I would be shocked if not everyone has suffered from being burned out at one time or another.  I for one have been burned out many times in my life and for a variety of reasons.  I remember being burned out while raising our young family, I have been burned out at work, I’ve had caregiver burnout with my dad and now, I often struggle with “chronic illness burnout”.   A quick search for the definition of the word chronic is “persistent, for a long time or constantly recurring.” The Free Dictionary describes chronic illness as “any disorder that persists over a long period and affects physical, emotional, intellectual, vocational, social, or spiritual functioning.” And Merriam-Webster’s explains burnout as “the condition of someone who has become very physically and emotionally tired after doing a difficult job for a long time.” Those of us with a chronic illness struggle day in and day out, 365 days a year, every year – with no time off for vacations or good behaviour, some of us may have a short reprieve at times, but the illness is never gone. Sounds to me like a perfect recipe for Chronic Illness burnout.

I was diagnosed with Multiple Sclerosis in 2005 and it was clear to my Neurologist as early as 2008 that working and managing my MS was proving very difficult for me to manage so we began the difficult conversations around what was realistic for me to expect of myself. I say difficult because I was being difficult – I was hell bent on managing my disease my own way and I wasn’t willing to allow MS to take anything away from me.  18 years later, I realize how unrealistic I was being, my Neurologist really had her work cut out for her where I was concerned.  She was great though and knew that the only way I was going to figure it out was to try and try I did, until I eventually couldn’t manage anymore, which happened in approximately 2016. My family and my Neurologist had a “come to Jesus” talk with me.  Honestly, before “the talk”, I knew I had to take the advice she had given me for at least 8 years prior and I needed to stop working to allow me the space to carve out my new way of being and managing the disabling effects of my disease, which were more apparent every day.  She told me that managing my MS needed to be my new full-time job and I now know that she wasn’t kidding.

Because in fact, managing a Chronic illness is a job in itself.

Living with an incurable progressive disease like MS is a full time demanding job.  Just managing our basic needs is often overwhelming – simple housework is a herculean task (which is why I have a cleaner for the tough jobs), staying on top of medications, doctor appointments, cooking healthy, exercise, and the ever-evolving disease progression and uncertainty….. well, I think it is safe to say that it’s a lot to manage.  I can’t even count how many times I have made plans only to cancel them because I just wasn’t up to it. So, when everything is a chore, fighting a chronic illness (whatever illness that may be) can cause burnout just like any other demanding job. 

What can we do to cope with this burnout?

When my mind and body are burnt out from the constant fluctuation of energy and unpredictability from coping with my MS, I find myself withdrawing from others and from my normal routine and personality. I work hard to not succumb emotionally to my disability but if I’m being honest, there are times when I feel broken – deceived, punished, and abandoned by my own body and brain. I can feel angry, irritated, and frustrated with everything having to do with Multiple Sclerosis and other little things in my life – even if there aren’t any noticeable “triggers” at that moment. So, the weight of my disease and the effects it has on both me and the people I love washes over me at times, stealing my drive and leaving me feeling exhausted and pissed off and I’m embarrassed to admit it, but the people I love are the ones who ultimately suffer the brunt of my burnout. If you think of it, I haven’t had a day off from Multiple Sclerosis in over 6,500 days so it makes perfect sense that I can find myself feeling overwhelmed and tired at times, but it does not give me a free pass to be a jerk and take it out on everyone around me.

Chronic Illness burnout sometimes sneaks up on me, but when I do recognize it, it feels different than the everyday stress of life, so I try to remind myself of the following:

There is hope – Remember that perfection is a myth. Be kind to yourself. I was watching a show with some of our grandkids the other day (ok it was Tall Girl 2) and one of the main characters said something that made me stop the show and explain it to the kids because I thought it was so powerful.  She said: “There is no worse bully than the one you create in your head”. What better lesson for not only kids to learn but us as adults to learn?  When I heard it I thought it was appropriate for this post as well – why are we so hard on ourselves? There is too much of that out in the world already, so we should be reminded to be a little kinder to ourselves. Remembering that I am not alone in my journey, or the burnout that can accompany managing my disease is also a coping method I use regularly.  I have faith and thankfully I have my squad that holds my hand if I reach for them.  I believe that where there is help there is hope.

To practice a gracious heart – When it feels like my MS has become my entire life, it is time for me to take a look around and count my blessings.  All I need to do is just turn my head and look to my left or right to realize that my life ain’t so bad. I remind myself that my self-worth is not defined by my disease. And I remember how blessed I am.

Instead of trying to please everyone, I tell myself that it’s ok to say “no” and tune into my own needs. If I can, I take a break or step back from appointments (like the dentist lol) If I make some time and space to do non-medical things it gives me the emotional capacity to help reset my mind, body and soul and feel refreshed and able to pick up where I left off stronger and ready to take on my disease again. 

I celebrate even the small victories – Put a bra on today? I celebrate. Meditating even for 10 minutes?  I celebrate.  Folded the laundry?  I celebrate.  Put the laundry away immediately?  Let’s not get carried away.

Are you asking yourself “how do I know if I have chronic illness burnout”?

