Posted , 5 users are following.
I thought it might help to talk to others with cfs after all.these years of varying degrees of the illness I tend to try and hide it as get fed up with the stupid comments.
I'm 51 now.
I know others are much worse than me as mine does fluctuate depending how much I've tried to do. The depression and anxiety dont help. Just never spoke to another person before with this condition.
1 like, 8 replies
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kezza166 kay47840
Posted
I have managed to get to the point where I am better than I was but it does vary for me too. I come on here now and again, sometimes just to see how other people are getting on, sometimes because I see a post from someone who is really struggling and try to support.
It is just nice to talk about how it is going sometimes I find. I do quite well because I manage to work but I am very lucky that my job is only strenuous now and again and I work from home so I get chance to hide the aftermath ahahaha
kay47840 kezza166
Posted
Thank you for replying.
Do you always tell people you have this condition?
I try not too as I find other people's thoughtless comments too upsetting.
Especially when I feel awful and someone says I look OK or everyone gets tired -( I could just cry.
Or you can't be that bad I saw you walking your dog ect like I am just a drama Queen or feeble.
I had to loose contact with my sister as she was dragging me down so much with hurtful comments
andrew22534 kay47840
Posted
I talk about it quite openly and supply all the latest info, for example the Norwegian and Australian research which shows the inflammation markers and shows the changes in glucose metabolism, and switch to either amino acid or fat metabolisms bias... I go with demonstrating the illness and its actuality rather than we are just "unwell" etc and yes the cruelty of people is shocking even worse when its friends and family...
kezza166 kay47840
Posted
kezza166 andrew22534
Posted
elaine62759 kay47840
Posted
Hi Kay
?I'm the same age as you and have had CFS/ME for over 20 years. My illness has also fluctuated over the years although it has got worse the last few years. I don't always tell people I have it as I get fed up of the unhelpful comments too. When out with my dog I've told some people before and have seen people totally change towards me. Some people actually cross over to avoid speaking to me! But others have been very nice about it and make a point of asking me how I'm feeling. A lot of the time I don't mention it unless I have to but it's nice to just have a normal conversation with someone without them judging you. Sadly a lot of people (including family) just don't understand how badly this illness can effect you. I've found the only people who truly understand are those who have it themselves.
?Have you ever tried doing guided relaxations to help with anxiety? I find them really helpful and remember feeling anxious can drain your energy too. I also sometimes do a bit gentle yoga when I'm able to. You could see if there are any local CFS/ME groups in your area where you could get to meet others with the condition. There is always lots of support on this forum too when you want to talk to someone in the same situation.
?Don't worry - you're not alone!!!
Elaine
kay47840 elaine62759
Posted
Hi Elaine
I'm not really a group kind of person I like one on one meetings and writing which is why I thought this way would help me and maybe I could be supportive of others too.
I take citroplam for depression and anxiety.
Exercise wise I walk my dog when I can.
It's nice to know we're a simular age.
My cfs does fluctuate today I'm in bed feeling like poo lol
lisa00385 kay47840
Posted
Just in response to the comments on other people's response to our illness...now I can be a real smart ass so I don't hold back anymore especially with family. God they will make you nuts if you let them. I had to dump some of mine don't feel bad. For years and I think we can all agree that guilt can eat one alive. Well it doesn't have too!! Hey we didn't choose this if I could of it would of been a illness that made me thinner not fatter. I do not tell people I have CFS never. I say I have brain inflammatory disease causes inflammation in every organ and a autoimmune diseases. That's it! If a doctor can't get it I don't expect anyone else to. If they say I look good...great a good day thanks. The people who truly care understand. You'll get over what others think. Listen most people only care about themselves. Really they aren't that interested. It is what it is. There's no shame in being ill. My 'give a s**t' bucket in regards to others reactions is empty.