Welcome to the Community Room! introduce yourself and say hi
Hi, Helen, Please to meet you.
Hi, Gerty. Please to meet you.
Hi, Tina. Please to meet you.
Hi, Kate, Please to meet you.
Hi, Maria. Please to meet you
Hi, Muscleburn, please to meet you.
@donnamarie Thank you. Happy to meet you too. I will look for your introduction.
@donnamarie Hello again. I found your introduction! I agree ME/CFS is a horrible disease.
It's my first post and apparently my reputation is zero. How does one get a reputation here and is that a good thing or a bad thing?
What sort of day is this for me? well, I forgot my user name and my password.
I worked it out and here I am.
I am a long hauler. I got my diagnosis (finally) in 1997, after 4 years. You see it was 'all in my head' for a very long time ...they kept shoving PROZAC at me. I resisted. I knew something was wrong, but not being believed wears a person down. It is hard telling people, who have kids, that I 'feel tired'. I had two luck breaks, that helped me on my way to a correct diagnosis, but I will tell you about that another time...
Too tired to read other people intros today--but I will.
Has anyone read Unseen: the secret world of chronic illness by Jacinta Parsons? She is telling my story, eventhough, her illness is not Me/cfs. We are in this book!!
OK, everyone I hope some are having a better day than me.
Bye for now
Hiya! Thanks for joining the forum and sharing a little of your story.
Great question about reputation. So you gain reputation by having people 'upvote' - basically 'like' your posts. Generally people are quite liberal with their upvotes (I upvote almost everything I see as I'm reading) because it's just like a little way of giving support. So, if you post more then you'll almost certainly get more 'upvotes'. If people post a lot then they'll get a lot of upvotes.. and then have a lot of reputation.
As a site admin this is the case with this account - if you click through and look at this profile you'll see there is a lot of posting.. and a lot of reputation from that. It's really much more of a measure of activity rather than popularity.
It doesn't make much difference to have a lot or a little reputation.. except there are some limits on how quickly you can post when you're new to the forum or have very little reputation. The reason for this is to help prevent spam accounts from coming in and filling the forum with auto-generated posts so it's just a little security limitation.
@Daffy_Dave has been doing a 'how to use the forum' type thread so this might be one for him to cover off!
This post is deleted!
Hi, Dianne. Lovely to meet you.
Hi, Anne. Lovely to meet you!
@Christine I am a long term sufferer of me/cfs too so I can relate to the frustrations and obstacles that you face. I currently live with my family on a rural property. I like the quietness of rural life but not the isolation that it brings. Hence, I mostly have online friends due to not leaving the house a great deal.
@donnamarie and pleased to meet you too.
What makes you “stand out from the pack”? If that’s an ok question
Hello everyone. I’m just joining the forum. My user name is Dave.
I am aged 66 and retired from work 12 months ago because of my CFS. This condition started 6 years ago after I got dengue fever while holidaying overseas. I have also just been diagnosed with cancer but fortunately it has been caught early and is treatable.
I have been happily married for 42 years and we have 3 amazing children and 6 absolutely adorable grandchildren.
I look forward to sharing and learning through the forum and thank Emerge for a great initiative.
Hi @Dave! Lovely to have you with us! Sorry to hear that ME/CFS forced you into retirement. It’s a cruel disease. I hope that your cancer treatment doesn’t knock you around too much.
I've just joined today.
This is the place to put a quick post telling us who you are so we can say 'Welcome'!
I’m Tess, I have had ME/CFS for over 20 years. I went to bed one night saying that something was really wrong and I woke up the next day and life as I knew it was over.... along with many dreams and plans for the future.
It was a challenge adjusting to the new way of being,made especially harder by the “ You look so good!” “I’m tired too” & a very hard one for me was “ Just as well you don’t have kids to look after!”
Having ME/CFS has also shown me the true colours of the special people in my life and the new long lasting friendships that I have made along the way because of having this illness!
So in that way there has also been many wonderful things that have happened along the journey.
In saying that, I’d love to be able to say we have a way to kick this in the butt!!
Meanwhile I am so happy to be a part of this forum.
I struggle with keeping up with social media and I’m hoping I will be able to spend more time her with all of you.
I'm a 35y/o cuddly, geeky, artistic, animal and nature loving metal head... I don't usually like labels but I wear those ones with pride.
I have an energetic soul and a spontaneous adventurous mind but unfortunately M.E (at least we think that's probably what's going on, I don't really have an official dx just a bunch of "normal" test results) has meant I'm often unable to do what I would in a fully functional body. My troubles all started when I commenced oral contraceptives and got glandular fever when I was 20. It has been up and down since then but things took a very dramatic down turn last July resulting in problems with cognitive function and a sever increase in pain and fatigue. I barely leave the house and spend most days in bed or on the couch. I have a wonderful support group around me but it's been hard.
I feel like I'm still very much grieving for a life I could be living and trying to be realistic while at the same time holding on to threads of hope that I will regain some quality of life.
I want to thank everyone on here for connecting and will leave this lovely Firefly quote (inspired, I believe, by M.L.King) here...
"When you can't run, you walk.
When you can't walk, you crawl.
When you can't crawl...find someone to carry you."