Category: Patience

ME/CFS Lost Opportunities? – Just Postponed

8/28/2018

A few summers ago, I spent a weekend with my niece and her young family at the lake. My grandniece was three and was so much like my daughter was at that age – the bright smile and giggly laugh. The difference is that I could play with her, dance with her and even pick her up. When my daughter was a baby, I was in the depths of ME/CFS and couldn’t hold a glass of water let alone a fifteen pound baby. I missed my daughters’ time as a baby and toddler. Even when she was three, I was still unable to pick her up or do active play with her.

Did I miss out on an experience that I can never get back? One could look at it that way. And of course, I can’t get it back with my daughter. But spending time with my grandniece was such a wonderful gift. It was like recovering that lost experience. And my daughter was there too. She had just turned twenty-two. It was a joy to see her holding her cousin on her hip and playing with her.

If I had tried to ‘do it all’ with my daughter, I know that I would still be struggling with ME/CFS. It had such a profound hold on me that it took dedicated focus, to the exclusion of all else, to get well - even the joys of my daughters’ babyhood. I did find ways to enjoy her and be her Mom but they needed to be energetically limited. And I would do it the same again because now, and for the last eighteen years, I’ve been a full participant in my life, her life and the lives of all my loved ones. So now I plan to see my grandniece as much as possible and revel in this new opportunity to recover something that was just postponed.

Are you balancing choices that might be missed opportunities? Are you planning ways to recover them later? 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

2 Comments

ME/CFS Rest – Ease and Release

1/30/2018

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I’ve been thinking about what rest is. Some would say it’s the opposite of physical action – inaction. Some would say it’s a state – at rest. I think of it as a combination of stilling the body, the mind and the spirit. Without all three, for me, it isn’t true rest.

When I was struggling with ME/CFS, I spent many long periods of time in bed – supposedly at rest. But for many of those hours I was either completely awake or in a semi asleep state. Although my body was horizontal and only moved occasionally, my mind was grinding - either hung up on one particular worrying thought or bouncing all over the subject map. My mind was definitely not resting.

Then sometimes I could accomplish a period of time when my mind was quiet and my body was still but my spirit was low. My attitude and my outlook were down. So I was still draining my energy allowing it to ooze out of me as I sat in a negative place about my situation.

Ultimately, for me, true rest came when my body was still, my mind was at ease and I released the emotionally heavy weight of my situation so I could lift up into a place of real rest. In those moments when I was able to accomplish true rest, I could replenish my energy and take steps toward regaining my health. How do you rest? 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

3 Comments

ME/CFS/SEID Strategies – Give Them Time

4/18/2017

2 Comments

I’ve been working on some changes in my life, as we all do from time to time, and I’m running into an obstacle – Impatience. For some reason, I’m finding it hard to give myself the time and space to follow through on my approach long enough to see real change. And of course, as I realize that I’m the one standing in my own way, I remember how hard it was to be patient when I was struggling with ME/CFS/SEID.

In the beginning, the frustration and anger I felt about being sick siphoned off a lot of my precious energy. But the hardest hit I took was from impatience. After I began to be proactive about ME/CFS/SEID – not waiting for someone else to find the answer to my illness – I had difficulty giving my strategies the time they needed to feel the effects. I wanted to see improvement quickly. At the start, I wanted to see results over the next few days. And if I didn’t see any improvement, I’d abandon that strategy and try something else. As you might imagine, I dismissed several good strategies quickly without giving them the time they needed.

Luckily, I finally understood that in my haste, I was running out of ideas. So as I recycled some, I took more time and began to see real progress. Are you giving your strategies the time they need to succeed? 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

2 Comments

ME/CFS Lost Opportunities? – Just Postponed

ME/CFS Repetition – Keep Your Sanity

ME/CFS Rest – Ease and Release

ME/CFS/SEID Strategies – Give Them Time

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ME/CFS Lost Opportunities? – Just Postponed

ME/CFS Repetition – Keep Your Sanity

ME/CFS Rest – Ease and Release

ME/CFS/SEID Strategies – Give Them Time

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