My RA diagnosis is relatively new in comparison with a lot of people that I have encountered. For me, it has been a whirlwind of learning about the diagnosis, the medicines, and experiencing the pain and side effects of both the RA and the medicines. However, the affect on my family is what frustrates me the most.
My husband doesn’t understand that some times I’m able to do things and sometimes I’m not. In the beginning he would ask me each day what was hurting. Since I’m not hurting as badly now as I was in the beginning, he doesn’t ask much. He does get frustrated at me not being able to be 100% all the time. Sometimes I’m good for 1/2 a day and sometimes I’m good for most of the day. Then there are the days where I’m on the couch most of the day or want to sleep. I feel guilty not working on the house, doing laundry, and cooking. So I push myself.
The worst is my children. They are too young to understand what is going on with me, 6 and 4. The 6 year old gets it some of the time but not fully and my 4 year old doesn’t get it at all. They don’t understand why Mommy can’t take them places sometimes or play with them. They also don’t understand why Mommy is grumpy all the time and yells more than I use to (thanks Prednisone). My 6 year old will most of the time entertain herself when I’m having a really bad day and she will be helpful. However, she has also learned she can get away with some things when I’m not up to my usual self and that is making me frustrated.
All of this has been overwhelming to say the least. Each day I don’t know what to expect as far as pain, foggy brain, fatigue, no energy, grumpiness, etc. It breaks my heart that my children don’t know what to expect either – will they have their “normal Mommy” today or will they have “run down, in pain, grumpy Mommy” today. I know it will get better in time as we all adjust to what our new normal is going to be. For right now – it just makes me sad.