The first thing someone said to me which angered me was that I was intense about my illness! My friend, a doctor, laughed and said that I was the least intense person he knew. However, I think it was fair to say that when you are very sick and the doctordoesn't know what is wrongwith you 'intense; is not the only appropriate word to use.
The minister at church asked me if I thoguth I was sick because I had four boys because he knew someone who had four boys at their last church and she had ME/CFS.
I told my husband I was sick because he didn't help me enough. He replied with "Is that why Michele is sick because I don't help her enough?" Truth is, Michele's husband is very helful and she is still sick with ME/CFS after eight years.
The minister from church came and read to me from the bible, which was lovely of him, but I could not follow the story after four words!
Someone sent me a get-well card with ten bible verses for me to look up. (She thinks she has ME/CFS.) As if I could look up that many bible verses and read them!
Someone said "Oh, your hair looks nice; if your hair feels good you feel better......." Sorry, dear, but it didn't help at all. Actually, the trip to the hairdrssers wore me out for a few days.
"Meg had ME/CFS and she moved house and she became well. Why can't you do something like that?" Well, Meg's only symptom was fatigue. She took Aurorix and was well. (But I could not say that could I? It was private information.) As if I had the energy to move or the ability to look at houses or the brain to make a decision like that!
"Go and buy yourslef something. That will make you feel better." Truth is, I have $1,000 and I don't have the energy to spend it and a trip to the shopping centre always makes me feel worse.
"Be kind to yourself." That was nice.
"Oh, I think I' ve got what you've got - brain fog and muscle aches" (from a very anxious person). "Are you still playing tennis?" I ask. "Yes", she said. I don't think she has ME/CFS. However, this person has been wonderful in providing meals for my family recently and for me.
Someone pretended to be concerned about my health and all they wanted to do was sell me something.
A drive over to my son's flat would do me good. It is about 5kms, I struggle to get to the car and am far too weak to drive it. If only they knew what the brain fog was like.
My husband bought me tickets to the soccer match at the MCG after I said I did not want to go. My doctor said not to go. My husband said it, would do me good! Then he tells me his car is full, and I have to drive myself and a group of children. Our seats are at the top of the stand. I had a major relapse and I fear it has cost me my chance of remission. With regard to the soccer match, someone said, "But at least you have a happy memory. I am sure it was great." Truth is, I was in so much pain getting up those stairs, the memory is very hazy, and the game was pathetic.
I said I didn't want to go to bible study because someone had a cold. The leader said to me, "it's only a cold." She also commented on my lack of commitment to turning up for bible study.Someone who had Me/CFS for three years, said: "I told my body, enough of this, and in the morning I was well!"
Here is someone who can heal herself. She is quite ill at the moment. The ME/CFS has returned. She has not been able to heal herself this time.
"Get a funny video . That will cure you"
My mum lives out the back, and she keeps putting the clothes line up, and curling the hose around the tap, exhaustion! she says she understands.
"I think I have what you have. I am tired all the time too. I just cannot keep up with my husband." She is 15 years older than me, and she thinks she has every illness known to man!
"You don't walk enough that is your problem."
Someone who has been self diagnosed with ME/CFS : "It comes and goes. When I look at the computer screen it happens." Could be epilepsy!
And thanks to the kind soul who said, "Take one day at a time."
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