Are You Living With Chronic Pain/Illness Or Letting Life Pass You By?

SnowI was never allowed to slide on chores when I was living with my parents. It didn’t matter if I had a migraine, my elbow was fractured and my arm and hand was in a cast, sprained my ankle and kept re-spraining it, or my torqued pelvis was causing excruciating back pain. One year I was sick the last week of school before Christmas break. Instead of being in bed resting like I should’ve been, I was wrapping my siblings’ Christmas presents. Chores still had to get done or there were consequences. Laying around being sick whether short-term or long-term or being in chronic pain was not an option and it is one that carried into adulthood.

There were times I was sick in college (with the flu) when I would be in bed chastising myself for not being up and doing laundry. Or studying. Or writing a paper. Or in class taking notes that I would need for the mid-term/final. It took a long time to train myself to allow myself to rest when it came to short-term illnesses.

Living with chronic and illness and pain is different. You might be able to get away with lots of rest in the beginning. But life doesn’t stop just because you have an illness/pain that won’t go away.

I still had to get homework done despite the migraines. I still had to cook despite the back pain. I still had to work when the migraines became daily. I still had to do laundry when I was fatigued every day and could barely lift a t-shirt to fold it. I was still dragging myself to work and cooking dinner every night as difficult as it was to move right before and after my Hypothyroid diagnosis.

When you live alone you don’t have a choice but learn how to navigate your world while in pain/ill. No one is going to cook for you or clean your house, unless you pay them. I barely had enough to pay the rent, feed myself, and pay tuition as a college student. Chaz certainly wasn’t going to work his full-time job and come home to do everything the multiple times I’ve battled with chronic illness and pain. He did a fair amount to help out, especially when fatigue took over and going grocery shopping was too much for me. Nothing like feeling like you’re going to collapse in the middle of the store or halfway up the stairs to your apartment.

Everyone figures out how to function with their limits in their own way. I shared an office for years. When I left the job I was sharing it with five other people. Throughout the course of that position I had three different offices with my various co-workers. First it was three of us with modular furniture in a tiny room. Then it was the basement of a house. I was able to eventually move my desk into an area of the basement with a separate light switch and I was able to keep the light off if a migraine was plaguing me.  Last was the office with six of us total, no separate areas and no modular walls separating us. I had to learn quickly how to tune five chattering people out when my head was throbbing. And when I had multiple things due and couldn’t be distracted.

I was counting spoons before I knew what spoons were. I would wake and assess how I felt and how my body felt. Does everything feel heavy and fuzzy? Yes. Today will be shower and cook dinner only. No. Let’s start with shower and see how we feel after that. My spoon counting went into overdrive when plantar fasciitis decided to join my party while I was working for a big box store. I had to menu plan based on my work schedule. Which meant I had to assess how long was I going to be on my feet before coming home to take care of my feet before standing on them again to make dinner. Yes, taking care of my feet. Inflammation doesn’t go down easily and it doesn’t help when  your feet feel like you’ve been doing nothing but walking on hot coals. Then inflammation went into overdrive before my adrenal fatigue diagnosis. I knew something was wrong when old injuries came back to haunt me. I was waking up in the middle of the night in pain and unable to go back to sleep. This was when my self-preservation kicked in and the need to get myself better took precedence. I cut back on my hours at work and scaled down my availability.

I never really know if I’m fatigued some days because of adrenal fatigue, Sjogren’s, reaction to water (yes, still battling the water demon), or reaction to something else I ate or in my environment. I know when the fatigue hits I need to dial it down and only do the minimum for the day.  I know on the good days I need to stop myself from doing too much so I don’t end up having an adrenal crash. I hold back even if I feel I have the energy to do more because I can easily overdo it. It doesn’t sound so bad, but when it takes at least a week to recover from a crash, you realize that is a week of productivity lost that could’ve been prevented.

Lying in your bed day after day does nothing unless you are on your deathbed or pregnant on doctor ordered bed rest. Long-term diagnosis whether you know the root cause of your illness or not is more than a sign to get it together. It’s a kick in the ass to make sure you’re already in the process of getting it together and figuring out how you will navigate your new world with your limits. I felt like I was giving up on life for those months when I was crawling into bed as soon as I got home from work then dragging myself out of it to fix dinner. You can’t truly live life from a bed when self-pity is your bedfellow.

People depend you to be able to function at some level at work and at home. If you are married or living with someone, they can’t work, take care of the house, and take care of you without some detriment to their own health. If you have kids, they depend on Mommy or Daddy being present to meet their needs. Shutting them out is not an option. Most of us continue to work and those we work with/for depend on us to continue to produce the work we are paid to do. Many employers will provide accommodations for employees when possible. Bottom line is that you are expected to do your job and in many cases, someone else’s job depends on your output. Adaptation is your best friend in the world of chronic pain/illness and your support system is there to help you along the way. You have to help yourself first and decide to start living again.

“Death is not the greatest loss in life. The greatest loss is what dies inside of us while we live.” ~Norman Cousins

Fighting to Persevere

I’ve mentioned how poorly I was feeling before.  Here and on social media.

I downplayed it.  If you know me, you know I tend to downplay things.

I was at the point where I was counting spoons to see what I could and couldn’t do through my day.

I called off work one day a few weeks ago because I woke up in the middle of the night in pain and wasn’t able to get back to sleep.  Nor was I able to stay standing while fixing my breakfast.  I didn’t have the spoons for the day.  I took the max dose of ibuprofen (800mg) after calling in and went back to bed.  I spent the better part of that day and the next doing nothing but laying on the sofa with my feet elevated.

