A Chronic Voice has again helped us to link up and share our thoughts on these prompt words: Forgetting, Modifying, Maintaining, Vocalizing, and Trusting. April has arrived quickly and this year, like all others, is rushing by. I always feel comforted when I’m looking back and ahead to express my emotions about living with chronic illness.
Forgetting is very easy, because my brain fog has been very noticeable lately. I forget just about everything unless it’s written down. Lately, I’ve forgotten to look at my calendar and lists. This causes me so many problems. As a blogger, I have deadlines and if I don’t check my calendar I will miss things. Many nights I’ve had to stay up all night to get a book review done by morning. This isn’t how I planned to blog. But, my brain fog is out of control.
With so much forgetfulness I will have to back out of much of my work, unless I can do better with deadlines. I forget about doctor’s appointments, too. Brain fog is like being 30 years older than you really are. People don’t understand and some people think that you’re just lazy or untruthful. I don’t have an answer for any of this.
I’m trying to modify my diet and lifestyle as much as I can. Using the Cardio App, I’m taking my blood pressure and heart rate daily. I also note my weight and add my diet. This app offers many choices of menu items to encourage eating healthy. If I would be able to follow the diet carefully, it would guide me into steady weight loss. The diet is also a great cardio diet and would lead to lower cholesterol. Although I’m not following it perfectly, it is helping me to be more accountable.
We have so many things that need to be maintained. We can try to maintain our health by going to appointments, taking our medications on a regular basis, seek out alternative resources, eat healthy food, stay hydrated, and on and on. Our homes need to be maintained so that we don’t end up with expensive repairs and to provide a healthy space to live. If we own automobiles, they must be maintained to help them last longer and skip expensive repairs.
Many times at doctor’s appointments it’s obvious that the doctor will be satisfied if we can just maintain the level of health we have. They have given up on improving our health or symptoms, but feel good if we can maintain the status quo. I find that I also lower my expectations, even though I love getting my hope up concerning a new drug, supplement, or other treatment.
Sometimes it seems that a treatment might be helping, but then it fails. It may be because we imagined that it was working. It also might just be a coincidence because we were in between flares and just felt a little better. You have to be pretty mentally tough to live with chronic illness. Because our minds are on a roller coaster of hopes up and hopes dashed.
As a former music major, the term vocalizing always brings to mind a singer going through their vocal warm ups. But vocalizing is just putting thoughts into words. Some people speak many more words than others. They say that women say many more words than men, but some of us are not in that mold. I’m an introvert and vocalizing actually tires me out. I prefer to listen.
Sometimes a person like me is misunderstood in a social situation. I would enjoy listening to others talk more than speaking myself. It also makes it more difficult for me when I do speak up. When you don’t practice speaking often, your ability to speak seems to get weaker. I’ve always preferred to stay home and be quiet, but I have gotten worse because of the pandemic.
I feel like going out socially now brings me even more anxiety than I had in the past. I dread having to speak and sometimes just opening my mouth is a huge effort. My face is actually too tired to open up. I don’t think that this is a good development and wonder if it’s depression? I do self-analyze and have always done this. It can be helpful or harmful, and I am not really sure where I stand.
Trusting is fundamental to living. We have to trust things and people to survive this life. I trust the chair to hold me up when I sit down. I trust the car to get me from point A to B. As a chronically ill person, I have to trust that the medicine I’m taking is real. I trust the pharmacist to give me the right dose. Most things we trust in become automatic. But some things or people we must make a choice to trust.
When I go to a doctor and he says take this or that, I must make a choice to trust him in his guidance. Drugs are powerful and can be dangerous, so trusting to put one in my body isn’t automatic. It’s easier for me to go along with a new drug, if I remind myself that I can always stop taking it if something bad happens or if it doesn’t work.
Sometimes a doctor or treatment makes me feel uncomfortable. Maybe red flags will pop up in my head when I hear a recommendation. I may decide right then and there to not trust this person. Thankfully, I do have choices. I may not have very good choices, but I can always say no.
The only time I can trust blindly is when I trust God. I know that I can trust Him in every part of my life. He may let me suffer with illnesses, but I can still trust that He has my best interest and His plan is the right one for me. This type of trust gives me a stability that I wouldn’t have any other way.
But blessed is the one who trusts in the Lord,
whose confidence is in him.
They will be like a tree planted by the water
that sends out its roots by the stream.
It does not fear when heat comes;
its leaves are always green.
It has no worries in a year of drought
and never fails to bear fruit. Jer. 17:7-8
@2022, copyright Lisa Ehrman
Disclaimer: I’m not a medical expert. This post contains my experiences and opinions and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.