Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
One of the things I've struggled with most in my CFS journey is the 'I can't mindset'.
We have been taught to accept that we can't do the things we used to. We have been reprogrammed to look ahead and anticipate what we will not be able to do and adjust accordingly. Truth is our bodies are not what they used to be. But do we know what they are capable of now?
Do we enjoy or capability or wallow in our incapacity?
I crashed in February and for 5 months could not do much more than sleep, and pray. I returned to work recently with much trepidation, I 'knew' my body wasn't ready. Then the 3day per week arrangement started demanding 4 days in office, then 5.
Last week I had 12 client meetings in three days. All in different locations. On the final day I realized that I would have to walk to the offices of the last three clients (there are no words to explain the dread I felt). I was already exhausted plus I'm on antibiotics which suck the life out of you, I was already wanting to just fall over the darn desk...
But I did it. Walked, managed to stay on my toes of 2 hour long meetings, and then did it again .. and again. Saturday was a rough day, I wasn't feeling so good yesterday and am very tired today BUT I DID NOT CRASH.
We get so used to feeling like crap, to our bodies quitting on us. We get used to the massive crashes after we push ourselves too hard. We get so used to our incapacity we give up on finding our what we are CAPABLE of.
I get the theory of managing our energy envelope. I am proposing the flip side to that theory. Managing our CAPABILITY envelope. Finding ways to switch our focus from our incapacity to our capability. Finding ways to motivate ourselves to move forward and GET BETTER, bit by bit, day by day.
We learn to accept that sometimes we get halfway up the mountain, then we roll all the way back down. That is our reality.
But maybe the next time we try we'll make it 2/3 of the way. Maybe the next time we fall down we only roll halfway down the hill.
So maybe we accept that the grand leap is not something which will come every day. But let us NEVER ACCEPT that the grand leap is NOT POSSIBLE!
I hate living with CFS. But I express gratitude every day because there are much worse illnesses out there. It doesn't diminish the impact CFS has on my life, but it allows me to be grateful for CFS rather than cursing it. I view CFS as a challenge put into my life to help me grow, emotionally, physically and spiritually.
I will continue to focus on my capability, on the days when it is high and on the days when it is low. I coined this phrase when I was in one of my low days..
"If today, all I can do is dream, then let
I encourage my DS friends to look within and see what your capability is today. Celebrate it, do something with it, enjoy it.
Because we are still alive, it is our choice to LIVE!
We have been taught to accept that we can't do the things we used to. We have been reprogrammed to look ahead and anticipate what we will not be able to do and adjust accordingly. Truth is our bodies are not what they used to be. But do we know what they are capable of now?
Do we enjoy or capability or wallow in our incapacity?
I crashed in February and for 5 months could not do much more than sleep, and pray. I returned to work recently with much trepidation, I 'knew' my body wasn't ready. Then the 3day per week arrangement started demanding 4 days in office, then 5.
Last week I had 12 client meetings in three days. All in different locations. On the final day I realized that I would have to walk to the offices of the last three clients (there are no words to explain the dread I felt). I was already exhausted plus I'm on antibiotics which suck the life out of you, I was already wanting to just fall over the darn desk...
But I did it. Walked, managed to stay on my toes of 2 hour long meetings, and then did it again .. and again. Saturday was a rough day, I wasn't feeling so good yesterday and am very tired today BUT I DID NOT CRASH.
We get so used to feeling like crap, to our bodies quitting on us. We get used to the massive crashes after we push ourselves too hard. We get so used to our incapacity we give up on finding our what we are CAPABLE of.
I get the theory of managing our energy envelope. I am proposing the flip side to that theory. Managing our CAPABILITY envelope. Finding ways to switch our focus from our incapacity to our capability. Finding ways to motivate ourselves to move forward and GET BETTER, bit by bit, day by day.
We learn to accept that sometimes we get halfway up the mountain, then we roll all the way back down. That is our reality.
But maybe the next time we try we'll make it 2/3 of the way. Maybe the next time we fall down we only roll halfway down the hill.
