Bad Weather Blues: Living with Rheumatoid Arthritis

I rise, my body cumbersome and heavy. My first task is securing water and medication: a pharmaceutical elixir to oil my creaking, tin joints.

The ice pellets crunch under my feet as I walk to my car, my body is stiff and sore from the change in temperature and pressure. Cold rain hits my face and hair, as I scrape the ice off my windshield, my hands throbbing in pain to grip the handle. The steering wheel is cold through my gloves and I do my best to clutch it firmly through the pain as I drive.

I stop for a coffee at my local cafe, the door is heavy to open.

I get to work and start my day.

It was a challenge to rise, a challenge to dress and a challenge to arrive, yet work needs to be done.

My finger joints are tender and stiff as I type at my computer, I realize I forgot my silver splints that look like rings that hold my swan neck deformity fingers in place for work.

My medication is running out, I make a call to refill my prescription and arrange for delivery. I know already I will not have enough energy to go myself.

How am I doing today? How am I being?

Each person that lives in pain, straddles the line of pushing themselves through and pushing themselves too far.

To live in pain is to live in awareness of our limitations and our mortality. Each day I wake, I am startling aware of what I will not be able to accomplish.

The glass being “half empty” is ever present in life with chronic pain; the tasks we can’t complete, the events missed, the tears shed, the pain screaming ever-present in the forefront of our consciousness. We are asked again and again to shift our perspective and see what is half empty as half full. If I have half a tank of gas, am I angry it is not full? No, but I am not a car. The issue with the “glass half full” perspective (as a remedy) is that I cannot take refuge or comfort in gas leaking from my tank.

You can’t bury your head in the sand; life moves on, the world keeps turning and at the same time, you can’t ignore the signs that your body is in an emergency. Alarm bells sometimes go off in my brain, “This is dangerous! This could be unsafe!” When the alarm bells go off, I know my body is trying to speak to my brain: “Listen to me, this is too much. Life is too much right now.” How do we head the warning?

So far what works for me, is I focus on conserving my energy and stopping the gas from leaking out of my tank. Are there medications I can take? Can I take a mindfulness or meditation break to calm my nervous system? Have I eaten? Am I thirsty? How can I be kinder to myself?

How can I be present when my present is painful?

Sometimes looking ahead at the whole day is overwhelming. I break down the day into more manageable pieces. I can break down the day into hours and deal with each hour as it comes. I then break down the hour into tenths. As a lawyer, I docket my work by the 10th of an hour. I use this same strategy in personal care.

Hope is the most important drug in my life. When it comes down to it, the medications I take for my rheumatoid arthritis only go so far to provide relief. Hope is a river you can bathe in, hope is a road you can get lost on. When applied appropriately, hope is the best companion to ride out a storm.

This morning, I hope that the afternoon will be better.

This day, I hope that others in pain find swift relief.

Above all, I hope my words find someone who needed them.

Dealing with Burnout

I painted every day this year until I hit burnout. Just a few weeks ago, I was beading and painting every day, I never would have guessed that in such a short period of time my lifestyle would change so dramatically. In the last few weeks, my mobility and energy have been severely impacted by the change in seasons.

This time of year is tough on many people, including those with SAD, migraines and autoimmune conditions. I have rheumatoid arthritis in over 40 joints. I’ve recently been struggling with hard days, days where I can’t move for the first 90 minutes. As my body is stiff with pain, panic sets in and I sometimes cry from the shock of it. I’ve been using energy conservation as a tool to plan each day as it comes. Sometimes though the reality is that I do not have enough energy to “conserve” for what’s needed. I’ve been asking for help on all sorts of tasks and my weekends are spent sleeping and recovering from the past work week so I can make it through the next work week.

It’s discouraging when you hit a wall, not from lack of inspiration or trying but from a lack of physical energy stores. In some of my previous posts, I wrote about how to handle a flare and using art to stay positive. Today, I’d like to share how to handle the overwhelm of a bad day. This is not medical advice but a letter from a friend. I know what it’s like when you wake up in so much pain you can’t move. This is my letter to you to read for a hard day.

Dear Friend,

Close your eyes for me and take a deep belly breath through your nostrils. Feel your stomach rise and fall with your breath.

This was not the day you were expecting. You didn’t ask for it. You don’t “deserve” it.

