Here you will find my slides from my presentation at The Arthritis Life Hack Extravaganza on tackling pesky fatigue. It is an honor to have been asked to speak about this topic. There is nothing more that I want for someone to walk away with some more tools in their arthritis toolkit from my presentation.
Please note I used words from my published essays on fatigue from:
2 – Land Acknowledgement
3 – Introduction to who I am and learning objectives
4 – Arthritic Rule of Thumb
5 – What fatigue feels like quote
Slide 6. Fatigue turned my world upside down. Here’s why…
All humans experience the feeling of “tired,” but chronic fatigue is so much more than getting too little sleep or needing rest at the end of the day. Let’s get this out of the way: Chronic fatigue is a lot more than just being tired. It’s a serious symptom of many different illnesses.
Chronic fatigue impacts you both physically and mentally. It doesn’t go away with rest. It’s far more intense than what I remember from my healthier (younger) years before chronic illness. I remember feeling indestructible, staying out all night drinking and dancing, then going to work the next day on minimal sleep and the faint aroma of whatever my poison was the night before on my breath.
Ultimately, I discovered that events, fun, and work don’t always match up. Neither does the cycle of chronic illness.
Today, I can do next to nothing one day and the following day I need to stay in bed with an invisible blanket of fatigue weighing down on me like a ton of bricks. Even the most mundane tasks are exhausting and excruciating both physically and mentally.
Fatigue turned my world upside down. Here’s why…
SLIDE 7 – Imagery
Fatigue Is Debilitating
Sometimes my pain is manageable, which means it’s there but it’s nothing I can’t handle — or my medications have kicked in for pain relief. But fatigue is impossible to manage with medication or treatment. I can’t put ice or heat on my fatigue.
Why Fatigue Is So Debilitating
While living with chronic pain is incredibly debilitating all by itself, fatigue can have an even bigger impact on my daily life. It has taken me years to understand, treat, and navigate.
Living with fatigue is incredibly frustrating and stressful because it impacts so much of what I am capable of each day. Fatigue is a major reason I do not hold down a “normal” job and went on disability at age 29.
I’ve learned to adapt to being in constant pain, but fatigue is much harder to push through. Your body feels like it’s powering off like a dying battery. No matter how many lists I make to juggle daily life as a single mother with chronic illness, life is often moving a lot faster than my fatigue can keep up with.
Fatigue is misunderstood
People understand “I’m in too much pain to do that” much more easily than “I’m too tired to do that.” When I speak up about my fatigue being worse than my pain, it’s usually brushed off, while the focus is always how much pain I’m in. Having people, including medical professionals, not believe you when you say fatigue impacts your ability to do something just makes you feel alone, diminished, confused, and lost.
You wouldn’t call someone recovering from a heart attack or undergoing cancer treatment lazy. Yet chronic fatigue — which is due to underlying medical reasons — has this way of making those it impacts appear lazy.
Fatigue robs us of our ability to think clearly and of our motivation. We are not being lazy when we can’t get out of bed, go to work, run errands, or play with our children. We are physically and mentally unable to.
You would never call someone dealing with a debilitating illness “lazy” if you knew what they were going through on an everyday basis. Some of our most severe symptoms are invisible, which is part of the problem.
Fatigue makes me flaky
Fatigue annoys others, not just myself. I know I made plans with you two hours ago, but sometimes fatigue is sudden and without warning. I despise hearing “Just push through it” when my body’s fighting itself inside and people are only judging what they can see on the outside. You can’t see my fatigue until I’m asleep or missing, again.
Fatigue makes self-care difficult
I’m too tired to prepare food for myself — especially breakfast, which then makes me even more fatigued. Too tired to shower daily, let alone wash my face, or keep up with a regular beauty routine, which I once did religiously as an esthetician. At least my hair is healthier from not being able to wash it every day. Thank goodness for dry shampoo.
Taking care of yourself turns into a full-time job and involves being consistent with strict diet restrictions of sugar, GMOs, and gluten (because they make you foggier) — plus rest, medications, treatments, and exercise. Ironically, to treat fatigue, I have to first make it worse by forcing myself to exercise to get my heart rate up, while not overdoing it or hurting my joints. Really, all I want to do is eat cupcakes.
Fatigue makes me neglectful
Fatigue makes simple things like keeping up with laundry or dishes a constant struggle. I’m balancing my illness, work, parenting, self-care, and all the never ending housework. That’s overwhelming even without illness. Fatigue makes me dream of having a maid or personal assistant.
Fatigue is expensive and without a cure
As much as I love coffee, it doesn’t touch this fatigue. There’s no cure or fix for fatigue. I’ve spent more money than I’d like to admit searching for things that work, but I’ve still come up short — and tired.
Fatigue is lonely
When consumed by fatigue, watching the beautiful world move by without you feels like you’re trapped inside your own invisible prison. Fatigue makes me nervous to meet new people or have a social life. It forces me to question what I can offer to others in a relationship of any kind. How do I explain it? I’m terrified of forgetting what I was about to say, or not being able to process what someone just said, or of being too tired to participate.
