New Normal

New Normal is a term used to imply that something which was previously abnormal has become commonplace.

New normals are inevitable as we grow older. Personally, I have used this term as solace to adjust to a new normal. I simply say, “I guess this is my new normal.”

This tactic feels useless, lately. Maybe it’s because my new normal seems to change rapidly. As soon as I adjust, something changes again leaving me to quickly adjust again.

Change is stressful. Any change. I’m encountering changes that I didn’t see forthcoming leaving me equally stressed and confused.

Way back when I was first diagnosed with polymyositis, there was no internet (Yes, I am old!). I learned about my disease from reading material given to me and from talking to my doctors at office visits.

What a different world it is today. My recent new normals have led me to research more about disease prognosis and complications.

Lately, I’ve been experiencing episodes that I call “crashes” or “ flare-ups”, and they are increasing in severity and frequency. The trick is to know which disease is flaring since several of them have the same symptoms. Or is it something new? Doctors have mentioned suspicions of scleroderma or Sjögren’s syndrome.

After doing a little research, I believe I have experienced a complication from polymyositis called rhabdomyolysis.

According to The Myositis Association, “rhabdomyolysis is a serious, acute condition that results from rapid death of muscle tissue. When muscles are damaged …the cells release their contents into the blood stream. When the kidneys are unable remove this waste quickly enough, renal (kidney) failure may result. In rare cases, rhabdomyolysis can even cause death. Prompt treatment is imperative to avoid this outcome.”

I also found that, “Creatine kinase (CK) is a product of muscle breakdown. Levels of this enzyme in the blood will be elevated, sometimes greater than 5,000 u/l. There may also be blood in the urine.”

Do you remember last summer after our mission trip to D.C.? I was admitted to the hospital and my CK was over 6,000, and I had blood in my urine. I didn’t realize it could have been from rhabdomyolysis, but now I believe it was.

My doctor checks my CK level monthly. The normal CK should be between 20-140 (this can vary depending on the lab). My CK is almost always over 1,000. Doctors have often questioned how I am able to walk with such a high CK.

Personally, I know people who cannot get out of bed if theirs is 200. We’ve always chalked it up as an anomaly.

Because I am used to it running high, I don’t often take it seriously. That is until now. Now I understand it’s importance as it relates to my disease and it’s progression.

Other obstacles I’ve been encountering are with my vocal chords. Lately, I’ve had episodes where my vocal chords become very weak, and I have to strain to speak. Other people can barely hear me when I talk. It is exhausting and frustrating.

The worst issue is how my abilities have become extremely limited. I will give you a few examples. A few weeks ago, we did some clothes shopping for about 1 1/2 hours at a clothing store. I neglected to use my wheelchair since we were only going to one store.

I attended church the next day, then came home and crashed. I was bedridden for at least 4 days! Completely bedridden! It was awful. My home health nurse drew blood for lab work after a few days. My CK was over 2,400. That is outrageaous!

I had a similar experience after taking my daughter to the orthodontist yesterday. We were at the appointment for 1 hour. Afterwards, I stopped at the grocery store where we purchased 4 items. I came home and crashed. I couldn’t cook dinner or help with anything. I slept through the rest of the day and into the next. I still have not recovered.

I struggle to understand what my limits are and what I should do to accommodate for them. I certainly wouldn’t think that going to an hour long appointment would be too much for me.

But maybe it’s what I did several days leading up to that appointment. I remember that I did cook a lot for my family. I did some extra cleaning. Maybe it’s a culmination of these things.

Do you understand how fragile this makes me feel? I’m not asking to go on a vacation hiking mountains or anything. I’d settle with being able to shop at a store for an hour without feeling like I hiked a mountain.

Realistically speaking, how much less can I do? I try to reserve my energy for cooking and laundry. Those are the two things I exert my energy on.

I’m also committed to attending church with my family every Sunday. It is a sacrifice. I sacrifice my comfort and what little energy I have so that I can be there with my family. So if you didn’t go to church because your big toe hurt, don’t come running to me! I have no patience for that!

When we encounter changes in life that are now permanent, we have a new normal. My new normal now is a constantly changing new normal.

The more life changes, the more I appreciate that God never changes. He is the same yesterday, today and tomorrow (Hebrews 13:8).

In order to get through this, I have to cling to that Scripture, constantly meditating on it. He never changes. His love never changes. His promise of new life never changes. And that is exactly what I need now.

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