Living With Chronic Illness

“To Nap or Not to Nap, that is the question.

Whether ‘tis nobler to give into the urge and nap.

Or better to resist and hold out.

Trying desperately to stay awake and function despite the fatigue.”

~Misquote of Shakespeare’s Hamlet

I really struggle with fatigue. It doesn’t seem to matter how long or how well I sleep, I’m still exhausted. Its really frustrating trying to function when I’m so tired all the time. I hate trying to do cognitively demanding tasks like simple math problems as my brain just blanks. I know what I’m doing should be easier than this, but my brain’s just so tired it doesn’t want to cooperate.

I’ve heard a lot of debate over whether its okay to nap or not. I get that napping undermines the sleep pressure your body builds up over the day so you theoretically can be very tired by bedtime and go to sleep. And that napping regularly is poor sleep hygiene and a habit that is very hard to break once you start.

But then there are days when I’m so tired I just can’t function. I try to tough it out, but my body just can’t do it. I also tend to get really, really irritable, to the point where everything annoys me and I just can’t cope. Or the pains so high that I can’t handle it.

In these cases, I’ve learned to be gracious to myself. Yes, napping every day is not ideal and not something that I want to be doing. But then there are days when I need a nap to get back on top of my pain and symptoms. Going back to bed in the morning, or taking a nap in the afternoon allows me to do what I need to do. As long as it is (ideally) not an everyday thing, I’ve learned to accept that this is what I need sometimes. Or if I have a nap before a big event, then that allows me to go and have fun without being so exhausted that I can’t participate as I want to.

I try to keep these naps shortish. I was told at one pain clinic that taking 45-minute naps doesn’t disrupt your sleep schedule and circadian rhythm, which is nice, but some days I need more sleep than that. I’ve also found that crashing on the couch for a half hour or an hour with a good podcast is a good way to let my body rest and recharge without actually napping.

But hey, I totally get it if you nap regularly, no judgement. That’s just not what I’ve found works best for me.

Hi, I’m Emily Summerhayes, I’m thrilled to be a guest here! When I’m not crafting, sewing, or drawing, you are most likely to find me in the garden ripping out weeds. Or playing with my miniature goats Cinnamon and Sesame or cuddling my cats Thomas and Cleo and dog Diesel. I have CRPS, FND, and POTS, but still love to create, swim, volunteer with 4-H, and be outside.

One of the hardest things for chronically ill individuals to do is to say no and mean it. We are usually twisted and turned in so many directions. And most times we just keep on going in a mind fashion.

One of the reasons why this may be the case is because our friends are not chronically ill. So, we may feel that they won’t understand us if we tell them we can’t come to an outing after certain hours because this is our time to rest and relax.

Regardless of whether your friends understand you or not, you must honor who you are and what you are going through. If you don’t feel well, you don’t have to keep on going past your limits. Instead, it is in your best interest to rest and relax and just be and tell your friends that you can’t come to their outing.

Why is it so hard to say no to our friends? Because most of us don’t want to hurt our friends. And that is an honorable reason for most of our lives before we became chronically ill. But does this attitude serve your now?

I know in my case, when I was first diagnosed with Fibromyalgia, I was putting my needs on a back burner. I honored the needs of my friends. So, if they wanted to get together and go to a party that I hated anyways, I went so that I didn’t make a nuisance of myself.

But then one day, I felt I had to pause. I wondered if it was better to be inauthentic to my own needs and deny my needs in order to fit in with my friends? At first I just thought going along was honorable. But I later realized that it was detrimental to my health and well-being. So, I started to say no.

It felt awkward and stressful at first. But I came to learn that I was the most important person in this equation and I had to look out for myself. As a chronically ill individual, I knew my life would be different. And this was one prime example of it.

So, I started to stand up for myself and look my friends right in the eye, with love, and say, sorry, but I won’t be able to join you tonight or today.

Having a chronic illness requires that you are honest with what you can and cannot do with yourself and then with others. That is an important component of self-love.

Yet self-love can be so difficult to bring about. It can be hard for us to feel well enough to give ourselves the love we need. However if we don’t, who will?

Today, take a look at how you are feeling. If you’re having a hard day, please be kind to yourself by learning to say no.

Try it!

Irene Roth

It can be hard for us to ask for help. After all, we may have been resilient all of our lives. But then we became chronically ill and our life changed in what seemed like a heartbeat.

It’s understandable that we don’t want things to change. However, when we become chronically ill, things must change. Without delegating and asking for help, we will become increasingly frustrated, stressed, tired, and possibly unable to sleep because of our pain.

