When Chronic Fatigue Syndrome Brings You Down — It’s sometimes so hard to get back up again.
Posted by Catherine Morgan on May 23, 2007
This is a post from the site of a women who lives with Chronic Fatigue Syndrome. I wanted to post it because it’s something we can all relate to. We have those few good days. The days we think the tide could be turning. We allow ourselves that glimmer of hope. But then like a fly-swatter, the reality of Chronic Fatigue Syndrome hits us over the head, and our hopes for wellness are squashed.
I think this post reminds us, that we are not alone. It also acknowledges that this disease has the power to bring us to our knees, but we can still choose to get back up, even if it means we will be knocked down again and again. It’s both the blessing and the curse of this hideous disease.
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Sue Jackson – Learning to Live With CFS
Damn. I knew I shouldn’t have announced how good I was feeling. I felt pretty yucky yesterday, getting worse and worse as the day wore on. I practically had to chain myself to my laptop to get a little work done because I was having so much trouble focusing on my current work project. In the afternoon and evening, the darkness began to creep into my mind and emotions. By 8:30 pm, I was feeling so depressed and forlorn that I went to bed early just so that the day would finally end.
But it didn’t end. Despite the half-Ambien I took, sleep eluded me. My mind got caught in an obsessive cycle. This happens to me sometimes with a crash. It’s worse than any physical pain or discomfort. My brain grabs hold of some tiny dark feeling and obsesses over it until it spirals out of control. In this state, anything can get me going – something my mom said on the phone, some real or imagined slight from my husband – and my mind grabs it like a dog with a chew toy until it seems to take over my whole being. I finally took the other half an Ambien and somehow got to sleep eventually.
Am I crazy? Am I losing my mind? That’s how it feels. Yesterday morning, I was filled with peace and gratitude, enjoying the gorgeous weather and feeling satisfied with my life. Twelve hours later, I was a basket case, thinking that my life was falling apart. My husband came home from golfing at about 9 pm, and I pretended to be asleep just because I didn’t want to subject him to my darkness. He loves to golf and always comes home on top of the world, and I didn’t want to ruin his good mood or, even worse, take out my dark feelings on him.
What’s wrong with me? I know, somewhere in the rational side of my mind, that all of this is a biochemical thing, the result of CFIDS-influenced hormonal shifts in my brain. This never happened to me before CFIDS and now it only accompanies other crash symptoms in a predictable pattern. Right? Oh, someone out there, please tell me this happens to you, too, so I’ll know I’m not losing my mind.
OK. I’m going to try to help myself. I’ve made arrangements to meet my closest friend for lunch, so I can try to get out of the house and out of my own head for awhile. First, I’m going back to bed to try to get some more sleep. It’s the only thing that will help me pull out of this hole.
Kim said
Sue,
I know you wrote this a while ago, but I just stumbled upon this. Wow, just reading made me realize that I am not alone. I too have CFS and I agree, the hardest part of this is what this condition does to our minds. Besides the fatigue and the overall “ill” feelings, I find it most difficult to explain and cope with my anxious thoughts and the feeling that I am somehow losing my mind. And there is no escape. I hide it well though – my husband and my kids probably have no idea how much I struggle with this because on the outside, I seem normal. But like you, there are those days when I want nothing more than to get out of my own mind. It is the worst feeling ever!
But saying all of this, I totally believe that we can recover. I completely hold to the fact that there is hope. Our bodies are trying to tell us something – and I have been trying so hard to listen and to take better care of myself. I think I am slowly getting better. I have been keeping a log and documenting my symptoms, stress level, hours of sleep, and overall well being. It’s like I’m taking two steps forward and a step back. The log has been good for me. When I am down and discouraged, I can at least see something concrete that tells me I am moving forward ….
I don’t imagine that I will go back to what I was before. Maybe I shouldn’t anyway. I was such a fast-paced person who worried about getting everything right. Now, I just hope to feel good enough each day to enjoy life again and be able to help others in similar situations. I don’t know how I’m going to get there – but I will. You will, too. I will keep you in my prayers. Write if you can and let me know how you’re doing.
Kim
M said
Do not hide your emotions. It only makes it worse.
You’re not crazy, it’s obvious. Crazy people do not realize they have crazy thoughts. You have a subtype of OCD which is driven by fear of losing control of yourself.
Fear and fear alone is driving this things in your mind. Fear of losing control. Face that, accept it as a temporal condition, let it float pass you and let time pass. It will pass.
When you get caught in spiral of worry, detach yourself from it. Say to yourself, ok, what are the chances that I am going to lose my mind? You didn’t up till now, so you will not even later. Zero.
Also, AD may help. Maybe you can give them a try. I did, there is too much crap written on internet about it. You will get no withdrawal shit if you give them a month of trial. Many people have been on them and got out of it. It may help.