Sometimes You Need a Wheelchair (and that's ok!)
Prednisone can do some really crazy stuff to your body. Many patients will tell you that they have a love/hate relationship with the drug. While it saves your life and keeps your body from murdering you from the inside out... but causes a whole slew of other problems that you have to deal with.
Excruciating joint pain and weakness on Prednisone
When I’m on Prednisone, I get all the classic side effects: moon face, insatiable hunger, acne... there are many, many others, but I think the one that causes the most suffering (at least for me), is the excruciating joint pain and weakness.
I first noticed it right after diagnosis when it was prescribed to me. I was in my karate class doing our routine warm-up and suddenly I was unable to hold my stances. I had to sit down during class... which is something I never did.
The second time I noticed a problem was when my boyfriend (at the time), Dave, and I went for a walk through my neighborhood. This wasn’t unusual either.
I have always been relatively fit, so walking has never been a problem for me. My knees got weak, shaky, and stiff. Dave had to carry me back home. Thankfully we hadn’t gotten far, but it was a hot, summer day in Louisiana.
Worsened joint pain at night
Not only does Prednisone make my joints weak, stiff, and shaky, but as I mentioned before, it causes excruciating joint pain. Nights were the worst for this particular symptom. I would awaken from a dead sleep in so much pain I would cry and I could barely move.
I tried everything. Pain killers, elevating my knees, Epsom salt baths... nothing seemed to help. The pain is so bad, I could never even describe what it feels like. I’ve never broken a bone... so I don’t even have that to compare it to...but I imagine, it would be close to that kind of pain.
A few weeks later, we went out with some friends to a shopping mall. We were out and about having a good time and enjoying ourselves. And the Prednisone hit me again.
Using a wheelchair to deal with the pain from Prenisone
“Guys, I can’t walk.” I said, feeling breathless and upset.
“I think it’s the medicine.” I replied.
Dave picked me up and carried me for a bit. “You can’t do this all day...” I said to him.
We found a place with some tables and chairs in the shade. I was feeling really guilty. I was ruining everyone’s fun!!! “We could get a wheelchair...” I joked.
“Hey, I think we can rent one!” Another friend piped up.
“Oh, no, please don’t.” I said. “I can walk... it’s just really difficult!”
I got up again, determined to keep going, but I knew my knees would soon give way, so I sat down again.
“We’ll go get one!” Dave and the friends said running off in the direction of the information table.
They came riding back in it ten minutes later smiling broadly. “Here ya go, Amber!”
I can’t believe I’m doing this. I thought to myself. I felt like I was insulting people who were (in my mind) truly disabled. I sucked it up and rode around in the wheelchair anyway. After all, it was either this or sit by myself or make my friends sit around when they were perfectly capable of walking about and enjoying themselves.
Accepting help with ulcerative colitis
Sometimes you have to accept the fact that you need “help” getting around. I didn’t realize until that day that even bowel diseases can cause you to have to need a wheelchair. It was at that moment that I realized that disabilities aren’t always cut and dry.
We should never judge someone just because they look like they can walk. You never know what medications have messed up their joints (even if it’s just for the day).
What is your comfort level disclosing your IBD to your employer?