Fatigue makes parenting harder than it already is
Any parent knows parenting is hard and exhausting. The energy of a child and chronic illness don’t match, not even close. Fatigue makes me feel like a bad mother. I struggle at night to even have the energy to read to my 9-year-old son. The guilt is often unbearable, but he still loves me and has shown incredible empathy at such a young age.
Slide 9/10 – How I Explain Chronic Fatigue to Those Who Don’t Have It
Everyone gets tired from time to time. Even the healthiest of healthy people feel tired. This might be why someone who hasn’t experienced chronic fatigue might not understand the differences between tiredness, laziness, and fatigue. If you’ve never experienced the wall that fatigue creates inside you — blocking your ability to function normally — you might not understand what life with fatigue is like.
Back when I was healthy I’d say the closest feeling I came to fatigue before my diagnosis were
- You had the flu and it knocked you out for a short period. You were too sick to get much done, and definitely too sick to work or play with your children.
- You had too much fun and a few too many drinks one night, then couldn’t get off the couch the entire next day. You felt so weak and tired that you had to call in sick with some made-up illness.
But those go away. Chronic fatigue resembles these situations, but it’s worse because it doesn’t get better with medicine, rest, caffeine, a greasy breakfast, or time.
Slide 11 – Impact On Mental Health
What’s more, fatigue has this insidious way of creeping into and changing my personality and mood. Living with chronic fatigue often makes me feel:
- Flaky (I can’t always predict when fatigue will make me cancel at the last minute or take longer than I need to complete a task)
- Forgetful (Brain fog/cognitive dysfunction soars when fatigue is high)
- Full of guilt
- Lazy or slow
Slide 12 What Causes Fatigue?
If you are feeling overly tired and nothing seems to help, you might be living with an underlying health condition. Google “diseases that cause fatigue” and you’ll see a host of them: autoimmune diseases, fibromyalgia, diabetes, thyroid problems, mental health conditions, and many more.
The culprits in my chronic fatigue are rheumatoid arthritis, anxiety, depression, fibromyalgia, and nutritional deficiencies such as iron, vitamin D, and copper.
It’s safe to say I am constantly tired even though I have a love affair with coffee.
Slide 13 – My Fatigue Triggers
Fatigue is always present in my life, but over time I’ve learned that different situations can bring it out more. These can include:
- Poor diet or loss of appetite
- Lack of exercise or too much exercise
- Cannabis (while it may help with pain and symptoms, it can also cause tiredness and be demotivating)
- Menstrual cycle
- Environmental factors, such as pollution
Slide 15 – What Helps My Fatigue
Even though nothing can completely alleviate my fatigue, there are some things that make it more manageable. If I don’t treat it, it gets worse. To combat fatigue, my go-to habits include:
- Getting regular exercise and movement (I have exercises for good days and the not-so-good days, a little bit of moving usually helps me)
- Eating healthy and stay hydrated
- Keeping a sleep routine
- Resting (but not getting too much rest)
- Getting Fresh air
- Minimizing stress and keeping things simple
- Tracking my health and keeping a symptom journal
- Writing down things that are important
- Reminding others to remind me about things that are important
- Taking certain vitamins and supplements like B complex, vitamin D, iron, and green tea (these help but they are by no means a cure. Be sure to speak to your doctor about what may be right for you as many of them can have contraindications with medication or health conditions.)
- Being kind to myself: I am fighting to climb an invisible mountain
Slide 15 – Daily Life Fatigue Tips
- Be your own advocate
- Meal prep during your best hours
- Taken frequent short breaks
- Plan rest days
- Use a shower chair
- Know your best hours for socializing or appointments
- Avoid too much alcohol and sugar
- Ask for help/Delegate tasks
- Delivery Services
- Pace yourself
- Don’t pack too much into one day
- Get up once an hour and move for 5- 10 minutes
- Limit recreational screen time to 3 hours a day
- Dry Shampoo
Slide 16 – Painsomnia
While my rheumatoid arthritis (RA) was responsible for a lot of my sleep problems, at the same time, getting poor sleep was also making my arthritis worse.
Painsomnia means being unable to sleep because of pain that makes it difficult to fall or stay asleep. People with chronic pain are no stranger to painsomnia. Some struggle, like myself, with it nightly. Here’s how my sleep issues affect me.
Fragmented sleep: I often wake up several times in the night, sometimes for a few minutes or sometimes for a few hours. Sometimes it’s physical because my body is in pain. If I wake up in the middle of the night, pain can make it too distracting to fall back asleep. Other times it’s mental because my mind is racing from the anxiety and stress of living with a chronic illness. Other issues play a role too: infections, side effects from medication, heat waves, you name it.
Too much sleep: Some of the same things that can make me unable to sleep can also cause me to sleep too much. Sleeping too much can disrupt my life in a number of ways.