So maybe we accept that the grand leap is not something which will come every day. But let us NEVER ACCEPT that the grand leap is NOT POSSIBLE!
I hate living with CFS. But I express gratitude every day because there are much worse illnesses out there. It doesn't diminish the impact CFS has on my life, but it allows me to be grateful for CFS rather than cursing it. I view CFS as a challenge put into my life to help me grow, emotionally, physically and spiritually.
I will continue to focus on my capability, on the days when it is high and on the days when it is low. I coined this phrase when I was in one of my low days..
"If today, all I can do is dream, then let
I encourage my DS friends to look within and see what your capability is today. Celebrate it, do something with it, enjoy it.
Because we are still alive, it is our choice to LIVE!
It's great that you could do more without crashing1
It is just in the very back of my mind - I worry that I will crash soon - each time I push myself a little more. I did have a mini crash last Friday and slept for 6 hours in the afternoon.
Here's hoping we are increasing our capability. Cheers Max.
I followed the advice I found about coping with this illness...stopping before I get too tired, avoiding strenuous exercises, rest, rest, rest.
Then one day I fell on some sloping ground near my carport and couldn't get up. I was just too weak. Eventually I rolled around enough to get onto my knees and struggled to my feet. But it took a while.
Since then I've changed my coping strategy drastically. I try to do something strenuous every day...weight lifting, property maintenance work, hoeing in the garden, digging. At first it made me very sick, but I was fed up with being an invalid. Eventually I reached the point where I could tolerate more exertion and my strength came back...partially. This process took months and months. I'm not back where I was before I got sick, but I'm in better shape now than I was when I fell.
I think that shunning exertion can lead to much worse disability through deconditioning. I can only speak for myself and my own experience. This is a tough issue we all have to decide for ourselves. This infuriating illness doesn't come with an owner's manual.
While it's true that exertion can make symptoms worse, I think it's also true that exertion isn't always a negative thing. Listening to a dysfunctional body as it sends out incorrect signals doesn't sound like a great strategy to me. I've been exercising for a couple of years now, and I'm not dead yet.
If it does kill me, I'll post on the board to let you know what happened...LOL.
I have practically been beaten to death by other people's 'you are scared of exercise' stuff. In the wrong hands and at the wrong time it's very dangerous. That being said there comes a time when the body can do more. It's definitely important to never give up, but I think there are different ways of moving forward for everyone and at different stages.
Then when you're all stressed out and burned out from all this...someone comes along and tells you that all you need to do is take vitamins...or have a lot of sex...or drink peroxide every day. Yes, I've actually heard all those and a lot more like them.
Where I"m going with that is this--I took a trip to London for school Ten days on a busy schedule, walking most of the day (5-8 miles per day), taking stairs, and some nasty hills, too. But my family wasn't there. No one else depending on me. No one to say "hey, stay up late tonight" or anything like that. I toured with the class, wrote my assignments, and when in my room I slept. No negative Nancys pandering on about the latest annoyances. That environment gave me a peace that I rarely see at home and enabled me to physically do more without crashing than I normally would. TBH, my legs were in incredible pain the entire time from the walking, but I was able to push through. Environment is important, at least for me.
However in the past I have had the ability to work part time, drive from Arizona to Florida, be with my grandchildren keeping up with the three year old, and cook Holidayeals for my son and grandchildren. I had the Adrenaline flowing and sometes I crashed and other times I felt just fine. So, there is no understanding this cycling illness. It behooves us and runs like a roller!
I am starting to move a bit more presently and will do gentle yoga asanas for strengthening. Meditation helps me to move forward in Spirit, which then translates to physical. I hope to be with my grandchildren in a few weeks and this form of stimulation truly sparks my body into energy resources I didn't know existed.
Yes, I do the push, but only if my body will follow through. There have been many instances when I tried pushing and my body just said, "No Way!" As I said there isn't a magic system for this body. I just do the best I can, when I can.
Thank you for this topic Max, it evokes the positive within.
Yes, I do th