Life with a chronic illness can be incredibly hard. Most of us who face chronic health issues have one thing in common: our lives do not look the way they did before we got sick. No matter the level of debilitation, the symptoms we face change the way we function.
Changes may be big or small depending on the severity of symptoms at the particular time. For some, it’s a roller coaster of symptoms that get better or worse (or both) each day.
Some people are able to be functioning members of society, while others are confined to their homes, unable to get out into the world to do things as “normal” as grocery shopping.
I’ve been in both camps. I know what it’s like to try to manage a full-time job while very ill. I also know the challenges of being unable to get out of bed for long periods of time. In both situations, my life was vastly different than it was when I was healthy. Accommodations had to be made to conserve energy and meet my needs. I was often discouraged.
So, how do we make the most of our situations?
Hello sweet girl:
I am so sorry you’re hurting! I’ve been in your place hundreds of times in my own battle with chronic illness. Even last night, I was there again.
The physical, mental, and emotional burdens that come with the territory of chronic illnesses can be paralyzing, leaving us uncertain of how to function “normally.” There’s grief that’s hard to explain to those who haven’t been in your shoes.
In all of the pain and hardship, it might seem like giving up is the answer.
The idea of letting go of your life, or of moving away and starting over, may sound appealing.
If you’re anything like me, you wish you could just run away from your problems instead of facing them head-on.
My natural tendency as a “go-getter” is to strive – to see a problem and tackle it. But, I’m to the point where I’ve grown weary. Following a treatment protocol and not seeing results can be discouraging. Living in a state of continual ups and downs is draining.
A life that includes managing a chronic illness can be a real challenge! If you’re in a similar boat as mine, I want you to know that you are not alone. The list of things you may be responsible for would be overwhelming for anyone, but when you add in debilitating symptoms life can get even more cumbersome.
While I wish that I had all the energy in the world to accomplish everything I desire, it’s not realistic right now. As I prioritize health, there are other things that grown adults should be able to manage that I just don’t quite have together. I’m learning that it’s okay. It’s even good. I know my boundaries right now.
If you’ve felt like you’re drowning while facing a chronic illness and don’t know how other people seem to live “normal lives” while facing similar challenges to yours, you’re going to see that I don’t have it all together. In fact, my life is often of the opposite of “all together”…
If you’re anything like me, then you are in good company!
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Here are 19 things I don’t do as I face Chronic Lyme Disease:
1) I don’t cook
The crockpot is my best friend. I’ll throw in meat and veggies for some lunches and most dinners. Then, I drink a green juice/smoothie or a bone broth protein shake (often blended with with almond milk, moringa from India, blueberries, spinach, and ice) once or twice a day.
2) I don’t make plans
It’s that simple. My current schedule doesn’t allow for me to make plans because there’s a 90-95% chance that I’ll end up canceling them. Instead, everything is done on an “if I feel up to it” basis. It’s working for now.
Suffering from a chronic illness is hard!
Throughout my journey with chronic Lyme Disease, I have had the pleasure of meeting some amazing chronic illness warriors. The people I have met may have different backgrounds and experiences, but there is an underlying thread that binds them together.
Those with chronic illnesses often share that they feel misunderstood by the people around them.
Even those with strong support systems may feel like the healthy people in their lives just can’t quite comprehend the pain they experience.
Being unable to relate to our friends and families can leave us feeling discouraged and misunderstood.
For anyone out there who cares about someone with a chronic illness, I want to let you in on what I truly feel can make all the difference in being able to better support the chronically ill.
Are you a dreamer?
I sure am!
I absolutely adore thinking and dreaming up big plans and goals. The idea of fresh starts and new ideas spurs on excitement in my core. Growing up, I couldn’t wait for the first day of school each year. The newness of crisp notebooks, freshly sharpened pencils, and clean erasers made me quite the happy camper.
For me, enjoyment can be found in laying out goals with a plan in mind.
But now, as we approach the new year, I find myself contemplating how goal setting should look when battling chronic illness.
Realistically, my goals may not come to fruition.
It won’t be for a lack of trying or desire. It might be because as hard as I try, my body and mind just won’t let me do it all.
I’m learning that it’s okay. It’s all right to be unable to achieve everything we want, even if the world around us gives us messages about working harder and prioritizing.
Those of us with chronic illnesses are already fighting an uphill battle just to get through the day.
During the hardest times of my life, I had trouble consistently reading the Bible and connecting with God.
Have you ever felt that way?
Even though I was a Christian and wanted to honor the Lord with my life, which included being faithful in daily prayer and Bible reading, I found myself feeling distant from God. Whenever brain fog from Lyme Disease and co-infections would come on strongly, I would be faced with a block in my mind. That mental block left me unable to pray or comprehend scripture in the way I desired.
I just didn’t feel connected to God anymore.
In Finding Hope with the Fog (get your copy – it’s free!), I share about the way God met me in one of my weakest moments when I was having a panic attack. He used the Psalms to remind me of how good He is. He showed me that I can always turn to Him in troubled times even if I can’t always feel His presence.
Reading the Psalms is something I now do regularly because I can connect to the emotions of the Psalmists and am always reminded of the bigger picture in our suffering.
It may feel as if God is distant and He doesn’t hear our cries of suffering, but that’s not true. God knows. He loves us and He will respond and be our place of refuge!