The Day the Poltergeist Moved In, Set Up Shop, and Wielded a Nightmare: Part 2
I call my disease a poltergeist because it felt as though this entity, with enormous power, engulfed me, controlling my every thought, need, want, and desire. I had spent decades building and developing myself as a person; my skills, businesses, networks, and friends. I was very healthy and had a full, amazing life. I pushed the limits of each opportunity that was available. I loved to volunteer and make a difference in the lives of others.
Then in one fell swoop, this beast destroyed virtually everything I loved and cherished so dearly.
A quick decline
I didn't have the time to process the diagnosis that I despised receiving. I never experienced a relapse and then felt hope for recovery. Nor did I have the option of slowly becoming accustomed to the idea of using a cane or a walker. I arrived in the ER on a stretcher, and a week later I left for a rehabilitation hospital where they forced me into an electric wheelchair.
I was told this was the best I was ever going to be for the rest of my life.
Pain and unsuccessful medications
I immediately was put on a multitude of colored pharmaceuticals to quell the body spasms and other symptoms, as well as sleep meds, since the intense pain would keep me awake at night. It was beyond my comprehension that pain could exist in so many diverse forms. It seemed as though the beast was having a jovial time torturing me.
Alongside this, I had about 23 infusions of Methyprednisone in the seven months following my diagnosis. The poltergeist would not relent and I relapsed continually. I was a health nut and all these changes were extremely disturbing for me.
Coping with my MS diagnosis
I hid my disease from everyone except my closest friends. I am a very private person so I lied constantly about how I was and what was wrong. I was far too embarrassed to go in out in a wheelchair or use my walker, as my secret would be blown. Since I couldn’t cope with the diagnosis, the radical changes, and the insufferable grief from the losses, I wasn’t sharing anything publicly.
During all of this, I had to figure out how to carry on doing business even though I did not possess the functionality to do it. To help, friends would rotate in shifts coming to my home. I was too weak to sit up so they would read out my work emails to me, while I lay on the ground, figuring out what to dictate back for them to type.
Advice and crucial support
Lovely people from the MS Society and people from my Health Authority were arriving at my home regularly telling me what I should do, how to adapt, and to sell and move homes, etc. I was told I should quit my business and go on disability. I was aghast when a shower stool arrived one day (admittedly I needed it badly).
I was alone advocating for myself on all levels, financially struggling, and unwillingly letting business slide through my fingers. I couldn’t drive anymore so I had to beg rides from my generous friends to reach the 1-2x/weekly specialists’ appointments in the city 2.5 hours away.
Facing the unknown
To say I was overwhelmed by everything was an obscene understatement. I was petrified of the future.
I immediately launched myself into any sort of rehabilitation program I could find or re-purpose programs I’d been on in the past from sports-related injuries. I did a lot of core work, adapted yoga, and tried electrical stim for firing up dead neuro pathways. Unfortunately, back then I didn’t know I couldn’t push through neurological exhaustion.
Learning to listen to my body
Collectively, all of these things I was trying to cope with, and my attempts to power through them, were at the extreme detriment to my own health and the potential recovery, if it were even possible. Changing this attitude has been one of the single most challenging concepts I’ve grappled with. I had to relent. I had to listen to what my body was telling me NOT to do. I couldn’t push harder when there was nothing left. I felt like the poltergeist had won. But little did IT know, the war was just getting spooled up!
Do you live with any comorbidities aside from MS?