 With me, I see that having minimal stress is one of the biggest factors in my feeling better. I have a business which I run, and though I have delegated a lot of it over the past year, if I have a busy morning which requires phone calls, especially around stressful things, the pain I feel that day is often much more pronounced.
Before CFS, I still had a lot of stress at times, but I had a better ability to ‘disconnect’, to watch a movie or something on TV which helped to de-stress, to just put the stress aside for the day. Having pain which typically increases as the day goes by, there is a constant irritant, even on those days when pain is minimal. I’ve tried to describe it to some others that it’s like having a toothache all day, where the pain may subside but the pain resides in more than one place in my body with CFS.
I listen to a Chi Kung video nearly every day which on some days is remarkably relaxing as it is about developing a deep sense of our own breathing and our bodies. In the past couple of days I’ve listened to Joseph Campbell’s Mythos, I write to friends on YouTube and post videos there as I love to photograph. Today I went for a walk and it is uncommonly beautiful here, and I noticed I felt much less pain and happier. I do feel there is a real connection between feeling happy, uplifted or even having moments of pure silliness, these emotions bring some real relief. And I am doing much more than I was in my business a year ago, just able to work for longer periods of time, interspersed with very much needed periods of rest.
I have run into some who say that getting a lot of good sleep and rest really does not make a difference with CFS. I can’t speak for everyone but for me, sleeping and resting well makes a huge difference. Having a good sound sleep at night often makes a big difference, in a positive way, in how I feel the next day.
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Thanks Tim! How do you handle stress? Do you have any strategies that work? Please COMMENT or Send in your thoughts and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
 © 2012 NBC Over the years I’ve been able to develop a thick skin when it comes to hurtful comments from others about my struggle with ME/CFS. Dismissiveness or even subtle innuendoes suggesting that my illness was a mental health problem are a reality and I’ve come to deal with them as part of the package of ME/CFS. But recently, someone whom I thought ‘got it’, belittled my illness with a wave of her hand referring to it as a brief bout with severe depression so just get over it. REALLY!?!
I’ve now got Seth and Amy of SNL zinging their Weekend Update one liners across the video of my mind. Saying that ME/CFS sufferers are only severely depressed is like saying that ulcers can be cured by thinking pretty thoughts. REALLY!?! If ME/CFS patients are mental health cases then Aids is a lifestyle choice. REALLY!?! If you think that Prozac is the cure for ME/CFS, then I’ve got a bottle of snake oil that will cure your condescending attitude. REALLY!?!
Sometimes humor is the best medicine. How do you use it? Please COMMENT or Send in your thoughts and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
 © 2012 TSM This spring in New England has been a strange cycle of early prolonged hot weather followed by several weeks of cold, damp weather with a few nights below freezing. And like most things that respond to warmth and sunlight, I was out in my garden in early March, clearing the flower beds of winter debris. All of my perennials were sprouted and many already budding out way before their normal timeframe. Now, after a few frosts, I look about and see damage on many of the flowers and shrubs. And of course it reminds me of my successes and failures with pacing when I was struggling with ME/CFS.
It was so difficult to recognize the difference between solid progress where I could take the next step toward recovery and a good day which needed to be repeated at the same level for a while. Of course my hope and emotions were almost always in the ‘this is it’ camp. Unfortunately, most of the time I needed to stay where I was and follow the protocol until this new level of health was consistently repeated. In the beginning, I jumped forward and was almost always rewarded with a set back. Some more severe than others. But over time, I finally began to listen to my body’s call for restraint and to review my daily log for patterns that pointed to whether or not I was ready.
I admit that it took a strong hold on the reins at times when I really wanted to unleash a cantor. Do you struggle with pacing? How do you deal with miss queue days? Please COMMENT or Send in your thoughts and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
 © 2012 TSM We have been experiencing a drought in New England since the first of the year. The normal Spring rains which enable the flowering of bulbs and perennials have been absent. Then last week the weather forecasters were a buzz about the storms moving up the eastern seaboard laden with much needed water. As the front got closer, things shifted to warnings about flooding and washouts. And of course I began to think about the constant emotional peaks and valleys I experienced when I was struggling with ME/CFS.
