Imagine ...

Imagine waking up after the third alarm barely aware that you slept through the other alarms. The mental fog makes it impossible to think so you move through an established morning routine. One that requires your clothes to be already laid out, your work items packed and by the door, and a checklist at the door to insure you don't forget anything. By this time, your meds and initial caffeine-fix have hopefully kicked-in so you can drive to work without confusion. Imagine working through your day aware that if you give a presentation, a tour or get busy with a group, you may deplete your energy and will become shaky and confused. During the day, you may need a longer break but it's impossible to get away or you manage to get down to the sick bay area, but it is not available so you try to manage the fatigue that slows your movements and your mind. 

Or imagine not managing to break free of a customer interaction and being 30 minutes late taking your next dose of medication. Imagine the frustration and despair because this means you will lay paralyzed, unable to move, but incapable of shutting off your mind in the middle of the night, yet you have to put on a smile and return to the desk and close off those emotions. Imagine knowing that all your energy will be spent at work and that by the time you get home you'll be exhausted and most likely unable to enjoy the activities that you like because you only have enough energy to prep for the next day.

Imagine that it does not matter how much sleep you get because you will spend everyday feeling completely exhausted, at times fearing a collapse. Imagine being in a mental fog, confused, or struggling to maintain your thoughts. Imagine your arms or legs tingling before paralysis sets in. Imagine doubting your abilities. Imagine questioning going forward with career plans because your mental capabilities slip at times.

Imagine regularly canceling plans with friends or giving up late nights. Imagine never sharing a glass of wine with a friend because you can't touch alcohol. Imagine being unable to accomplish your bucket list items. Imagine being fully aware of your energy levels, reserves and how you can push yourself yet acknowledging you can't plan for every scenario. Imagine at best, once a week you'll have an episode of utter mental and physical collapse.

Imagine taking an addictive medication in order to get through your day. Imagine suffering withdrawal if you take the medication a few hours late or miss a dose. Imagine knowing that with every dose you are exacerbating a heart condition yet the alternative is unbearable. Imagine fearing catching the common cold because you can't use over-the-counter medications and you'll have to miss work because mixing the meds the doc prescribes causes a scary reaction.

Imagine shame and embarrassment at your failures and your weaknesses. Imagine the fear of letting others down or the loss of control when total exhaustion kicks in. Imagine the insensitive jokes at your expense. Imagine the confusion and lack of understanding from people who will never comprehend the extent of your condition.

Imagine knowing others who have been diagnosed and have lost their jobs, spouses, and friends because people believe you're lazy, sickly, stupid, or mentally slow. Imagine knowing others who struggle with regulating medications, lifestyle changes, and the emotional impact of this disorder. Imagine knowing that one slip in your routine or getting older could cause serious ramifications.

This explains why I am not being overly sensitive about my health, but am trying to deal with a life-altering condition that effects every relationship, every moment, and every aspect of my everyday. My life will never be the same and I have lost some of my dreams and my belief in myself yet I persevere. I have participated in a support group, relied on friends, and adjusted my lifestyle to lessen the effects of an incurable neurological disorder. I am not having a pity party but rather feel the need to articulate my daily circumstances and to stress that I do not feel comfortable sharing my condition with everyone. I have colleagues I work with daily, professional contacts, family, and friends who are completely unaware of my situation. I manage a brave face and only a few get to see the cracks.