If you kept reading after the above warning... bless your heart. I promise I will try not to be too whiny!
So, tonight I went out to coffee with two friends. One also has Rheumatoid Arthritis and Lupus. The other 'officially' only Fibromyalgia, but they are now thinking RA will be added to her diagnosis soon, also.
The reason we went out is another issue that I may or may not blog about..., but eventually the talk got around to our chronic crap.
The joint pain, swollen hands and feet, and the fatigue.
Just to review....
Tired = go to sleep, get up, and feel refreshed, better, recuperated.
Fatigue = go to sleep, get up, and feel still tired, crappy, achey, sore, and flu-ish like.
Chronic diseases of the immune system (such as RA, Lupus, MS, AS, Psoriasis and Psoriatic Arthritis, Fibromyalgia, Polymyalgia, Hashimoto's Thyroiditis, Myositis etc etc etc) = FATIGUE, day after day after day after day after day............
No one truly really 'gets' it unless they too, have it.
It was refreshing to talk about that with my friends. They are newer 'friends' in my life. They were just acquaintances, mom friends, and now, so much more.
We talked about how our diseases are such an integral part of who we are now. And, how that is sometimes good, and sometimes bad.
Each of us has problems with confrontations in our lives now. I think it has do with being in pain all the time. Your emotions are always just simmering below the surface. Each of us, feels that. You can't have a meaningful discussion about something that hurts you without the tears coming, and that makes you shy away from any confrontation that may do that. You don't want to seem unprofessional or a little nutty and too emotional in certain circumstances. It was nice to be able to talk about that issue with two grown women, two other moms, who have to deal with that issue, too.
We talked about the frustration of dealing with your family that even though they 'see' it all the time, they don't really 'get' it. It is hard. And, we talked about all the other friends, and coworkers who totally don't get it at all. Everyone knows someone with some miracle cure, everyone knows someone who can do more than you.
We talked about the people who say, 'but you look so good', or 'you are too young to have arthritis' and all the interesting things you hear on the days you have to use your cane, or stay home to rest, or bow out of a committment.
Ours is an invisible disability. An invisible chronic illness. Our immune system has turned against itself, attacking our internal gears and works, causing pain and swelling that can't always be seen. The immune system working in overdrive causes the fatigue. The tiredness, the fuzzy headness, that rarely leaves.
It was a nice night out.
It sucks to have a chronic illness.
Here is a website for you to check out if you would like: