My life changed dramatically in the past year. I began working full-time, my husband and I bought a house on 5 acres, and I needed to find a new health team. I put my blog on the back burner because it was an obligation that I could not add to my busy plate. But I’ve missed the process of writing and sharing. It is a project that gives me purpose. While sometimes a painful and challenging process, clicking submit always satisfies.
I am not sure where my writings will lead this time around. Reading past postings, I realized that there was too much about my health challenges. How boring is that?! My original intention was writing as a motivator, educator and counselor but it sounded more like a whiner. I do not feel pity for myself so why would I write like I was seeking consolation from others?
This time around, perhaps Erato, the poetry muse, will bless me with inspiration more often. Perhaps my camera lens will document some of the remarkable landscape, creatures, and loved ones that surround my life. All I know for certain is that I want to nudge my creative self.
I continue to manage life with chronic fatigue syndrome/myalgic encephalomyletis (we have to find a new name for this disease!) and fibromyalgia. Postings will continue to be influenced by my chronic illness, as it is a component of my life. But now I plan on sharing experiences from my exploration of ways that enhance my life – increasing joy and giving purpose in life.
For many who are lonely, chronically ill or in constant pain, summer holidays are especially difficult. Watching parades seems impossible as standing for long periods is painful. Invitations to picnics are declined because of special diets and the energy to socialize is overwhelming. There is relief that Memorial Day weekend is over and life can return to its normal painful routine. Until July 4th, Labor Day Weekend, and other summer activities arrive.
Suffering from chronic illness and pain does not mean forgoing activities that you want to attend. Planning and communicating with friends and family can make the summer and all its festivities fun. Let this summer be one of joy.
Here are a few suggestions:
If you want to attend neighborhood events, find a place ahead of time where you think you’ll feel comfortable. Arrive early and bring a comfortable chair, water, and food that you can eat.
When invited to a party, inform the host ahead of time if you have food limitations and not to take offense when you bring your own food. Many hosts will accommodate you with some dishes that you can eat.
Want to take a vacation but feel too limited by your illness? Sometimes it’s easier traveling alone so you don’t worry about pleasing others but not everyone is comfortable traveling solo. If you don’t like the idea of traveling alone, consider taking a short trip with a close friend or loved one. Explain your limitations ahead of time and urge your travel partners that exploring without you is fine if you need to rest back at the hotel. Be sure you have enough medication for when unplanned delays occur.
Enjoy the fresh air when possible. Depending on where you live, find the best time of day when you are comfortable outdoors and deeply inhale the fresh air. Face the morning sun and allow the vitamin D to absorb into your face. Marvel at the sunset, a distant thunderstorm, the stars in the sky. Even a few minutes outside can do wonders for your frame of mind.
Be good to yourself this summer by resting and finding small pleasures. A hammock under a shade tree, lounging in a screened in porch, or sitting on the fire escape in the city can do wonders for you even on those days when you feel especially lousy.
If none of these ideas sound possible to you, I want to help you find ways that work for you to enjoy this summer. Contact me and we can work together to make the coming months (and years) more joyful.
I offer a free, no commitment exploration session.
I have shared some of my history in previous blogs and forgive me if I am repetitive at times. The first part that I am writing of the benefits of a life coach is to share why coaching people with disabilities is my passion and life’s mission.
I remember the insidiousness of the diseases going back to my twenties – yeah, I was really old. Even as a child, I was not really sickly but there were many days when I didn’t feel good and my mom would take my temperature, say I was fine and send me off to school. So having times of feeling tired and crappy for no apparent reason did seem normal to me. When I was first diagnosed with Chronic Fatigue Syndrome and Fibromyalgia, I had been feeling poorly for so many years that I just assumed that was what happened when you get old. Imagine my surprise when a new doctor took the time to ask questions beyond “what brings you here today?” He began touching various parts of my body and I nearly screamed at just about every trigger point. How did he know where places where I hurt? I was referred to a specialist, Dr. S, and when I was finally diagnosed, I was relieved. It wasn’t all in my head, I was actually physically ill!
