...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Energy – Intermittent

8/7/2018

5 Comments

 
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An intense sequence of squall lines loaded with lightning and thunder recently swept through our area and I hope that all in its path were safe and able to ride out the storm.  We now have our power back for good.  During the height of the storm we lost and regained our power intermittently for about 5 hours.  And it created uncertainly that kept resolving and then degrading over and over.  It reminded me of how my energy waffled during my early struggle with ME/CFS.
 
Some days I couldn’t walk across the room without pain and exhaustion.  Then, miraculously, the next day I could walk down stairs and even wash dishes feeling energized and ‘normal’.  Of course, the next day, I struggled just to find the energy to sit up and eat.  Then I would feel decent for two days.  Then a crash.  The negative cycle repeated over and over.  It was beyond frustrating, it was infuriating.  And I felt helpless and victimized.  No one had any answers.

 
The intermittent energy felt by every patient who struggles with ME/CFS makes it a cruel disease.  When I finally started taking control of my energy expenditures, I began the path to recovery.  How do you keep your energy levels consistent?  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


5 Comments
Tim Boland
8/7/2018 09:50:33 pm

I find for me, Martha, that as you describe, on a day when I do 'too much', that often the next day I am quite tired but on the day of activity, I seem to be able to keep going. I am getting better at listening to the more subtle cues, my body tells me ... and listening and then doing what is best for my body and for me, that is key.

Reply
Martha
8/7/2018 10:08:57 pm

I too eventually learned to listen. It was a tough lesson though. Thanks Tim!

Reply
Rebekah
8/8/2018 07:47:18 am

I have learned to try to plan no more than one activity a day and make myself rest inbetween. Even take breaks when just working around the house. Over time I have learned for the most part when I am pushing it. I do have a question for you though. I have noticed that emotional stress is a great contributor to how fatigued I get. I try to find ways to avoid it as much as I can, but sometimes there is just no way around it. This summer my dad has been having health problems. I have been trying to help as much as possible (living 1.5 hrs away, having a family of my own to take care of, and my fatigue on top of that). There has been a lot of family tension over whether I and another family member are doing enough to help. It has been interesting how understanding they have been of my chronic fatigue until this happened. So what do I do in these situations? I was talking to my husband about it last night and he said he thought I had been doing pretty good until all this happened (which I agree) and now have seemed to go backwards some. It has been very frustrating and difficult.

Reply
Marhta
8/8/2018 12:14:27 pm

Rebekah, Like most of us dealing with CFS, you are caught between what you need to do to get well and what others need from you. It's solid that you have found the right pacing to feel well most of the time. That's great. And family members have been understanding. But now they need something from you because their lives are being disrupted by your dad's needs. Everyone is feeling stressed. I don't know what kind of help they're asking for: taking him to doctor's appts, caring for him, running errands? I encourage you to look at what he needs. Then take control of what you can do that is reasonable. Then be clear with your sibs that you want to help and that you can do the following etc on a weekly/monthly basis. These are the things that you can handle due to your own health issues.
Basically be ahead of it so you don't get calls on short notice asking you to do things that are beyond your capacity or will trigger your crash cycle. There's nothing easy about dealing with an elderly parent who needs assistance and getting help from sibs. I'm in that place too. Good luck and let us know if you work something out. Above all don't get yourself sick so that you can't even help yourself. Unfortunately, we've all done that!

Reply
Rebekah
8/9/2018 10:00:07 am

Thanks Martha! Those are all things I needed to hear. Things have settled down a bit because he is doing some better but in the future I will try to be more forthcoming in explaining exactly what I will be able to handle ahead of time instead of when each situation arises. The biggest thing now is not feeling such a burden from the guilt some siblings have placed on me. Always something to work on! 😜 Thanks again!


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    Hello,  I'm
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    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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