13 ways to survive working with Chronic Illness

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I have been a full time teacher with Chronic Migraine.

I have been a full time stay at home mom with Chronic Migraine. 

I am a full time mom and part time teacher with Chronic Migraine. 

They all are difficult jobs and adding a chronic illness makes life even more complicated and difficult.  

So the questions remains, how do you work while having Chronic Migraine?  How was I able to return to work

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  • Work part time

I only work a few days a week and seem to have letdown migraines on my days off.  I save time for self-care during those day.

Tip: Know time off policies and if a substitute is available

 

  • Find coworkers who support you

At my job that I missed a lot of time off, my boss was arrogant and my coworkers were judgmental.  With my new job, my coworkers are like a supportive family and my boss is loving and understanding.  This benefits the group because I’m not motivated to work out of judgment or consequences but out of commitment and love for the job and workers I call friends. I really have fun at work and love to be there.

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  • Ask for and learn how to accommodate your needs 

I requested that my classroom be on the side of the building that does not get direct sun or heat.  I also have control over the lighting.  Heat and lights (fluorescent) are especially big triggers.  I use Axon Optics glasses on days I need extra light protection for my eyes.  I use other lotions, oils and natural products to treat myself topically.

  • Understand clients

I found that when I disclosed that I had Chronic Migraine to my boss at one job I was judged and at my current job she understood me better.  The same goes for clients.  As a teacher who was missing work, I sent home a letter explaining my chronic disease.  I found that the parents were very open and appreciated my honesty but I was unsure what the feedback would be.  Understanding the children and families I work for has allowed me to personally connect more.  I feel like my families want the best for me as I want the best for them and mutual respect once again motivates me.

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  • Low stress, high reward

With a part time position, my stress has decreased tremendously.  I am able to focus on myself, my family and other aspects of my life other than my job.  Stress was my main factor in turning episodic to chronic.  I now have a handle on how to deal with stress and my priorities are different.  As a teacher without children and now with children, my views on teaching are very different. I have always had a passion for teaching and love children.  The reward is huge!!!  Being someone who is making a difference every day and seeing growth in my students is so rewarding. 

It gives me pure joy and joy is great medication! Find joy in your job.

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  • Set realistic goals and expectations

Putting pressure on myself to be something I’m not only raises stress.  I have realistic ideas of what I can do, what I want to do and how I’m going to attain those goals.  Setting myself up for failure will only derail my treatment.  I set goals I know I can reach and am proud when I meet them.  A positive attitude and learning from the past allows me to move forward.

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  • Commute

Driving is extremely difficult with even a low grade migraine.  At my old job I had a longer commute and found that many days I was throwing up on the side of the road before and after work.  At times I liked it to decompress but most of the time was pained from the drive.  I now have a short drive that I can drive to with my eyes closed (don’t worry, I don’t but I could).

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  • Water, coffee and snacks

Caffeine can be a benefit or trigger.  Coffee  is beneficial to my migraines. During my morning of teaching, I drink coffee before the students arrive and drink a huge water bottle throughout my day.   As a class, we have scheduled potty breaks and snack time so we all get time to refuel. 

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  • Sleep schedule

I wake up the same time every day whether I’m working or not.  I stay on a consistent sleep schedule in order to be refreshed and ready for my day.

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  • Take breaks

When I feel a migraine raising, I get a bit panicked.  During my students specials I have the ability to take a break, focus, drink more coffee, or water.  Just allowing 10 minutes of quiet and focused breathing make a world of difference to my rising pain.

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  • Use flexible work time if possible

I am able to get a lot of my work done outside of the classroom.  I am also a busy mom and find that planning and prepping can be done once they go to bed.  Instead of staying late at school, I bring a lot of my work home and also plan ahead.  By being over prepared I am able to relieve stress.  If I’m sick in bed and worrying about work, I get sicker.  When I have everything done, being sick for days doesn’t stress me out about work because I know I’m prepared.  Planning and being prepared makes my life, in general, much easier.

  • Moving my body and distraction

There are days I go to school feeling sick and am completely consumed by my students.  The minute my students leave and all is quiet, the pain comes flooding back.  I’m so distracted and filled with endorphins while I’m at school that at the end of the day I’m punished more.  There have been days that I work till lunch and am in bed until the next day.  The distraction of a job that I love helps me get through many mornings.

Having a job that I am active in helps.  Stretching, dancing and moving keeps my body active.  I would not be unable to sit at a desk staring at a screen all day.  My body needs to move and my brain needs a break from technology.

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  • Money vs time

As a part time employee in the teaching field, you can imagine I’m not a millionaire.  Working salary and full time was not something I could keep up with.  Working part time, I do not make a lot of money but am able to do what I love with people I care for.  Sometimes money isn’t everything (although it pays for my medical expenses, so I really need it).

 

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 With all of this said, I found a dream job.  Not everyone gets to work part time (either financially or in their field of interest).  Disability is difficult to get as a migraine sufferer and most jobs it is difficult to find balance.  Time off isn’t always possible without consequences and substitutes are not common. Falling behind on work is inevitable.  Finding coworkers that are friends is not a choice but a lucky draw.  The same goes for bosses.