As with all emotions that we actively fight to contain, they are held at bay by intentional shoring up with periods of overspills which always seem to be triggered unexpectedly. The cruelty of ME/CFS only served to amplify the intensity of these highs and lows. My first year was full of frustration with the medical community that labeled me as a head case. With few exceptions I was looked upon as ‘mentally weak’ and in need of therapy. After a period of permitting that negativity to cling to me, I finally rejected it. But I was still left with a pattern of extremes where sometimes the skies would dump a deluge of emotions and I would struggle to tread water. After climbing out of that, I would experience a period of emotional drought when I could stay focused on the protocol and the slow but observable progress toward getting well again.
This Focus helped me to eventually steer away from emotional lows. How do you manage this aspect of the cruelty of ME/CFS? How do you shore yourself up? Please COMMENT or Send in your thoughts and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
 © 2012 TSM As I age, my memory seems to fail me at unexpected times. I can’t recall the name of a flower that I’ve know for a decade or the name of a street that I’ve driven a thousand times. Recently, I couldn’t remember the name of a friend’s daughter and I wrestled with my memory to pull it up as I stood there with a blank stare on my face. And of course it reminded me of the brain fog I experienced daily when I struggled with ME/CFS.
During my ME/CFS days, I would be in conversation and the entire topic and my thoughts would slip away into an awkward silence. Trying to pay bills or add up simple numbers was painstaking. But most of all, I would loose track of entire days or weeks. I couldn’t recall the simplest timelines. And I struggled to get any sense of progress until I made the commitment to write it down.
Ok, I admit to having a mantra about keeping a Daily Record. And it stems from the realization that it was my daily record that over time gave me the clues to My Version of ME/CFS. I encourage everyone who is struggling with this cruel disease to faithfully keep a record of sleep, activities, rest periods, food and medications during the course of each day and night. It takes about five minutes a day to write it down in a simple, easy-to-scan format.
What kind of record do you keep? What information has proven invaluable? Please COMMENT or Send in your thoughts and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
 © 2012 TSM OK, if you haven’t already guessed, I’m an optimist. And yes, our type can get on peoples nerves when we’re too upbeat. Not to say that optimists don’t have their down times. I’ve had many. Some of those darkest times for me were when I was bedridden with ME/CFS. A disease as cruel as ME/CFS plays games with your mind, your psyche and your emotions. The worst of it for me was that I became someone whom I didn’t recognize. It began to erode my sense of self and my self esteem as well as my physical health.
What I took away from that dark place was the knowledge that this sick ME/CFS person was not the full definition of who I was and who I intended to be again. It became a tool – a negative model of what I rejected. I used it as a springboard from which to move upward again. It renewed my commitment to regain my health – one small step at a time. And each step was a little further away from those lowest points.
Did I do this after my first serious depression? Of course not! Type A personalities are quite certain of their methods and need to be clubbed a bit before they admit to being wrong. But after a few low episodes, the optimist blessedly took control and I finally began the slow yet steady ascent back to health.
How to you handle lows? Can you call on your optimist to move you upward again? Please COMMENT or Send in your thoughts and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
 © 2012 TSM I’ve recently had a series of emotionally challenging events in my life. It’s resulted in hesitancy about what’s coming next – an apprehension about the future which I know will at some point entail more of the same kind of challenges. And of course it renewed the feelings that used to affect me when I was struggling with ME/CFS.
I had tried mightily to not let feelings of anxiety or fear of more bad days get to me. My cognitive brain accepted that I would have to deal with them as I slowly recovered but my emotions and psyche were uneasy – waiting for the signs and body pain that would be the harbinger of a bad day. Sometimes I would allow this anxiety to effect my day even if it was by comparison a reasonable day. It took a great deal of intentional focus to see the positive side of how I was physically feeling. And to ignore the anxious voice inside of me.
