Everyone who follows me knows I am a bright light for upbeat and positive living to deal with my Parkinson's Disease. This morning brought about a REALITY CHECK in this letter to my family (please excuse the expletives for which I have earned and am unapologetic after 8 1/2 years on my PD journey.) I write :
To My Family,
I've just made it through another sleepless night after not being able to stay asleep. Thank you Parkinsons-induced insomnia. I officially hate you.
My problem? A skyrocketing level of stress I cannot shake after the experience of going off my meds TWICE and witnessing my underlying condition. My body hidden by bottles of expensive medication is unable to breath comfortably at my diaphragm, my neck contorts my head to the right and upward pulling my chin diagonally away from my body painfully out of control, all while my muscle twist and turn in agony as I cry out loud then sob with each misfiring nerve in all my limbs; all four stuck straight out from my body like a corpse. I cannot sleep. I cannot walk. I have no reflexes in my legs. Everything hurts. I have Stage 4 Parkinsons under this expensive medication. I am scared shitless and I cannot handle this by myself.
My fears are exacerbated by living alone, which I've never done before. I've officially failed at my attempt. My fears foster a depression that disappears as soon as I am with you. I want to live a happy, full, healthy, active life. I want to jump out of bed in the morning and enjoy a productive day. Those days are gone. Replaced with no motivation to get out of bed or leave my apartment under the weight of constant panic. I feel like the earth is rumbling beneath me. I'm on very shaky ground and trying desperately to hide. Another person's energy is all it takes to light mine up and motivates me to make shit happen. I take my meds on time and completely forget I even have it. It is clearly night and day and there is no doubt about it. Living alone has taken its toll since dad died and I am struggling. I woke up yesterday morning with the highest stress levels I've had since coming back to Florida in 2013. Frankly, I scared the crap out of myself and was sure I was going to be making a trip to the ER for the sheer inability to get my out of control rapid heart beat pounding in my chest under control. I swore it was going to end in a heart attack That's it. I've had it. Now I'm pissed off and I need to take action now. I refuse to live this way.
Asking for help does not come easy or naturally for me. I'm usually the one that gives it. I refuse to continue to pretend I can handle this. I can't. I need to recover from the last 12 months of constant change. I went from Stage 2 to Stage 4 PD in only a handful of months. I need to reverse this and quickly. I refuse to let it get any worse and the first step on my road back is to get out of here.
I waiting for the landlord's answer to vacating my lease early. Mom has offered to take me in to care for me. I gratefully accept her offer.
I am not waiting for PD's answer. Only I can reverse this mental ping pong. I need to get on with living, not dying, and the first step is to rejoin the world by stop feeling sorry for myself. The last 12 months have been challenging to say the least. I promise to admit what I can and cannot do. Do what I can to the best of my ability and quit trying to make everything perfect. That was my old life. I am not okay on my own. I need to eat, sleep, exercise, meditate, take my meds on time, dream, create, laugh, run, ride my bike 10 miles a day, and fucking enjoy life while my meds still work. Like Cinderella I can magically walk and run but don't know how or why. I need to stop thinking and start living before I turn into a giant pumpkin. RECOVERY WILL NEVER HAPPEN LIVING ON MY OWN. I am not wasting another day. This is a 10 round match. PD may have won round 4. Round 5 ends in a knock out. I've had enough of this shit. I need to get over myself. Whatever you do, do not allow me to live on my own. I suck at it. Royally. Come see me and bring a ladder so I can climb out of this mother fucking hole I have made. I've got important shit to do. Losing to Parkinsons is NOT one of them. Not today.
MORAL OF THE STORY: Be careful NOT to tick off a warrior. We fight back dirty!!!
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"Lisa Vullo is One Face of Early Onset Parkinson's Disease. Come along on her journey from symptoms to diagnosis; through treatments and therapies. There are highs and lows, miracles and heart notes, and the determination to never, ever, ever, ever give up on the power of HOPE."