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I Can't Just 'Pick Up and Go' Anymore, and That's OK


Most people wake up every morning refreshed from a good night’s sleep, re-energized and ready to take on the new day. Unfortunately for me, waking up every morning seems more like Groundhog Day than anything else. Instead of well-rested and recharged, I awake each day feeling exhausted and drained.

Chronic illness will do that to your body.

Each morning I open my eyes to stiff, sore joints, muscle pain and chronic fatigue. If I didn’t push myself to get up and get on with my day, I know I could roll over and fall immediately back to sleep, and sleep the rest of the day away. I refuse to do this, so I force myself to get up and get moving, no matter how much I’d love to just roll over and go back to sleep.

Since being diagnosed with a chronic illness over 17 years ago, I have come to terms with the way my body acts and reacts to the way I live my life and the things I choose to do each day. If I know I’m going to be doing a lot of standing or walking that day, I know the next morning I’m going to feel sore, tight, and probably need the day to recuperate from the stress I put on my body the day before. I also know if I push myself and do more than I should, my body will pay for doing that the next day. It’s just the way my life works since my diagnosis in 2001.

At first, it was difficult to learn to accept the consequences of being ill. I just wanted to be like every other “normal” teenager. I wanted to sleep when I needed it, eat whatever I wanted, wake up ready and raring to go, and just live. No worries, no restrictions, and nothing holding me back. I learned early on that life with a chronic illness does not and would never work that way. It was something I had to accept and move past pretty quickly in order to move forward with my life.

Nowadays, my life is less sporadic, and definitely 100% managed. If I want to go on a trip, I have to plan it out. I need to make sure I can do the amount of walking involved or make arrangements to bring my scooter. I have to plan ahead to bring my daily medicines and make sure I bring a snack, or find a restaurant nearby, so I can eat something before I take my meds. I carry a drink with me at all times. I check the weather to make sure I dress accordingly and bring the appropriate clothes in case I get hot or cold. I most definitely cannot just “pick up and go” anymore, but that doesn’t mean my life has to stop just because it takes a tad more effort and time to get where I want to go.

I may have a few restrictions here and there, and it may take me quite a bit longer to get going each day, but over time it’s become second nature to me. I’m able to do what is needed to be done so I can enjoy my life as much as possible. Yes, I may have a rare, chronic illness, but I refuse to let it control my life and the way I want to live it. Yes, I might have to do things differently or have assistance, but by no means will I ever give up on doing things I enjoy.

“Where there’s a will, there’s a way.” This saying is absolutely 100% correct. Living with a chronic illness has changed my life and the way I do things, but I refuse to let it change what I want to accomplish and the things in which I want to succeed.

a collage of photos of the author and scleroderma awareness pictures