My Get Up And Go Got Up And Went

And the autoimmune saga continues. A few short weeks ago i decided along with my doctor to cut my dose of leuflonimide down from 20mg to 10mg because of the side effects I was experiencing. I was hoping this wouldn't be a big deal figuring the drug would still be in my system. Boy was I wrong. The day after I saw my Rheumetologist we decided I had to go off the drug completely for two days before the decrease in hopes that would help with the side effects. I followed the doctor instructions as I always do and within those few days my side effects had vanished as fast as they came. I started the lower dose two days later. The downfall was that my symptom control decreased right along with the medication decrease. After a week my fatigue, that I almost forgot about, returned with a vengeance. Autoimmune fatigue is a fatigue that is very hard to explain unless you have experienced it. Imagine trying to pull yourself through four feet of mud in everything you do. It is debilitating to say the least. Just functioning takes all the energy you have. I am having to force myself to do anything. Literally. I went to swim class the other day and I hardly made it through. In fact I left twenty minutes early and never felt refreshed like exercise is suppose to make you feel, so I'm told. Not for me I came home exhausted.  This fatigue is not a mind over matter thing like when people tell you to get moving and you will get more energy. No it doesn't work like that for us. If we don't listen to our bodies and rest the fatigue will put us down for days. I know this sounds crazy to the real world but to us chronics it is more real than you know. Please understand.

My joint pain and stiffness have slowly returned to the point where I getting out of bed is hard to do. These are the times I begin to feel depressed. Alone in my own hell I begin wonder how much more I can take but then I remember I have a Rheumetologist and it is time to call him with an update. I don't know why it takes me so long to reach out for help. I think it's my will to not let the disease win. I try to wear my badge of honor and courage as long as I can in hopes that the symptoms will magically disappear "tomorrow." The famous last words when you are a sicko. Sadly the disease always seems to win. I sent a message to him when I finally gave into the fact that tomorrow isn't coming. 

My biggest anxiety right now is the holidays as they approach. Entertaining is grueling. I love Thanksgiving but it doesn't love me back. Having people over and cooking throws me into a tailspin for a week after. What I call my recovery time. I don't make any plans for a week after I have a get together because I know my body will need that time to rest. Once again the disease wins. 

Later in the evening my doctors nurse called and told me to increase my dose back up to 20mg so today I will do so. He also gave me a few tips to help control my side effects but believe me if they don't help we are going to have to consider other options for treatment. One plus side to autoimmune disease is there are quite a few options for treatment. It is a matter of finding what works for you and that can take time. Patience.

Yes my get up and go got up and went but I am hopeful it will get up and decide to come back real soon with this increase. Push on and keep fighting because no one else is going to do it for you. It's up to you! Oh and most importantly reach out when you need help. Lesson learned...I think?

God Bless!

Dianne