With the help of a therapist, I have been through the cycle of grieving and accepting my chronic illnesses multiple times, but I don’t know that I’ll ever be completely OK with my situation. I’ve actually come to a point where I don’t even tell people anymore how I’m actually feeling when they ask because I feel like a broken record and a broken soul that can never be fixed. I have accepted that no matter how many times you try to tell others what you are feeling and experiencing, they may never truly understand. You may lose important people in your life as you have to say “no” to many outings, but those who honestly are sympathetic to your situation will stick around.
While I was told I’d have this forever, I did think that with medicine, I’d be back to my normal self eventually. Maybe I was naive to think that. I, instead, seemed to have more symptoms as time went on. Just yesterday, I found myself saying out loud that I felt like I needed to be in the hospital hooked up to an IV because I couldn’t handle the pain anymore. This statement was coming from someone who is absolutely petrified of hospitals. The pain ranges from my fingers to my elbows, to my neck, hips, knees and ankles, and I turn into a child not knowing how to help myself.
I try so often to think of how I can explain the type of fatigue I experience because it’s probably one of the hardest components of this. I try to explain to my husband that I’ll be going through my day and all of sudden, fatigue hits me. It feels as though if I don’t lie down at the moment that I’m going to collapse. It feels like the time in your life where you have felt most drained and energy deprived, but it happens multiple times a day and lasts two to three hours each time. No matter how much I rest, I still feel like I haven’t slept in days.
Since I never was able to say farewell to the me before I got sick, I am taking this moment to do so now, and hoping that anyone else who has experienced similar feelings and situations will be brave enough to do this one day too. If I have discovered anything positive about myself throughout this journey, it’s that writing has been the best outlet for me in coping.