The Reality of Living With a Fluctuating Condition

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Many people start each day with a refreshing shower, and then go to work or achieve their tasks for the day, thinking of it as nothing more than a quick way to wake up.

But for some people, like those with Ehlers-Danlos syndrome, fibromyalgia, multiple sclerosis, rheumatoid arthritis or lupus SLE, it is the entire day’s chore, hard work and achievement that involves a great deal of time, pain, effort, endurance and spoons.

Here is a summary of two consecutive days from this week to show the reality of living with a fluctuating condition.

Wednesday:

When I woke up I immediately felt a piercing pain in my ribcage. I had managed to dislocate a couple of ribs in my sleep. I immediately took my morning cocktail of painkillers… It still somehow baffles me after all these years that I can wake up feeling worse than I felt when I went to bed.

After an hour of listening to music and playing mind-numbing games on my mobile in a failed attempt to distract me from the pain, I still hadn’t managed to sit up… I accepted that I wasn’t going to get much better — this was the reality of my painkillers at their full effect.

So I went to sit up and almost vomited with nausea and dizziness. I walked slowly and carefully to the bathroom with my towel, desperately hoping a warm shower might ease my sore joints or give me some energy.

I went to brush my teeth but it simply felt like I was taking a jackhammer to my bleeding gums. I took off my clothes, dislocating a different rib in the process and using both hands to hoist the taps on… While my body begged for rest.

The water pounds down like rocks. I didn’t feel safe enough to stand so I sat on the base of the cold bath while slowly easing myself under the scalding rain of rocks. I use the edge of the shower door to pry open the shampoo lid and then lethargically (and ineffectively) try to wash my hair, but it felt like I was holding up dumbbells the weight of trucks so I gave up and hoped that the shower would wash away the suds. I painfully opened up the facial wash and rubbed it on, but today it felt like tiny bits of glass. I immediately washed it off, the pressure of the water hurting my face… I reached for my loofa, still sitting in the base of the bath and realized it would hurt too much, so I resorted to rubbing in body wash with my painful, swollen hands as best as I could.

I could feel a headache coming on due to the overload of my senses, everything from feeling the water pounding on me, the smell of my body wash, the cold air tickling me or the sound of my music that today just felt like painful noise.

When it was finally time to get out, holding onto the sink and shower door I slowly stepped out and wrapped myself my towel before slinking down to the floor, holding my head in my hands. My joints screamed, my ribs demanded attention and I would have cried with soul-crushing exhaustion if I’ve had the energy.

I honestly don’t know how long I stayed on the floor. A few minutes I think. I accepted the fact that soon the cold would just make my muscles tense up more so I crawled, literally, to my bed where I collapsed still in my towel. Too exhausted to even get dressed or properly dry myself, I lay there resenting how quickly my life can change with fibromyalgia.

I spent the rest of the day too nauseous to eat aside from plain noodles and dry cereal, tossing and turning in bed. I attempted college coursework but after a few minutes I had to lie back down due to overwhelming pain.

Thursday

My alarm wakes me at 8 a.m. I hesitantly moved without too much pain, and actually felt refreshed from sleeping.  I take my pills and snuggle in bed for 30 minutes before getting up and starting my yoga routine (despite my cat thinking this time on the floor is for cuddles!). On good days I make the most of my extra spoons.

After this I trot downstairs and prepare a healthy breakfast before replying to a few emails and cramming in an hour of college revision. I then bundle my towel and hop in the shower (easily turning on the taps) with my favorite music playlist in the background. Not many people admit to this, but yeah, I totally did a little dance in the shower and lip-synced along to Green Day when my favorite tunes came on! A stark difference to yesterday’s painful and exhausting ordeal.

I got out the shower effortlessly feeling refreshed and energized, I got dressed, styled my hair, applied a little makeup and went into town to run some errands. When I got back I needed to rest for a couple of hours before I did a few hours of college coursework, but I made a meal for my loved ones and spent the evening gaming with my boyfriend. I was really exhausted that night and fell asleep quickly.

Now, there may be an “average” day (what I am typically like) but I still have days that are completely unexpected — both good and bad. For no reason, and without my control. This makes it incredibly difficult to plan anything, even if it is for later on that day. This means I often have to cancel plans at the last minute which I find embarrassing and isolating.

It is scary to live without any certainty of what tomorrow will bring, unable to predict or plan anything. Even the smallest daily tasks like showering can be exhausting for those with chronic health conditions. Every night we go to sleep unknowing of what the next day will be like — and every day is a cruel surprise of whether we are in control of our bodies that day or not.

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