When My Disease Attacks, I Press the Reset Button and Move Forward

When My Disease Attacks, I Press the Reset Button and Move Forward
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There’s an ugly truth about chronic illness. It hides from the rest of the world behind closed doors. Only caregivers and those suffering truly understand. 

It’s the suffering that happens when people are forced to mourn the life that was stolen from them. And it’s the torment that occurs when you try to pick up where you left off.

Each time your illness attacks, it rips away a piece of you. Each bite hurts worse than the last because you fight so darn hard to win the battle, only to have a part of you stripped away. Yet, we expect ourselves to dust off and start over again.

The cruelty of disease

My chronic illness is a bully. She hunts me down day after day. She persistently harasses me with painful procedures and side effects. But unlike a human bully, she doesn’t sleep. Scleroderma lives with and follows me around every minute of every day. I feel her beating me down without remorse. And there’s nothing I can do about it.

Could you imagine living that pain, knowing there would be no end to it?

So, how do you find a way to face the battle over and over again?

Stop being your own bully

My body can no longer do what it could do a year ago. I don’t know if I’ll ever fully accept or make peace with this. But I have learned that telling myself to start again is nothing short of sabotage. It implies that I must get back to where I was before the damage occurred.

While that sounds wonderful, it’s not possible until a cure is found. Asking myself to press restart is a pressure that will certainly lead to failure. It’s unfair to ask yourself to do more than you are capable of.

Of course, I’m going to work hard to rebuild my strength, but I have to set realistic goals. So, instead I’m hitting the reset button. Today is new. Each day is new. I will not start over, because I cannot. I can, however, take a new path. The one where I am capable of achieving success!

Press the reset button

When your computer freezes, you restart it. But when the same error keeps occurring, you have to reset it. Let’s give ourselves the same grace we give technology. 

If you have a disease that keeps taking things from you, I encourage you to hit your reset button. Take off the weights that were placed upon you yesterday. Those pressures were placed upon a person that is no longer the same. Move on and move forward with new goals. Let go of what is gone and set your eyes on the path in front of you. Self-acceptance is a powerful gift.

We can’t change the past, but we can feast on all the beautiful things our new paths have laid out for us.

***

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.

Lisa is the married mother of two beautiful girls. She holds a master’s degree and currently teaches third grade. She is extremely passionate about overcoming challenges while living with a rare autoimmune disease called scleroderma. This systemic disease attacks her entire body inside and out. Still, she manages to continue doing the things she loves: cooking (poorly), building furniture, jogging (slowly), and making clothes. She will tell you everything she does is perfectly imperfect! One of her life goals is to help raise awareness for rare diseases and to continue her personal fight to survive and thrive until a cure is found.
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Lisa is the married mother of two beautiful girls. She holds a master’s degree and currently teaches third grade. She is extremely passionate about overcoming challenges while living with a rare autoimmune disease called scleroderma. This systemic disease attacks her entire body inside and out. Still, she manages to continue doing the things she loves: cooking (poorly), building furniture, jogging (slowly), and making clothes. She will tell you everything she does is perfectly imperfect! One of her life goals is to help raise awareness for rare diseases and to continue her personal fight to survive and thrive until a cure is found.
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8 comments

  1. Concerned says:

    I was wondering if you have explored dietary changes as a way of managing your disease? There are a number of women on the carnivore diet group who have achieved remarkable improvements. I myself have Sjögren’s and have managed to keep the worst at bay using the AIP diet. While medication has its place, the autoantibodies and inflammatory cytokines, produced by the t-helper cells, clearly have a link to the gut. It’s heart wrenching to read about the difficulties you face, I see a lot of them with my mom who has lupus, but a very restrictive carnivore diet might make a difference, why not give it a go? Mikaela Peterson achieved remission from her devastating RA, and I’m sure we all know about the overlaps between the different autoimmune diseases.

    • Lisa Weber says:

      Thank you for your comment and concern. I absolutely agree that diet can help. I certainly pay attention to foods that cause a flare in symptoms and it does help to eliminate those things. Best wishes to you and your mom!

    • Lisa Weber says:

      I’m so glad you found it helpful, Elizabeth. Thank you for taking time to leave a positive response. Best wishes to you!

  2. Donna Goff says:

    There are so many factors that I have to battle with this disease! One of the worst is being extremely tired all the time! I want to get up an get going, but after a little up time, I have to go lay down!
    The posts here are so very helpful!

    • Lisa Weber says:

      Oh Donna! The fatigue is crazy! But I don’t think you’re giving up. You do what you can, for as long as you can. When you have to lay down, that just means your body did all it could and needs to recharge. There’s a story online about using your spoons. It’s very helpful! Look up the spoon theory. Keep doing all you can and be gentle with yourself. We didn’t choose this battle!

  3. I truly thank you for sharing your testimony. I’ve developed Scleroderma at the age of 58 and have questions why so late in the game, why me and know one in my family has this Autoaminue disease. Hearing your story really made me truly understand to always restart or reset each day. Yes, there are times I holler and scream through some of these stages this disease takes me through. Praise God I know there will be a cure and I’m holding on till that day comes!

    Teddie

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