Recovery is a concept that is viewed with doubt, suspicion and hope by many under the heel of Chronic Fatigue Syndrome. We want to get better. We have tried many treatments and techniques to do so. And most of us have crashed again after most of these attempts.
I have been moving slowly in recovery for a few years and have made surprising headway, in spite of the ups and down along the way. Am I There yet? No. But I am getting There.
Here are a few observations about this recovery process.
1) The thought of recovery is frightening.
This is not because we don't want to recover. This is not because we are really suffering from depression and are in hiding. Rather it is because it is so hard to recover from CFS and for each step forward there is the real risk of a crash to end all crashes.
It is dangerous business to step up and step out. This makes it hard to hope.
2) Recovery does not follow a straight line.
The path of recovery is a treacherous one. For every up there is a down. And with every down there is the reality-based fear that we'll never get up again.
3) Recovery is a fragile process.
And it is a longer trip than you might think. When I first started getting significantly stronger I thought, I will be healthy very soon. I began to do too much, stopped taking enough rest breaks and ended up flat on my face again for months at a time, compliments of Chronic Fatigue Syndrome.
4) I had forgotten pieces of myself.
As I continued to heal, I would occasionally be brought face-to-face with aspects of myself from my old life that I had forgotten about. Whole segments of my personality had been submerged in the CFS quagmire for years.
At different points along the way I have been reminded of who I used to be and ... took a deep breath ... reached up ... and began to baby-step in my own former footsteps.
5) We could use some help from the outside.
I had lost my old communities due to my years of sickness. I didn't know anyone outside my family anymore.
What a big help it would have been if someone from my old life had stepped up and walked ... or even sat ... beside me during my trek back into the world. But no one did.
6) Open doors would be a help.
I have stood at the top of a winding street in my town and looked down on the community below and felt ... locked out. I didn't know the people in the stores. I didn't have the energy to attend social events or spend an evening in a coffee house looking for conversation.
So I am in the paradoxical situation where I have a busy life on the net with people I work with, and friends who are part of the CFS ghetto ... but there is not as yet room for me in the town where I have lived most of my life.
7) It can be done without community assistance but it's harder that way.
I am having to do it alone. I am fortunate to have my husband and kids around me. We have started doing a few things together, Outside the House. It would be nice to have friends in my area, but I know that I will be able to re-build my life, without them.
8) We've lost more than we realize.
We think we know how much has been stolen from us in this sickness but, in recovery, there is almost constant surprise at just how much farther there is to go.
9) We don't know how to get there.
It's not just a matter of regaining strength and energy. It's not just a matter of physical healing from multisystem damage.
It is a matter of taking the tattered rags that remain of our old life and trying to rebuild in every area. Mentally, physically, emotionally, socially and financially. Tall order.
10) There is no guidebook.
Like a person whose home has been destroyed by a natural disaster, we stand (or lay in a stupor) and survey the wreckage, and wonder where to begin.
We need pioneers and guides who have made the journey to tell us how to do it. We need people who have recovered from Chronic Fatigue Syndrome who can tell us what to avoid, how to go straight ahead, how not to get waylaid or stuck.
And so far, there are precious few of these CFS pioneers who have reached the destination of full recovery. I am angling to become one of them.
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Four years ago, I found treatment that worked for me, and now I am making a comeback.