Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Little things, become big things. Most people would assume that this is going to be a sad tale of things that upset me, but its actually quite the opposite. I would love to tell my story of something so small, that means the world to me, and I would like to hear other other people's experiences too.
A while ago I was at a friend's party, the first party I had been to in years, he had a spa and throughout the week leading up to it, he let everyone know that we would all jump in. I was really worried, because hot water and heat makes me VERY ill. So I told him, Look mate, I have CFS, heat and I dont mix, can you make sure the spa isnt too hot? He embraced my illness and told me I do a very good job hiding my illness from people. He then genuinely asked questions and really showed he cared.
Anyway, when we were at the party it was time to get in, and although he cooled it down, it was still very hot, I put my leg in and I got terrible pains immediately, the kind that people describe as Fibro.
I freaked out. Then after it cooled down a while I got in and quite enjoyed it for a while, then I realized I was starting to get sick.
I got out and went upstairs, he had a shower in his room which no one was allowed in, but I needed to get under cold water quickly before I had a flare up. After a few minutes of the cold water I begin feeling relief, I hear him say "who the f**k is in here?" He was pissed to see someone was using his shower, he stormed in with a very angry look on his face, I could see it in his eyes! Then, it happened in an instant, he noticed it was me who was using his shower, and he must have realised I was using it because of my need to stay cool. He smiled at me and said "are you ok mate?"
That, to many normal people would seem really stupid, but to me, with this illness, it is a forever lasting memory, that someone would not only accept, but embrace my illness. Not judge me for not having a career, finishing college and being "established", just like me for being who I am.
I would love to hear if anyone else has similar experiences, small things, that to others may seem insignificant, but to them, mean the absoloute world :)
Gold bless everyone.
A while ago I was at a friend's party, the first party I had been to in years, he had a spa and throughout the week leading up to it, he let everyone know that we would all jump in. I was really worried, because hot water and heat makes me VERY ill. So I told him, Look mate, I have CFS, heat and I dont mix, can you make sure the spa isnt too hot? He embraced my illness and told me I do a very good job hiding my illness from people. He then genuinely asked questions and really showed he cared.
Anyway, when we were at the party it was time to get in, and although he cooled it down, it was still very hot, I put my leg in and I got terrible pains immediately, the kind that people describe as Fibro.
I freaked out. Then after it cooled down a while I got in and quite enjoyed it for a while, then I realized I was starting to get sick.
I got out and went upstairs, he had a shower in his room which no one was allowed in, but I needed to get under cold water quickly before I had a flare up. After a few minutes of the cold water I begin feeling relief, I hear him say "who the f**k is in here?" He was pissed to see someone was using his shower, he stormed in with a very angry look on his face, I could see it in his eyes! Then, it happened in an instant, he noticed it was me who was using his shower, and he must have realised I was using it because of my need to stay cool. He smiled at me and said "are you ok mate?"
That, to many normal people would seem really stupid, but to me, with this illness, it is a forever lasting memory, that someone would not only accept, but embrace my illness. Not judge me for not having a career, finishing college and being "established", just like me for being who I am.
I would love to hear if anyone else has similar experiences, small things, that to others may seem insignificant, but to them, mean the absoloute world :)
Gold bless everyone.
It felt good to be heard and understood and not told that I am lazy or imagining things.
Thanks for sharing this.
Every week, she would give me just one small tiny tip that would help me live better with my health issues. She knew that I could only absorb a little at a time as I was so overwhelmed with being sick and the pain, etc.
These things worked so well it made me feel so encouraged because they worked so well. Things like "when you are brushing your teeth, shift the weight on your feet to the outside" and immediately I would begin walking better, and so on. Or she'd give me a breathing technique that helped me sleep.
Little things can mean a lot!
I went in one day when I was close to the breaking point. I had been taking care of my husband for two weeks. I mean 24/7 x 2. Going up and down stairs, taking care of my two dogs with no help.
I was so thankful that Ellen was there that day. I stepped up to her counter and she said, "Oh my. You don't look well. You look so tired and pale." I told her what I'd been doing and she reached across the counter and held my hand. She said, "I'll be praying for you."
As I walked to my car I thought, "God put her in my life because I would need her today." When I got home, my husband greeted me at the door and told me he was much better and I looked like I could use a nap.
My job was done. I could rest. Thanks be to God.
i am glad u have someone in your life like that. it helps to handle better the feeling u get when people treat u like a hypochondriac. they simply have no clue. sometimes just the right words or a little hug can make all the difference.