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ME/CFS Recovery – It Takes Some Dedicated Time

4/23/2019

Every once in a while, I drag out my soap box…. Here I go….

I frequently receive emails from people who have been struggling with ME/CFS for way too long. This is such a cruel disease. And I know that everyone’s situation is different with demands and responsibilities. But recovery from ME/CFS, at least for me, came at a price. A very high price. I literally gave up two years of my life in order to recover. And, as you already know, I hated every minute of it up until I started to taste how it used to feel to be well. And when I got that taste, I had hope that I could recover. Full disclose: I had to repeat that ‘first taste’ experience three times before I fully understood what I needed to do next which was nothing.

I needed to stick with the protocol and rest. I needed to stay right where I was and continue to do all the self-care that had gotten me that far. And that’s when I truly began to hate the protocol. As I felt better and better, I continued with the restrictive protocol. Ad nauseam. Hated it!!

How long have you been struggling with ME/CF? What quality of life are you living? Is there any way that you could arrange your life so you could dedicate one year to only being a Patient? One year to hating the protocol. 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 May 14th. And consider being part of the conversation.
Be Well Again,
Martha

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ME/CFS Attitudes – Rainy Days Made Me Happy

4/16/2019

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It’s a cold rainy day in New England after several warm spring days. For the middle of April one might expect something different. But I’ve lived here my whole life and one can always count on the weather to change moment to moment. So today, as I settled in for a less active indoor day, I started thinking about my struggle with ME/CFS and those rainy days. One might think that like some people, rainy days would have seemed dreary and sad back then. But the opposite was true. Rainy days made me very happy.

Why? When I was struggling with ME/CFS, sunny warm days made me miserable. I wanted so much to be out and going about my life. And lovely days were a tough reminder that I was too ill to participate in my own life – in anyone’s life. Those days seemed twice as long as normal. They dragged and dragged and dragged on some more. Those days were depressing.

I must admit, somewhat ashamed, that cold rainy days made me feel like other people might have their days limited as mine were. Not with the physical symptoms of ME/CFS but the limitations on mobility. The restriction of activity and possibly some of the isolation. I felt like other people were stuck in it with me. A sort of warped sense of misery loves company. And this made me happy. OK, not one of my best moments.

As I began to understand that I needed to get off the ME/CFS roller coaster and focus on a real recovery plan, this weather influenced attitude began to change. My daily approach to healing became a matter of choice as I was no longer a victim of ME/CFS but rather someone who was on an intentional recovery path. Nowadays when I’m trapped indoors on cold rainy days, I like to make the best of it and imagine I have lots of company. And a nap is nice too. How do you relate to cold rainy 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 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

2 Comments

ME/CFS Recovery – It Takes Some Dedicated Time

ME/CFS Attitudes – Rainy Days Made Me Happy

ME/CFS Stages – Resist Rushing to the Finish

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ME/CFS Recovery – It Takes Some Dedicated Time

ME/CFS Attitudes – Rainy Days Made Me Happy

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