Surviving intensive laser treatment in Adelaide, hopeful I was on the mend but no one could tell me how long it would take for the inflammation to drain from my brain. The brain’s lymphatic system only works during deep sleep, and I wasn’t getting much of that because of the swelling.
Equipped with a couple of lasers and weekly visits to the Sydney clinic, I continued lasering, hoping, wishing, praying it was working. Each day felt like an eternity, constant headache, nausea and pain, bed bound. I had no idea this next phase would last five months.
All By Myself
The flight back was challenging, the air pressure swelling my brain again, which set me back a month until it settled. Still cognitively impaired, I felt trapped inside my head, crippled my headaches, basically spaced out with no idea where I was or what day it was, I felt so alone, the laser was new to me and I didn’t know anyone else who had used it successfully.
Thankfully, the chronic inflammation in my body began to heal: fractured ribs, whiplash in neck, soft tissue damage in back and legs from several bike crashes eight years ago.
The brain taking longer, it has a slower drainage system, only drains for a few hours each night. And if I did too much laser, the extra blood circuiting would swell my brain and give horrible headaches, so it was a slowly does it approach.
How could I do this for months on end, alone? I was so spaced out and bored, lying in bed staring at the walls of my room. I craved my social network but had no energy to connect or way to explain what I was going through.
The clinic put me in touch with another patient who’d had her intensive treatment a month prior to mine.
Her name is Serena.
I now have a laser buddy.
Patiently recovering from labrum surgery in hip socket, Serena was excited to get back to her work and training for her next triathlon. Then the doctors found a tumour in her jaw bone, she wasn’t even thirty. The surgeon removed the tumour along with part of her jaw bone and facial tissue. They reconstructed her jaw using her pelvis bone, butt and stomach muscles. Her life saved but the after effects of surgery were brutal.
During the operation, the surgeon cut through nerves and tissues that have caused constant pain, fatigue, brain fog and chronic inflammation.
Oh yeh, sorry the doctor explains, it’s just part of the deal.
Serena’s come a long way, from when she can’t walk, talk or move from constant pain and fatigue to now slowly getting around on her crutches and eating a puréed diet to protect her jaw from further injury. She is three years into her recovery journey, and an expert at laser – a veteran compared to me.
We live 2000 kms away, though we’ve never met – there’s a connection there. Both thirty, triathlete’s, with a Labrador each, a love of cooking, both lasering at home and managing a chronic illness, we have much in common. We talk about our sisters and how much we care (and worry) about them. Of course we are not exactly the same, Serena likes going to the shooting range and drinking coffee. I write this blog and drink tea.
As I can’t construct a sentence verbally and Serena is restricted verbally by jaw pain and arthritis, we reply on text messages to connect. Our energy levels are about the same, sometimes nap midsentence, resuming the conversation an hour or so later. It’s the perfect friendship of equals.
Trusting the Process
Having both had intensive laser treatment in Adelaide and it was our job to continue on laser at home. It’s a daily task, I have lots of parts to laser, it takes time, sometimes hours everyday.
It’s a tedious process, patiently waiting for the light to do it’s healing work in my cells. I spend many hours, alternating between soaking up the winter sun in my garden – as sun rays are the same healing frequency of the lasers, and lasering. The sun energises and heals my tired body, I crave the sunshine. I am struggling to be ok with this healing interval in my life.
There are challenges to this slow way of life, sitting in garden waiting for time to pass, the laser to work, body to heal, learning to trust the light to heal every cell in my body. My head is so swollen I still can’t walk or talk, or do anything but stare at the sky.
Serena is doing the same, giving her body the time it needs to heal.
Doubtful, I text her, I hope this will bring me back to life again.
It will. It will. Trust the process. She confidently replies.
I find courage from Serena’s positive results from her treatment and I hope the same will be for me. I’m comforted that she’s a few months ahead of me.
The process of laser therapy is unpredictable. Sometimes the inflammation flares up, my back spasms and I can’t breathe for an entire day. At the infrared sauna one day, intracranial pressure increasing, the light has created too much blood flow to my brain, I nearly pass out from the pain. I crawl out of there, sweating like crazy.
Serena, I nearly died in the sauna today, I thought my head was going to explode!
I’m over it, I feel like the treatment is making me worse, I want it to stop, all of it and leave me alone. There’s a pity party brewing in my mind.
Serena pulls me up on it, The body is an incredible thing. Never say never to it. It will keep fighting. One win at a time.
Both together, being brave and giving each other courage to continue on the journey. It seems easier together as if we are a team, even when Serena finds courage from my situation, she shares,
I remember how bad I felt and then the clinicians said “well you should have seen Sarah, they had never seen anything like it with all the inflammation everywhere.” I thought holy fuck.
Daily, we encourage each other to keep lasering, eat well on an anti inflammatory diet, rest and care for ourselves. All this laser is new to me, and I’m half freaked out by my body’s response.
Serena, I’m having some pretty weird food cravings, eating lemons – whole. Gallons of vinegar. Half a kilo of rocket each week. What is happening to me?
Serena, I feel like I’m half dead, half alive. I’m so spaced out. It’s weird.
Serena, I’m constantly nausous, I can’t eat anything but I’m still craving rocket.
Serena, I can’t get out of bed today. It’s midday. Am I dying?
