I was thinking about my youth and had a vivid recollection of living a normal life. It honestly felt like a lifetime ago. There were days of going through life in a way that most people recognize as just regular living.
Normal days, for me, consisted of dressing daily and doing things. Some of the things I did:
- Dressed and fixed my hair
- Went outside
- Looked up at the sky
- Played sports or went for a walk
- Went places (shopping, church, friends house)
- Ate normal food (Didn’t have to be on a special diet to improve health)
- Celebrated things often
- Tried new things
- Helped others
I’m really tired of not being able to have normal days. How about you? Chronic illness has changed my life in almost every way. There are reasons for this.
Living With A Different Outlook
When you live with constant pain it changes your outlook. When I first started dealing with this, I had a short-term vision. I didn’t expect this to last so long. I could still remember feeling pretty good. Over time, this leaves and the outlook becomes one of survival.
When you add more and more diagnosis’s the doctors add more and more drugs to combat the illnesses. With each medicine, the side-effects cause more fatigue, nausea, and brain fog. Even my short-term memory has been greatly affected. The outlook becomes negative and no change is in sight.
The Constant Failure Of Trials
I can’t even remember how many studies, articles, books, and websites I’ve read about how to improve my illnesses and pain. I’ve tried numerous diets, supplements, exercises, and medicines to stop the awful pain and symptoms of my illnesses.
Many of these trials have cost me a lot of money and of course, time. When the doctors prescribe new drugs, there are months of waiting to see if these will help. The hopes get dashed when the drug does nothing (or very little), and the side-effects have been terrible.
I feel that stopping all the drugs and just trying to deal with the diseases as best as I can might be the next step. The foggy-brain, which feels like a veil over my thoughts, just seems to be “Not-Worth-It”.
Life Keeps Flying By
As I look at myself in the mirror, and see someone who has aged severely in the last five years, I can get depressed. I don’t like myself. I just mean that I don’t like what I’ve become. I feel like a victim of not only the diseases, but a victim of the medical treatments.
I admit, the doctors are right on one thing. I AM a complex case. The diseases I have are:
- Sjogren’s Syndrome
- Ehlers Danlos Syndrome
- Mast Cell Disorder
- Small Fiber Neuropathy
- Chronic Migraine (even though it has changed)
- Heart Disease (Left Bundle Branch Block)
- Sleep Apnea
- Degenerative Disk Disease
Many of these health problems cause chronic pain, and many of the things that help one disease can make it worse on another. Many of these diseases will make the prognosis for another disease worse. Doctor’s don’t usually see a patient with the same list of problems. And, they don’t have a plan to fix my list.
The bottom line to all of this mess is that I still want to live a joyful and fulfilled life. I pray daily for the strength to endure the pain and for help. I know that God hears and gives me the inner strength to go on and feel joy. But, there are still changes that I want to make.
To try and feel like I’m living a more normal existence, I hope to add more “normal”activities to my daily life. I plan to make a list of the things that I miss. Then, I will add one at a time to my weekly calendar. I’ll need to have my family help me in order to pull this off. I know that they’re willing to help me.
I hope that all of us can feel encouraged to keep trying. No matter what garbage is being thrown at us from our damaged bodies, we have to keep fighting forward. Although my immune system is trying to kill me, I want to try and enjoy each day more than ever.
@2020, copyright Lisa Ehrman