Sometimes You Need a Wheelchair (and that

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.

When I’m on Prednisone, I get all the classic side effects: moonface, 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.

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.

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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.

Guys, I can’t walk.” I said, feeling breathless and upset.

What?! Why?

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 he 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.

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 wheel chair. 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).

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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  • trinimom
    2 years ago

    I myself had to redefine what being disabled means after something happened to me. I’ve been living with Crohn’s for over 27 years. Some years ago, I was driving home one day , after what I considered a good day, when I suddenly felt the need to go to the bathroom IMMEDIATELY! I was close to a mall so pulled in the parking lot hoping to get a parking spot nearby but couldn’t find one anywhere ! At this point I’m cold – sweating trying to hold it in and realized that if I waited any longer it would be too late. So I just abandoned my car in the passenger drop-off area at the front of a Walmart which was also the restricted fire route zone. I just didn’t care. Fortunately I made it to the bathroom just in time, but I was in there for about 30 minutes . By the time I made it out to my car, I saw a $300 ticket on my windshield and was told by the parking enforcement officer that had I not shown up just then, my car would have been towed and impounded. I explained why I left it there but from the way he looked at me I knew he didn’t believe me because I didn’t “look” sick. Anyway I decided to fight the ticket in court and I went in armed with my medical paperwork proving that I have Crohn’s and explaining the symptoms etc. Thankfully the female judge was very understanding and she asked me why I didn’t have a disabled parking permit. I told her I thought that was for people who were in wheelchairs or had trouble walking, I said I didn’t think it applied to me. She told me that it’s for anyone who has a medical condition that requires parking close to an entrance. I told her that if I parked in these spots people will look at me and judge me because I didn’t “look” like anything is wrong with me, to which she replied “so what?” She cancelled my ticket and I applied for the permit which I got, but I try not to use it if I can get other parking close by. Many times when I do use it I would get these looks from people who are probably thinking I’m abusing the system. Many people don’t understand that not all disabilities are visible .

  • SusanHU
    2 years ago

    Thank you for sharing your story trinimom! I’m glad to hear that you applied for the permit. Even if you don’t end up using it often, it likely offers peace of mind and a tool for when you need it. I’m also pleased to hear that you had a judge that understood your situation – a reminder that even though there are people who don’t understand, that there are others who are behind us when we’re in need. We’re so glad to have you as part of our community, please keep us posted! – Susan (InflammatoryBowelDisease.net Team Member)

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