I was foolish for not listening to my body and making myself believe that I preferred curling up with my dog and cat to going out with friends because I had no energy. I was put on medication which had to be adjusted but I still wasn’t up to snuff so I asked my new hero, Dr. S, about alternative therapies. He said that he could not officially make suggestions but gave me the name of an acupuncturist he knew who had once been a physician. I had actually met with a couple of alternative therapists but I didn’t feel comfortable with them. I decided to make an appointment. After three months of weekly therapy, I great improvement and continued for another three months and for the first time since I could remember, I had energy, enthusiasm, and ready to make life changes. I went off all of my medication and decided to treat myself to one of the magical places that I always wanted to visit – Macchu Picchu in Peru.
I had lived in Greece and Israel in my teens and early twenties and loved to travel. Of course, I wasn’t just going to visit Macchu Picchu, I was going to hike the Inca Trail to get there.
It was a difficult but exciting experience. I was not as strong and healthy as I thought but I had no regrets. I achieved one of my dreams and returned home exhausted but exhilarated. I decided to find another job, which was unsatisfying for me and ended up in an even worse situation. I was doing much better physically but frustrated with my work. After receiving my MSW, I worked for six years at a public high school and loved it but decided to move on.
After several positions in a variety of non-profit organizations that never seemed to satisfy, my brother who lives in Alaska called and said they love social workers to be counselors in Alaska. When a door closes, a window opens. I couldn’t sell my house but found a tenant, packed up my two dogs and drove from Cleveland to Alaska. We lived in a small village in the interior of Alaska between Fairbanks and Nome. The only way to get there was by small plane. I was an itinerant counselor which meant travelling to three villages. Fortunately, within a couple of weeks of living in Nulato, I met the love of my life, my soul mate, and my anchor. We moved in together almost immediately (I know, sinful) but everyone thought we were just roommates and it was more convenient for him to dog sit when I travelled. I took a year for everyone to figure out that we had fallen in love.
The responsibility for four k-12 schools was a challenge but I loved it. But all the travel was taking its toll.
After school, I couldn’t wait to lay down and couldn’t wait to get home for the weekend and do nothing but sit on the sofa. Forget going to the school on weekends or staying beyond the scheduled work day. I just couldn’t do it. I finally told my ‘roommate’ Jim Bob about my chronic illness and was shocked that it didn’t phase him. In fact, after three years in Nulato, Jim Bob said it was time to go home to Texas and I was going with him.
A year later, we married and life gets better and better. I have been slowly working
on my M.Ed. in school counseling since arriving in Alaska and will finally graduate in May. I was getting weaker and more ill but oddly continued to feel life is great. My illness is part of me yet I will not allow it to rule me. I now have doctors I trust and am back on medication and its adjustments. Surprisingly, I tried several months of acupuncture treatment but I wasn’t making progress. Also, medication that used to be very effective no longer helped me so the process of stabilization is trying at times.
Over the years, I have learned how to manage my life and body. I walk with the dogs daily, get on my stationary bike a few times a week, and practice a combination of yoga and qi gong that help relax my muscles and ease my mind. I have been playing with aromatherapy and have not gotten good enough to sell products but gave lotions and bath salts away for Christmas gifts. I knit when I feel like it. I work on life coaching and on my project for school. My husband and I grow closer each day and my life is joyful and I have purpose.
I share this history so potential as well as current clients understand that I have been there and know how difficult life can be. But it is possible to take control of your life.
While I have CFS and fibromyalgia, the diagnosis doesn’t matter. If you live with pain, it is possible to live the life you desire and not let your pain and illness control you.
I want to briefly write about resolutions because I think they are foolish. Lose weight, quit smoking, exercise more, blah blah blah. Each year, people decide that this is the year of change but do they really want to make those changes or do they simply think they should because of how others may feel or because they don’t feel good about themselves.
The truth is, the calendar has no relevance to living and managing the life you want. If you want to do something, and you feel good then you are more likely to be successful. When you are up and in a positive mood and your instinct tells you the time is right, you will be able to think clearly and increase your chances of achieving your dream of a healthier and happier life.