Therefore, it is essential for us to take stock of all the things we have to do and perhaps decide what we can do, given the time and energy constraints that we feel, and the things that we can’t do.

Once we decide what we can and can’t do, it is important for you to look for people who would be willing to help you. The good news is that most people would be happy to help us. But are we open and humble enough to ask for help? 

If not, we should become mindful of the fact that it’s in our best interest to ask for help. We should be self-compassionate with ourselves and find ways to show such mercy towards ourselves by asking for help.

Start with your family members and friends. Many of these people see how in pain you are on a daily basis. They may have even said Let me help you with this. And you probably said oh no, I’m fine.

Believe me I know this sequence of thinking very well. I actually live it. And I can stubbornly want to keep going when I clearly shouldn’t be.

What I had to do is realize that I can’t do it all. Once I realized how little energy I have and that the most loving thing to do is to ask for help, I started asking for help. It’s not that I liked it. I still don’t. But I have now come to realize that this is the most loving thing I can do for myself.

Try it!

Irene Roth

One may wonder why celebrate small wins when you’re living with chronic illness. I know I did for quite some time. The reason why we have to celebrate good moments as if they are great wins, is because a lot of chronically ill individuals don’t have a lot of good moments unless they actually make those moments.

What do I mean by this?  Well, when we live with pain and fatigue a lot of our days, we don’t really feel like celebrating. It seems that everything is always the same—on one plain. But as we celebrate these small moments, we suddenly realize that this isn’t the case. We have a lot of moments that good or even very good.

This is why celebrating small moments or good days is so important. Now most of us can’t get away with celebrating with a pizza and wine party or a wine and cheese get-to-getter with ten other people. However, we can go out for a quiet health lunch with a friend or spouse, or a nice walk in the country.

So, how can we celebrate these small moments? I think it’s important for us to have a list of places and things that we enjoy doing and that will put a smile on your face. Then when you want to celebrate a good day, choose one thing on your list and do it.

Here is my joyous list that I turn to when I want to celebrate.

• I go for a walk around the river, either alone or with my spouse.

• I go out for a nice lunch at my favorite spot.

• I take a short road trip – I love driving in the country and everywhere. Getting out of my ordinary place is invigorating and inspiring.

• I go for a massage. My massage therapist is great and she really helps me feel better about life.

• I buy myself a few new seasonal items for my closet. I find buying new clothes can really lift my spirits.

• I go for a coffee to my favorite café. I usually head out there alone to just sit in at a table alone and just let my thoughts drift.

• I watch my favorite TV series. I just love distraction from my pain and fatigue. But what’s more it usually puts a smile on my face.

So, as you can see, my list isn’t complicated. I can do these things without breaking the bank and I know in my case it puts a smile on my face.

Now it’s your turn. How can you celebrate these small moments of bliss and happiness?

Irene Roth

One of the best ways to optimize our health as chronically ill individuals is to take a few pause breaks during the day and turn inward and take a few deep breaths.

Not only will this practice help us to de-stress, but it can also help you feel less pain. This is because pain is influenced by tight muscles and overactive, sensitive brain activity. Therefore, if we can downregulate our stress levels, we can improve our pain and feeling of wellness.

Practicing deep breathing techniques need not be difficult. In fact, the simpler the practice, the more likely we will practice on a regular basis.

Here are some steps to a simple deep breathing practice.

Find a Comfortable Position:

Sit or lie down in a comfortable position. Use pillows or cushions to support your body if needed. Make sure you’re in a quiet and peaceful environment where you won’t be disturbed.

Begin with Relaxation:

Close your eyes and take a few moments to relax your body. Start by focusing on your breath, noticing the natural rhythm of your inhales and exhales. Let go of any tension in your muscles, starting from your head and working down to your toes.

Deep Breathing Technique:

Start by taking a slow, deep breath in through your nose, allowing your abdomen to expand fully. Count to four as you inhale, feeling the breath fill your lungs completely. Hold the breath for a moment at the top.

Exhale Slowly:

Exhale slowly and completely through your mouth, counting to six as you release the breath. Focus on fully emptying your lungs, allowing your abdomen to contract gently.

Repeat:

Continue this deep breathing pattern for several minutes, focusing on the rhythm of your breath. If you feel comfortable, gradually increase the length of your inhales and exhales. If at any point you feel dizzy or uncomfortable, return to your normal breathing pattern.

Mindfulness and Awareness:

As you practice deep breathing, bring your awareness to the sensations of your breath moving in and out of your body. Notice how your chest rises and falls with each inhale and exhale. If your mind starts to wander, gently bring your focus back to your breath.

