This blog is part of a series of 4.
Read Part 1 here
Read Part 2 here
Read Part 3 here
I kept searching, searching, searching, reading medical journals even though my brain hurts constantly from the cognitive struggle until I find someone who will listen. I had to go to Adelaide to find it.
We suggest you come into the clinic IMMEDIATELY
Sigh, finally someone believes me.
Yes We Can See It’s All In Your Head – Your Brain Actually
I’m sitting at the clinic, apparently I look like I’ve been hit by a train, bags under my eyes and slumped in the chair. It’s middle of winter, but I’m wearing a singlet top and sweating, looking so spaced out like I’m going to fall asleep, my body is limp and I’m slowly sliding off my seat.
I’ve got my eyes shut, my mind is foggy, I’m using all my energy to stay upright.
I’m silently praying, please please help me otherwise I don’t know what else to do.
The kind clinicians ask me, What’s wrong Sarah?
I have a headache, I say like a broken record.
I keep speaking but my speech is slurred and mumbled. I think I’m speaking normally but they don’t understand a word I say. My mum speaks for me instead.
The clinicians explain what they see on my scans.
We can see why you have a headache – your brain and in fact your entire body is chronically inflamed and swollen with fluid, lymphedema.
I feel hopeful that someone can finally tell me what’s happened though at the same time I feel crushed because brain inflammation sounds seriously bad.
And there’s chronic inflammation around your back, neck, ribs, legs, have you had an injury in these places?
Yes, my mum answers, she crashed her bike badly in 2010 and 2017, fractured ribs, whiplash and back injury
Well, it looks like those injuries never healed
A Trip to Adelaide
Somehow my mum has managed to get me on a plane, I don’t know how she does it, she says I’m like a zombie. I can see where I’ve inherited my determination from.
I drag my feet through the airport, I have no idea where I am. Apparently I’m in Adelaide but I could be on another planet for all I know. The throbbing in my head is so bad. The cabin pressure makes my brain feel like it’s gonna explode, my vision blurs, I see double, my brain stops functioning after take off. My ability to speak is gone. Mum knows I cannot handle talking so we sit in silence for rest of the flight.
When the clinic suggested a two week intensive cold laser treatment, three hours a day for ten days, I had no idea if this would work. All the MRI scans taken at hospital can’t detect inflammation so I wasn’t offered any treatment. As I understand, there are no drugs strong enough to cross the blood brain barrier to reduce inflammation in my brain anyway if they could see it.
I am willing to give this alternative treatment a go, even though laser isn’t covered by Medicare or private health insurance, I sell two of my three triathlon bikes to pay for it. I figure I won’t need three bikes when my brain is inflamed, I rationalise, I probably only need one bike, at this stage, yes I’ll keep one bike as a promise to return to riding when I’m better.
Getting off the plane, the lymphedema in my legs, so aggravated by the altitude, my feet swell so bad I can’t get my shoes on to walk off the plane.
I am taking a huge leap of faith that this will work for me.
It Felt Like Meeting a 30 Year Old Alzheimer’s Patient
At the clinic, the clinicians assess me, remarking I am one of the most interesting cases they’ve seen at the clinic. I have no recollection of this. I am shut down, unable to speak or make eye contact, spark had gone from my eyes. Maybe it’s lucky I can’t remember their concerned looks or hushed tones as they discuss the best possible treatment plan for me.
Later they tell me about that day, when I request my case notes, it was like meeting a ninety year old with alzheimer’s or dementia in a young thirty year old body. They had worked with other with other patients with injury to the brain and I was one the most serious conditions they’d seen. I am unaware of this, and they kindly shielded me from their concerns, reassuring me they were confident and determined to bring get me back to life.
When my mum sees the scans, she ask, why doesn’t Sarah look anything like the photos in the clinic’s brochures, why is she all white, red and yellow? Shouldn’t she at least have some green parts?.
They explain, That’s the inflammation showing up as heat in your body. White, red, orange and yellow is inflammation.
does that mean her entire body is inflamed? So, does that mean my entire body is inflamed?
Trusting the Process
I hope they are right and that the laser can reduce the inflammation, I’d never heard of this treatment, all I could do is trust them to do their work.
The clinicians explain to me how it works. They will shine light onto the inflamed parts, in my case, my entire body and brain which stimulates the cells to start an anti-inflammatory response and begin healing the surrounding soft tissue.
I quite like the idea of light healing me, feels natural. I feel some hope . I’m relieved the treatment does involve harsh drugs or invasive surgery, it will require time, lots of rest and enormous amount of patience.
At this stage, they can’t tell me how long this will take. They can only work as fast as my body will let them as the inflammation needs to be processed out of my system via the lymph system – my system is not working, clogged, they can tell because my body has stopped sweating, in fact I haven’t worn deodorant for months now.
My treatment will include daily sessions in the infrared sauna to stimulate lymph system and get me sweating again. I never knew how important sweating was for body’s detoxification process.
I have no plans beyond the fortnight in Adelaide, nor any other idea if this doesn’t work for me, I have to accept where I’m at in this moment. It is up to me to trust the process, trust my body to do it’s healing work. My beautiful body, which has supported me for thirty years, has never given up on me, now I need to let it do it’s thing.
