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.
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.
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.
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.”
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.
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!
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.
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.