When I made the decision to move to Alaska to become a school counselor in remote villages, it was not a resolution that made me do it. When the opportunity presented itself, I immediately took the opportunity because I knew in my gut it was the right thing to do. I owned a house that wouldn’t sell, a house full of furniture, memorabilia, and junk that needed to be dealt with but I didn’t care. I also have chronic fatigue syndrome and fibromyalgia and would be driving thousands of miles with two dogs.
Nothing is insurmountable if it’s what you believe is the right thing to do.
When I met my husband in the tiny village of Nulato, Alaska, I was not so much resigned but accepting of living my life as a single woman with my dogs. But my instinct for the first time ever, told me that this was a man who was good for me. After three years, we moved to his home state of Texas, married and life for me is as it should be.
It wasn’t my resolution of 2011 to become a life coach for people with disabilities. Coaching was in the back of my mind for years but it just didn’t seem doable. In fact, my ‘aha moment’ came one night while in the midst of a fibro-flare up. I needed to take time off from completing my M.ED because I was unable to think straight, suffered low energy, and was functioning on auto-pilot rather than with purpose. One night, it just hit me and I knew it was the perfect career choice. I got busy marketing, talking to people, and writing. I’ve had lots of experience in non-profit management, education, and even some corporate experience but knew nothing about starting my own business. But I am finally working towards growing my dream career regardless of obstacles.
Of course nothing is easy and dreams are usually developed over time. You will know when the time is right to move forward and act. Your mood will be high, your thoughts clear, and you will follow your instincts.
Instead of making resolutions this year, consider your dreams and if you need to get your ‘head’ in the right place to move forward, I can help you move forward to strengthen your web of life.
My sister is not exactly a health nut but she does like to be fit. She is also the adventurous type who loves to try new experiences. A couple of years ago, she went to Costa Rica for a week long surfing course. She loved it and decided to spend her winter break from teaching a New Orleans University to return to Costa Rica with a friend who wanted to practice Yoga while my sister was stoked to grab a stick (surfboard) and hang ten.
Obviously, the resort is gorgeous, in the rain forest yet near the ocean where the waves break for kooks (novice) like my sister. There was also more to do than surfing and yoga. Swimming or lounging by the pool, mountain biking, and walks along the beach were part all of their plan for much needed r&r. In fact, my sister was anxious to check out the beach the night she arrived but was kindly but firmly told this was not possible as corral snakes and other lethal creatures call the shore their own at night. Early in her vacation, they rented mountain bikes and my sister skidded on the gravel road, fall, scraping her hand badly enough to require stitches. But this was no deterrent as she came to ride waves not roads. With her hand well taped and protected, my sister grabbed a stick the next morning. She didn’t care about rippin’ it, she was just excited to be there and hope to ride the lip or curl of a wave for more than 2 seconds. And she did! She was up and riding high – then she was grubbing (wiped out). Having torn her (anterior cruciate ligament) acl while skiing many years ago, she knew the sound. Unfortunately, she heard a lot more than the pop of an acl as her knee twisted and turned against the current. But once out of the sea, and her knee well iced, she determined that it really wasn’t more than a bad twist. Her friend thought maybe her patella popped out and back into place. Their vacation was not a disaster. Then she woke up the next morning. Heading to a different clinic from where her hand was stitched, the doctor was certain her acl was damaged but uncertain of the extent of knee damage. Being in a remote village, there was no hospital with medical equipment such as xray or mri machines. Also, there was only one pair of crutches in town and the doctor had lost track of who had them. At least it was Central America where pain killers could be purchased as easily as a bag of M&Ms. When I first talked to my sister the other day, she had been cooped up in her room for the past day since it was difficult to walk, there was no elevator so going up and down the stairs appeared insurmountable without crutches. She had some books to read and her friend was bringing meals to their room. Obviously, this place had not met ADA standards. In my head, I’m thinking, “That’s ridiculous! Get out of that room and make the best of it!” Actually, her being my sister and not a client, I may have said just that. I wanted to urge her to stop feeling sorry for herself, blaming herself, and at a total loss of how to take control of her situation. The last was most disturbing as my sister likes to control every situation. As a coach, I know that when we are in a low mood, we can’t think clearly and process logically. When