One of the primary symptoms is fatigue, there is tired and there is fatigue – let’s not confuse the two. This fatigue is more than feeling tired. It is an exhaustion that leaves you feeling incapable of doing anything except sitting, lying, or sleeping. You may feel like a walking zombie.  You may also find it difficult to stay focused, read, have a conversation, or make simple decisions. You may feel heavy or like you are being held captive by your body or mind. You may have a lack of interest, enthusiasm, concern, or motivation to do much of anything. You may feel apathetic about taking your medications, going to appointments, or doing things to help you take care of your body, because what’s the point?  Burnout can also lead to both physical and psychological symptoms like depression, more severe aches and pains in the body, digestive problems, low self-esteem, anxiety, loss of control, and frustration or anger.

Other ideas for dealing with Chronic Illness burnout include:

Finding a community & building a support system – Who you hang out with can influence your ability to manage chronic illness burnout (either positively or negatively).  For some, it’s helpful to surround themselves with people who have similar struggles and understand what they are going through. There are Facebook groups for every kind of support you may need, these communities have members that show compassion, empathy, validation, and support and sometimes the person who is at an arm’s length can give you the kind of support that your loved ones may not be able to give to you. And, don’t be afraid, embarrassed, or ashamed to seek out professional help – the right professional can make all the difference.

Say yes to help – People want to help and sometimes keeping up with shopping, cleaning, and cooking is unrealistic especially if you are alone. So, if friends or family members offer to help, don’t think too long, just go ahead, and take it!  It will make your life easier, and it will make them feel like they are helping – The way I see it, it’s a win win! If necessary, reach out to support groups, churches, service organizations and don’t hesitate to ask for help.  It may just create a possibility that you may be able to help someone else should they need it down the line!

Adopt positive lifestyle habits – Most of us knows that what you eat can negatively influence how your body feels (at least it does for me) so eating fresh veggies and fruit, low sugar & drinking lots of water can go a long way to lessen the possibility of chronic illness burnout.   

Know your limits and live within it – Try to avoid pushing yourself past where you know your boundaries should be. It is helpful to take inventory of what is draining your energy, it could be toxic relationships, social or employment obligations or added stressors like moving, changing jobs, even happy events can draw on your energy reserves so don’t be afraid to set some boundaries.

In an ideal world, we’d just cure the illness and while it is hard to believe that with the billions of dollars raised by disease fundraising (that deserves a post all on its own) it appears that is not a realistic expectation at this point. Which is why we should find the best ways to manage our illness and deal with the burnout it may cause!

What are some ways that you manage burnout, whatever the cause is?

I’d love to hear your tips and tricks!

A couple of years ago, I accidentally purchased jalapeno pepper start4er plants for my garden – I thought I was getting green peppers but what started as a mistake, I was surprised at how easy it was to use them up! This recipe is one of those ways and is perfect to pull out of the canning cupboard for the next last minute party you are invited to!

Jalapeño Jelly

This sweet and slightly spicy jelly is perfect to bring to the next neighbourhood holiday party

Print Recipe

Prep Time 10 minutes mins

Cook Time 21 minutes mins

Course Appetizer

Servings 5 8 oz canning jars

Equipment

• Hot water bath canner
• Five 8-ounce (250 mL) jars

Ingredients

  

• 12 Rinsed and stemmed jalapeño pepper 12 Medium with seeds taken out (or leave them in if you like living on the spicier side)
• 2 Cups Cider vinegar, divided
• 6 Cups Granulated sugar
• 2 Pouches Liquid pectin 85 mL each

Instructions

 

• Prepare boiling water canner. Heat jars in simmering water until ready to use. Do not boil. Wash lids in warm soapy water and set bands aside.
• Cut stems from fresh jalapeños, then cut peppers in half. Remove the seeds from the jalapeños for a less spicy jelly (Helpful hint: Run a teaspoon along the inside of each cut jalapeño to remove the seeds), or leave the seeds in if you like a spicy jelly.(It's a good idea to wear gloves for this step).
• Coarsely cut peppers, then place in a food processor or blender with 1 cup of cider vinegar. Puree until smooth. Do not strain.
• In a large, deep, heavy-bottomed pot, combine pureed jalapeño mixture into along with the remaining 1 cup vinegar and all of the sugar.
• Bring the mixture to a boil over high heat stirring constantly. (Don't leave the stovetop during this stage as this mixture WILL foam up and over the top unless you are careful). Just as it starts to come to a boil, lower heat and with a ladle, skim off any foam. Then, increase the temperature to a point where it will gently boil, but not rise up and over the top.
• Boil for 10 minutes then while whisking, add liquid pectin and boil hard for an additional minute.  Remove from heat, skimming any additional foam if necessary.
• Ladle hot jelly into hot jars leaving ¼ inch headspace. Wipe rim. Center lid on jar. Apply band until fit is fingertip tight.
• Process in a boiling water canner for 10 minutes. Transfer jars to a towel-lined surface and let rest at room temperature until set. After 24 hours, check seals (Lid should not flex up and down when pressed in centre). Refrigerate any unsealed jars for up to 3 weeks.