I was beginning to see hope and the future for myself post severe heat stroke after six months of anti-inflammatory laser therapy and then I fell over in a heap. I felt like I’d gone two steps forward, twenty back.
After months of vertigo had lifted, I’d started drive my car again. Then my heart rate stabilised enough for me to walk longer than a trip from the bed to the bathroom and back, I’d walked on the beach with my lab Delilah. When the light sensitively eased a little, I managed to spend more time outdoors shedding my vampire like existence in my darkened bedroom.
The return of music in my ears, remembering songs in my mind again. And the constant headaches were easing, giving me some sweet relief and lightening the frown on my face.
The laser treatment I’m having is gradually reducing the inflammation in my brain. It’s slow because the laser stimulates the body to heal itself. Baby steps forward, small improvements. In a way, this process feels like training for a triathlon race, train, rest, adapt and get stronger.
Two Steps Forward, Twenty Back
For unknown reasons, I had a flare up of the inflammation in my brain recently, caused a massive setback which frustrated me. My blood pressure dropped, whenever I stood up I’d get dizzy, and my heart rate would shoot up, past normal range. (For you Garmin loving athletes, my heart rate would be 150 while making a cuppa tea). A few months ago, I could ride my bike for two hours and my heart rate would be less than what it would do as staggered to the bathroom and brushed my teeth.
Low blood pressure and heart rate is a weird mixture of relaxation, death like state and complete helplessness, no energy to lift a pen to paper or write a text message. It’s also like a vampire cold legs and arms, wearing winter PJs in summer plus a hot water bottle.
Lymphedema returned, filling my legs and arms with liquid lead which meant a trip to the compression sock section in the pharmacy, the salesperson thinking I’m in the wrong aisle, “you look like you are lost, can I help you?”
And my favourite symptoms, the relentless headaches returned. I don’t mean a Panadol headache. The one where the brain swells and pushes up against my skull which makes me feel like I’m gonna explode brain gore out of my eye balls.
If the healing process is sometimes two steps forward, and one step, this last month felt like twenty steps back. Stuck in bed or sitting down, I feel trapped in this prison, I even got fixated on watching the Netflix series “I am a killer” about people on death row, I abstractly sympathised with their confinement to four walls.
Day after day of healing, the pain, the small wins, the frustration. To have a taste of freedom and then lose it, is worse than having any?
I Am Not My Illness
I’ve been recovering from heat stroke since start of the year, but it feels more like a decade since I’ve ridden my bike, run with my sistas, hang out with my friends, had a drink of champagne, been involved in my community.
Last week, Dad took me out for a pot of tea and cake at the beach. As we looked over the beach, I remembered a year ago I was swimming along this very beach and now I’m stuck on land, dreaming of those days.
Dad gave me a pep talk, You are not this injury. You are still alive, don’t forget to keep living.
Long term illness is deceptive and mind boggling. I’ve had to fight for my life, I’ve been screaming my symptoms and experiences to many doctors hoping to find a healing program for my injury. Many times I did not feel truly heard by the health care professionals. I tired of not being listened and becoming more consumed by the illness itself and forgetting who I was, the fun loving swimmer who would swim from beach to beach.
If you’re not careful, the illness can take over your personality. As Dad says, this is not YOU, Sarah.
Illness can be self absorbing and at times, rightly so. I feel to listening to my body, respecting it’s messages, rest here, don’t do that, this is not right, I don’t want that, I need more of this and less of that is the only way forward. This includes what’s in my heart to keep driving forward and keep fighting for my life, to find peace in my body, homeostasis is the fancy scientific word.
The Waves of Healing
I can see now, healing comes in waves and spurts. Even though my high heart rate, low blood pressure and edema comes and goes I recognise sometimes this healing journey is two steps forward and one step back. And then another step forward.
The lesson for me is to let the injury go and keep living. I realise I have much to be living for. I have more to do, share, write, create, love and talk about. And I may return to the beach, even if I can’t swim, being there will be enough and soul filling.