All circumstances and lives are different.  I encourage you to find something you love.  Find a part time job, a job online, a job that can be flexible and a job that makes you happy.  Migraine is the definition of pain and unhappiness…..find something you love and makes you better.  Easier written than done, I know!!!

I, honestly, was not sure if I’d ever be able to go back to teaching with how severe my disease is.   I took a chance and it paid off.  I was very aware that it may not be possible, but I never let that deter me.  I tried it and it worked.  Not every job works but I’m so glad I took that leap.

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Chronic pain is too much for too long and too often

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The last 3 weeks I have been in a migraine cycle from hell. Hell is the only place to describe it. I suffer from chronic migraine and even this rattled me. Here’s the thing I’d like to tell you about chronic pain, it’s too much for too long and too often!

You never get used to pain. I have found ways to mentally deal with it better, to alternatively treat it more naturally and ways to adapt my life but the reality is it hurts….a lot. With my migraines, I get insane pain (on all sides) that resonate throughout my entire body like a lightning bolt that never goes away. I throw up constantly (well, my body tries but at this point my stomach clenches so hard to keep any food in me that it’s basically violent painful heaves each time I sit up.) I have auras that consist of black dots, lines, zigzags, white light flashes and tunnel vision. I clench my teeth/jaw, fists, toes and thrash my body to the point I bruise. Light and sounds puts me at risk of passing out. The list of pains goes on and on and on while the minutes, hours, days and nights pass by.

When I was in labor, my nurse was able to tell me “Your contraction is at its worse, it’s getting better and going now.” The biggest battle besides the pain is not knowing how long the migraine will last. With this last cycle, I had points that I did not see the light at the end of the tunnel. The fear of living at a level 8/9 for the rest of my life was and is my reality. After an unending migraine, I don’t remember ever feeling better, can’t do anything to find relief and no one can tell me it’s going to be better soon because they don’t know that.

In comes the anxiety and depression that most chronic migraine sufferers experience. Anxiety about doing something to make it worse, about how long it will last, about missing out on life and about what will be missed in the future. Depression about being locked in a dark room alone for hours and feeling so alone. Alone. Alone to fight my pain because no one else can help. Feeling worthless and sad that this is my life and the way it will always be. Sadness from the things I can’t do and won’t ever do. The feeling of pain being the only feeling that I feel because nothing else can enter my mind is exhausting and unfair.

In fact, everything is exhausting and unfair. Even once the pain lowered, I was exhausted. Exhausted from fighting the pain and little sleep after days and days in bed. Looking at social media was too trivial. I can’t stand seeing moms complain about their kids when my children are my inspiration for everything and give me a reason to fight! Those moms are so ungrateful. In fact, the only reason I got out of bed was to go see my daughter for one hour at her school for an end of the year reception. I had spent the entire morning heaving from pain and used every bit of my energy to be there. One hour. One hour is where I spent all my energy in one day just to make my daughter smile and to make me feel human while other women are complaining that their kids are being kids….ugh, exhausting! (*Note:  I’m planning on writing a series on how my children are shielded from these episodes….**spoiler alert** lots of help and preparation!)

Once I emerge from a cycle, I always find it difficult to enter back into the real world. The world outside of my pain, outside of my room, outside of my head. I look in the mirror and don’t even recognize myself. My face is broken out and I look so weak and pale. My list of to dos is a mile long and the cognitive damage and physical weakness make it difficult to multitask like I normally do. I have trouble with just one task and focus on that alone. The anxiety stays with me because I never know when my migraine will return. I walk on egg shells and give myself credit for doing even the smallest things.

Chronic pain is too much for too long and too often. Before this 3 week cycle, I had made it 4 days at a level 5 pain level. This was good, but 4 days since my last major migraine? It’s not like I got food poisoning and thought, “Wow, glad that’s over, I’m never eating there again.” I’m going through this dramatic traumatizing event and thinking, when will it come back? Not if, when. Will it be tomorrow once I eat a normal meal again, will it be when I leave the house, will it be when my children scream and my stress raises, will it be when I try to get my list done and push myself too hard, will it be in a few days with my menstrual cycle, will it be when the weather changes AGAIN, or will it be for no reason? It will always come back….and soon.

I questioned if I should write this post. I like to be optimistic and show my readers hope. But the reality is, I suffer. I suffer a lot. Hopefully I help many with writing MyMigraineLife but there is no cure and I live with that every day. This is not a post to make you feel bad but to remind you that you are not alone. That maybe someone has it worse and to show gratitude for everything you can do today. To remind you that you never know what someone is battling with and to be gentle and kind. And to remind you that someday it will get better. My better does not mean I’m ok, it just means I’m out of my dark room today and I’m writing! That’s better! I still have a long way to go and am very aware that tomorrow it could be much worse. All I can hope is that it gets better…..

Things I love!

 The Headache Hat

My  Headache Hat review

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Http://theheadachehat.com

Use code MYML for a discount at checkout!!!!!!

Garden of Flavor

My Garden of Flavor review

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http://www.gardenofflavor.com/