Just the day before one of my managers was telling me I needed “to get healthy” because there was a big load of work coming up.  The irony is I’m probably the most health minded person there even if I’m not healthy right now.  I had these reactions running through my head when he told me I needed to get healthy.

Are you fucking kidding me?  Do you realize who you’re talking to?

I’m never going to be healthy here. 

You selfish bastard. 

I just want off my feet! 

Stop talking already! 

Let’s go back to “I’m never going to be healthy here.”  When I realized how true that statement was, I knew something had to change.  Either I get to the root of this problem and figure it all out or I quit my job.

I kept all this in mind for my doctor’s appointment.

Pain, inflammation, heart palpitations, problems sleeping, mood swings, fatigue, being so tired I was falling asleep on the sofa if I wasn’t vertical, feeling like I re-sprained my wrist.  I thought that my thyroid was going haywire.  I was at the point that I felt like I was hitting the same rock bottom that I hit before.   I was crying because I felt so horrible, yet I kept pushing myself to do more than I should have and still not give in.

My life was like this again…

The Saturday before my appointment, I was awake mega early again due to pain.  This time along my pelvic bone on the left side.  This was new.  I couldn’t go back to sleep and I eventually got up and started my morning routine.  When I got to work the same manager that told me I needed to get healthy was asking me how I was doing.  I told him, “Not well.”  Then I explained being woken up by pain when he asked.  “Are you going to the doctor today?” he asked.

At this point it was creeping towards noon.  My doctor is not in on Saturdays.  I probably could have driven myself to an ER instead of work that morning, but I was trying to hold out.  I was incredibly irritable from lack of sleep, pain, and generally just tired of being sick all the time.  It took all I had to not just reach out and give him a wake up smack.  He is a really nice guy when he’s not so focused on the bottom line, but I knew he was thinking in the back of his mind, Oh no, we can’t get even more shorthanded so close to the holidays.

I started thinking again, I’m never going to be healthy here.

You might be wondering, then why not quit?  That’s the easy thing to do.  I’m a person who feels bound by loyalty.  I am not bound to the corporation.  I am loyal to my co-workers and my team leader.  If it weren’t for the ones that make it worth being there and laughing with, I would have left long ago in search of something else.

I went to my doctor last week Tuesday, starting with my chiropractor and moving on to my integrative doctor.  I didn’t rush through my progress note to my doctors to let them know what is going on.  In previous months, by the time I saw them, I wasn’t feeling nearly as bad as I had this last month or even as bad as I did when I went in after being off work for nearly 48 hours.

For the first time my neck adjusted better than it had in months.  I have a stiffness that settled in months ago and would not adjust for anything.  Normally, my chiropractor jokes about me starting without him as things start popping back into place while he’s getting me into position for the adjustment.

My doctor sat with me and reviewed everything I wrote down.  We went over the Stress Chart they have in every room and discussed where I was on the chart and the cause of my stress.  Work.

My wake-up call

I never thought I’d hear the words, adrenal fatigue, coming from a doctor of mine and directed at me.  But, it explained everything.  It explained why my plantar fasciitis was getting worse no matter what I did to help it along.  Icing my feet after work, stretching them out, rolling them over golf balls.  My feet were just getting worse and worse.   I thought the inflammation was what was driving everything.

If you aren’t familiar with adrenal fatigue or even what your adrenal glands are or what they do, let me do a quick summary.  Your adrenal glands are responsible for releasing epinephrine, norepinephrine, and cortisol when you are under stress.  Epinephrine is also known as adrenaline.  In my case, my adrenal glands were working overtime to pump out cortisol while at work because of the stress I was under.  This resulted in my cortisol levels being all over the place rather than high in the morning and steadily dropping throughout the day, which explains the sleep problems.  When there is too much cortisol running through your body, your body turns on the inflammation response and poof…inflammation!

I never plan anything after my appointments with my chiropractor and integrative doctor.  I don’t want to completely undo everything they just did and I want my body to be able to accept the adjustment and acupuncture and get maximum benefit.   I spent the rest of Tuesday on the sofa.  As my body adjusted, I felt more and more exhausted.  I just wanted to sleep for months.  Or at least sleep until I was better.   I think getting an answer gave me finality and my body just wanted to shut down and say, it’s okay now, let me do the work to make it better.

I felt the same the next day, but slightly less irritable.  Baby steps.

I talked to the manager responsible for my scheduling, who happens to be the one who told me I need to get healthy.   I explained my diagnosis and that I needed my hours cut as I recover.   He agreed to meet my needs, which I fully expected.

By Friday, I was feeling light at work.  Less stressed.  I kept my focus on my tasks and if I happened to get called away to answer a call on the other side of the store, or get carts outside, or help at the registers, I went without all the negative thinking in my head that fed the stress.

Baby steps.

Here I am, Monday.  I’m still sleeping like crap.  I was awake well before I needed to be this morning.  I laid in bed for a while before finally getting to it.  Grocery shopping.  Housework. Yes.  I finally cleaned today.  I still have clutter going on, but I cleaned my bathroom, swept, mopped, vacuumed, and dusted.  Still baby steps, but it was something I couldn’t do a week ago today.

I’m moving forward and moving slowly.  I’m running on my time and to the beat of my recovering drum.  I’m reminding myself not to push myself too much or too far.

I persevere.