 © 2012 TSM If everyone who was suffering with ME/CFS were to write down of all the variables that affect them, it would be a long list. Life in general challenges us but add to that all of the knowns and unknowns of ME/CFS and it can be overwhelming. During the time when I was bedridden with ME/CFS, I must admit that for a good number of my waking hours each day, I cranked over that list. I allowed it to feed on the precious little energy that I had and erode my will to get well.
It was when I finally jettisoned the list and began to focus on one or two variables at a time that my health started to improve. Instead of wandering through the entire mine field where it was certain that one of them would blow up, I carved out smaller areas with a limited scope. Usually this would include a shorter timeframe to focus on and only a couple of life’s issues to act on. It didn’t always work but most of the time, it allowed me to intentionally focus the energy I had on things that were realistically within my reach.
How do you keep yourself within a realistic window? What strategies have worked for you? 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
 © 2012 TSM It happens to me every year as the end of February approaches. Although I don’t see the signs of change in myself yet, one of my window plants catches my notice. There’s a new vibrancy in its color or maybe even a tiny sprout where a dead leaf has been dropped. Something triggers my attentiveness and before I’ve cognitively made the connection, I’m trimming, repotting and fertilizing all my plants.
What my plants have all been responding to, and what I’m also caught up in, are the longer days with brighter light streaming in my windows. And I think back to my ME/CFS days and remember how hard it was day after day, week after week and month after month to keep my spirits up. To remember my resolve to keep to the protocol, to allow myself the space to heal, and most importantly to cut myself the mental slack I needed. The only time I didn’t need to be intentional about being upbeat was when the light began to get noticeably brighter at this time of year. There’s a reaction to the increasing daylight that we experience on a cellular level. I’m sure there are reams of scientific studies that have investigated this response but I don’t need to read them. My sense of renewal and optimism are palpable. And during my ME/CFS struggle, it was a natural to see this NOT as the marking of another year of this cruel illness, but as the beginning of the year when my progress would get me to the next health plateau – the next stage of recovery.
I’m hoping that you are able to harness this brighter light and natural source of anticipation to carry you successfully along your path back to wellness. How are you utilizing this bright injection of renewed energy? 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 live in New England where this winter has been unseasonably warm. I’ve had mixed feelings about it. Growing up with sledding, skiing and building forts, it seems unnatural. I miss the coziness of a cold winter - but not the hassle of ice storms and hazardous travel. The relatively warm weather could be a fluke or a harbinger of climate change. I won’t wander off on that topic…
Last week we had a sunny warm January day that reached 60. I went for a walk and felt all the usual stirrings of spring. Of course I knew that it wasn’t here to stay but the taste of it was enticing. I remembered back to my ME/CFS years when after a period of intentional good behavior, doing everything I knew about how to get well, I had a really good day. It was so enticing then to start my old life back – to forego all that I had learned in the hope that this was it. I was a gift of one day that could reinforce all my intentions to stay the course or lure me into a false sense of full wellness.
Several times I was suckered in by the gift. But after a few bad turns I got it. By comparison it put so much in perspective. So this is what it feels like to be better and feeling strong! So just as I knew that the 60 degree day was only a reminder of what was to come, avoid the pitfall of this wonderful gift of a better ME/CFS day. Revel in its potential to be repeated more often and stay the course of pacing.
How have you reacted to these gifted 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
 © 2011 TSM Recently I spent some time with an elderly aunt in her 80’s. As I watched her slowly move around with the support of her cane, struggle to see clearly and wrestle with recalling conversations, I was thinking about the slow unraveling of health that we face as we age. And I clearly recalled the similar frustrations that I felt with my low level of functioning when I was sick with ME/CFS. As it was with me, and I would image would be true of most, my memory of what it felt like to be fully healthy was compromised. I had been ill with all the fatigue, pain and brain fog for so long that I no longer had an accurate recall of what it felt like for me when I was able to fully function in my old busy life.
And it was also true of my aunt that she had adjusted her memory of what it felt like to be healthy to accommodate her declining functionality. She would say that she ‘felt well’ even though we could observe this to be inaccurate.
As I gradually began to recover from ME/CFS, I would report to those who asked that I was feeling healthy again. Then a month would pass and I would have to say to the same person that I had been wrong. Now I was feeling even better and was healthy again. Honestly, this uptick in health went on for about six months. It wasn’t until I was fully well again that I remembered what it was truly like to feel strong and ‘healthy’.
By definition, for ME/CFS patients, the chronic nature of the disease adds to the possibility that we will remember an inaccurate perception of what it feels like to be fully healthy. How long have you been struggling with ME/CFS? Do you think your memory of how it feels to be fully healthy is accurate? 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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