Ups And Downs: Summer, Chronic Illness, and a New Normal

Hello friends, I’m so excited to be able to join A Chronic Voice’s link up this month. Summer is finally here, but unfortunately, that doesn’t mean a vacation from chronic illness. So I’m going to share what I’ve found helpful and how I’m coping with the new normal.

This link up is a way for chronic illness bloggers to connect by writing posts based on the same prompts. I found it so helpful last month to use the prompts as a jumping off point to not only write a blog post, but also to do some journaling for myself to process everything going on in the world and my own life.

This month, I’m using the prompts to share a little bit about what I’ve been up to lately creatively, what I’ve been struggling with healthwise, and how I’m continuing to adjust to the new normal.

The prompts for this month are Bothering, Demanding, Telecommunicating, Tolerating, and Nourishing.

Here Comes The Sun…And Chronic Illness

 

Bothering

Usually summer is a better time of year for me, so it’s been frustrating that more things seem to be bothering my health so far this summer.

Like several other people I’ve talked to, my allergies have been worse for longer this year, and I even had a sinus infection in June. Usually I’m out of the woods for sinus infections by that late in the spring, and don’t have to “look forward” to that again until the weather cools off.

Maybe it’s the fact that the sinus infection lingered for so long, but my energy levels have been bothering me more since, gosh, April I think? I have ME/CFS a.k.a. myalgic encephalitis/chronic fatigue syndrome, and it’s always frustrating when I randomly face a long stretch of worsened exhaustion for no apparent reason. I’m still practicing social distancing due to being high-risk, but the last month or so, I’ve almost not noticed, because really I don’t feel up to social interaction.

I also got the blood work back that I mentioned in my last link up post, and my TSH is all messed up again. Ever since I had my thyroid removed due to thyroid cancer, it’s been a constant battle of monitoring and adjusting to try to get my thyroid hormones in the safe range post-cancer. I’m due for more bloodwork soon, so we’ll see if my levels have improved, get an idea of how much this is impacting my fatigue.

Demanding

I’ve found a common misunderstanding when it comes to chronic illness is that if you’re out in public, you must be feeling great. People don’t realize how demanding it is just to leave the house when you have chronic illness.

I’m so excited that my article addressing this topic, What I Hope COVID-19 Will Teach Us About Smiling Through Pain, was published on The Mighty! I am now officially a The Mighty contributor, and I’m really looking forward to being able to share more with this great publication in the future. They are a wonderful resource for anyone with chronic conditions.

My article draws an example from the end of quarantine to show how it’s possible to smile even when you are dealing with chronic pain, illness, or anything else “invisible.” Hopefully this will be something everyone can relate to and it will promote more understanding of life with chronic illness.

Finding A New Normal

 

Telecommunicating

Thankfully, with my fatigue bothering me more, and with leaving the house being so demanding, telecommunicating has been a good option.

While I certainly wish they could’ve come about another way, there are some things resulting from the pandemic and quarantine that I hope will continue. One of those things is the prevalence of telecommunicating, otherwise known as telehealth for doctors’ visits.

I found in the three visits I’ve done so far that this format works really well for me. It’s been really helpful to have all of my information at my fingertips. During the video call, I can pull up information I have saved on my computer, grab my chart where I keep track of my symptoms and any changes to my medication, or even ask my mom to go pick up a bottle of my medication or supplements in the other room so I can read off more detailed information to my doctor. (Mom assistants are a must for in-person and televist appointments! Shoutout to our carers!)

While even sitting up and talking are two things that wear me out and tax my energy, overall I feel less exhausted than normal after televist doctors appointments. There’s no traveling, no sitting in a waiting room, and overall less strain on my body and health.

If you’ve tried a televisit, I’m curious to hear what you thought of it!

Tolerating

How can we tolerate all the change and uncertainty we’re facing during a pandemic? For me, it’s been very important to seek resources that help ground me in peace and my faith. I’m reminded that a lot of the things that help me tolerate the change and uncertainty of chronic illness are tools I can use anytime.

Chronic illness has in some ways provided practice for times of major change. Keeping my eyes on Jesus applies in any situation.

Here are some specific resources I’ve found helpful lately (in addition to my Bible and praying with friends over the phone). They have a theme: we have to make a conscious choice and decide how we’re going to react to circumstances that seem intolerable.

The Kingdom of Your Heart (Wild at Heart)—podcast on guarding your heart from fear in uncertainty.

A 5-Day Devotional For Women Who Want to Simplify Life (Pretty Simple Ideas)—I’m planning to start this devotional next week!

How to Be Intentional This Summer (SarahGeringer.com)—great blog post about being intentional, even when things aren’t going to plan.

Life is a Beautiful Mess (SharlaFanous.com)—wonderful blog post about embracing the mess and seeing the beauty in it.

How to Adjust to New Normal – 7 Strategies (Pink Fortitude)—this blog posts talks specifically about chronic illness, but I think everyone will find it applicable right now.

Accepting a New Normal When You Miss Your Old Life (Despite Pain)—an honest blog post on what to do when coping with your new normal due to chronic illness.

Living A “Simply Special” Life, Despite Chronic Illness, Despite COVID-19 (My Med Musings)—an encouraging blog post about looking for the little things.

Making Time for Creativity

 

Nourishing

Creativity is so nourishing for me! I’m thankful I’ve been able to do some creating the last two weeks.

I love making and sending a card that I customized particularly for the recipient. My mom has been cutting out shapes to use on cards, so I can pick what combination of colors/shapes I want to use, and I just have to assemble them. It’s a lot easier for me when all the prep work is done. If you’re able to get assistance so you can be creative, I highly recommend it!

I’ve also been doing a little coloring. (I enjoy altering color book pages, and sharing them on  my blog.) When my energy is zapped, even simple creativity is more nourishing than nothing.

I hope I get to do some more creating this month…I don’t know if it’s something to do with the idea of Christmas in July, but I’ve been wanting to work on some Christmas gifts early. We’ll see what happens!

 

Be sure to check out what other bloggers have shared about these prompts.

How is summer treating you so far?
What’s helping you adjust to the new normal?
Can you relate to what I shared about televisits, health, or creativity? Drop me a line in the comments, I’d love to connect!

You may also like:

Mid-Year Reflections In A Year Of Pandemic: June Linkup
Things I’m Doing For My Health Right Now
How To Stay Connected From A Distance
Empty Calendar While Stuck At Home? Record The Good Things!

Note: This blog post is meant for informational purposes only and is not intended as medical advice. I am not a health care provider, and what I share is based on my personal experiences.  Always talk to your doctor when making changes to your treatment or before trying something new.

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