Well to be honest I've now started and Restarted this post about 30 times in the last Few Hours. Its a topic I don't generally discuss and to be fair its something that bothers me.
Its now 6 am and My son just got up. I made him breakfast, Told him a silly story about Minecraft (He loves it even at 6 years old) and now he's comfortably watching Cartoons on TV.
With that Little boost, I think I'm Ready. This time I'm going to leave the normal joking aside I think, so forgive me if this gets a bit boring, or long winded.
So here we go, I'm going to take a deep breath, Grab a Coffee and get to it.
Me and My Pal Multiple Sclerosis
Even typing it makes me angry, Let me explain. I don't have problems with anyone who has a condition, no matter what it may be. But I was always the guy who could help, always the one who took care of my family and friends when they were sick. Cancer, Dementia, Surgery, A Cold no problem I like taking care of people.
Hell I probably have only had 3 Colds in my adult life. I NEVER get sick.
Sorry here its gonna get a bit heavy, Its heavy going on this end at least.
A Brief as possible explanation:
So a Few Years ago now I get constant back pain, I mean constant. It starts off bad and gradually gets worse. At this stage in my life I am working a Fairly large renovation job and finances are tight so I keep working.
The back pain gets worse, and worse, and yeah still worse. I'm taking Pain pills by the handful but nothing is touching the sides. Tramadol, Oxycontin, I got Fentanyl patches on every damn limb, kinda pain.
After A few trips to the doctor, I get sent for an Xray, They find I have a Pretty substantial Herniated disc, and eventually they send me to a specialist who gives me an injection in my spinal cord between the discs.
Boom sorted right? I get outside the specialist and my world goes ape shit. It feels like someone's trying to pull my spine out of my ass, which is about as close to accurate as I can ever describe it. I'm pale, shaky and sweaty and My wife is scared, like shitting bricks Scared.
She gets me home, gets me inside, gets me to bed and thankfully I pass the fuck out. Next day no change, I'm laid up in bed and now every time I go to get up, my left leg doesn't work properly. Keeps going like a limp noodle every few steps.
More days go by, more sleepless nights, so back to the doctors we go, I have an MRI, once again on my lower back where the pain started, huzzah nothing new there. More Cortisone injections, more pain pills and at this stage I'm pretty certain I rattled like a maraca when I walked.
(A note Just to cover why my missus isn't mentioned for the next bit)
Now The Wife has previously been bought a ticket by a Chinese friend to go to China, All expenses paid etc. So once in a lifetime opportunity. She wants to stay home to look after me, I tell her I'm fine get the hell on that plane and bring me back a good souvenir. (She brought me back a wallet by the way...)
Now its just me and the boy, He's 4 and taking everything like a trooper. I'm getting worse but I've laid off the pain pills, they weren't working anyway. One Sunny Sunday morning we go to the Town market, I'm walking around feeling pretty cheerful. Back seems to be hurting less. All great stuff.
After 45 minutes or so walking around this market I start feeling off, The old heart is accelerating, cold sweats, something weird is happening, Basically stop this Ride I wanna get off.
I collapse, all my bodies alarm bells are ringing, The locals help me get to my mother in laws car, and she drives me to hospital.
At This stage I'm convinced I am dying, I asked her to look after the boy until my wife gets home, don't let them bury me, burn the evidence etc.
At the Hospital they scan my back again (No clue why all the constant interest in my back to be honest. Must be one sexy back)
Nadda, Zip, Zilch, Zero Nothing new there doc. I get an emergency appointment at a hospital in the city, this time they scan the whole back with ultrasound. No great problems there then doc. Off You go, Here you are have a giant morphine injection for the road.
I stay at home with my son, by this stage I'm loosing the ability to tell when I need the toilet, So to add to my humiliation of feeling like this shit is all in my head, I'm pissing myself because I don't even know I need the toilet until its too late. Fucking Marvelous.
My wife gets home from China, (Never been so happy to see anyone.Ever.) She takes me back to the doctor,She Insists.
This time something new, he asks me to do something silly. Stand on your heels and rock forward to your toes. I try It and to be honest don't remember what happened next, I hit the floor, He got me an emergency appointment with a Neurologist.
Now the Neurologist had me in his office for 5 Minutes... looked at all of those MRIs and scans on his computer, checked my reflexes, and Pegged what was wrong with me in 20 Minutes.
He of course doesn't tell me this just makes a note in his book and sends me to the hospital the next day.( Guess he didn't want to scare me, Good man)
To confirm his suspicions he sent me in for a Brain scan, Full Spine scan, and Brain MRI, and drew spinal fluid, Basically every scan you can, and made me a human pincushion over night. They sure are Thorough here in France.
I Go back to the Neurologist a few days later for my results, Hes looking A bit grim so I'm guessing the news aint the best. 'Have a seat'
Damn now I know its gonna suck. He gives me the details,
His words start flying through my rapidly translating panic brain.
