All CFS people know their symptoms, but many of us don't know why they are there. There are some great studies and research being done explaining the reason for the various symptoms. Here is one reason that we have bad reactions to loud noises.

Hi There!
When I read your April 1997 editoral, I felt I wanted to respond. I have had ME for 13 years. When I first became ill in 1985 no one knew what was the matter; even the label CFS didn't come into being for three more years. I know all about the elements that fuel a kind of helpless rage in anyone who experiences this illness. As in the case with so many of us, I lost my job; my training and years of experience working as a Physical and Occupational Therapist all went down the drain. My insurance payments were cut off; my marriage was almost destroyed, friends and neighbors backed off and doctors were kind but mystified. Add to all these losses the unrelenting pain and fatigue I have experienced, and you have a recipe for explosive irritability.

Yes, I admit it! I am very thin-skinned, as my husband and daughter could testify. But this kind of irritability is more than the outward expression of my frustration with my circumstances. It is also a symptom of a burned out nervous system that has me continually on edge. Noise, sudden movements and unusual manoeuvers of my husband at the wheel of our car cause me incredible discomfort. I have a startle reflex that has become so violent that even a slight fright makes me feel like I've been kicked in the chest. Most often than I'd like to remember I have screamed with reflexive terror at some minor incident when in the car with my family, and then cringed in humiliation as my brain kicked in and I've become aware of the fact that there was nothing to be frightened of. Sometimes I feel that my central nervous system has a life of its own. When I "lose it" and start screaming at my husband or child it's often only after my nerves quieten down that I can feel any measure of control over the way I'm relating to the people around me.

Almost every person with CFS that I have met seems to have the thin, hyper-sensitive skin that you mentioned in your editorial. It doesn't always manifest itself in the same way from one person to the other. However, our inability to adapt to even minor stress makes us very touchy people indeed. We don't only have difficulty relating to the healthy people around us; our irritability is also easily triggered by the thin skin of other people with CFS!
So the potential for friction among those of us who have this illness is very high and makes working together that much more difficult.

I am convinced that an essential part of accepting the reality of CFS and making the best of it involves awareness of our fragile nerves and their impact on those around us. If we cannot always control our outbursts (and I for one do not always succeed), then we can learn to apologize for them simply.  We don't have to grovel. How many times have I had to say to my husband or daughter:"I'm sorry. Forgive me! I lost it there for a while. You have done nothing to deserve being spoken to in that way!" I'm still on speaking terms with both of them!! They love me, but they'd be the first to admit that it's not easy to live with me.

For most of us with CFS, irritability and a very low threshold for stress are symptoms that can have a devastating impact on our relationships. At a time in our lives where we desperately need the support and understanding of our significant others (family members, health professionals, etc.) we need to be careful not to alienate them.  We can learn to channel our anger so that its energy can be used constructively.  We can learn to admit that we have a problem with irritability and say we're sorry when we mess up. As a psychologist whom I consulted explained to me, emotional health does not involve feeling guilty about my illness and its consequences for others; rather it involves accepting responsibility for the way I deal with it. It is not my fault that I feel so exhausted and ill; however I try to do all I can to make it easier and more agreeable for the significant people around me to choose to stay involved in my life, because I need healthy relationships to survive. And, yes, I am also trying to rebuild my sense of humor. It has sadly atrophied and may be the most difficult part of my personality to resurrect, but since I have to live with myself for the rest of my life, I'm doing what I can to help make it more fun! Thanks for the good work you're doing. (We called Carole for permission to print her letter...and can confirm her sense of humor is fully functional. Ed)

Guess this explains why we're so emotional and why so little stress can cause devastation in our lives. I do not experience the same amount of intensity that Carole does regarding certain things, but I do know that I experience the same level of irritability from noise or stress and this can cause me to "lose it" (not as badly as Carole - but we are all so different), and I too have had to apologize to people in my life who may have been around during a nervous session.

Many have stated so well how we all feel and I guess the best one is the OPEN LETTER TO NORMAL by Bek Oberin.

I also have a letter My Letter to People without CFS to also try to show others just how CFS affects each of us. ******For a printable copy of this click here

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