Snoopy
Junior Member
It's a dogs life
Posts: 70
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Post by Snoopy on May 28, 2002 4:12:24 GMT -5
Besides of course the aches and pains, forgetfulness, fatigue etc I think the hardest thing for me to deal with is what other people think and say.
I have heard things like you were tested for everything and you had nothing so you are not really sick....never mind I got a diagnosises from a cfs specialist.
Another annoying thing is when people say oh ME is really bad you are lucky you don't have that. Then I explain cfs is the same as ME and I hear oh no you would be in much more pain. How do they know how much pain I am in? Because I force myself to try and function somewhat normally I appear to be ok I guess.
I am also on sickleave from work and it annoys the piss out of me when I hear my co-workers ask every time they see me...oh you look good when are you coming back to work?
I am very lucky I have a partner that supports me, understands ( as well as a non sufferer can ) and does alot around the house.
I would like to hear what you all have experienced with other people and your illness.
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Post by TishArby on May 28, 2002 8:12:31 GMT -5
i really agree with what your saying, when i had blood tests for this that and the other i still dont know what they actually tested me on, and still when i see my doc i dont feel she helps me much...
my friends know that i am unwell with the pains but they havent seen me as i live too far away from where i used to. so they dont really know but have lost touch
my friend who i met through school my little boy is in the same class as her daughter ive told her about my fms and she is fine with it and offered to help if i really need it, as i would her if i can and she needs it...
as for family, my mum, im really not sure, how she thinks or feels i tell her how i am feeling and she;ll say aww,
but she hasnt seen me in pain maybe a bit of a ache but not when i have a mega flare up.. only time she see me in pain was after i had haydn and i could walk for 6 months
my brother i think he suffers mildly with the chest as he gets same pains as me... so he kind of knows how i feel.
hubby, is sympathetic and helps as much as he can as hes out at work. he knows what it is like as his sister suffers fms for 10yrs now, she is quite bad with it, but i think thats the way she copes with it..
hubbys mum.
i get the impression she thinks im making it up to get attention or that i want to be like her daughter.... and theres no way id want to admire envy someone in this way... if i did id copy clothing styles etc...
i am seriously in pain.
mum-in-law hasnt really seen me in pain either,.. i shut it out, thats why i think she thinks im making it up... father-inlaw see;s me daily as him and hubby work together and hes seen me forgetfull in pain and he knows i am not making it up...
some days i can do more things than others doesnt mean i am better.!!
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Snoopy
Junior Member
It's a dogs life
Posts: 70
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Post by Snoopy on May 28, 2002 9:32:30 GMT -5
yeah that gets me to...because I am having a good day my MIL thinks I am cured or something. If I have a flare up later she says things like oh I thought you were better or oh you sick AGAIN. But what my inlaws think shouldn't bother me. They have their own ideas about alot of things that don't go with the way I think. I am glad my honey isn't like the rest of his family  |
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Post by anonymous on May 23, 2005 13:43:14 GMT -5
I hope I'm replying in the right box. As I said before earlier somewhere on the message board, I was not understood by others particularly my own doctor who I had went to for many years. Although I have had CFS, fibromalgia, and other autoimmune problems, he refused to give me a disability. They thought I was making this all up on my job. I have been so upset with the doctor and of course won't go to him anymore. I did retire early but it's a struggle to live (I would have had a little bit more money to live on which I needed had he given me disability. It makes no sense at all. I have been through so much with fatigue, pain and I couldn't believe the doctor would treat me this way (I also understand other people had some problems with him). Besides of course the aches and pains, forgetfulness, fatigue etc I think the hardest thing for me to deal with is what other people think and say. I have heard things like you were tested for everything and you had nothing so you are not really sick....never mind I got a diagnosises from a cfs specialist. Another annoying thing is when people say oh ME is really bad you are lucky you don't have that. Then I explain cfs is the same as ME and I hear oh no you would be in much more pain. How do they know how much pain I am in? Because I force myself to try and function somewhat normally I appear to be ok I guess. I am also on sickleave from work and it annoys the piss out of me when I hear my co-workers ask every time they see me...oh you look good when are you coming back to work? I am very lucky I have a partner that supports me, understands ( as well as a non sufferer can ) and does alot around the house. I would like to hear what you all have experienced with other people and your illness. |
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Post by Alaina on Mar 12, 2010 10:02:45 GMT -5
Yes I do understand.
I was diagnosed with ME over 2 years ago and work full time. The ME has meant that I have had to hand my notice in at work and leave in just over a months time.
People don't understand and are generally ignorant to the pain we go through each day. It does really annoy me. I think most people feel it is an excuse for a lie in - what little do they know.
A
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