Remember, the key is to listen to your body and adjust the practice to suit your individual needs. If you have any concerns or medical conditions, it’s always a good idea to consult with your healthcare provider before starting a new breathing practice.

Try it!

Irene Roth

I am a sucker for productivity audiobooks. I love listening to stories of how people have found the perfect system for creating better habits, finding better focus, or harnessing creativity.

Of course, I imagine myself in these stories. I envision days of productivity in the mornings, exercise in the afternoon, and fun in the evenings. Inspired, I pull out my trusty index cards and start mapping out the perfect schedule. I’ll get up at 6:30 am, then I’ll do 10 minutes of stretching for my perpetual neck pain, then I’ll read and get writing done and…

And then I wake up with a migraine. Or the seemingly permanent pinched nerve in my neck keeps me up late. My head is foggy. I’m exhausted. So instead of seizing the day, I stagger through it.

Once or twice, I have managed to achieve my perfect schedule for one or two days. But by day three, it inevitably runs me into the ground, and I spend a day in bed.

My perfect schedule is just a fantasy. And yet I cling to that fantasy. I keep trying again and again. But why?

The Allure of the Perfect Schedule

Do I think the perfect schedule will make my chronic illnesses less disabling?

Do I believe that “productivity” is the end-all, be-all of life?

Do I really think my body—the one living with pain and disability that is incredibly unpredictable—can fit into a schedule?

I’ve been pondering these questions a lot lately.

After 20 years of working full-time salaried jobs in the nonprofit sector, I’m now happily self-employed. For the first time in my adult life, I have the power to set my own schedule. I decide how many clients I take on and how many hours I work. I could even choose to fire a client and still be fine!  

But even though I have intentionally created this freedom and flexibility, I still find myself trying to design the perfect schedule. I cannot let go of the idea that I could be doing more.

I suspect I am not alone. Those of us with chronic illness understand that, for every choice, there is always a price.

Our energy is finite. Our bodies rebel when we try to do too much.

I’ve long known that one of my biggest migraine triggers is finishing a deadline. It’s not the stress that triggers the migraine. It’s post-stress. I recently discovered this is called a “let down” headache. 

But even too much fun can be a trigger. Last Saturday, I woke up with a migraine after spending an evening laughing with friends and their children. I wasn’t even up late. I didn’t drink alcohol or eat any trigger foods. But I’d smiled so much my face hurt. In the end, a migraine seemed a fair price to pay for that evening.  

Routines vs Schedules

Some of the most common advice for those living with chronic migraines is to keep a steady sleep schedule. We are supposed to make and stick to a consistent daily routine. We must eat well, get gentle exercise, and minimize stress.  

In other words, we must find the optimal way to structure our days and the optimal timing for our habits.

Yet, as I was hashing out my millionth version of the perfect schedule—one that would balance client work, personal writing, and rest and self-care—a friend suggested something that made me stop and rethink the whole endeavor.

She asked: “What if there is no perfect schedule?”

I knew the answer immediately. There is no perfect schedule, at least not for me.

My chronic illnesses are unpredictable. I can manage triggers, but I cannot control or confine my illnesses. I can only choose how I live with them.

Having a schedule implies control and rigidness. It suggests things must be done at a certain time and in a certain way.

In contrast, a routine implies a living practice. It suggests specific things to do but provides flexibility for when and how you do them.

Routines evolve. Routines adapt. Routines are not schedules.

Maybe, then, it’s time to put away the search for the perfect schedule. It’s time to stop “optimizing” my time and instead accept that each day will be different.

Some days will be great! And I can celebrate those. But I can’t reproduce them on command. That is the hardest part to accept. I don’t think I’m fully there yet not fully accepting of that reality. But at least I am aware of the real challenge ahead.

Camellia Phillips has loved writing since first grade, back in the days of graphite-stained fingers. Since then, her short fiction for children and adults has appeared in The Caterpillar, CALYX Journal, and cream city review, and her nonfiction has appeared in The Mighty, Spoonie Journal, The Chopping Blog, and La Dolce Vita Lifestyle Magazine. Her middle grade manuscript, Rat, Jack, and the Impossible Job, won Scribbler’s first-ever Manuscript Contest in 2022 and the Pacific Northwest Writers Association Literary Contest in 2021. She holds an MFA in creative writing from The New School. In 2019, she was selected as a 92Y Women inPower Fellow, a program for rising women leaders in New York City, but today she lives in a small village in Sicily with her author spouse. Camellia blogs about the reality of living and working with chronic illness—and having awesome adventures in the process—over at www.camelliawrites.com and www.ahouseinsicily.com.