Category: Recovery

ME/CFS Perspective - The Inner Voice

5/28/2019

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 is be interpreted through your ME/CFS colored glasses with a dose of brain fog.

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? Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays. And consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS Goals – Celebrate Each One

5/21/2019

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The last couple weeks have been non-stop activity. We have been celebrating a friend’s graduation from college with senior shows, events, special dinners and of course the official commencement ceremony. She has been focused on getting here for the last four years and has been successful due in major part to her focus and undistracted commitment. And of course I’ve been thinking about my struggle with ME/CFS. How grateful I am to be well again and able to fully participate in the celebrations but also because she has succeeded the same way that I succeeded in recovering from ME/CFS.

After struggling for several years, trying everything we heard about and searching for the doctor who could give us the answers to my illness and the magic pill so I could get my life back, we finally realized that there wasn’t an easy answer. So we decided to try a new approach. The long term goal was to be fully well again. But we knew that there were many small goals between the present and my healthy future. We had to string many smaller goals together in order to reach the ultimate wellness goal.

And so it has been with my friend. Over the course of four years, she has set her goals one semester at a time. And for me it was this same step by step approach that finally worked. I broke the whole goal down into reasonable chunks. And as I achieved each goal, we celebrated. I’m not talking parties. Just simple recognition of what it took to get there and acknowledging the progress. This gave me the validation to keep going.

So what’s your next short term goal on the road to wellness? What have you celebrated lately? Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha

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ME/CFS Stages – Resist Rushing to the Finish

4/2/2019

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Several years ago, I was part of a committee charged with building an outdoor labyrinth at our church. We worked on this task for over four years. It was, at times, so frustrating to try to continue despite the many obstacles that were thrown in our path. There were moments when I had the urge to construct a quick ‘midnight’ labyrinth that would suddenly appear the next morning. But, of course, that would have been a weak effort, not fully sound and would not have lasted very long before degrading back into something unsustainable. The parallels with ME/CFS are unmistakable.

When I was struggling with ME/CFS, I would begin to make progress. I would actually be able to handle a trip to the grocery store. I was elated! And afterward, there was no crash. Yahoo! This was it. I could taste the satisfaction of recovery and being back to my old self. Followed by another day of moderate activity. Still feeling good. And then, in a rush, I would pick up the pace and get back to my old ways. We all know what happened next. Full plunge crash - and feeling worse than ever. I was not fully well and could not sustain the pace before degrading back into ME/CFS. Full disclosure, I’m a bit embarrassed to say, I did this several times. Several times! What was I thinking? I just wanted it SO bad, that I would rush to the finish.

Then the day had finally come, after years of planning, winning over the congregation and having a contractor lay a solid foundation of compacted crushed stone with a final layer of heavy, screed sand, we assembled the labyrinth. Led by our committee and supported by a hard working army of volunteers, we laid out the intricate pattern of stones, cutting some as necessary, to form the paths of the labyrinth. It looked beautiful and was solid underfoot. It has lasted a long time - only because we didn’t rush to the finish. We kept to the consistent, detailed pace. It was a wonderful milestone - excuse the pun. But even then, we were not done. The contractor returned and compacted the surface to ensure that all the stones stayed in place. Then they filled all the gaps with polymer sand to lock the stones together. They regraded up to the edge with loam and reseeded so the grass would regrow around the labyrinth. And we all know how long it takes for grass to grow and fully take hold. After all these years, it still looks great.

If you’re struggling with ME/CFS, please resist the urge to rush to the finish. It is SO tempting. But resist you must. How do you deal with keeping to your successful pace? 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

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ME/CFS Recovery - Every Day Counts

1/29/2019

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I have a long-term goal. And I make progress in some ways but fall short in others. It’s been a struggle. I made a recent decision to rethink my time management around this goal and remembered a favorite quote from Annie Dillard, “How we spend our days is, of course, how we spend our lives.” And I started to see the parallels between my recent approaches to this new goal and how I had initially reacted to my struggle with ME/CFS. My approach had been inconsistent and I misunderstood the need to apply myself every day to my desire to get well.

So much of what I did in those early days of ME/CFS came out of frustration and anger. But even when I moved past that, I still wasn’t focused on the importance of how I spent each and every day. It took a while before I began to see each day as a building block, which was added to the day before. And so on until I had built up a week of days, then a month of days and eventually many months and finally a year of days. That added up to 365 days in a row of consciously working toward recovering my health. When I finally understood the value and rewards of daily focus, I began to see real progress.

