Getting Out of Bed Is No Simple Task With Scleroderma

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by Amy Baker |

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“Get out of bed … now!”

Are you kidding me? Getting out of bed would take forever.

“Time waits for no one. Embrace the suck, Amy.”

Stop yelling at me! I’m getting there. (And by getting there, I mean lying there not moving, with hot, silent tears rolling down my cheeks.)

“OK, let’s do this!”

I was encouraging myself, though it wasn’t looking good for the home team. As I lay in bed, I found myself in a conundrum. I was yelling at myself to get it together while simultaneously telling myself it’s OK to take my time — an odd contradiction.

I was determined to get out of bed, even if it killed me. And by the feel of it, it would indeed kill me.

I took several deep breaths and contemplated what to do next. I couldn’t use my knees, because applying any pressure to them felt like stabbing them with daggers. I was unable to lift with my elbows, so I lay there defeated.

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But wait, I thought. If I can somehow maneuver myself, I can make this work. Maybe if I make it to one side, my legs will hit the floor first.

Looking back, this was a horrible idea. Alas, hindsight is 20/20, and when something goes smoothly, it doesn’t always make for a good story.

I decided I would go for it. The pain was excruciating, but I had to get up. So, with one deep breath in, I grabbed my covers and swiftly catapulted to one side.

And over the edge, I went.

Score, right?

Not on your life.

Thanks to my bright idea of grabbing the covers, I effectively became an “Amy burrito.” Picture a sobbing woman, tears streaming down her face, appendages wrapped up, and determination of epic proportions.

I landed with a resounding thud. It felt like my bones had shattered against the floor. They hadn’t, but it wasn’t pleasant nonetheless. I made a sound that could best be described as a wounded animal crying out for help.

I was a crying human burrito.

I probably looked like the Joker, too, because my makeup was running from all of the tears and sweat.

I was cocooned in my comfortable blankets now holding me hostage, and I had to decide how to get up from the floor. As I pondered a plan, a thought crossed my mind: Please don’t do it yourself. Call someone to help you.

It had seemed like that would be easy to do, but I couldn’t reach my cellphone, which I had conveniently placed on my nightstand.

No one tells you how painful autoimmune diseases can be, and they certainly don’t tell you about the flares that can take your breath away. However, the most crippling issue for me hasn’t been horrific pain, but rather the loss of my ability to do anything I want to do, including getting out of bed in a timely and safe manner.

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Muscle and Joint Involvement

Joint and muscle pain are hallmark symptoms of many autoimmune diseases. On good days, I feel like I’m on top of the world. I can take on any task and accomplish anything I need to do. On bad days, the pain is a nemesis I can’t defeat. Scleroderma is a beast!

It’s certainly not a disease I saw coming. Finding the proper treatment regimen is essential for living one’s best life.

The pain can be excruciating and isolating. Many of the people in our lives don’t understand how bad it can become and how debilitating it truly is.

For those of you with scleroderma, I urge you to educate those who love you about your disease. Do this on the good days. On the bad days, I encourage you to love yourself even more. It is perfectly acceptable to wrap yourself in a burrito and simply be. If that’s all you can do today, I’m proud of you.

***

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Linda avatar

Linda

Thank you for saying this about chronic autoimmune disease.🙏❤️

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Amy Baker avatar

Amy Baker

Linda, you are most welcome! I appreciate your kind comment!

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shelley graves avatar

shelley graves

made me feel better to know I wasn't the only person who struggles when they get up. I also nap a lot so I bed to get up a lot. does anyone else get bad leg cramps at night?

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Amy Baker avatar

Amy Baker

You are definitely not alone! I nap also. Fatigue is a big part of this disease for so many. I have had horrible leg cramps and night. My big toe would stand straight up when it would cramp. I ran it under hot water, tried eating bananas and anything else I could try. Turns out, I was diagnosed with neuropathy. Make sure you keep an eye on any symptoms and report them to your physician. XOXO

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Debra Tirado avatar

Debra Tirado

I totally can relate to this article. I was diagnosed with scleroderma in 2012. Thank you for sharing your story.

