The Guilt In Chronic Illness and Lyme Disease

Are you chronically ill and struggling with guilt?

Learning to accept that we are enough is often a difficult task.

the-guilt-in-chronic-illness

As a mom and a wife living with a chronic illness life can be difficult at best. There are expectations in life that a person is expected to meet. I struggle so often with the feeling of guilt. Guilt that I cannot measure up to the other moms out there…to other wives. I cannot simply breeze through a day and get everything on my to do list accomplished. Some days I don’t even accomplish one thing on my list.

Guilt in Chronic Illness We may not have it all together, but together we have it all.

If I’m not careful, guilt clouds my day. Guilt that I’m not doing everything I should be doing, could be doing. Guilt that I don’t keep in touch with friends and family.Guilt that I don’t run that errand. Guilt that I don’t attend this function or that function. Guilt that I don’t cook a hot meal. Guilt that I don’t contribute. Guilt that I don’t do enough.  Just guilt……such a powerful emotion. Yet, such a useless one. What positive purpose does it serve?

When my health started to seriously deteriorate about eighteen years ago, I thought it was a passing thing. I thought that I would suddenly wake up one morning and all would be well! Little did I know then, that it would not ever be the same again.

the-guilt-in-chronic-illness-the-mind-of-a-survivor

While I do have “Good” days, they are usually few and far between. I was used to keeping an immaculate house. Extracurricular activities for my kids were a staple to get through long summer days. Outings to the library, art classes, dance camps, park days, shopping trips, play dates, Wednesday night church, visiting the elderly, dinner dates and more were a weekly thing. I loved to cook complicated meals. I loved to craft. I loved to paint. I loved homeschooling my children. I loved being busy.  Now, when I look back at my life “Before I got sick,” I am amazed by all that I did in a day’s time. Busy, is not a possibility for me any more. At least not in the sense that it meant in my younger days.

These days, I feel accomplished if I can finish a load of laundry.(By finish I mean wash, dry, fold & put away.)  The extra activities for my children are a thing of the past. I deal with the guilt of not being able to offer my younger children the same childhood that their older siblings enjoyed. It is a quieter childhood to be sure. When I take a moment to really look at what a day, a week, even a month holds for my family though…I know that it is much fuller than it seems.

The days are still filled with giggles and smiles. Still filled with the trappings of family life. Still filled with lots and lots of love. I just have to get it through my head and heart that, “I am enough.”

I Love Us

On good days I tend to do too much. I stretch myself thin. When I know in my heart, a slower pace would be wiser and better for my health. Sometimes, I get so sick of being sick, that when the sunshine peeks out  from behind the clouds I get a little crazy.

This is what happened to me this past week. I had a string of several good days. I couldn’t tell you the last time I had more than one “Good” day in a row. I was amazed, I was thankful, I did too much. Like I said I went a little crazy. I couldn’t believe my good fortune. Three decent days in a row!! How did I rate such a wonderful thing! To say I grasped the chance to do something with both hands is a gross understatement. I OVER DID IT! Seriously.

I have been longing to redo my older kitchen. So when my husband offered to get the paint to refinish the kitchen cabinets, I jumped at the chance to make a much needed change. While my sweet husband did much of the work, I helped the best I could. I did okay the first day. Yes, I hurt, I had a headache, I felt a little foggy.  But, I was able to be up and about without feeling like I was dying. A huge improvement for me, from the past months.

Kitchen remodel

Lyme Disease has a way of bringing you down. You feel like you are living life in a box. Looking out of a window and life is just passing you by. You seldom feel like doing much of anything but resting.  Mostly you feel like dying. There are different versions of resting for me…sitting on the couch and reading, blogging or working on paperwork etc. Laying on my bed doing much the same thing. Or on cooler days, lying on the little sofa on my sunny front porch.  On really bad days it can be a struggle just to get up and get dressed.

So back to the kitchen redo…day one went fairly well. By the end of the day I was still flying high from the difference in how I felt. I felt clear headed. I felt like I could handle life! I felt in my heart, “I can do this! I really can! Let me pinch myself! I can’t believe how much better I’m feeling! What did I do different yesterday? Anything? What did I do, so I can be sure to do it again and again?” I was so desperate to hold onto this wonderful feeling. I was achy, but I was okay. I was tired, but I felt I could keep going. It was awesome! And, I don’t use that word often. I felt so much better that first day, I half convinced myself it would stay that way forever!