The strategy that finally worked for me was planning ahead. During the time I was bedridden, I would plan by the hour. What should I be doing during the next few hours to achieve a good outcome? As I got healthier, I planned by the day. What should my day look like in order to stick to the protocol and have a successful day? Eventually, I was looking at a week and planning a well paced reasonable series of days that generated a positive result. It seems simple but it worked.
How do you let go of the apprehension? What are your strategies? Please COMMENT or Send in your thoughts and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
 © 2012 TSM When I was at my lowest point suffering with ME/CFS, it seemed like I had only one identity – a bedridden sick person. As I slowly began to regain some functioning, I would have brief periods of experiencing a different identity – a normal healthy person. This happened when I had a conversation about something I was passionate about and I could keep focused for ten minutes or maybe even half an hour. During that time, I forgot about ME/CFS. I stepped out of that label and, for a while, became free of it. Then, of course, it would end and I would ‘remember’ my situation.
As I grew healthier, I got to the point where half the time, I could actually participate in some normal healthy person activities and relish for a while in forgetting about ME/CFS and its cruelty. But it would end and I would have to ‘remember’ again. Straddling both worlds of sick and healthy was not only a physical challenge in terms of pacing, pacing and more pacing. It was a mental marathon ‘double life’ of moving back and forth between these two identities. Of learning to appreciate and revel in the times of acting and feeling like a healthy person and then handling the let down of remembering the reality of my situation. I worked hard at not letting the upside create an even lower downside. I kept my eyes focused on shifting the percentages – slowly and steadily – to more and more normal health person and less and less sick person.
How do you handle the Double Life of sick and healthy? What are your strategies? Please COMMENT or Send in your thoughts and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
 © 2012 TSM Over the weekend I was talking with someone about how people change when they go through personal struggles that challenge them to their core. By comparison, other difficulties in everyday life are less stressful and seem easier to handle. And of course I began to think about my ME/CFS days and how much I have changed – maybe even gained – in my more robust ability to weather the tribulations of a healthy life.
This person didn’t know me when I was sick and I was about to mention my ME/CFS struggle but I hesitated. The stigma of ‘mental weakness’ or crazy has always been attached to ME/CFS and even when I was well again, I would see that association flash across a persons face whenever I told someone that I was once sick with ME/CFS. Suddenly, even though they had only seen me healthy, I was dropped down a few notches in their estimation. I became less then whole. Damaged with the potential to be weak or needy. Maybe even a burden. So I hesitated.
Then I thickened my skin and plunged forward, knowing that the more we talk about ME/CFS, and the more we engage with the main stream, the better the odds of getting to the answers for this cruel disease. And as I voiced that I had once been bedridden with ME/CFS, the response was OK. Better than I expected but it was still tinged with a bit of stigma. And it renewed my determination to be part of the conversation because so many of those who are struggling with ME/CFS frequently disappear from view.
Are you getting the crazy stigma when you talk about ME/CFS? How are you dealing with it? Please COMMENT or Send in your thoughts and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
 © 2011 TSM My apologies for missing my blog last Tuesday but even my hardened 11th grade French teacher would have given me a bye week. My son had surgery which hospitalized him for six days followed by a readmission due to complications. During the many days I spent with him wading thru the copious obstacles of our medical system, I noticed all the families who were also spending their holidays in the hospital. I thought often about how I coped with holidays back in my ME/CFS days.
Basically, I had to abandon all visions of ‘the ideal’ holiday, whatever that meant. While I was still riding the rollercoaster of denial, my holidays were horrendous push/crash cycles. Mostly crash. After I started following the protocol, it was an anguished series of choices to try to stay within my known limits. Whatever success I had was tinged with a dose of guilt and a tad of anger at the medical system and its failure to unravel the mystery of ME/CFS. But my holidays did get better as I came to understand my version of ME/CFS and what worked or didn’t.
My son came home last night and we are hopeful that he’s home to stay. How did you cope with your holidays? Were you able to manage some balance in your energy expenditure or was it push/crash? Please COMMENT or Send in your thoughts and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
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