Thursday, November 23, 2006


Warning: This is not a light hearted post about knitting. It is, however, an honest post about life with CFIDS.

CFIDS is a cruel mistress. She is a self-absorbed, controlling bitch who leaves no part of my life untouched.

On Monday, my husband went from his office to the emergency room with heart palpitations. DM works downtown, and he begged me not to come to the hospital. I understand why; he was in no danger and he knows what sitting in a hospital does to me physically. So my father eventually took my place; he sat with DM while they waited for a doctor to tell them that everything was fine. DM is having palpitations from a combination of stress, caffeine and medication. Everything can be tweaked and managed.

I spent the intervening nine hours in a state of tortuous panic. My husband needed me, and any normal wife would have gone to the hospital. My mother offered to take me downtown, or go in my place. The only reason I did not go to the hospital was because I knew DM would be more worried if I was there. So I sat, in this prison I call my home, and waited and worried.

Since coming home from Washington, DC on November 5th, I have been out of my house for a total of 2 1/2 hours. My symptoms have not yet returned to baseline, and neither has my activity level. Adrenalin and stress are very hard on the CFIDS body, and so the last two days have brought renewed symptom exacerbation as part of the fallout from Monday's scare. To say I am under "house arrest" does not begin to describe this experience.

But I am blessed, and I force myself to remember this. My beloved husband is fine. I am surrounded with loving family and friends, any of whom would have dropped everything to help me on Monday. I must maintain this frame of mind. If I don't, the anger I feel towards CFIDS will turn me into a bitter, raging shell of a woman. I refuse to go through my life, such as it is, in this way. I will not let CFIDS have what she wants: my spirit.

I fight a strange battle each and every day, a battle to be happy and content while I strive to heal. But deep in my heart, I feel a seething hatred. I hate CFIDS more than I have ever hated anyone or anything. I wish I could wrap my hands around CFIDS' neck and choke the life from her. The best I can do is defend the battlements around my spirit, and refuse to surrender.


Anonymous said...

Thank you for that moving post.

I've not said this before, but I too suffer from ME/CFS. As frustrating as the limitations can be, and as painful as the symptoms are, the worst part is losing your joy of life. Nothing is as important to maintain than that. Without joy you have nothing.

Keep fighting sister.

Knittah said...

Mr. Man's Wife, I had no idea you have CFS/ME too. You are absolutely right: without joy we have nothing. I'm grateful that you understand!

Anonymous said...

I suppose that's why it's not too difficult for me to understand Mr Mans limitations, although he is limited in different ways. Also it makes it easy for me to show patience with him, as he has had to be (and still is) so patient with me in the past.

You also sound like you have a very loving and understanding husband.