Most of the time, I accept this strange new world I live in. I may not like it, but I've come to a point where I understand my limitations, and I've become accustomed to the routines and restrictions of my new life. I don't think twice about saying no to things that are beyond my level of stamina or taking a daily nap or even constantly assessing how I feel in order to know what I can and can't do. But every once in awhile, the bizarre reality of life with CFS hits me suddenly. I had a moment like that this week.
I was reading a magazine filled with articles on fitness and exercise (I know, I know - why torture myself? I am always browsing magazines looking for new markets for my writing). Anyway, I'm looking at all these tips on health and exercise when the absurdity of my current life just hit me like a slap in the face.
How did I get here? How did I go from a very active, highly energetic and fit woman to my current state lying here on the couch, aching all over? It's crazy, isn't it? Absolutely senseless. There's simply no way to explain it in logical terms, despite all my research and reading on the physiology of CFS. It defies rational explanation.
I actually felt great yesterday - really great! Craig went back to school after two days home sick (was it only 2 days?), and I actually went shopping. I've been trying to go to Kohl's to return some things for over 6 months. How sad is that? Six months. I was so excited to go to Kohl's! I felt good all day, but I did way too much. I find it so hard to not overdo on those rare good days.
So, today, I'm back on the couch, aching and worn out and having to ditch all my plans for the day. What a strange way to live.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
I really relate to this Sue. How did I get here???? My mind wants to do so much and my body wants to heal so badly....so how did I get here...
ReplyDeleteSending you gentle hugs today for a day of rest and healing that will bring you a vertical tomorrow!
Thanks, Renee!! I really need those virtual hugs today. I felt even worse after my nap than I did this morning, and I'm really feeling down. I just want to give up and crawl into bed...but my whole family is coming to visit for the weekend tomorrow! Thanks for the kind words and wishes!
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Hi Sue-
ReplyDeleteHopefully someday in the near future science will be able to tell us how we got here and how to get out of here. I am really struggling with how to get involved with advocacy any way I can. I'm trying to figure out where my little energy and money can best be used. I am a member of CFIDS Assn. but want to contribute in other ways. Do you have any suggestions? I'm also writing letters to Congress even though I'm cynical about the whole process.
My husband and I caught really bad colds last week and my doctor had me triple my Isoprinosine and restart Amantadine at 3/day. I felt literally like I was dying. It also really gave me strange mental effects. I felt like I was going mad. Why in this illness is it so accepted that "herxing" is a good thing?! I stopped the meds and am feeling back to "normal." Our bodies are already so worn out and I'm starting to doubt the whole "herxing" thing. I "herxed" for months on Valcyte with no improvements even though I was told if I felt bad it was a good thing!! Crazy!!
I can relate to this too. After a while the new regime becomes second nature and suddenly something will put you in mind of how it used to be. How did this happen? This wasn't part of the Plan. There is so much loss to deal with.
ReplyDeleteI hope you come out the other side of your crash and have another great day in time for your family visit. Wishing you all the best . .
Sue~ You worded exactly how I feel -- I've come to accept it and then something slaps me in the face with how bizarre this life really is. Accepting it doesn't mean it makes sense -- we may understand, but that doesn't mean we can explain -- especially to the rational world. All I can say, is that we should all try to enjoy this strange world as best as we can -- even if it does mean overdoing it on good days and paying for it the next day. Just remember how exciting Kohl's was! I personally wouldn't want to give up that excitement :)
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