What to Do When Scleroderma Steals Our Energy

Amy Baker avatar

by Amy Baker |

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Living with scleroderma fatigue is unquestionably a roller coaster ride. One day I’ll be cleaning the house and taking care of my responsibilities, and the next, I’ll be under a blanket, recovering from taking care of those same responsibilities.

The energy I had the previous day will be gone. The day before, I was going to conquer the world. Today, I’ll be strictly focused on recovering.

If this sounds like you, trust me, I fully understand the complexities and nuances of what I call the body’s deposit and withdrawal system.

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But Amy, you ask, what is the deposit and withdrawal system? Thank you for asking! I will tell you.

When we have the energy to do what we need to do, we withdraw from our system. We are using fuel that we need to replenish. After we use (withdraw) our energy, we need to deposit more into our body banks.

Too often, we’ll push our bodies to the collapsing point by doing everyday things. Vacuuming or cleaning the house can leave us feeling exhausted. Shopping for groceries and then putting them away will cause us to order a pizza for dinner that night because we’re too tired to cook the food we just bought.

If it sounds like I have a lot of personal experience with all of this, I do! I’ll go to the store with all of these plans for a delicious homemade dinner and then be too tired to make it after I’m done putting everything away. It’s because I’ve withdrawn my energy. That’s when it’s time to replace it.

Replacing this energy is not always an even exchange. I probably use more energy than I’m aware of before I realize I need to replace it. My body starts telling me this before a shutdown happens. But I usually only listen when the shutdown has already started. Now I’m negative in my energy bank, and it takes longer to build up that energy because I didn’t listen to my body in the first place.

Some might say I’m stubborn, and I probably am. I don’t particularly appreciate it when I’m told I can’t do something, even when it’s by my own body — especially when it’s by my own body.

I have learned that my body is a fickle creature. It will have its way, even if it means dropping me to my knees with an overwhelming feeling of exhaustion. Yep, it’s time to correct that negative balance.

I’ve started listening more to my body now. I’ve been taking its cues that maybe I’m overdoing it. If I need a nap on the weekends, I’ll take a nap. If I need to prop my feet up for a quick 10 minutes, I’ll prop them up.

I feel more energetic when I listen to my body and try to deposit as much energy as I withdraw. It’s a delicate balance, and I don’t always understand it, but I guess now I am just along for the ride. Scleroderma will do its thing, and I will do mine.

I urge you all to listen to your bodies. Rest when you feel tired, which is easier said than done, I know. However, you can’t take care of anyone else if you don’t take care of yourself first.

Remember: Taking care of yourself isn’t selfish; it’s smart. Listen to your body, because it won’t steer you wrong!


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

lorraine jones avatar

lorraine jones

It is almost like a rush I get when I do not have symtoms,I know it is short lived so I try to pack it all in as quick as I can. Huge mistake because as positive as I felt getting my tasks done I feel myself coming down and now feel worthless. I question myself all the time,Well if you do not push yourself what would happen? If you do not have this disease family friends do not understand. They might and will hopefully be supportive but they do not go through the daily struggle. I went for a tan today to feel the warmth after a bad day with Raynauds,and then bought myself my favorite Wonton soup. I feel done and tired. My dog had a walk,I managed some laundry and my kitchen is clean,I feel proud with my day and have no regrets saying thats all!! huge pillow my dog next to me and a lifetime movie,its OK.

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Kathy Blankenbecklor avatar

Kathy Blankenbecklor

Thank you for validating me to myself.
Last year or so I've been exhausted over the simplest things.
Still work prn as a nurse, somedays I can barely move after coming home, total physical exhaustion. I've finally given myself permission to take a nap, rest when I need it.
Now i feel that I can relax without beating myself up.
I shared your post with my nursing student daughter and a classmate of hers. They both said they never realized how debilitating these symtoms could be. They are going to ask an instructor to do a learning segment on autoimmune diseases with focus on symtoms and care needs.
Thank you again.

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Linda Tedrahn avatar

Linda Tedrahn

Yes, absolutely. I've learned to listen but it still sucks. If I have something planned, the day before I will do nothing. And when I have a gi there's really nothing I can do, I have to cancel everything. So now I don't plan morning excursions, and sometimes that doesn't work either. As Gilda radner used to say " it's always something "

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Joyce avatar

Joyce

I’m new to this so it’s been so much help to find you and be able to learn from you and everyone else who contributes to this helpful publication. Thank you!

Scleroderma and what goes with it isn't like having a toothache or even the flu is it….like when you know in a day or so you’ll be normal again. Normal is a different reference point now. Normal is what you just wrote about.

Our bodies are like a bank account that has to be fed. You described it very well.
The hard part is the not being able to exactly know when the overdraw slams us.

Like you, I’ve tried to think of how I could be more cognizant of an eventual crash but so far I’ve haven’t been able to detect enough of a warning signal.

Sometimes it’s just standing or moving too fast since I have lung issues too and 02 suddenly drops. Other times it’s just washing my face or hearing an unexpected noise or too many bright lights, or something else that suddenly gets on my nerves.
Going from rest and digest into fight or flight can sure complicate life for everyone who happens to be around me too. Then I feel bad. It just can happen so fast. They say they can see it coming but I don’t know it.

In my case, the experience of finding myself with systemic scleroderma was an overnight happening. Looking back though I can see warning signs. Years before I’d developed a chronic cough that I attributed to my work environment…and Reynauds at 20…. as well as other autoimmune issues like migraines and lupus. Many of those though are common to many people too. Life was just too busy and I was always rushing to get stuff done or be somewhere.

So when my crash happened I was literally dropped to the floor and couldn’t get up.
Many months went by before I could find my way through the system to get the help that I eventually have today. It’s been 6 months now and I’m seeing that learning to relax and take care of myself and stay in contact with others and learning to accept and enjoy being on the receiving end of love and care from others is very precious indeed.
There’s always joy to be found somewhere even in our current pain.

I’m glad you’re there.
Joyce

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Maggie Diaz avatar

Maggie Diaz

This article is so me. Now that it is Spring and there is much yard work to do, I pushed myself completely beyond my limits. It takes so much time to recover and re-energize. This is difficult to accept and listen to my body saying STOP.

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Linda Stumon avatar

Linda Stumon

I can relate to all of this and Family and Friends think it is laziness.

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Beverly avatar

Beverly

Thank you so much for writing this. I've printed it out and will be sharing it with my family members so that they will understand, what I am always calling my lack of stamina, is due to SScl. Knowing that others with this disease experience it stealing our energy is very helpful to me. I will no longer feel guilty for resting when I need to, and for putting things off because I lack the energy at times. I'm grateful to you. Thanks, again.

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