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Amy Baker avatar

Amy Baker

Thank you Debra. Wow almost a decade of being a warrior! Please keep an eye out for future columns. I am so glad and yet so sad that you can relate to this disease. XOXO

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Paula Burleson avatar

Paula Burleson

Yes, waking up is so very painful 😣. I do everything in a very slow manner due to intense pain throughout my entire body. Cold weather makes it even worse. I pray for you and everyone that has this debilitating disease🙏

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Amy Baker avatar

Amy Baker

Paula, I truly feel your pain. I am so sorry you hurt so badly. Cold weather is my NEMESIS! I absolutely understand. So I will share with you how I keep myself warm… I use the hot hands warmers, heating and electric blankets and I find the warmest socks. They even make heated throws that plug into your car. I also due things in a slow manner because sometimes, I just cant seem to get it moving in a quick manner. XOXO

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Melody Joyce avatar

Melody Joyce

Thank God for you, Amy Baker -- for putting life with scleroderma into clear, hopefully understandable words that can be shared with family and friends. When I try to explain how it feels, how excruciating the pain is on bad days, I often end up looking at the faces of "deer in headlights."

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Amy Baker avatar

Amy Baker

Melody, I am so blessed to read your comment. I had the hardest time trying to make my friends and family understand what this is disease does to us. I still find it hard to help people understand the true pain we suffer from and because so many of us look “fine”. Perfect way to describe how people react to the news. They have no idea what to say most of the time. Please know you are never alone! XOXO

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Latarsha avatar

Latarsha

Thank you for sharing. I was diagnosed with scleroderma 3yrs ago. Some days are good while others are not so good, but throughout I continue to pray and plead for strength to go on.. I hope we will be healed from this mean, cruel illness.

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Amy Baker avatar

Amy Baker

Latarsha, it is my pleasure. I was diagnosed in 2017. When the days are good, they are golden. I tend to overexert myself on those days. Bad days, can certainly keep me down. But, strength and perseverance are some of our best qualities. I, too look forward to the day when we find a cure for Scleroderma. XOXO

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Arin Blake avatar

Arin Blake

Thank goodness for Scleroderma news. I was diagnosed with Systemic Scleroderma April 14, 2020. It's taken me fast and hard. I fight a impossible battle every day like all of you do being a test monkey in hopes that something is found quick for me knowing it's not going to happen. Prayers for all of you of you!

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Amy Baker avatar

Amy Baker

Arin, my warmest thoughts to you. Scleroderma can be a sneaky, thief of so many things. You fight this battle like the true warrior you are and do not ever let anyone tell you any different. A test monkey, is 100% fact. If you can check out my first column and I bet you can relate to being a human pin cushion. XOXO

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Myrthell merkel avatar

Myrthell merkel

My daughter has scleroderma. I am so grateful for this scleroderma news letter.

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Amy Baker avatar

Amy Baker

This site is an abundant wealth of information and I encourage all caregivers to read and to educate themselves as much as humanly possible! My mother has been my biggest advocate and staunchest supporter and I am sure your lovely daughter feels the same way about you!

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Leon leroux avatar

Leon leroux

I feel your pain, as I got this stupid thing too. Mornings are the worst. I was diagnosed in 2008 while in the Cdn armed forces.

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Amy Baker avatar

Amy Baker

Oh my goodness, I could not agree with you more! The mornings are awful for me. I hope you have a good morning routine. I love my hot showers in the mornings, helps me move!

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Ardis avatar

Ardis

Thanks for this newsletter. I have had limited scleroderma for more than 20 years and have used many different meds to control symptoms. I am currently taking methotrexate and plaquinil. I thank God everyday that my disease progression has been slow.

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Amy Baker avatar

Amy Baker

Ardis, WOW, 20 years! You are a warrior, my friend. I take methotrexate also, and it does help me. Sometimes finding the right medication regime is significant!

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Christina avatar

Christina

I must say you are an excellent writer! Your description of the human burrito actually had me laughing. I dont have scleroderma but have RA and I can really relate to the morning pain of trying to move. How do you get out of bed when you cant use your feet, elbows, shoulders, hips,wrists, hands and knees?? I hope your wit and humor help you battle your disease!

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Amy Baker avatar

Amy Baker

Christina, thank you so much for your kind and encouraging words. I have RA too. I am so sorry you have RA. I tried everything, and finally, I had to go on Humira. So, I can totally understand. It was a supreme challenge, to say the least. I had three weeks in a row like that, and I can tell you this, I would NOT wish that on my worst enemy. Ok, maybe I would, but that's another story. :) :) Thank you so very much!

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