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...
Hi,
Having CFS and so many other chronic illnesses has been a serious challenge. I have amended and adapted my life until it became virtually unrecognizable from who I used to be.
I take medication, supplements, swim when I can(harder to drive on my own anymore), learned low impact stretching exercises, changed my diet, did research, read everything I could get my hands on, rested and now 13 years in, I am seeking ways to accept who I am.
It feels like the "Wizard of Oz" has been playing over & over again. I have played the part of every major role in that story.
I have been Dorothy trying to find her way back home. The Tin Man seeking his heart. The Lion searching for courage. The Scarecrow, thinking if I only had a brain. And wanting to be the Wizard, to come out from behind the curtain and find a solution.
I have gone through every stage of grief, used countless hours seeking the best quality of life possible. Perhaps it is because there are so many illnesses compounding my day that I have reached a point of longing. To just be...to live this quiet little life to the best of my ability, with all I have learned.
I want to be a part of this CFS Family...I don't have the grit or stamina to
do as much as I used to. I can only mono-task now. I need to accept that I have done the best I can do. It is time to live in a state of acceptance.
I don't mean surrender, giving up or giving in, I truly mean acceptance. It is all a tight rope, so hard to get from one platform across that thin wire to the safety of the other side.
I have been given so many recommendations for cures and sustained all the little remarks. They (practitioners/friends/family) say so many things that impact the spirit of the one who is ill and need support, proactive solutions and care.
But there we are, trying to understand what is happening to us and in our weakened condition find ourselves undermined in many ways.
It takes time to find a good support team in the medical community and within our own circle of family & friends.
It takes a strong individual to deal with the conditions, it takes a strong mental reserve to stay the course. It also requires a great deal of forgiveness of those who do not know, but have so many pat answers to cure you.
One day I sat at my computer and attempted to write about the invisible suit people with chronic illness wear day in and day out. I tried to convey what it feels like through the course of a day. This was within the confines of my personal journal.
I received several private messages from someone challenging every thing I wrote. I was pretty astonished by the level of criticism and judgment this person revealed via private messages.
At the most I would hope for support, a kind word, a hug. At the least I would hope that someone would respect my self-expression. These are my feelings, my thoughts..they are not wrong, they belong to me.
I was strong enough to let this person go, but the sticks and stones hurt. It felt like a festering thorn in my paw. It is hard to process why someone is so angry about a journal post on the invisibility of chronic illness. Illness that has such far reaching impact on so many people. Why? I thought of the comments I had heard before. These private messages were like being a fly on the wall inside someone's uncensored mind. Being privy to the unvarnished anger, blame and cruelty that exists in the minds of some. A survival of the fittest mentality shoving me off the island to die kind of opinion that is shocking in its level of bullying.
I felt so low to the ground, losing my center, my purpose, my inspiration to speak about this illness with intelligence and care. While I'm not a scholar, there was nothing wrong with what I expressed. I had centered the post on what it feels like physically to navigate the world impacted by chronic illness.
It took me time to truly let it go. I want to advise you all to take good care of yourselves. To continue to seek the very best in those you invite into your life. You matter, you are precious, you are strong, intelligent and resourceful. You can do this, one step at a time. Your life has value and meaning. Reject uninformed opinion and stay the course, find the best quality of life possible.
Having CFS and so many other chronic illnesses has been a serious challenge. I have amended and adapted my life until it became virtually unrecognizable from who I used to be.
I take medication, supplements, swim when I can(harder to drive on my own anymore), learned low impact stretching exercises, changed my diet, did research, read everything I could get my hands on, rested and now 13 years in, I am seeking ways to accept who I am.
It feels like the "Wizard of Oz" has been playing over & over again. I have played the part of every major role in that story.
I have been Dorothy trying to find her way back home. The Tin Man seeking his heart. The Lion searching for courage. The Scarecrow, thinking if I only had a brain. And wanting to be the Wizard, to come out from behind the curtain and find a solution.
I have gone through every stage of grief, used countless hours seeking the best quality of life possible. Perhaps it is because there are so many illnesses compounding my day that I have reached a point of longing. To just be...to live this quiet little life to the best of my ability, with all I have learned.