Paint brushes Guilt in Chronic Illness

By day two of  the kitchen cabinet redo every joint in my body began to hurt. I began to think, what have I done? What did we just get ourselves into?? But, still, I had energy. This was unusual for me. I actually felt like carrying on a conversation with my husband. Also unusual for me. I felt like being a part of life! It felt good to be up and doing something…anything. But, to be doing something so radically different as painting a kitchen cabinet…now, that was fantastic!

By day three, I did wake up in much more pain than usual. I’m sure due to my overexertion the two previous days. I also had a pounding headache. I felt the fatigue and sickness lurking right below the surface. The kind that says, “Hey, you better watch out!”  But, low and behold, I still had energy to burn. So, I did.

Not a good idea, I assure you. I should have stopped while I was ahead. Instead…I kept on trucking. I saw a wonderful change in my kitchen. Once dark and dreary, now filled with bright, light, sunny cabinetry. I was motivated! I wanted to keep going. I began to feel awful. Very AWFUL. But, oblivious to what was coming. The proverbial freight train…I kept right on.

I pushed through several more days of working and ignored my instincts to stop. While I did accomplish quite a bit…and I feel in the end it was probably worth it. I know I will be paying for this “Disobedience,” for quite some time. Still, it was refreshing to throw caution to the wind for a while and just live. I had almost forgotten what it was like.

Guilt in Chronic Illness Cabinet Redo

Now, here I sit on my couch. Yes, I have a brighter kitchen. Yes, by God’s grace the job was finished. But, here I sit feeling more fatigued than I should be. Feeling much more pain than I should be. Feeling that terrible weight on your chest, that comes with Lyme. Feeling the weight of reality setting back in. Feeling quite sick. But, accomplished and free from guilt. At least until tomorrow…

The struggle is real folks. But I’m gonna beat this thing. I just know it. And, now I have a few sunny, busy days to keep in the forefront of my mind…something to aim for. Something to look forward to. Maybe…

Fighting for a cure for Lyme Disease, one day at a time.

Fight Song Rachel Platten


14 Responses to The Guilt In Chronic Illness and Lyme Disease

  1. It's so hard to have good days because you want to squeeze everything into them that you weren't able to do before, and then you end up recovering from good days… Well said!! <3

  2. Valerie says:

    Hi Jennifer,
    Welcome to Lilac & Lyme! Thank you for following along and your kind comment. I hope you will find encouragement here. I have a feeling I will be "recovering" from my "good" days for quite a while. =P One of these days I might actually learn to listen to those warning signs…that I'm doing too much. Have a great day! Valerie

  3. Lynn Hasty says:

    Valerie, I started reading this yesterday and got sidetracked. No coincidence that Sidetracked is the name of my shop. ;). My heart goes out to you! I am so sorry. I have felt the weight of depression, and I know how that alone hampers a person, but I can only imagine chronic illness. And then chronic illness brings the depression with it! I know you will enjoy your kitchen. I hope you are feeling energetic and well again soon. I guess those words are hard to even grasp when you are in pain. I love you. Thank you for sharing. Lynn

  4. Valerie says:

    Dearest Lynn, Thank you so much. I am hopeful that if I continue on my protocol that my health will improve. I totally understand what it is like to get 'sidetracked.' I do that all day long. 😉 Love you, Val

  5. Late last night I felt normal for the first time in a long time and I wanted to stay up late reading or watching something – throw caution to the wind. I laughed when I read your term 'disobedience' because that's exactly what it feels like when you live a regimented, paced existence. Sometimes I want to rebel and I question whether all my pacing, supplements, appointments etc make a difference. But I know self-care is the best treatment, although sometimes we need a break from our routine, especially for an important goal. Thanks for the read! I'm glad I found your blog though the Chronic Illness Bloggers Network. I blog over at skillfullywell.com and I'm glad to connect with so many great bloggers 🙂

  6. Lady Linda says:

    Thank you for visiting my blog. I just read your post and thank you for being so honest. My heart goes out to you. I can't imagine how you get through the days. I have been having some problems with my knee and feet, but I feel like a baby for complaining after reading your post. You gave me quite a reality check.
    I hope you have some good days ahead…soon!

