The Hardest thing about Chronic Illness.

chronic illness 2

Chronic illness is hard. 

The pain. The constant joint pain, daily headaches, fatigue, muscle weakness, brain fog, tingling, numbness, random nerve pain, and about 100 other symptoms on a daily basis.

My body isn’t trusted to do the basic things that most people take for granted. I suffered a severe sprained right ankle and a severely broken right ankle last summer because my body literally just gave out while I was trying to force it beyond its limits. You might think I was engaging in extreme physical activity, but no. I was walking slowly about 100 yards across a field on a hot morning. And my body just gave out. It wasn’t the first time that had happened, but the first that resulted in so serious of an injury.

The uncertainties. I have spent literally thousands of dollars on doctors, specialists, medical expenses, and testing over the last 10 years. I have experimented with countless natural options, including really strict diets. And just when I thought I was seeing relief, I recently contracted Rocky Mountain Spotted Fever which just compounded everything. And even in that we don’t have firm answers because it could have been a new acute case, or it could have been a recurrence from an old infection that I never knew about and was never treated for (apparently my lab work could have supported either diagnosis). I had a brief, slight reprieve after about 3-4 days of antibiotics, but then crashed again.

Lack of Awareness. While I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia years ago, my current practitioner things there is more to it than that. This is a different part of the uncertainties problem. No diagnosis means that I can’t say to other people, “I have xyz.” This means no understanding for what I am going through, and a lot of people who think I must be making it up, exaggerating, being lazy, or looking for attention.

That last one is humorous to me because I really don’t talk about my illness or symptoms much at all, basically only when I absolutely can’t help it. And when I do, my tendency is to downplay everything because I don’t want to have to admit that I’m so weak.

The humbling weakness. Oh so humbling. Having to admit to myself and others that I just can’t do the things that I should be able to do is hard.

Counting SpoonsSo often I can’t do things I want to do, or things I need to do. I have to carefully consider everything I do and weigh the consequences and realize that something else will always suffer because my energy bank is so low. Sometimes I’m not very good at that, and sometimes (just being honest), I resent the fact that I have to do this.

Hope in the Midst of the Hard

But even in the midst of all of this, I have always said, and meant, “Thy will be done.” In spite of mourning lost dreams of normalcy, I know that my God is sovereign and His will is best, always. I don’t doubt that.

Trusting God for myself is the easy part. Even if I continue to get worse and never find an answer, I can trust God in that. Through the pain and weakness, I can cling to 2 Corinthians 12:7-10 and know that His grace is sufficient, and when I am weak HE is strong. I can give thanks because I am constantly reminded of my desperate need of Him and that is a good thing. I can handle that. His word ministers to me every day and I am even entering a place where I can accept my limitations, and praise Him as the one who created me with those limitations. God does not have expectations of us that are beyond our limitations. He knows that we are but dust.

I thought this acceptance was the hard part. Accepting that some dreams (even basic ones) likely won’t ever be.

But God is refining me. Pruning me. He is revealing holes in my armor of faith, and leading me beyond what I thought was acceptance and into a territory that I hadn’t fully considered. The hardest part that I have avoided up until now.

When you can’t fake it anymore

For the last 10 years, I have been living in a bit of denial. I’ve been able to force myself by sheer will to do the necessary things. There have been times I literally had to concentrate on picking up my leg to put one foot in front of the other just to walk across a parking lot and I’ve moved slower than a 90 year old woman, but I could do it.

I couldn’t do extra stuff, and sometimes “extra stuff” includes things like taking a shower every day. I have to count my spoons, and I haven’t been very good at admitting my limitations so I have pushed it too much sometimes and paid for it. I couldn’t do all the things other people thought I should be able to do, and there were many times I felt the guilt of not being enough for my family. But I could do the basic, necessary things that made me feel like I was mostly still able to care for my family.

Until this past Summer when my body literally gave out and said no more. The last few weeks (possibly due to RMSF), I have been in that place again, where I just can’t even push anymore. I can’t fake it anymore. I can’t force it even though I want to.

I just can’t.

And that has been so much harder than all of the rest of it. Admitting defeat. Admitting that my limitations and abilities are so far below what I want them to be. Admitting that I can’t be the homemaker and homesteader that I want to be. That I can’t even care for my own family.

That’s the hard part.

Trusting God to be glorified in my own pain is so easy compared to trusting God when it becomes obvious that my weakness directly, negatively affects the people I love most (my husband and children).

The weight of letting them down is sometimes more than I can bear. But, again, God is refining me. Faith isn’t faith just when it’s easy and I have to know that God will care for them. It’s not up to me.

“Father, glorify your name.”

Hope and the Hardest thing about Chronic Illness

 

Comments

  1. Nicole Reeves says

    I cant even explain how much this short blog means. I truly feel you are speaking the words Ive struggled the last 2 yrs to say to family and friends…and to myself. Im crying tears of joy, being reminded that there are others struggling, yet trusting in God. Thy Will be Done is by far my fav Song to sing and fav (Mantra) when my days are at their worst. Thank you, thank you, thank you for this blog post!

    • Crystal Brothers says

      Nicole, I am so blessed and touched by your words. I am praying for you right now that the Lord will continue to lead you and bless you in your journey!
      ~Crystal

  2. Sandy Keys says

    Hey Sweetie, have you ever been tested for Myasthenia Gravis??? Do a little research, i think you might be one of us!!!

    • Crystal Brothers says

      Hi Sandy! Thank you so much for taking the time to comment. I have not been tested for that, but it came up in my research recently and I did notice that a lot of the symptoms seem to fit, so I will definitely be asking my doctor about it.

  3. Jenifer says

    I feel so blessed by reading your blog. I too feel this same way so many days and the verse you quoted is the verse I have clung to for years. I have to count my spoons also, so I really feel for you. I didn’t realize a blog could bring out this much emotion. Thanks for writing this and putting yourself out there like that.😊 You and your family will be in my prayers.
    God Bless,
    Jenifer

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