Healing with Light
Apparently I responded really well to laser because on the first day my nose turns on like a tap. The worst runny nose I’ve ever had – there is snot going everywhere, all over my face during that laser sessions.
The clinicians explain this is a good sign as it’s inflammation being dumped out of soft tissue into my lymphatic system and they are happy to see this, I am walking around the clinic with handfuls of tissues stuffed up my nose.
Laser is not a straight forward process, everybody is different in the way they respond. Getting the right amount of light in the right places is tricky and due to my high levels of snot, they suggests I am a very responsive patient. That’s a positive, I think but it’s not always fun with the snot dribbling down the laser and wires up my nostrils.
My body needs the right amount of laser to stimulate anti inflammatory process due to the high volume, my body is overwhelmed and immediately into treatment, I’m start feeling nauseous which doesn’t go away the entire time.
The laser also increases blood flow, which brings new healthy cells to my damaged brain however the extra blood adds to the pressure in my head, and I’m dizzy and the headache comes back.
The first few days at the clinic, the headache is so bad, I pass out and it’s an hour before I could get up off the bed. The next day, we use a little less laser on my brain to ease the pressure.
All the days blend into one, I have no idea where I am, mum drives me to and from clinic, my days are simple: eat, laser, sleep, repeat. I have no energy to talk or make eye contact. My body’s working overtime to heal, I sleep twelve hours a night. Even though the laser is working, the world hurts my brain and I feel dead.
Ever since the heatstroke, I’ve seen so many doctors and told them about my headache, no one once touched my head, all I wanted was for someone to put their hands on my head and hold my tired, sore brain for a moment.
Sometimes, the laser feels so lovely, like a massage inside my skull and I finally relax as the laser gently touches the inner parts of my brain, I could almost cry with relief and comfort.
As the days go by, I feel the inflammation draining out of my skull, it is the strangest sensation. I’d never thought much about my brain before this injury or never felt it. Now I feel the swelling and pressure shift around behind my eyes, ebb and flow of blood into my brain as the laser brings fresh, healthy blood to my brain cells.
As the inflammation shifts, I feel it moving down the side of my neck, into my back, the pressure changes as it drops with gravity. When the swelling hits different parts of the brain, I experience different symptoms, the vertigo returns with a vengeance, other times I lose my sense of taste or sight, memories come and go, my speaking ability is affected some days I can talks, others I can’t speak at all.
Input Equals Output – You Are A Champion, My Gal
I feel so strange to be away from my home, so far from the ocean, Adelaide is cold and drizzles the entire time. I don’t know anyone around here for 1,000 kms.
Halfway through the treatment, I hit a rough patch, not sure why but the inflammation flares up in my brain, the swelling gets worse, I feel my skull is going to shatter with the pressure inside.
I am heartbroken and discouraged, I have no more energy to keep on fighting. I want to stop the laser and everyone to leave me alone. The lasers feel so invasive and intense, wires up my nose, my mouth, all over my arms, legs, back, the clinicians constantly zap zap zap, roll over zap zap zap, now jump in the sauna, zap zap, zap, my body doesn’t feel like my own.
It’s a bad day. I can’t stop the tears from flowing, I cry for all the frustration and anger from the last six months, being treated by doctors like I’m making this injury up or looking for attention.
I cry for all the losses I’ve had, the loss of life, livelihood, my home, my community, my purpose stripped from me.
I cry for the relief that this treatment maybe working, though it’s still early days, I’m scared of the unknown, will I ever get better again?
I cry throughout my entire laser session for the day, a wonderful mess of tears and snot even though my nose is hooked up with lasers.
The gentle, kind hearted clinician with his magnificent Malaysian Indian English accent, looking after me that day, says
Don’t cry gal, you’ll be alright, you’re just upset and scared. You will heal.
I feel so broken. My whole body hurts, my brain hurts and I feel so vulnerable lying there in my underwear with no idea if I’ll recover.
I can’t do this, I sob.
Sarah, you are a champion.
I don’t feel like one.
You are, you are.
I can’t talk anymore, I’m choking on my snot and tears, tangled up in wires and hooked up to the machines, I sit and listen
You have a CHAMPION mindset. Champions think differently to other people. Why, you ask? They think input equals output. Did you hear me, gal?
Input EQUALS output. Champions are out to win! You are a champion!
I cry even more after that passionate speech touched by the kindness and confidence he has in me, and feel deeply the hope and the love I’m surrounded by at the clinic.
You are a winner my gal, I’m gonna see you better if it’s the last thing I do!
So on and on we laser for another three hours that day. On and on I cry letting all the pain flow out of my brain and out of my heart.
As the intensive fortnight finishes, the scans show a significant change in my brain and body. The inflammation has shifted, falling with gravity, moving out of my system and I feel slightly more space in my skull for my brain to rest.
We are all excited for this initial progress, the clinicians cautiously suggest further laser at the Sydney clinic for another couple of months.
Another couple of months?!
I still have intense, daily headaches and cognitive difficulties, I’m not out of the woods yet. I was so ready to bounce back to life, but it’s going to be a longer process than I thought. So all I can do is surrender to the journey, all the time wondering, will I ever get my life back?
Thank you for listening