I want to be a part of this CFS Family...I don't have the grit or stamina to
do as much as I used to. I can only mono-task now. I need to accept that I have done the best I can do. It is time to live in a state of acceptance.
I don't mean surrender, giving up or giving in, I truly mean acceptance. It is all a tight rope, so hard to get from one platform across that thin wire to the safety of the other side.
I have been given so many recommendations for cures and sustained all the little remarks. They (practitioners/friends/family) say so many things that impact the spirit of the one who is ill and need support, proactive solutions and care.
But there we are, trying to understand what is happening to us and in our weakened condition find ourselves undermined in many ways.
It takes time to find a good support team in the medical community and within our own circle of family & friends.
It takes a strong individual to deal with the conditions, it takes a strong mental reserve to stay the course. It also requires a great deal of forgiveness of those who do not know, but have so many pat answers to cure you.
One day I sat at my computer and attempted to write about the invisible suit people with chronic illness wear day in and day out. I tried to convey what it feels like through the course of a day. This was within the confines of my personal journal.
I received several private messages from someone challenging every thing I wrote. I was pretty astonished by the level of criticism and judgment this person revealed via private messages.
At the most I would hope for support, a kind word, a hug. At the least I would hope that someone would respect my self-expression. These are my feelings, my thoughts..they are not wrong, they belong to me.
I was strong enough to let this person go, but the sticks and stones hurt. It felt like a festering thorn in my paw. It is hard to process why someone is so angry about a journal post on the invisibility of chronic illness. Illness that has such far reaching impact on so many people. Why? I thought of the comments I had heard before. These private messages were like being a fly on the wall inside someone's uncensored mind. Being privy to the unvarnished anger, blame and cruelty that exists in the minds of some. A survival of the fittest mentality shoving me off the island to die kind of opinion that is shocking in its level of bullying.
I felt so low to the ground, losing my center, my purpose, my inspiration to speak about this illness with intelligence and care. While I'm not a scholar, there was nothing wrong with what I expressed. I had centered the post on what it feels like physically to navigate the world impacted by chronic illness.
It took me time to truly let it go. I want to advise you all to take good care of yourselves. To continue to seek the very best in those you invite into your life. You matter, you are precious, you are strong, intelligent and resourceful. You can do this, one step at a time. Your life has value and meaning. Reject uninformed opinion and stay the course, find the best quality of life possible.
Thanks for the post!
For me the process continues, and I grow less and less likely to push myself too hard and more likely to plan my life around my disabilities instead of planning for a scenario where I recover somehow. It's ok to hope, but there comes a time I suppose where we have to plan for a reality with a lot of limitations.
I haven't found that support team, all I have are my friends on DS.
I'm sorry to hear you had all that unfair criticism leveled at you. That kind of thing has happened to me and to some of my friends also. Congratulations on your being able to let it go. We do have to be thick-skinned sometimes, don't we? It seems like this illness is enough to endure without having to deal with all the attacks people aim at us.
XXOO!
You might think your not a scollar Serce, but you fool me, Sparrow what you wrote is awesome.
"Being privy to the unvarnished anger - "
or
"a fly on the wall inside someone's uncensored mind"
and
"It feels like the "Wizard of Oz" has been playing over & over again. I have played the part of every major role in that story.
I have been Dorothy trying to find her way back home. The Tin Man seeking his heart. The Lion searching for courage. The Scarecrow, thinking if I only had a brain. And wanting to be the Wizard, to come out from behind the curtain and find a solution."
(Blows my mind , I understand exactly what your saying, what a brilliant way to say it),
and
"I have amended and adapted my life until it became virtually unrecognizable from who I used to be."
Sparrow I've read about a dozen CFS autobiographies but it doesn't get much better than the way you describe things.
I bet youv'e got 500 more ways you have personally described your journey. The things you've learned. The ways you've changed. How life was changed for you without even so much as an if you please.
I'd love to read it if you ever write it.
sleepy D' has already used the most concise and accurate word I know to describe what I just read - 'Inspirational'.
The greatest compliment ever payed me was "Maintain your same point of aim". Sparrow "Maintain your same point of aim", "keep doing what your doing".
Al