I am doing better since I have been on Enbrel but everyday is still a challenge living with this and everyone thinks its a joke… Sometimes I can be very active and other days my knees and stuff hurt and I can’t do the samethings I did yesterday… How do I learn to live with this? I feel alone
Clearly you are not alone. There are quite a few of us here in a similar situation. Keep doing what you're doing. Be active when you can, and be gentle with yourself when you can't. Keep coming on here for support.
Thank you and I will
Joey, you are not alone here! I deal with the same feelings everyday and also take enbrel. Between work and family very few “get it” and realize the ups and downs we have are more severe than overdoing it after the common cold. Everyday is a balancing act that takes time. I am horrible at predicting it and I know that confuses people. Hang in there and keep talking here you will find close friends and we all understand where you are coming from! The hardest part is the wanting to do it all and keep up but being unable to. It is not a joke but remember to keep a sense of humor when you can it really helps!
What everyone else says, Joey!
I find one of the most difficult things to get my old brain around is the inconsistency of what I can do, or how I appear to deal with all of this. One day, I am able to, say, walk into the supermarket and do a small shop. Another day, I need milk and I have to send my DH. I go to the mall and on a good day I can "do" the drugstore. The next day, I will need to use my mobility scooter. It all depends on how I feel that day, how much else I have done or plan to do, the weather, what my pace has been that week, how I slept the night before .... it would make me crazy if I let it. And I know I shouldn't, but I wonder about what others think. What a crazy lady -- crippled one day, shopping with a cart the next. And she looks fine, just fine, I tell you!
My mother thought that I was having to much fun to have a disease. Just last week my mom,brother and his wife visited me here in Georgia. Since I can’t travel my 93 yr old came to me. It didn’t take long for her to realize I had something serious . You have to go with the flow on this disease. Watch comedy as much as possible. Take charge of your health. Remember that everyday above ground is a good day!
You're definitely not alone! All in all, I feel better than when I was first diagnosed but the way I feel is up and down. I told my husband on Saturday that I thought perhaps I was a little too cautious. He gave me that look--neither of us wants to go back to me being in this house, except for work and doctor visits, for the best part of two years.
For example, I was out Sunday with my husband, picking out bricks for the raised bed in front of our house, making plans to hit up a local mall. Yesterday, no mall trip--I felt decent but my shoulders and middle back were telling me being in a car an hour round trip and in a mall for however long were not on the agenda.
It's not easy but I'm becoming accustomed to days when I feel on top of the world and go like a hamster. Then there are days when I'm at home, reading.
You're not alone. I am sure you will continue to have improvement. We all have days, good and bad. Especially when we feel good and push ourselves because we want to be up and about doing things. :) Give it time.
I am also on Enbrel. It's unfortunate that we need to make lifestyle changes...but you need to give your body a break sometimes.
You are not alone! everyday I face a different challenge with my body and pain. I am also on Enbrel. It has helped me,but I do still have some bad days. I try to stay positive,but I will have to admit some days it is hard.