we feel better mentally, our minds can work through challenges with purpose. But this is my sister and it pained me that she was not making the best of her horrible situation. We talked about how she would get through the rest of her vacation. She feared the stairs, the pain excruciating pain if she did something wrong, and the guilt of putting her friend or anyone out at the hotel. Totally understandable. But she was in one of her favorite places and I couldn’t bear to think of her spending it in bed. Besides, laying in bed made all the upcoming scenarios terrifying – getting to the airport, climbing the portable stairs to the plane, and getting up the steps and into her house once she finally got home late Sunday night. She had no brace, no crutches, no one to help her once she got to the airport in Costa Rica. Okay, if the beach was out, perhaps she could at least make it to the pool. She said the resort staff has been wonderful and I suggested she ask their help to get her downstairs. Also, having experienced acl reconstruction myself, I knew that it was important to use the injured leg as much as possible or the recovery would be that much harder as muscles atrophy quickly. As we spoke, there was a knock on her door and she had to call me back. As it turned out, the physical therapist and yoga instructor had arrived to help her. The yoga master gave her oils to heat the injured area and performed reiki which made her knee feel warm and soothed. The physical therapist said she would help her figure out how to get to the pool and see what she might be able to do at the
pool. Last night, I talked to her and she had spent the day at the pool and sounded much better. One staff member had carried her down the stairs, another carried her to the restroom by the pool, and a third had brought her back to her room. Her plans for her last day, today, was to read and nap by the pool. Personally, I can’t think of a better way to spend a vacation if the beach is inaccessible (minus a blown out knee). Of course, there are many obstacles to overcome. Getting home will be manageable as there will be wheelchairs available and the airline staff will have to take care of her and make certain she gets her connections. Being new to New Orleans, my sister has yet to even find an internist so I suggested she go to an urgent care and they can get the process started towards healing. At the very least, they can give her a pair of crutches! I have done some researched and sent her names of top surgeons specializing in knee reconstruction. We both know physical therapy will be arduous but not insurmountable. Lecturing college students will have its own set of challenges not to mention that there is no telling when surgery will be performed. But she will heal. And she will have renewed respect for those who manage their disabilities daily. No one can anticipate when an accident will occur or wants to be injured or ill. But sh*t happens. It is important to find your way beyond the guilt, self-pity, and feelings of hopelessness. For only then will the mind be clear to solve any problems that develop and life will become manageable. From there, life becomes joyful with purpose and any dreams can be achieved.
According to the Miriam-Webster Dictionary, success is:
“a: degree or measure of succeedingb: favorable or desired outcome; also: the attainment of wealth, favor, or eminence.”
Success is achieving something that we strive for or how we measure ourselves as living life with a purpose. For many, success is defined by how much money someone makes, an entertainer who achieves an award, or reaching the top tier in their job. But do the people who attain the above feel successful?
Success should not be measured by how we view others rather how we view ourselves and it can and should be continually measured. For example, let’s say a graduating high school student applies for and accepted into the army. This young person has succeeded in becoming a soldier to serve his country. He is sent to a country battered by years of war and is injured requiring both of his legs amputated. While this was not part of the plan when dreaming of proudly wearing his uniform, the patient is now told that he will never be able to continue his passions of competitive running or rock climbing. With the help of physical therapy, prosthetic legs, and determination to succeed, our hero completes marathons and climbs seemingly sheer cliffs that most so-called ‘able’ people would never dream of attempting.
This example is not some story -we see similar ones on the news all the time. And our shock and awe when hearing of someone achieving seemingly impossible odds really doesn’t matter. What does is that pimply teen who dreamed of serving his country has learned that it doesn’t matter what others say or do. It only matters that he sets goals for himself and takes the necessary steps – no matter how difficult – to achieve his goals.
A person who has a disability, whether from birth, illness, or accident, sets and achieves goals like any other person. The only obstacles are those that you build yourself. Others may say it’s impossible but only you can decide what you can or can’t do. Henry Ford is quoted as saying, “If you think you can or can’t, you’re right.”