- Primary Progressive MS
- Permanent Nerve Damage to My Sciatic Nerve
- Widespread deterioration
- Brain Leisons
- Wheelchair
- Loss of Speech
- Blindness
Shit Doc don't hold your punches...
Apparently what had been happening to me the last 8 months or so is called a Crisis of the Nerves Here in France. I had most likely always had MS but it had never triggered. Now it was in a permanently active state (At least that's how he explained it to me for my little brain to understand it.)
So we have a nice long chat and he lays out my options, Lucky for me he's an open minded sort of fellow. He explains that with normal treatment I can be Pain free, quickly see improvements, and have a few fairly normal years left.
Downside, is the conventional treatments are mostly nerve blockers and will accelerate that wheelchair coming my way as well as all the others.
So I ask Him, What's the alternative. 'Deal with the current effects, These episodes usually run their course, could take a day, a week, or a year.' In the Mean Time try Cannabinoids to manage the pain.'
Now I have been a bit of a pothead for years but that made me smile at least. If you've made it this far I guess I should explain my current treatment Regime. Which is the whole point of this story.
Physical Effects Before any Treatment:
Constant Shaking, Left Leg Giving way spontaneously, Right Hand opening on its own, Problems controlling bladder,bowels etc.
So Here's the medically interesting bit, I wont apologize for the above Rant but I needed to get that out of My system.
I initially dug through every bit of information on MS I could find. I researched treatments and information on homeopathic methods, Sativex and (a drug in the nabiximols group),Exercise regimes and dietary changes.
The available information was untested to any great extent and personal accounts varied widely, So I started simple. I Ate porridge Oats for breakfast.
(I know sounds strange but oats have shown to be beneficial in protecting the and aiding the nervous system.)
Next I started with CBD oil as a Treatment, Twice a day at 25mg I would dose and during the following 2 weeks I tracked my progress. During the second week I introduced THC oil (Rick Simspon Method) for pain management.
After a month With some very minor results, I consulted my neurologist and he gave me more advice. Smoke less and Try Ingesting the actual plant via Micro dosing.
So Round 2 of testing, I switched up and ingested approximately 0.10 grams of bud (mixed with honey and a bit of boiling water to soften things up.) twice a day.
Once again I tracked my progress over 2 weeks. There was a significant decrease in my shakes, slight improvement to bladder control etc.
RESULT!
After a Month of Micro dosing with the plant in its natural state I completely stopped the oils. Following the same regime during a six month period my bladder and bowel control improved, the shakes had nearly completely gone and my mobility was slowly improving.
After a Year I felt pretty close to Normal, I could walk fairly well, My hands had stopped releasing on their own and my leg hadn't given out on me in months things were looking good.
Then... Boom literally over night the pain that had been in my back went. It was like a miracle. To be honest I actually cried like a baby when I woke up the next morning and that constant nagging pain went.
I have only missed my micro dose regime once since, for 8 days I had run out. The shakes started to return, The bowel and bladder became less controllable. Pain levels increased as did fatigue.
When I restarted and bought some pot (at a hugely inflated price) It took 2 weeks to kick back in. I rapidly regained the 2 weeks of lost ground and things returned to normal.
So my main point, is the plant itself has been far more effective in a controlled regular dose. There are so many under researched traits to the actual plant, Aside from CBD and THC. I'm no professional but it has genuinely helped where nothing else did.
Nowadays as a general rule My MS has no great effect on my daily life. I have bad days still, which we call MS days around the house.
This is in no way medical advice, Its MY personal experience, what works for me. Its a statement, that sometimes you have to choose for yourself what course your medication and wellbeing will take.
Occasionally you have to take a risk, but if your lucky like I was, Your Medical professional will help you make informed decisions.
I briefly joined a few support groups after I was diagnosed and all the people with prognosis similar to mine suffer far more than I do. I found it more depressing to be a part of these groups than to think and act on my own.
My Neurologist is still in contact, My nerves are still deteriorating, but me? I'm Fine thanks. In fact I'm better than Fine, I'm fucking fantastic.
I have a Beautiful wife, Awesome friends and the best damn kid I could hope for. So no don't feel bad for me, nope NEVER me.
I'm ok, As for the MS? I've made a choice, It doesn't bother me, Its just a very small part of the whole.
So by now you will have noticed there's a theme to the pictures in this post. They are all the happiest moments of my life.
I'm not going to share medical tests and photos of me in hospital beds, Nope, I deleted those photos over a year ago, as soon as I knew they existed.
I'm gonna share my pride and joy, I am made of parts equally good, bad, and ugly. But I will never be made of the sum of My affliction.
Its now 8.30, the boy needs a bath, he's been fed and then its bed time. I think I will hang out with him tonight a bit longer than usual and read him an extra story.
This post has been a fair old while in the making, By far it has been the hardest thing I have ever written down.
I've stopped, started, chopped, changed, and edited this thing so many times now. This will have to do I cant do any better on this topic.
Its long drawn out and once again @edprivat over 2000 words. Challenge 2 Accepted and complete.