You’re only job today is taking care of you. That is no small task. Know that you are up for it, even though it may not feel like it in this moment. Use as many coping strategies as necessary, there is no “limit” to how many strategies may help or relieve stress.

What is one small, kind act you can do for yourself in this moment? What is one small task you can ask for help on? What is one small task you can forget about completely and forgive yourself for letting go of?

Accepting that reality is not as we planned or expected, is the first step to finding peace.

Imagine yourself as a crab caught in high waves on a beach. Each push and pull of the water pushes at your shell, your arms and legs creaking with each movement. Just like a little crustacean caught in the surf, we are caught in an energetic surf. What if instead of fighting the current, we let it carry us?

We’re going to get through this. We’ve gotten through every hard day up until now. A wise friend once told me, “Don’t measure your whole life on a bad day.”

We wouldn’t be told to “remember” if we weren’t prone to forget. Remember that you are capable. Remember that you are worthy and deserve love, safety and peace.

My wish is that this letter provides you a moment of solace. When times are dark, I look for moments of solace, as if peace is a throughway and not a destination. 5 minutes of peace provides me the refuge I need to keep going for 20 more minutes, then another 2 minutes of solace may carry me through until the evening. I look for solace around every corner; I’m pleasantly surprised when it finds me first.

Know that you are not alone is this heaviness. Know that the weight is not yours alone to bear.

In Solidarity, your friend,

C.F.

Use Art to Stay Positive when You've Overdone It

Sometimes, I completely overdo it and I know the arthritis pain I’m experiencing is a result of my over-exerting myself physically.

In my last post, I provided some practical tips on how the handle the negative emotional aspects of a high pain or illness day. Today, I’d like to expand on this topic and discuss specifically how to use art when you are exhausted and in pain.

1. Use music

   This might be a strategy you already employ on “bad days” but it’s often so simple, I forget how useful it can be. I have ready-made playlists with inspiring music to listen to on high pain days. Having music in the background helps distract me from pain, and I find depending on the song, the lyrics can be inspiring and help me keep going.

2. Use audio notes to record ideas

   When I’m in too much pain to make art, I record audio notes to myself of ideas and projects I’d like to try when I have more energy. Like a sketchbook, audio notes can help you keep track of inspiration as it comes to you.

3. Use audio books, podcasts and free library resources to keep you company

   Holding heavy books can be too much for my arthritic hands and arms on a high pain day. As a result, I use a tablet instead of holding physical copies of books. I also use podcasts and audiobooks to keep myself occupied and/or distracted from pain. Many public libraries offer free online resources to borrow audiobooks, digital copies of books and more.

Let me know if you try any of these strategies. If you find this post helpful, let me know in the comments below.

What to do on a Bad Day: Flares & Chronic Illness

A flare is a period of increased disease activity or worsening symptoms – a time when the medications you normally rely on to control your disease don't seem to work.

A flare can be disorienting, you wake up in a state where your mental and physical state are dramatically altered. I used to think it was impossible to have a good day when in a flare. I’ve learned over the years though, that by applying certain strategies, I can eliminate some of the suffering that I mentally impose on myself.

When dealing with a flare, I often think to treat my physical ailments first - take my medication, drink water, lie down, put on my splints. I’ve realized though that something equally important is treating my spirit and heart. You’re in pain and you could feel disheartened or discouraged. It’s normal to even turn your frustration inwards, and feel strong negative emotions like shame or anger towards yourself.

Step 1: Notice & Name your Feelings

The first step is to acknowledge your feelings. You can’t process what you suppress. Acknowledge your feelings and thank them for what they’ve shown you.

On days when I’m having trouble accepting the feelings that present themselves, I turn to this poem by Rumi: The Guest House.

Step 2: Self Compassion

It may sound cheesy, but the second step is to shower yourself with self-compassion. Self-compassion is the only way to heal your heart on a bad day.

Gabor Mate, in his book “When the Body Says No” explains that people mirror their illness and often attack themselves psychically, just as the body attacks itself in auto-immune responses.

Societal pressures can also lead you to blame yourself. Wellness culture promotes the idea that if you just find the right vitamin or diet, you can “cure” yourself. This “pull-yourself-up-by-your-boot-straps” mentality individualizes the “problem” of illness and sickness. Instead of accessibility and accommodation being seen as a community’s responsibility, the medical system puts the onus on individuals.

