Rollercoaster
There is happiness (I am blessed with a wonderful family, wonderment (what is to come today), excitement (hanging out with friends), anxiety (awaiting blood test results), and crappy...is that an emotion?
I think for most people with autoimmune, crappy is an emotion. It morphs from this generalized feeling when we first start getting sick, to an actual emotion that is an everyday occurrence. For some people it's the disease, some it's the medication, and for others it is the food we eat. Frustrating as it may be, we must still get up, get out of bed, get dressed, go to work and provide for our families.
Then as the disease progresses or we don't get answers and the malaise turns in to pain and depression our lives seem to turn in to something we never thought in a million years would happen. It starts effecting our daily lives, our home life, work, friendships, etc. If we don't have a huge growth bulging from our medulla oblongata, then there is nothing wrong with you. It's called an invisible disability. You can feel it, but can't see it. Millions of Americans and people around the world suffer with these concealed afflictions.
Perseverance is key. Its the key to finding answers and feeling better. So many of us find that we have to go through it alone because no one understands. Find a support group to help you through the worst days. Get a sponsor. Meetup.com has resources for you in your area. If there are none, start one yourself. It is hard to understand what people with autoimmune go through on a regular basis. Especially if you aren't going through it yourself.
Have a friend go with you to doctors visits, they might think of something you don't and remember things about the visit that you will not. If you cannot have someone with you, record your visit with your doctor, of course with their permission. This will help jog your memory. This is especially important when you are getting results from tests. You hear "Your test came back positive for Celiac" and your brain stops there. You don't hear the rest of the conversation. Your brain is stuck on the word Celiac.
Bottom line is that you are not alone.