Its exhausting being in constant pain, soul draining. Loved ones are supportive, but no one who isn't going through it can't really understand. It will be good to talk to others who get it.

Welcome back! I hope the group can help you and you can help the group. We are all in this together. Great to hear from you.
Mary Ann

Thanks for the welcome. Its hard to not feel like your alone in this sometimes. Ive managed well up until the last couple of years. Been stressful in my life and Im not the best patient. Dont always follow orders or put myself first. Am stubborn but am starting to fear the future. These days always seems like Im feeling good and tgen bam what now.

Welcome back!

Yeah, I try not to worry too much about the future.

I mean, I am glad that I steered myself towards a freelance, part time job, and I would recommend that for anyone with MCTD.

Sure, I think about it sometimes. Mostly what I don't want to put my wife through, that kind of thing. Or what it would be like if I needed to sleep more, which seems impossible.

Time for a nap!

Freelance would be nice, the ablility to work when able to, at a slower pace. Work is a 65km drive each way, and with in-work traveling it comes to about 800-1000km a week. Driving does not help matters. At all, a tall.

I don't worry about it, or the future, because there's no point and I don't have the strength. The way things have been going the last few months, I see two, maybe three more years of being able to work, and walk.

It does not always progress like that, it may not even progress for a few years (mine was stable from 52 to about 56) and even if it does progress you may adapt.

You may be amazed the crap you can do in a few years.

Give it time. I hate not knowing I will ever ski again (at 58) but I might. I hear you about the driving-- 80 miles one day, 45 miles another, 25 miles another, another 15 or 25 running errands and going to meeting. Fighting it out in LA traffic breathing monoxide- not good.

I often try to hang out with friends until late, and then just drive home at 85 miles an hour and the stereo blasting. Better air, 15 minutes faster trip.

Hello DLM99,
Welcome back to the site and it is good to be able and share, how it feels to go through "different difficult flare-up stages" when suffering from this unpredictable disease. It is so good to come here and share our knowledge about different symptoms etc and it is always very re-assuring to read how others go through similar flare-ups, because at least it re-assures us that these flare-up-symptoms eventually disappear. Welcome back and best wishes for a flare-less time from Kristina.

I just joined. Not sure what brought me here or why I signed up. I've been on a downward spiral for years now, and now I just want to know when it will end.