 © 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 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
 © 2012 TSM I haven’t been able to sleep much since last Thursday. My mother-in-law, who we were very close to, suffered a major stroke and then struggled mightily for a few days before she passed away on Sunday. With our hearts broken, we’ve been wading through all the ‘must dos’ as we prepare for her funeral on Friday.
And night after sleepless night, of course I began to think about ME/CFS. Yesterday, the exhaustion was so pervasive that I had a mental flashback to the lowest days of my ME/CFS years when even holding a glass of water was beyond my strength. I tried to blog yesterday but the brain fog was so thick that I couldn’t remember my thoughts for more then a moment or two. It was a long day of running on total empty. And I thought often about those who are struggling with ME/CFS and it strengthened my commitment to be part of the conversation.
Blessedly, I slept for 5 hours last night. Even my active, mourning brain couldn’t keep my body from finally getting some REM rest. This morning I feel a little more energy and a great deal of Gratitude that ME/CFS is a nightmare from my past.
Wishing everyone the strength and opportunity to regain their health. 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 When you are struggling with ME/CFS, it’s hard to see anything else. ME/CFS controls your energy, your schedule, your choices, your physical comfort, your day, your night and your outlook. Everything you consider can be interpreted through your ME/CFS colored glasses with a dose of brain fog.
For someone with ME/CFS, it’s a necessity. It’s a survival mechanism. It’s reality. And fighting this reality is fruitless. Just more squandered energy and risked relapses.
Remembering that we have restrictions eventually becomes second nature. And as much as it totally stinks, it can develop into the way forward. Acceptance of this second nature or inner ME/CFS voice can bring rewards. Better choices. Better days. Beginning to experience better weeks.
For me personally, it took several knock down relapses before I understood this dreaded voice. Some days I wanted to throttle it. The message was one that I didn’t want to hear. But slowly, eventually, I began to listen. Do you listen to the cautionary messages of your inner voice? Are you learning to pace yourself better and avoid severe relapses? 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 Before I was sick with ME/CFS, the holidays were a blur of activities in addition to the normal work and family commitments. A Healthy person struggled to get it all done.
Then I went through four holiday seasons under the constraints of ME/CFS. For two of them, I was bedridden for most of each day. As is often the norm for ME/CFS sufferers, I was pretty hard on myself. All I could think of were the special holiday things that my kids and family weren’t enjoying because of me. But I couldn’t do anything about it. So those holidays passed with me needlessly feeling down.
Then came a holiday season when I was feeling stronger – not fully well but better. And of course, true to form, I wanted to make up for the ‘lost holidays’. Ha! Lessons can be tough to learn. Gratefully, I had people around me and a voice in my own head that said, “Do what you enjoy and let the rest go.”
Now that I am fully well, our holidays are still scaled down and we all like it that way. It’s more like a delightful sampling of what the season offers than a forced and frenzied banquet. We don’t do every activity every year. We switch it out. Our gift giving is mostly donations to charities, Yankee Swaps (even with family) and special consumables (wine, soup mixes, teas, etc). We haven’t sent cards in years. I’m thinking I might send an e-card this year. Maybe…
How do you get through this season without straining your energy limits and pushing yourself into relapses? What do you happily forego from the holiday hustle and bustle list? 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 Two months ago Hurricane Irene knocked out our power for five days. This week it was a heavy, Fall snow storm that put us in the dark for three days. We just got our power back Tuesday evening and we’ve been busy since then getting our household and our lives back to normalcy.
During the outage, I was thinking about how we often take for granted the watts that invisibly supply the energy we have come to depend on to power our lights, heat, refrigeration and cooking. We don’t really think about the mechanics of how it’s produced, delivered and consumed. It reminded me of how I lived before I was sick with ME/CFS. I gave little thought to how my body generated energy, delivered it to my cells and how I, at times, recklessly consumed it as if there was no limit. My type A personality was go, go, go even when I had colds or the flu. That changed abruptly when I came down with CFS.
Now that I am well, my first thoughts are still focused on whether or not I have the energy to take on what has been set before me. Sometimes it’s a choice. Often it’s a responsibility. And I am cautious to evaluate what I can handle and under what conditions I can do it. I’m especially clued into looking for partners to help get something done. I had learned the hard way when I was recovering from CFS that the final task of simply carrying the heavy bags into the kitchen from the car and putting the food away could be the tipping point that turned an otherwise successful trip to the grocery store into a CFS setback.
What have you learned about your ‘energy envelope’? How do you keep your urge to go, go, go in check? What strategies have you developed? 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
|
RSS Feed