  7. Valerie says:

    Dear Skillfully well, Thank you for your comment! I can certainly identify with the questions regarding if all the pacing, etc is really worth it. I know in the end, that it is best for me. But, like you said…sometimes I just gotta break away from it all. Even if my little "Disobediences" cost me dearly. I just popped over and checked out your blog. I'm so happy to meet all of the wonderful bloggers at Chronic Illness Bloggers group. =) Hope you have a great weekend! Blessings, Valerie

  8. Valerie says:

    Dear Linda,Thank you so much and you are most welcome! I have recently changed the name of my blog from Silver Linings to Lilac and Lyme, due to the increase of posts regarding my chronic illnesses. I hope you will continue to follow along. I so enjoy reading your gorgeous blog posts. I hope your knees and feet feel much better soon! I am here and understand how hard it is to live with the pain. Hope you have a wonderful weekend. Blessings, Valerie

  9. Mary Beth says:

    Hi Valerie. I caught this article as a post on pinterest. I completely empathize with all as you describe in your story. I was diagnosed with Lupus in 1999 (Hashimotos, RA, Raynauds, etc. as we know the autoimmuneslike to layer themselves on us), and my world was forever changed. At first I had good weeks. Now good days seem few and far between, and when I do get one, or two, I burn them like a torch! With this disease, I have also slowly learned much along this journey: patience, with God and myself; to be deliberate with actions, and that has trickled into my thought, choices, etc.; and most of all to be grateful as there are so many others suffered get from disease or injury who are not able to do even half of what I can. May God bless you and your family. The struggle is worth the goal! MB

    • ValerieB says:

      Dear Mary Beth,
      Thank you so much for your wonderful comment. I am so sorry that you have suffered so long with multiple chronic illnesses. I also have Hashimotos and Raynauds along with my Lyme, CFS and Fibromyalgia. I know exactly what you mean about burning your good days like a torch. I do the exact same thing. The further down the road I get with this thing called chronic illness the less and less “good days” I seem to have. It makes you treasure the ones you do have! Blessings to you dear friend. Thank you for the reminder that the goal is well worth anything we might go through. Hugs, Valerie

  10. .Amy Garcia says:

    This me sown to the kitchen and the paint waiting for me to have the good days to brighten them up. Its been almist a year when I did the same for my ugly yellow and wood panelled family room.
    Same with the older kids who had sprits and music and xance lessons and summer acting and camps and now two little girls who are living in chaos and arent likely to be doing any of those things. So I cry alot and try to remind myself if things similar to things youve said. And that guilt and crying are not helping anyone. And ttying to remind myself without it turning into more guilt. And trying to have some hope someday something might help but without feeling like if I would jist eat better or excercize (despite barely being able to get out of bed) or Something…there has to ne simething I’m doinv wrong. Or maybe I really could do more or maybe its my fault for lying down too much. :Or I think the days I push myself because my older kids are atound…holidays, but they don’t see the days it costs me afterand dont understand why my houses like this or why i xant go shjopping or drive them four hours round trip tho the airpoRt. Which due to the same reason i pribably have 100 typos, eye problem are my latest issie…i cant, not to mention pain and dizziness and cramped up feet and legs just from the gas pedal…sometimes im ashamed to say i ignore their call ir text until i am strong enough to agree or not tovwhat they may ask.so I feel so alone in this. it was nice to hear your thoughts. And wow i seriously cannot see, lil, double vision,still not use to thos…im sure this is a mess:)

    • .Amy Garcia says:

      sorry to respond to my own post, i didnt think my message was posting then the screen scrolled up and i caught a line ‘this is me’sown” to the kitchen’. So i wondered what the heck do ‘they’ mean by ‘sown to the kitchen’. Then I realized that was my post. it did post. And it should be “down.” Laughing at myself, which….I give myself plenty of material, can help too. 🙂

    • ValerieB says:

      Dear Amy,
      Thank you for your kind comment. I can empathize so much with what you have written. I am so sorry for your struggles and pain. You are not alone. Don’t worry about any typos, my eyes play tricks on me quite frequently due to neurological Lyme symptoms. Thank goodness for grammar and spell check, other wise my blog posts would be a mess. I can totally identify with not wanting to answer texts or calls because you do not have the strength to.
      I’m sure you are not doing anything wrong. Chronic illness is difficult at best. You are a warrior, be kind to yourself and keep encouraged. You have a friend here in your corner. Blessings for a happy holiday season, Valerie

  11. Bree says:

    Feel like I could have written this myself! So relate!

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