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ME/CFS Double Life – Two Identities

3/25/2014

4 Comments

 
Picture© 2014 TSM

When I was at my lowest point suffering with ME/CFS, it seemed like I had only one identity – a bedridden sick person.  As I slowly began to regain some functioning, I would have brief periods of experiencing a different identity – a normal healthy person.  This happened when I had a conversation about something I was passionate about and I could keep focused for ten minutes or maybe even half an hour. During that time, I forgot about ME/CFS. I stepped out of that label and, for a while, became free of it.  Then, of course, it would end and I would ‘remember’ my situation.

As I grew healthier, I got to the point where half the time, I could actually participate in some normal healthy person activities and relish for a while in forgetting about ME/CFS and its cruelty.  But it would end and I would have to ‘remember’ again.  Straddling both worlds of sick and healthy was not only a physical challenge in terms of pacing, pacing and more pacing.  It was a mental marathon ‘double life’ of moving back and forth between these two identities.  Of learning to appreciate and revel in the times of acting and feeling like a healthy person and then handling the let down of remembering the reality of my situation.  I worked hard at not letting the upside create an even lower downside.  I kept my eyes focused on shifting the percentages – slowly and steadily – to more and more normal health person and less and less sick person.

How do you handle the Double Life of sick and healthy?  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

4 Comments
Tim Boland
3/30/2014 04:08:26 pm

I just received a comment from a friend tonight on a social network, who has been feeling tired lately - not CFS - and she said something interesting, that we feel the tiredness and not feeling well more so in the evenings.

I enjoy it when I get up after a good sleep at night, which is made possible in part due to prescribed medications, one for pain, the other for sleep. Often I have gotten to the place now where I feel good in the mornings, then if I do too much, or even if I don’t do a lot, I tend to have a let down feeling in the afternoon.

I’ve tried to honor this as I know that caring for my body is key to feeling well not only for that day, or at least feeling better, but also with an eye toward recovery. Also on a favorite show, The Mentalist, he made the most interesting comment to a young man ‘always trust your instincts, they are always right’. I feel that when we listen to what our body is telling us, if we are attuned, those instincts are very often just right.

Thanks again Martha for another very helpful column.

Reply
Martha
3/31/2014 03:38:49 am

When I was struggling with ME/CFS, midday was my time for feeling my best - post my first nap. As the quality of my sleep improved, mornings became my time to feel the most rested. This was a huge win for me as I recovered. And as Tim has reminded us, we need to listen to what our bodies are saying. More on instincts tomorrow. Thanks Tim!

Reply
Donna
4/1/2014 12:02:02 am

Mornings are the best for me. With my short time following the protocol and making sleep a priority, I find that the evenings aren't as bad now. I can only sleep 5-6 hours at night, probably due to my wacky adrenal function, but sleep about 3 hours in the afternoon. It's often my habit to push myself to do things that I convince myself are "necessary." I'm trying to make listening to my body a priority, just as Tim said. I have an old habit of telling myself that I'm lazy if I don't feel up to par. But I know that's not true, I want to do things when I'm feeling well enough. Recently, I read somewhere (sorry, don't remember where) that the difference between ME/CFS and depression is that ME/CFS sufferers can list many things that they would like to do if well enough, but those that suffer with depression cannot. Thank you Martha and Tim for the support.

Reply
Martha
4/1/2014 01:41:01 am

The label we often receive of 'just being depressed' is incredibly frustrating. We know we have a physical disease. Not to say that depression isn't real but that's not the source of our illness. Donna, it's great to hear that you are starting to feel better following the protocol. Stay the course and hang in there. Recovery happens over the long haul. Good to hear your voice. Thanks!

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    Hello,  I'm
    Martha Kilcoyne

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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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