So our lives do reflect how we spend our days. And one day at a time, each and every day, you can make progress toward regaining your health. That’s the only way I was successful. How do you focus on your recovery every day? Please COMMENT or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

Look for my next posting on Tuesday, February 12th. And consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS Gifts – Pace Yourself

10/16/2018

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I’ve been thinking a lot about pacing - for myself, for my family, for the seemingly swirling world around me. Are we goal driven or just driven? Are we actually going anywhere? Do we arrive? Are we missing the whole point of the journey itself by never slowing down? When I was struggling with ME/CFS, I was forced to slow down. For a time, I was forced to completely stop.

It wasn’t until I began to recover, slowly but surely, that I also began to understand the ‘gift’ of being forced to slow down. Not that I recommend ME/CFS as a good path to gaining perspective on pacing your life but it was how I got the message. Making choices and pacing have become part of my new way of being. I do smell the roses now.

If you worry about what you’re missing as you struggle with ME/CFS, this quote will make you smile.

"Slow down and everything you are chasing will come around and catch you.” John De Paola

It reminds me of a Saturday morning cartoon where a dog is chasing a cat around in a circle. The cat steps off to the side and just watches the dog who continues to run around the circle. I can remember the road runner doing this to wile e coyote too.

Although ME/CFS is not the preferred method for receiving the ‘gift’ of pacing, it is the way we’ve received it. Open it up and appreciate the message. How are you pacing? What are your strategies? Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays. And consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS Reality – Commit to Being A Patient

10/2/2018

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I recently received an e-mail from a someone who has been struggling with ME/CFS for several years. Like many of us, he has been given the ‘go home and have hope speech’, has gone to the high-priced medical clinic to no avail, and has been treated by compassionate practitioners who haven’t been able to help him either.

Now, he’s as sick as he was at the beginning. Square One. SO Frustrating. And SUCH a familiar story. So many of us have gone this route of exploring every path we can think of knowing that we have a real physical illness. And only making small inroads. Glimmers of hope that eventually fade. And often, we find ourselves back at Square One.

If you’ve read my book, you know that when I got back to square one that was when we decided to turn me into a lab rat. I literally spent a year in bed on a fixed schedule no matter how I was feeling. I allowed myself to increase my activity - in very small increments - only when I had a solid period of time without any problems. This was in many ways torture for a type A like me. But I stuck to the plan because everything else had failed. I stopped looking for the miracle and focused on unraveling the clues to my own version of ME/CFS.

The biggest obstacle I had was allowing me to be sick. To be a patient. To commit to giving up functioning for a while in order to get a normal life back down the road. And I think I needed to waste all the other time on those other paths. It drove home the point that I wasn't getting anywhere going at this half heartedly. Those were wasted years anyway so what was one more year if it paid off? I know that this is not an option for many people because of responsibilities. But somehow, it’s important to relinquish our need to find the ‘silver bullet’ and get focused on figuring out how to get well.

How do you deal with the struggle between getting well again and also having a life? Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays. And consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS Recovery Goal – Our Aim is Off

7/17/2018

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If you ask most people who are struggling with ME/CFS what they want, the answer is usually, “I want my life back!” What most aim for is normalcy. The ability to be the person they were before ME/CFS. They want their family life, social life, work life and healthy life back. They want to live again. They don’t want restrictions and pacing. They want the whole ME/CFS nightmare to go away. And I was no different. I searched and searched for the magic cure that would get me from nightmare to full health again.

During that search, I crashed and relapsed so many times that I really can’t number them. It was brutal physically, mentally and emotionally. Honestly, as my daughter would say, I was a hot mess. The truth that I finally discovered is that no one can go from the cruelty of ME/CFS to full recovery in one magic step. Not even two or three or ten. And since I’ve been fully well again and I’ve met others who have fully recovered, not one of them ever found an instant cure. If there was a key piece to their recovery, it was discovered as they recovered – as other symptoms began to receded, it became prominent.

So what’s your recovery goal? Are you ready to get off the crash and relapse roller coaster? For whatever reasons, some of us need to ride it longer than others. When you’ve had enough, reassess your goal and correct your aim. I finally realized that I needed to get to a pace where I could handle things and not get sicker. A pace plateau. Something I could sustain for weeks and not crash. Then I would try a little bit more. I if could handle it, I stuck with it for a long time to ensure that I didn’t get sick. And so on. If I couldn’t handle it, I quickly dropped back a step and settled in for a while. Did I like this snail’s pace? Of course not! I hated it! But I finally got my life back. So where is your aim these days? Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays. And consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS Repetition – Keep Your Sanity

7/10/2018

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This summer in New England has seen a lot of hot weather. It hasn’t been two or three days in a row. It’s been a long conga line of hot dry days. Day after day and week after week. And it’s only the third week in July. I can’t remember the last time we had a good rain. I’m not an AC lover but it’s been on almost constantly. And inevitably when I get into drawn out repetitive situations, I think about my struggle with ME/CFS.

