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The first time I sat on a store scooter, my insides trembled, my face was probably reddened, and I had butterflies swimming about in my stomach. I wasn’t even 40 and there I found myself at Lowes, sitting on a scooter, about to attempt my first experience with the beast. Was anyone watching? Were they judging me? Accusing me with their eyes, thinking, “I didn’t look sick.” As of this point in my life currently, only one person has ever cast judgement on me, making sure to repeat herself for my ears to hear her critical judgement and self righteous voice assuming I’m simply enjoying the use and being lazy at the expense of those, ‘truly disabled, such as her husband who was missing a limb.’
It was horrifying and liberating all at once, the first time I used the scooter. I was able to actually explore the store once again, taking my time to do my shopping and browsing and able to actually attend it vs sending my husband to do my bidding. I’m the handy one. The one who loves to do projects, remodels, constructing  and using my tools. My husband is my muscle, even more so now since mine have betrayed me.

It’s the hardest thing ever to give up the control over one’s own life. To ask for help when I’ve always been the one to give it, never having to be asked but jumping in with both feet and taking care of those around me. Why me? Why did it have to happen to me? How can we manage when I was always the one for them to rely on and now, I can’t even rely on my own self for my own care taking. Hardly showering unless necessary, the exhaustion from the task too much to deal with when I need my energy for other tasks.
I never truly understood how mental exertion could add an added cost and strike a solid blow to someone no different than the cost of physical exertion. How can that be? How can simply planning and organizing and handling research and even simple tasks with the mind cost so much to the body?? How is that possible!?! But that’s what it is. When flared up so bad and dealing with the post exertion I find even a simple phone call to be bothersome and all consuming. I find myself pushing off even the simplest of tasks, stacking the list even higher as things get avoided. It only adds to the anxiety of the ever growing list and the incompetence I’m feeling.

How does one ask for help? How does one relay to their doctors how truly bad it is? How do I paint the picture of my everyday life without them assuming I’m looking for a handout, lazy, a payout, taking advantage of the system when once again, I look so damn normal. Sometimes I envy those who’s limbs are twisted and deformed, a visible illness unquestioned by their audience and one less issue to contend with to the sufferer. I should be happy that I look so well. That I don’t have the pity of those who look down upon the ill trodden but instead, I find it counterproductive and frustrating to have to explain what I feel inside when my body betrays me.

How does one articulate the overwhelming fatigue and pain one suffers when pain can’t be measured by the untrained eye? When so many do take advantage of a system in place to help those who suffer making it even more difficult to be taken seriously and fighting to be heard and believed and understood. I take comfort in knowing there are others like me. We suffer alike, together, in solidarity of the illness we suffer. It’s crushing.

to be continued…

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