The link below is an inspiring message from Stephen Collins, who has lived with cerebral palsy all his life. I think Stephen does a much better job of expressing success with people who happen to have a disability:
Take a moment to consider how you measure success in all aspects of your life. Chances are you will feel more satisfied in some areas than others. A coach can help you define what you want in the aspects of life that you dream to improve, listen to the challenges that seem to keep you from making your dreams reality, and work with you to develop a plan for you to succeed. Will there be limitations? Of course but everyone has limitations. Even Superman had kryptonite but he always overcame that obstacle thanks to his support system.
On a personal note, one of my closest friends asked me to join her on a trip to Athens, Kos, and Nissyros, Greece where her cousin lived. Tina and I first met at a study abroad program in Greece and were roommates in college. The day before we were to leave, Tina called
to tell me she injured her foot and asked if we should cancel. I said no way, we would still have a great time. We know the Greek culture well and each other even better. Tina knew that I would help meet her needs and that I would still do things that I wanted to do. Besides visits to hospitals and doctors, we had one of our most memorable trips together. Sure, there were times when Tina needed to rest and when I felt like sightseeing or shopping, I did. We traveled by plane, ferry, and car. Were there challenges? Of course but we both know that there are always challenges when traveling and we knew the frustrations would be a minor blimp in our memories.
Don’t allow your limitations be a crutch to do the things you want to do!
During CFS and fibromyalgia a flare-up, I look at photos and read my travel journals to help me remember past experiences and adventures. I don’t feel bad that I am not able or interested in travel, rather I am reminded of the places I have been that so many ‘healthy’ people have not and the diverse people who I have met. I have learned so much and feel fortunate for the opportunities. While my life is now very different and is leading me in a new direction (for which I have no regrets!), I am so lucky to have these memories!
When I felt ‘cured’ of Chronic Fatigue Syndrome, I decided to treat myself to a new adventure. As a lover of archaeology, I decided to go to Peru and visit Macchu Picchu. I had never been to South America and while I realized there was a risk traveling as a single woman who didn’t know the language, my excitement outweighed my fears and anxiety. I have traveled extensively and lived in Greece and Israel so I was relatively confident in my abilities to handle myself.
I have never been a big fan of tour groups but did not want to travel aimlessly. I fitting compromise for me was to hike the Inca Trail a four-day hike to Macchu Picchu with a group of eight and two guides. I had been healthy and fit in the past and believed that jogging for a month would improve my endurance and be enough to manage the high altitude and long days of hiking.
In September 2004, I traveled to Lima and arrived late that night. I was forewarned at the airport to be careful of hackers and to be sure to get in a legitimate taxi to take me to my hotel. As I drove through Lima at midnight, the first thing that struck me was the poverty. I have driven through ghettos in the U.S. but this somehow felt different. It brought me down from the exhilaration I felt after touching down.
The hotel was a few blocks away from the center of Lima, Square. I spent the morning at the Cathedral of San Francisco with a wonderful guide. I then visited the catacombs which piqued my morbid curiosity of what kind of lives had all those bones experienced.
Endless steps for four days!
Along the Inca trail
The Inca Trail is mostly stone steps and meanders through three climate zones – high desert, rain forest, and cloud forest. It was not easy for me but so worthwhile. The flora and fauna are spectacular. The archaeological sites remote and fascinating. The views of the majestic Andes are awe-inspiring. And the climax is at the end of the trail when we suddenly see Macchu Picchu below us and greeted by llamas as we descended into the ancient city.
The picture says it all!
I can’t express my wonder of Macchu Picchu. It was never discovered by the Conquistadors and while unsure of its exact purpose, Macchu Picchu is believed to have been a palatial city. When it was deserted, it was completely covered for hundreds of years until it was miraculously discovered. I was at peace and my imagination sparked by what life used to be there. I made life changing decisions in this magical place by deciding to quit my current job at the Jewish Community Federation and explore other opportunities that would be less stressful.
I spent my last night in Peru at a lovely resort in a luxurious hut. I slept most of the day and night and can now admit to myself that I was having a CFS flare-up. But it was soo worth it and, fortunately, my strength soon returned after I returned home.