When I finally quit riding the roller coaster after two brutal years and settled into the protocol, it was a long, repetitive, frustrating path. Whenever I looked forward, the repetition seemed to spread out endlessly before me. Like this long hot summer, it didn’t seem like it would ever end. I had to find the courage to settle in. I needed to take it a day at a time. I needed to stick with the recovery plan and work it every day. Honestly, I couldn’t think about how slow the pace was because it drove me crazy. Much like this summer, I don’t think about how many more hot days are coming. I take it day by day. Right now, there’s another gorgeous sunny day outside my windows. The kind I hoped for in the dead of winter.

My best days of dealing with the slow repetitious pace were when I looked over my health log and saw the real progress. I was slowly making my way back to full health. And the proof was right there written in black and white. It was a balm for my sanity. Are you on the slow, repetitious path that the protocol requires? What helps you stay sane? Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha

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ME/CFS Stop – When we had other plans

3/27/2018

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Recently we were driving along with a schedule for the day. Then bang. We had a tire blow out. We were able to safely get to the side of road but that one event shot holes in the plan for the day. As we began to assess the condition of our spare tire and whether all the parts of the jack were in the truck, I was reminded of how ME/CFS suddenly forced me to change my plans.

There I was, tooling along with my life plan and then suddenly – bang – I was so ill that I was bedridden. And after going through the seemingly endless screening process, I was diagnosed with ME/CFS. Not great news.

Back on the side of the road, we thought we had everything to change the tire and started in. Then we realized that the jack crank was missing. Great – that meant that we had to raise up the car one half turn at a time. As I knelt by the car, inserting the lug wrench, turning a half turn, removing the lug wrench, moving it back to the other side, then reinserting and turning a half turn – over and over and over – I kept thinking about how ME/CFS required me to invent tools to get well because the normal methods didn’t work. And getting well was agonizingly slow. And repetitive. And repetitive. And really repetitive.

So having that flat tire abruptly changed my plans and it took more time than it should have because we didn’t have the right tools. And getting ME/CFS abruptly changed my life plans and it took more time to get well from ME/CFS because we needed to invent the right tools. What tools are you inventing? What tools are you learning from others? Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays. And consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS Recovery – Take Control

2/27/2018

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Have you had the experience of being introduced to a new perspective or way of looking at something and then suddenly you see it everywhere? Is it something new that’s popping up everywhere or had it been there all the time? Is it you who has changed by being aware or more open? From my own experience, I think it’s me. And when I truly grasp a new perspective, it seems to apply to everything.

My latest perspective is about control versus out of control. So much of our lives are controlled from somewhere else. But there is much that we can control. Not everything and not all of a certain thing, but there is much that we can tweak, reinforce and push for. Lately I’ve heard many people express to me and wring their hands about how things are happening in their lives. And they take the perspective that they are at the mercy of whatever it is. And as I hear this, my mind is saying take control. Make some intentional changes and be proactive. And of course it’s gotten me thinking about my struggle with ME/CFS.

At first, I turned over control of my illness to my doctors. But after much wasted time and energy, I finally admitted to myself that not only did they not have the answers, they ultimately just didn’t get it. A few were compassionate but that just felt good. It didn’t get me well. Finally I started to carve out pieces that I could control. I was sick of being sick and I was sick of getting nowhere. So, even though I wasn’t convinced that I really could change my SEID/CFS illness, I was so ticked off about having no answers to this cruel disease that I just started recording and tweaking. Recording and tweaking. Recording and tweaking ad nauseum.

So I just took action. I didn’t know what I was doing. But I was doing and it felt good. Would I get anywhere? I didn’t know but it felt better exerting some control. Eventually it became my path back to wellness but I didn’t know that when I started. I just needed to take some control. And it was good for my mental health. Are you taking some control of your version of ME/CFS? Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome.

Look for my next posting on Tuesday, March 13th. And consider being part of the conversation.
Be Well Again,
Martha

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<<Previous

ME/CFS Perspective - The Inner Voice

ME/CFS Goals – Celebrate Each One

ME/CFS Stages – Resist Rushing to the Finish

ME/CFS Recovery - Every Day Counts

ME/CFS Gifts – Pace Yourself

ME/CFS Reality – Commit to Being A Patient

ME/CFS Recovery Goal – Our Aim is Off

ME/CFS Repetition – Keep Your Sanity

ME/CFS Stop – When we had other plans

ME/CFS Recovery – Take Control

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