Without fail – ding – Serena’s immediate text reply, oozing positivity and encouragement,
Keep lasering, it’s working, remember how far you’ve progressed.
So I carry on, zap zap zap, trusting, hoping, praying this is gonna work.
I text, I feel so much better this evening, heading is going and brain swelling easing a little.
She replies, Phew it’s soooooooo good that is easing!! I’m so happy for you. Woo hoo!! It’s amazing. I love laser and how our body sucks it up
When dealing with a long term illness, everyone doing things for me, I’m begin to lose sense of my own self. With my laser buddy, now I have someone else to think about except myself, and being there for someone else makes me feel valuable and needed and that in it’s self is healing.
Serena texts me, I was feeling really crappy and rang my dad to say I’m gonna sell my triathlon bike, I’m never riding again
ohhh that’s sad, Serena, I text back
Then I changed my attitude around and decided one day I’m gonna get better and ride again.
Yah, that’s the spirit. I’m glad you didn’t sell your toys
One day we will recover and need our bikes.
We talk about how we are adapting without swim, bike, run and how to find the joy in life.
Serena checks in with me, how do you feel?
My brain still swollen and headachy, I reply, I can’t really remember much of the past six months. I’ve got less feelings, I’m almost apathetic as I don’t have any brain power to process thoughts or emotions and sometimes that’s freaks me out.
Life has changed so much for you, that’s understandable. How are you REALLY? She probes, not happy unless my mental health is ok.
I’m really struggling with feelings of grief cause of losing my old life. I’ve had to drop absolutely everything to focus on my health and I’m finding that a challenge. Cause my brain is so foggy, I don’t really have enough energy to wrap my head around the concept of where my life is at the moment.
My constant thoughts are: “Where am I? What am I doing here? How did I get here? What date is it?” It’s a constant struggle to remember and then have limited memory of yesterday or no thoughts about tomorrow. It’s really bizarre and hard to explain. It’s like I’m living in a dream or a parallel universe.
I have no idea if any of this makes sense to Serena, I’m tired from typing out the text message, so I take a nap in the middle of our conversation, when I wake her empathetic reply is waiting on my phone,
That’s so hard lovely. You have communicated it so well. I can’t image what it must feel like. But I understand the grief of what is lost and as that is coming back to you it will be heart wrenching. It breaks your heart.
I would say look forward but that’s no possible really for you at the moment.
Someone wise told me yesterday, “one day at a time”.She says, throwing my advice back at me.
And together we hold our broken hearts and look forward.
It would be easy for us to fall into the trap of complaining about our situations, we both make an effort to keep theme positive, sharing our will to live, finding solutions in our challenges.
Maybe because we are goal focused, athletes or just our personalities, not to say we don’t have bad days, or setbacks, but when we do we discuss, cry, pick ourselves up again and keep going.
We focus on the fascination of our bodies progress, even the setbacks are feedback for adjustments to our daily treatment. We share research, theories, healing modalities, failed experiments and fashion advice.
When my blood pressure drops really low for a few months, and my ankles turn into cankles with fluid, I turn to Serena:
Which type compression socks do you like best?
After deciding on the brand and style, it’s time for the runway show.
Now they are sexy
Compassion for each other’s struggles and a kind word can make all the difference. One morning, I struggle to walk the twenty metres from my bedroom to the kitchen for a cuppa,
I text, Them feels…. when it’s an effort to lift my tea cup
Serena replies, I feel ya. I’m dragging myself around the house too. What you need is a really long straw so you don’t have to pick the cup up
Celebrating the Wins
Together we celebrate the small wins, the progression in our healing journeys.
After my first day of laser, the light sending oxygenated blood to my starving brain, I wake and remember the date, for the first time in six months, it’s a miracle. I roll over in bed to text Serena.
I text, It’s working, Serena! I woke up and remembered the date! All I’ve had for so long is fuzzy brain, blank, nothing up there.
She replies, Yah!!!!!! I love laser.
The next night, I have my first dream in over six months.
I text her, SERENA! I DREAMED. It was amazing – can’t remember it now, but that doesn’t matter, my brain is beginning to wake up.
Serena is patiently building up her hip muscles from where the muscles were cut in surgery, starting with a 10 minute walk, increasing 5% each week. Her patience and determination inspires me.
She texts me, I walked 5km/hour today for 14mins, So excited. No pain. 3.5 years. I’m so happy. It’s a huge step forward.
Yah! I text back, Celebration time and soon you’ll be climbing walls like a NINJA
Omg I fucking love ninja – ninja warrior
There are no wins too small to celebrate, even vacuuming, because every step is a step forward to recovery.
Spending months in bed, some days I can’t lift my head off the pillow, my head so heavy from the swelling. I’d fall asleep at 5pm and wake at 9am, and I still can’t get up. These days are trying and long. The time passes with better when shared with someone. A buddy doesn’t necessarily do anything, listen, witness and feel my pain.
Together we focus on what we can do and find positive solutions to the things we can’t do. Shared experiences are easier to cope with the setbacks and the pain. Together looking forwards to a better future.
Thanks for listening
- A New Advertising Campaign for My Brain – Part 2 of 3
- A New Advertising Campaign for My Brain – Part 1 of 3
- I had an accident in the bathroom
- Living With Amnesia
- I’ve had a good day