Everyone is hit in different ways. Everyone takes different meds. I was diagnosed almost 2 years ago and managed to function quite well for the 1st year. I have been sick now for about 8 months off and on and I will be the 1st to admit - it sucks. I am currently off on sick leave but see disability in the near future. I am going out of my mind being at home, I am so lonesome but I do not have enough energy to work so right now it is a no win situation for me. Stay with this site, it is fantastic, the best support and advice you will find anywhere!

Leanne

even keeping up with this site is hard work for me, i feel guilty i give out few hugs and replies. but the mctd group know how hard it can be just getting by day by day and i will always head here first before the lupus group' which i visit rarely.

i hate this disease and sometimes feel a need to deny it so staying of DS keeps me in denial and i dont get all depressed, yes i have that, yes and that too, and geez am i gonna get that....

i like others, feel like i have the body of an 80 year old on so many levels, skin, joints inflamed, decaying parts of my body. i feel emotional when i am nauseated, aching or itchy, my body and mind a fucked up medley of interactions and counter reactions.

my feet. my mouth, my cracked lips and no i shall not go on.
am still waiting for disability insurance to come thru.

have had the wettest season for a decade so cloud cover a godsend but now it is going to get stinking hot and i shall have to stay indoors most of the day. i hate that. haven't forgotten you all at all, and yes, stay with this site if you have mctd, a great group of people.

Thank you for your responses. It is nice to be able to finally talk to someone that understands. I feel very isolated, my friends and family are very supportive but they have no idea what this disease is. I'm finding myself telling people I'm fine, so I don't have to explain what's going on when I don't really know myself. I scared myself when I first got diagnosed by reading everything I could about MCTD, (pretty scary stuff on the websites) so I figured I was better off not knowing. But when things start happening to your body its hard to stay in denial. Thank you again, and hopefully we can get through this together

Hi welcome to this site. I am sure you will make some good friends here...and we all understand. I have been on disability for years now and still get very depressed about it. I used to be very creative...teach pottery, sell my work, do craft fayres, stay up all night working and now i find it hard just to keep things together with the house. It does get very lonely at times as i cant keep up with social things events any more either. Some times i feel quite well and start planning the future and then illness and fatigue strikes again and i forget my goals again...its like going through life at a snails pace and feel senile, achy and old lol. A total contrast to what i used to be like. i have been diagnosed with fibromyalgia as well so that probably makes things even worse. If you could think of something you could do from home..even as a hobby it definately helps. Hope you have a good weekend

It is easy to get isolated. Sometimes I wonder where all my friends went. Then, I found out they are still hiking and going to concerts and out to eat- without me. I am too tired and not as much fun anymore. That hurts.
As for the MCTD. Just when I think I am on the up, something else hits. At times I cope well, at others, I dont do too good! I just try to look at the bright side and ignore some of the symptoms. Dont even try new treatments anymore. I just putz along. Seems like that works the best. Accept the limitations and just do the best you can. I do get sad about all I miss out on.
Mary Ann
God, what a depressing post. Have to work on my attitude again!

I am really lonesome. Been home now - when not in the hospital - for 2.5 months and I AM SO LONESOME. Meet the girls from work for lunch occasionally but they are all busy. When the hubby gets home, I want to go out but he is tired and burnt out so I am stuck. I have been sooooo tired and weak lately, too much stress, and find it hard to even keep the dishes put into the damn dishwasher. We are a sorry ass bunch today :) With the kid having cancer, me being in and out of the hospital both the hubby and I are in such a bad head space right now. Things are taking so long to get moving on the kids surgery, I am so slow to get my strength back, and when I do I think I will be looking at disability insurance anyway. We are sooooo grumpy, sad and miserable, we talked about it and really have to try and get things moving in a positive direction around here. I am finding it absolutely toxic with anger and worry. Any suggestions?

Again, thanks for the responses to my post. All your replies help me realize at least I'm not alone with my thoughts. I can really relate to MToennis, about friends doing things without you. Its hard especially when you use to be the one they leaned on. But you right, we are not much fun anymore but I am looking for ways to change that. This website is the start.