I Dream About Running: The Splendid Mess Continues
The last several days have given me a couple of kicks to the face, and every night I dream about running.
It’s a bit weird, because I never loved running. I was a decent sprinter and I did a few 5ks but I hated every moment of it. I did it for my health, not for enjoyment. Running distances never came easily to me. Now it seems to be the thing my subconscious wants more than anything else.
The treatment that I feel gives me the best shot at a meaningful recovery is thousands and thousands of dollars.
The device manufacturer is offering a significant price reduction right now, and then the clinic handles the training and neuro rehab with the device.
My brother from another mother, Jason, started a GoFundMe campaign to try and raise the funds for me so I could take advantage of the price reduction and get treatment. I’m approaching one year of disability. I’d told Jason that I worry the longer I have an abnormal gait and abnormal movements, the more likely my disabilities will be permanent. The neurologist told me that typically, most people with MS don’t see any meaningful improvement after a year.
They also told me that peanut butter is a high protein food but that’s another post for another day.
Once the GoFundMe posted, the outpouring of support stunned me. I read kind words from people I encountered very briefly in my role as a paramedic, either as patients or as colleagues, or friends I don’t see or speak to often.
There was some ugly crying, if I’m being honest. If you’ve been following the blog for awhile, you’ve likely caught on to the fact that I have complicated feelings around people, trust, relationships, vulnerability and well…feelings. That people would say such nice things, show such kindness, and donate money to a cause that doesn’t benefit them even slightly? Mind blowing and difficult to process, emotionally.
Hence the ugly crying.
I had an appointment yesterday at the neuro rehab clinic. I was very excited that through the generosity and kindness of others, I had almost enough money to sign up for the treatment program at the reduced price.
In addition to the device, I get intensive physiotherapy (like, 5 hours a day) plus access to a mental health counsellor, a nutritionist, massage therapy, mind-body training, balance and gait rehab, etc. Everything I wanted but didn’t get from the other place that shall remain nameless.
I like the staff, the results I’ve seen with previous and current patients, the onsite dogs, the program, all of it. I want to be part of this program so bad!
I’ve looked into it like an obsessed teenager having their first crush.
At the end of my appointment, I found out the program is full right now and they’ve recently lost one of their staff so by the time there’s a spot for me, the price will be thousands more.
Cam said I’m doing the program, regardless. He’ll figure out some way to get the extra money. I counter that he already works 100 hours a week, so the only option left is selling an organ on the black market.
He didn’t like my resigned attitude, but he’d come to the appointment on his lunch. He had to go back to work before I could explain my resignation.
I’m just tired of everything being hard. I’m tired of everything being an obstacle we need to find some way to overcome. I feel like all I do is wear myself out adapting and adjusting. I’m worn out from feeling like the Universe just wants me to be poor and dependant and disabled forever because I can’t seem to catch a break, and I’m tired of feeling like I’m working my amazing husband into the ground.
Finances aside, the timing would be a significant hardship as I likely can’t get a spot until winter and it’s a 14 week program in the city. I don’t have reliable transportation, cold is just as hard on me as heat, my risk of falls increases in the winter, and I struggle with fatigue but even more so when the days are short.
It just seems like a ridiculously extravagant amount of money to spend on myself.
By the time I can get in to the program, the cost of it will be more money than I made last year. Now granted, I didn’t make much money last year (I’ve decided I’ll stop being pissed off at the person who screwed me out of so much money when I stop living in poverty without the money to afford basic life necessities like transportation, medical care, prescription meds, and groceries) but still. It’s a lot of money.
Yesterday was incredibly disappointing. Funny how it doesn’t matter how many soul-crushing disappointments you endure in life, it never really gets easier to process.
The woman I met with yesterday is really interested that my brain stem is the problem. The device in question works on the brain stem. She thinks I’m an excellent candidate for good results so she’s going to talk to the medical director to see if there’s anyway to find me a spot.
After the year I’ve had, I’m not going to hold my breath.
One of my closest friends came up with some ideas how we could make the 14 week program work if I start in October or November. I love her for it, but I’m just not interested. Just like I felt at the clinic, I told her I’m mentally fatigued. I don’t care anymore. I’m exhausted and I feel like I can’t be faulted that I haven’t tried hard enough. I can’t even get a break from it, because even though I’ve made amazing improvements compared to how I was ten months ago, life is still hard. Every day.
It’s not like taking a break from a big project or taking a little vacation from work. It’s not like I can hit the spa for a little R&R. (Thanks, Covid. Thanks, poverty.)
I’m exhausted because my very existence is hard now.
Getting out of bed. Dressing myself. Physiotherapy. Physical activity. Getting groceries. Leaving my house. Cleaning the house. Walking. Going up or down stairs. Cooking. Brushing my hair. Bathing. It’s all doable, but it’s all hard.
Usually when you’re physically or mentally or emotionally exhausted, you take a break to restore your equilibrium and your ability to cope with things.
I don’t get to take a break from what’s exhausting me.
Sometimes just knowing a hard situation will eventually end is helpful, and you can push through until the endpoint and then you rest.
There doesn’t seem to be an endpoint, especially without treatment. This is my life now, and it’s hard. It’s not likely to get easier, given my diagnosis.
I guess my break is when I sleep. It acts like a mini-reset, at least. Tomorrow is always another day. It might even be a great day. Tomorrow we might win the lottery. There might be a cure found tomorrow..
Tomorrow I might wake up blind, but I’d rather not dwell on all the bad things that could happen tomorrow.
I’m a very vivid dreamer. I dream every night, in colour, and I remember them. (Apparently that’s unusual? I’ve had dreams I still remember, even years later.)
Lately I’ve been dreaming about running, like I used to be able to run. Not the thirty second, oh my god please don’t let me trip and fall off the treadmill and hurt myself, ungainly and poorly coordinated intervals I’ve been doing but actually running. Back when it was a fluid, coordinated physical ability. I’m not running to anything, or from anything, I’m just running and I’m happy.
Hard to know if it’s a sign that I’ll one day run again or my dreams are the only place I’ll really be able to run from now on. Maybe it’s just meaningless mental chatter while my brain tries to sort out the events of that day.
At least while I dream, I move the way humans should, the way I used to. MS doesn’t exist for me in my dreams.
Yet.
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If you’d like to share the GoFundMe link, it’s https://www.gofundme.com/f/helping-an-amazing-medic-with-ms?utm_source=facebook
