awareness Week Sept 14 - 20, 2009
SBWIRE – SEPT 14, 2009 / Nearly 1 in 2 people in the USA live with a chronic illness and about 96% of these illnesses are invisible.* Rest Ministries, Inc., the largest Christian organization that serves the chronically ill, and an affiliate of Joni Eareckson Tada’s International Disability Ministry, is encouraging those with illness, friends, family, caregivers, and churches to get involved in their annual outreach, National Invisible Chronic Illness Awareness Week, September 14-20, 2009.2harrpublishing, Christian Illness Ministry Sponsors 5-Day Virtual Conference Online, Sep 2009
In addition to churches having outreach events for those with chronic conditions, Rest Ministries organizes a 5-day free virtual conference with 20 seminars that can be attended via one’s computer and computer speakers. Seminars are on a variety of topics including marriage, parenting, starting a business, how to apply for disability and more—all when you live with a chronic illness. The seminars are held via Blog Talk Radio and listeners can call in through their phone line with questions.
• Bill and Pam Farrel, best-selling authors; The Marriage Code (Harvest House, 2009) • Naomi Kingery, author of Sugar Free Me (Xulon Press, 2008) • Dena Dyer, author of Mothers of the Bible (Barbour Publishing, 2009) • Georgia Shaffer, author of How Not to Date a Loser (Harvest House, 2008) • Joanna Faillace, Certified Biblical Health Coach an author of Super-Naturally Healthy Families Cookbook Devotional • Lisa Copen, author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend (Rest Publishers, 2008) • Maureen Pratt, author of Peace in the Storm: Meditations on Chronic Pain & Illness (Galilee Trade, 2005) • Jennifer Saake, author of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage and Adoption Loss (NavPress, 2005) • Marcia Ramsland, author of Simplify Your Life (Thomas Nelson, 2004) • Jolene Philo, author of A Different Dream for My Child (Discovery House Publishers 2009)
Lisa Copen, 40, founder of Rest Ministries says, “Many Christians may have a solid walk with the Lord, but the emotional rollercoaster of a chronic illness and its constant progression can leave them feeling alone and misunderstood. They are hanging on by a thread and being told they look fine and should just make themselves get up and go to church only adds to the isolation and bitterness of others ‘not getting it.’ The emotional scars can be harder to cope with than the actual illness.”
Copen, who has lived with rheumatoid arthritis and fibromyalgia since the age of twenty-four, ended up in the hospital for a week last fall fighting off the flesh eating bacteria in an ankle wound. We never know what the next day will hold,” she explains. “It is so important that there is good communication between those who are ill and their loved ones, as well as the church body.”
Did Copen’s circle of friends and church come through for her? “It was an enlightening experience,” she says. “Although I teach others to ask for help, I found out how difficult it is. And then when I did ask for help, I experienced what it is like when you fall through the cracks and everyone thinks someone else is providing both the practical support as well as emotional encouragement.”
Rest Ministries extends their outreach about invisible illness awareness to churches, providing materials to start up HopeKeepers groups, books, cards, tracts, etc. About 96% of those with illness may appear perfectly healthy on Sunday mornings, but may struggle to get out of bed the remainder of the week.
Ken Chambers, Director of Church Relations at Joni and Friends International Disability Center, says, “It is vital that Christians understand the emotional and spiritual trials of those with invisible disabilities, as well as those with visible disabilities. I encourage church leaders to take advantage of the wealth of resources at Rest Ministries and to participate in the National Invisible Chronic Illness Awareness Week, which they sponsor annually.”
One can get involved by joining the hundreds of bloggers who are writing about illness in the next few days, by joining the cause on Facebook, and most especially, by tuning in for the conference. All seminars will also be recorded and archived.
See www.invisibleillness.com for more information or www.restministries.org for the sponsor of this event, Rest Ministries.
There are excellent seminars on blog radio this week which you can link to at the above address.
* Link recommendations will appear here « Links
In addition to churches having outreach events for those with chronic conditions, Rest Ministries organizes a 5-day free virtual conference with 20 seminars that can be attended via one’s computer and computer speakers. Seminars are on a variety of topics including marriage, parenting, starting a business, how to apply for disability and more—all when you live with a chronic illness. The seminars are held via Blog Talk Radio and listeners can call in through their phone line with questions.
• Bill and Pam Farrel, best-selling authors; The Marriage Code (Harvest House, 2009) • Naomi Kingery, author of Sugar Free Me (Xulon Press, 2008) • Dena Dyer, author of Mothers of the Bible (Barbour Publishing, 2009) • Georgia Shaffer, author of How Not to Date a Loser (Harvest House, 2008) • Joanna Faillace, Certified Biblical Health Coach an author of Super-Naturally Healthy Families Cookbook Devotional • Lisa Copen, author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend (Rest Publishers, 2008) • Maureen Pratt, author of Peace in the Storm: Meditations on Chronic Pain & Illness (Galilee Trade, 2005) • Jennifer Saake, author of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage and Adoption Loss (NavPress, 2005) • Marcia Ramsland, author of Simplify Your Life (Thomas Nelson, 2004) • Jolene Philo, author of A Different Dream for My Child (Discovery House Publishers 2009)
Lisa Copen, 40, founder of Rest Ministries says, “Many Christians may have a solid walk with the Lord, but the emotional rollercoaster of a chronic illness and its constant progression can leave them feeling alone and misunderstood. They are hanging on by a thread and being told they look fine and should just make themselves get up and go to church only adds to the isolation and bitterness of others ‘not getting it.’ The emotional scars can be harder to cope with than the actual illness.”
Copen, who has lived with rheumatoid arthritis and fibromyalgia since the age of twenty-four, ended up in the hospital for a week last fall fighting off the flesh eating bacteria in an ankle wound. We never know what the next day will hold,” she explains. “It is so important that there is good communication between those who are ill and their loved ones, as well as the church body.”
Did Copen’s circle of friends and church come through for her? “It was an enlightening experience,” she says. “Although I teach others to ask for help, I found out how difficult it is. And then when I did ask for help, I experienced what it is like when you fall through the cracks and everyone thinks someone else is providing both the practical support as well as emotional encouragement.”
Rest Ministries extends their outreach about invisible illness awareness to churches, providing materials to start up HopeKeepers groups, books, cards, tracts, etc. About 96% of those with illness may appear perfectly healthy on Sunday mornings, but may struggle to get out of bed the remainder of the week.
Ken Chambers, Director of Church Relations at Joni and Friends International Disability Center, says, “It is vital that Christians understand the emotional and spiritual trials of those with invisible disabilities, as well as those with visible disabilities. I encourage church leaders to take advantage of the wealth of resources at Rest Ministries and to participate in the National Invisible Chronic Illness Awareness Week, which they sponsor annually.”
One can get involved by joining the hundreds of bloggers who are writing about illness in the next few days, by joining the cause on Facebook, and most especially, by tuning in for the conference. All seminars will also be recorded and archived.
See www.invisibleillness.com for more information or www.restministries.org for the sponsor of this event, Rest Ministries.
There are excellent seminars on blog radio this week which you can link to at the above address.
* Link recommendations will appear here « Links
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