I have said for many years that I live in Bubbleland. It’s something I’ve been almost proud of, that I can ignore the realities of my existence and pretend so hard that it feels real, that even if the now isn’t what I want it to be, I have a certainty that the alternative reality I dream of will come true in my future.
I did one of those personality tests doing the rounds on Facebook, and it was no surprise that I came out as the Dreamer. Dreaming is something I’ve always found comfort in, and even when the PTSD grip meant I lost the ability to daydream, I still found myself believing the hope that one day I would again.
Hopefulness has been my superpower, and the accompanying ability to ignore reality has been my comfort blanket.
And this is why, when taking the CBD oil started to seem magical, that I decided to believe it was. It isn’t. There is no denying that the CBD oil has had significant positive (and possibly magical) effects on many of my symptoms, and I would not be without it ever again. And also, its magical properties do seem limited.
But first, let me list all the ways it has been magical, because I don’t want to focus only on the negatives in this. Let’s start with the positives.
CBD oil has meant that I was able to reduce my gabapentin dose for the first time; instead of going up and up, and up, I was able to reduce it from 2400mg/day to 1200mg/day. As gabapentin causes tiredness, and MS has it’s own fatigue issues, this had a significant impact on my awake levels. The pain also reduced and the accompanying need for codeine, or diazepam, reduced too.
CBD oil meant that my joints felt looser, like they’d been oiled, literally. Walking downstairs first thing in the morning, the need to go one step at a time hanging onto the handrail disappeared. Whilst my hands still hurt, they hurt less.
I am convinced it is the CBD oil which has meant I’m finally starting to lose weight; I think it has brought my cortisol and hormones into more balance and enabled my body to start fat-burning for the first time in a long while. Since I started on the CBD oil, I’ve lost 2 stone (just another 2 to go – and before anyone says that’s too much, I’ll still be ‘overweight’ on the BMI scale). Of course, the fact I’m eating less dairy (no longer cows dairy) will also have had an impact, but my portion sizes are not much smaller.
I am also convinced that it is the CBD oil which has meant that my liver function tests are finally in the middle of the normal range. Even when I started on the Aubagio disease modifying treatment, they took a while to let me as my results were at the top end of normal. And then, because that is what Aubagio can do, the results went to double normal. The neurologists said they would not be concerned until the results tripled normal, but every two weeks my blood results were high and getting higher. Until shortly after I started on the CBD. And yes, the slight reduction in wine consumption will also have had an impact, but there were times I’d been drinking less and still had sky-high results.
I am certain therefore that the CBD oil does contain magical properties.
It just isn’t magical enough.
Because today I upped the gabapentin to 1500mg/day.
The MS nurse recommended I do this last week, and I’ve been resisting it. Apparently, the Parkinsonian finger twitching I’ve been experiencing when my hands are tired could be because the gabapentin is too low. I was trying to work through if the reminders-that-I-have-MS versus the not-being-on-so-much-gaba, was a worthwhile trade-off. But yesterday was an epic freaky day with it feeling like I had sherbert popping off inside my legs trying to explode out of my skin. Today I gave in, and this morning, and this afternoon, and I will this evening, I took 500mg instead of 4.
It’s 15 months since the diagnosis.
Initially I hoped that it would go away; relapses generally do. Mostly, at least.
Then, when the neurologist told me it wouldn’t, I went into another hole. But shortly after that the CBD oil came along and seemed so magical that I clung to the idea that perhaps tapering up on that, tapering down on the gabapentin, perhaps one day I would be able to manage the symptoms only through natural medicines and that all the symptoms would be masked into oblivion: I would be able to pretend that MS wasn’t impacting my life. I could hope that I have the benign kind and that there wouldn’t be another relapse for years, or ever, and that this one’s effects would be hidden.
If you’ve been following my social posts, you might have thought that I was handling this disease with grace and acceptance. Some of you have told me I’m inspiring. I haven’t been graceful or accepting. I’ve been refusing to believe this is real, I’ve been treating it as something to manage away, that will be able to be managed away, something that is annoying right now, but won’t really be around for long. I’ve talked about radical acceptance, but only in the context of the symptoms right now. Not in the context of the symptoms being part of my existence.
I suppose 15 months isn’t so very long for reality to bite. Not really. And has it? Just because today I am trying to feel my way into knowing that this is always going to be my reality, I know me. I expect this will be a lesson I come back to time and time again. Especially when new symptoms emerge. Which they will. It is futile to choose to believe they won’t.
It is time to face into the fact that this is a disease which does impact me every day. From the moment I wake to the moment I fall asleep at night; it impacts everything I do. It impacts what I do, and how I do it. It is always running in the background, and it very frequently pops up from behind the sofa to send me an electric zap, or a finger twitch, or a sharp pain in my chest, or my leg, or my arm, or an itch that won’t stop, or ants crawling on my thighs, or sherbert fizzing in my legs and wanting to pop out of my skin. It’s the heavy legs, the knee that won’t bend suddenly, the wading through treacle in my brain. It’s losing words and forgetting memories. It’s the pain and fatigue in the present, dropping the fifth thing on the floor today, and the fear of the future and not being able to wipe my own bum. MS has me, and it is here to stay.
However much I want to hide away in the comfort of Bubbleland, it’s not helpful to me to pretend this isn’t real. It’s not helpful to feel sorry for myself either, and so I have to find my way into some middle ground where I can accept the reality, feel into the reality, just as it is. Being overly positive about it is the same as ignoring it. Being overly sad about it is no way to live. My mindfulness work supports me in that and I am taking that practice seriously, treating it as medicine three times a day, morning, noon, and night. But I haven’t found that middle ground, not yet. I guess that’s a daily practice too.
And, because I’m studying Existentialism (well, Existentialist Therapy) as a way in to come to terms with my own ‘what’s the pointness’ of life, and because when Reality Bites was out, I actually had Winona’s figure and Winona’s hair, and because Troy played by Ethan Hawke is just perfection, I’ll let him have the last word (even though I can’t eat the cheese on a quarter pounder anymore, and it probably isn’t gluten free, and I don’t smoke anymore…):
“There is no point to any of this.
It’s all just a random lottery of meaningless tragedy and a series of neat escapes.
So I take pleasure in the details.
You know, a quarter pounder with cheese, those are good;
the sky about ten minutes before it starts to rain,
the moment where your laughter becomes a crackle…
and I sit back and I smoke my camel straight and I ride my own melt.”
Here’s to taking pleasure in the details.
Love and solidarity to all.
Thank you for reading xx