Provide yourself with kindness, patience and care at each problem you face. Expect problems, there will always be problems on a flare day.

Here are some practical ways I use self-compassion on a Bad Day:

• No Name Calling - When I’m in a bad mood, I find myself in a spin of negative thoughts. My rule is if I wouldn’t say it to a friend, I shouldn’t say it to myself. Beating yourself up for ended up in a flare is not productive or helpful.

• Give yourself what you need, not what you think you “should” do - When you find yourself saying you “should” be doing something, that’s a sign you should not do it. It’s your ego imposing expectations that might not be reasonable. Access your energy, and conserve it accordingly. I use this model for energy conversation.

• Forgive yourself for changing plans. Do you need to sleep? Call in sick for work? Forgive yourself for doing whatever it is you need to do to take care of yourself when in a flare.

Step 3: Move on.

This is the hardest step, I have trouble going to sleep when I haven’t completed my task list for the day. Something that has helped me is an affirmation from the book Simple Abundance: A Daybook Of Comfort & Joy by Sarah Ban Breathnach. In the morning you say out loud, to no one in particular, “May this morning be good for me and mine.” Then in the afternoon, you say, “May this afternoon be good for me and mine.” And finally, you guessed it, in the evening, you say “May this evening be good for me and mine.” This simple affirmation gives you the opportunity to hope that what’s next might be good.

This affirmation also breaks up my day. I’m reminded that each morning, afternoon and evening is a new opportunity and that while this day will never come again, a new day comes and with it a new experience.

Lessons we Take with Us

Every bad day you get through makes you a little stronger. Every bad day you get through is one more reminder that you can get through the next bad day.

To read more lessons like this one before anyone else, sign up for our newsletter below:

Energy Conservation while Making Art with a Chronic Illness

There’s two aspects to creating art - the mental and physical aspect. One day you may have the physical energy stores you need to create but not the mental energy to focus on the task. Another day, you may have the mental energy you need but could be in too much pain to hold your paint brush or tablet.

Energy conservation is a key strategy I use as a person with a chronic illness. Energy conservation is paying attention to the energy I have and planning my time accordingly. Sometimes this means I must improvise and reschedule pre-booked plans to better suit the level of pain and fatigue I am experiencing on a given day. Mostly, I use energy conservation to manage my personal time.

Energy Conservation Framework

Whether I’m at work or at home, I follow this basic practice:

1. Assess how I’m feeling: The first thing I do when I wake up each morning (whether I want to or not!) is to take note of how much pain, fatigue, and stiffness I am experiencing. These are the symptoms associated with my condition, so modify this step to fit your own needs. It will be obvious if something will get in your way. If the symptom is less obvious, you can take note of how much it hurts in that moment and monitor the pain level as the day progresses.

2. Review my list for the day: I list out any appointments and tasks that need to be completed. I approximate how much time each task will take based on my current energy levels. An email when I’m a 10/10 will take 5 minutes, while that same email on a 5/10 day might take 5 times as long.

3. Prioritize what cannot be moved: Once I have compiled a list of everything that needs to be done, I prioritize what I need to do. If I’m not able to complete everything that must be completed (within the given energy constraints of that day), I implement my backup plan:

4. Implement your Backup Plan: You may need to reschedule. A big part of living with a chronic illness is listening to your body. Once you’ve heard what your body has to say, it can be difficult to accept the messaging. If you’re body is saying slow down or take a step back, it might be appropriate to reschedule or move tasks and appointments to a different time. I recommend having a “Backup Plan” for your home and work life. A backup plan could look like: taking medication, putting on splints, having “freezer meals” for when you cannot prep food, etc.

When making art, I use the same model:

1. How am I feeling?

2. What project do I want to work on?

3. Do I have the physical +mental energy needed for the task? If so, great! If not, I implement my backup plan.

4. My art backup plan is straightforward, I have a pre-organized list of activities I can do based on my current. I follow the below chart based on how I’m feeling:

This process has helped me to better understand myself and what my needs are. Above all, it allows me to get my needs met. Being creative is both relaxing and reflective, providing myself the space and opportunity to be creative while still meeting my physical’s bodies needs means I can be creative more often.