I remember thinking I would not live long enough to get my kids raised. I was struggling to go to work, to clean my house, to cook. Always felt tired and hurt all over. Held on to the furniture when I got out of bed in the morning.
7 years later, I am not the same as I was before the disease, but my youngest is 20 years old. I still work. I can stand up in the morning. I can walk around in my yard and enjoy it! And I am still alive.
There is hope!
Mary Ann

Hi Tammib, I am so sorry that you are feeling down. I know how you feel. I just started treatment with Plaquenil so have not seen any effects yet. I was told it will get better. All you can do is take one day at a time. I was beginning to think that I was crazy, as all the doctors I saw said that I looked healthy and everything was in my head. Now with a diagnosis, my family and friends know that I am not crazy or lazy. I don't think anyone except those of us here can really relate.

For me, sometimes I thought death would have been easier. Living in constant pain and everyone looking at you like a hypochondriac is very difficult. What keep me going was whenever I felt like that, I would take a deep breath and tell myself, it is not all in your head, no matter what.

Hang in there, listen to your body and take the rest you need. I think we will all have to define for ourselves what is normal living with this disease.

I am still struggling with trying to not dwell what I use to be able to do but what I am do without harming my body, a lesson which is hard to do.

Feel better, think of even the smallest blessings and it may help during this difficult times.

hugs,
bb

You will feel better after the medications kick in. It does take time but you will feel better. I remember spending most of my days in bed as well. I had horrible neck pain and could not stand up for any length of time. My symptoms are much better now. I am not back to normal and still have pain but I have learned to do things in small bursts with rest in between. I no longer feel that I will die. Please know that things will improve. Good Luck.

Hang in there. Never give up. I was driving today and thought "I have to fight harder, I cannot give up". You will feel better after the meds kick in. And yes, I was in the hospital for 10 days over Christmas in 2010 and I truly thought that was it for me. But guess what....I am still here, still fighting. And as for work....right now you need to get better....I tell everyone "work is over rated" health is more important and until we are threatened with poor health we don't realize how important it is and how not important things like work are. Don't give up, we have all been where you are and will probably visit there again but never give up!

Leanne

I remember being in the hospital with pericarditis and them giving me massive amounts of prednisone and just waiting. Not knowing if the drugs would work, or what the future would hold.

That was 1976.

I never imagined I would live this long. Probably would have done a lot of things differently if I had.

The breathing symptoms suck; that's what I hated about the pericarditis and the relapses; not being able to take a full breath, which you described in some earlier posts.

If possible, I would focus on that symptom first. It's the most distracting. Lay low when you have to, conserve energy, meditate, turn your thoughts inward... but watch and wait.

If the illness lets up even a little, that's when you push it a little, if the doc says it's okay, if it's safe. Try to get up. Try to move. Watch a movie, write a letter. Work a half day or from home if you can. If your boss pressures you, dodge, weave, mix it up-- use sick leave, vacation time, FMLA, get letters from doctors... just keep it going as long as you can, if you love your work and that's what you want to do.

The illness, obviously, is not in your head. You don't have to worry about that. As Dan Akroyd said in Trading Places, "That's the other guy's problem."

I always found it helped to imagine the illness as a living, malevolent thing.

And then I imagined hurting it. That may sound strange, but it helped me.

It may get me eventually. I intend to make that as difficult as possible.

You are a hunter. Maybe no one knows it but you and us, but that's what you are.

Every moment with your kids, every moment at your job or doing things you love? That's a moment you've taken back from MCTD.

Hang in there. Keep us posted. We are here.

Wonderful comments already, so I'll just add that for the year before I was diagnosed, my level of pain and muscle weakness was ten times greater than anything I've experienced since the Plaquenil kicked in. So was my fear. If you can hang on for the next few months, you will hopefully be feeling much better than you are today.

Yep. I began by not being able to walk. I was 25, newly married, with a 2yo child.

It does get better. My dd is now 14, and I am still married, and working, and walking.

I can do most of what I want to do, not all, but enough.

Hang in there!

(((((hugs)))))

Thank you all for the replies. It has lifted my spirits!