Fatigue and napping: When I am having bad fatigue, I need to nap during the day. But while my body craves the naps, this routine can throw off my sleep schedule at night.
Poor sleep impacts my health in many ways. And while my RA was responsible for a lot of my sleep problems, at the same time, getting poor sleep was also making my arthritis worse. Bouts of bad sleep make me:
- Become very forgetful (increase in cognitive dysfunction, or brain fog)
- Have more malaise (that flu-like feeling that is common in inflammatory arthritis)
- Become more sedentary
- Have more pain, stiffness, and inflammation
- Experience more depression, anxiety, and stress
- Struggle to do all the tasks and errands I need to get through each day (cooking, cleaning, self-care)
- Turn into a flake (more often than I like, a bad of night sleep can cause me to cancel plans because I just don’t have the energy for it)
Slide 17 – Tackling Painsomnia
One of the best things we can do to ensure we stick to a regular sleep schedule is to go to bed at the same time each night and get enough sleep. Too much screen time in the evening, heavy meals eaten late at night, and even strenuous exercise shortly before bed can also make it more difficult to fall asleep.
What I do about this
- Sleep routine
- Shut all lights & devices off
- Regular Exercise
- Avoid alcohol, try cannabis
- Take a hot bath or shower
- Don’t dismiss your mental health
Slide 17 – Exercise with Fatigue tips
One of the best and most important antidotes for fatigue is regular exercise. Bodies were made to move, and skeletal muscle is the largest organ in the body. Plus, exercise is the best treatment for stress, worry, and low mood.
Perform a variety of types and intensities of physical activity, which includes:
- Moderate to vigorous aerobic physical activities such that there is an accumulation of at least 150 minutes per week
- Muscle-strengthening activities using major muscle groups at least twice a week
- Several hours of light physical activity, including standing
Get seven to nine hours of good-quality sleep on a regular basis, with consistent bed and wake-up times
Limit sedentary time to eight hours or less, which includes:
- No more than three hours of recreational screen time
- Breaking up long periods of sitting as often as possible
Tips for exercising with fatigue
- Start slow and build your way up
- Exercise in the morning
- Expect the first 2 weeks to suck
- Ask a professional who understands arthritis
- Two Routines: One for the bad days and one for the good days
- Strength train before cardio
- Sauna or hot tub after
- Count your daily activities as physical activity
- Do the exercises you like to do
- Avoid high impact exercises or going too long
- Give yourself proper rest
- Muscle pain is ok, joint pain is not ok
- Get both moderate-to-vigorous activity each day and be active throughout the day.
- Nordic Walking Poles
- Medication before exercise, with food and water
- Find motivation and inspiration
- Acupuncture and Acupressure Massage
Slide 18 – Exercises I like
Exercises I love
- Fast walking on treadmill
- Going for long walks around the city
- Riding a bike
- Strength Training with weights and resistance bands
- Gardening/Mowing the lawn
- Playing with my son
Read more about my journey exercising with RA
Slide 19- What I got out of tracking my physical activity and symptoms
- Deeper understanding of my overrall health
- How my sleep impacts my fatigue
- How my fatigue impacts my pain
- How my mood impacts my pain and fatigue
- How certain food may make me sluggish or cause pain
- How my period impacts my mood, fatigue, sleep and pain
- How to watch for patterns
- Efficacy of my medications, supplements or treatments
Slide 20 Examining Self Care
Do a thorough self-care inventory to make sure you’re doing everything you can do to manage fatigue on your own.
- Are you taking all of your medications as prescribed?
- Assess your pain levels: Have you been in more pain recently?
- Are there things you can do to reduce your pain and fatigue?
- Consider your work schedule: Have you been working longer hours?
- Are you sitting for too long?
- Are you not getting enough rest? Too much rest?
- Is it almost the date of you medications?
- Are you being kind to yourself?
Slide 21 – Talk To Your Doctors
If none of these things are helping after a week, and especially if you think your arthritis or another condition is more active and may be contributing to your fatigue, it’s time to speak with your doctor.
- General Practitioner
- Nurse Practitioner
- Naturopathic Physician
- Occupational Therapist
- Other Patients
Slide 22 – QUOTE/ Conclusion
Can’t clean up the whole room? Clean a corner. Can’t do all the dishes? Do a dish. Can’t get in the shower? Wash your face. Always look for the thing you CAN do, with the energy and focus you DO have. Little wins pave the way for bigger wins. 1% beats 0% – Dr. Glenn Doyle
Ask yourself if the floors really need to be washed, by you, today? It’s OK to be highly protective of your time, and your energy,
My love for my child moves me a little faster than my usual arthritic speed on many days. Still, I realize it’s not about how much I did that day, but that I put effort into it. I recognize how difficult that is through chronic illness. I know I’m fighting as hard as I can, and it’s OK if my body needs rest. I’ve learned to listen to its silent cries.
Slide 23 – Thank you and Questions