It wasn’t a sudden arrival, but rather a slow, slithering thing that began to poke it’s head out from time to time.
Yet again, MS gets to rewrite the story – change things up.
I have mentioned that over the past few years, my MS and symptoms have greatly improved. Although my balance, mobility and fatigue have gotten better, what has arrived in it’s place is pain. Looking back at my early writing, back when I needed my cane (or Segway) to get around and falls were a common occurrence in my life, it seems that what I didn’t have was pain. It’s often hard to remember “way back when” but I don’t seem to ever mention it – only the walking, falling and fatigue (oh and peeing my pants on occasion:) Back then, I thought I had it down. I learned to be the one that walked with my rockin’ pink cane, the one that stumbled like I was drunk and the one that struggled to not worry about what others might think.
But then this damn disease decided to mix things up a bit and my walking and balance improved. Externally I looked like a “new and improved” version of me, but on the inside, a new battle was just beginning to kickoff in my body. It wasn’t a sudden arrival, but rather a slow, slithering thing that began to poke it’s head out from time to time. And then….more and more often. Until where I am today – which is I can still walk well and my balance is pretty spot on – but the pain is now ALWAYS there, never giving me any relief. I used to have “bad leg days” – times when they would burn and hurt and sometimes just give out all together. Then I began to have “bad pain days” when EVERYTHING just hurts – or at least that is what it feels like to me. It might just be that the PAIN is so overwhelming, so all consuming that I can’t focus enough to even begin to try and describe what it feels like OR where it is hurting.
My parents came out for a visit last month – long overdue and amazing to once again have them stay with us here at the house. But when their stay was over, Mom went home and dutifully read my very next blog post – which led to an email. A message sent, NOT admonishing me for my new Cannabis Adventures – but simply saying that they had no idea that I was in pain during their stay. She ended it with “you hide it well.” I immediately felt pangs of guilt – that I was being called out for “lying’ or at least not telling the truth. But the truth is that I don’t WANT to talk about it. I don’t WANT to tell people how shitty I am feeling. Because not matter how concerned they are, or how much they care, they can’t make it go away. It doesn’t make it any better to have people know that I am in agony or to try and talk about it.
What DOES help is trying to ignore it. Although in reality that ISN’T a possibility, I can do a pretty damn good job of trying to convince myself that it isn’t as bad as it is. Smiles and laughter do help because they offer moments that I can try and forget, even if for just one fleeting moment, that it just HURTS and won’t STOP! I recently ran into a post on The Mighty by Nikki Albert (4 Reasons I Say, ‘I’m All Good’ When I’m Actually In Pain) and it made me actually think about why it is that I hide the pain. The “old me” would have not said anything because I didn’t want to burden or bother OTHER people or wanted to avoid making THEM feel bad or uncomfortable. But the “new me” hides the pain because it helps ME. It is easier for ME to NOT talk about it, to NOT complain about it never going away. It is easier for me to try and get lost in the “pretend you are okay act” that I put on, than to actually stop and let the pain take over my every thought.
In the past few weeks, as I have begun to explore using cannabis and CBD oil to help with the pain I have come to discover something. The pain that I have been living with has managed to highjack my other feelings and emotions. I can KNOW that I am happy – that I am living a life that I only dreamed of and I can SAY that I am happy. BUT until recently as I have found some moments of relief from the pain I don’t know that I was actually able to FEEL that happiness. To allow it to enter in to my brain and then just sit back and appreciate it. When the pain is all consuming and even as I continue to go about getting shit done and trying to act like everything is normal and all right I am always in this fog that the pain creates. EVERYTHING is evaluated in terms of “how am I going to make it?” “What is the game plan?” – because there HAS to be one in order for me to make it through the day. I have to maintain some semblance of control even if my only actions are to respond to the pain and try to simply survive through it and on into the next day.
“In my mind I KNOW I am happy but I just don’t FEEL it because I am too busy FEELING the pain”
I have also come to learn that this pain – and trying to get on top of it, is like peeling back the layers of an onion. I talk about not being able to describe WHAT hurts, because it seems EVERYTHING hurts. But as I have started using the cannabis and CBD oil products and am experiencing breaks in the pain I am able to actually FEEL different sensations of pain and different parts of my body hurting rather than an all encompassing whole fucking body thing. Granted, it’ is still pain BUT it’s pain that I can pinpoint, that I can describe. And hopefully over time, I can find other things like exercise and stretching, diet and even sleep patterns that can help lessen each of these new “points” of pain.
I did in fact make another trip back to MY POT SHOP – on Super Bowl Sunday. Not surprisingly, neither Alyssa or Jason were in, BUT my newest MMJ BFF Tommy reconfirmed my thought that this is one amazing shop that has knowledgable employees that are willing to listen and offer help and advise. I can not reiterate enough just how much this seemingly small thing means to me. That I have found a place that I no longer feel “silly, weird, out of place or self-conscious” visiting and where I know that I will always find folks ready to help is just amazing and is making this adventure just that much more fun!
Rest assured I did not walk out of there empty handed. After this shopping spree I arrived home with:
(for sleepy time)
I will be writing up my reviews on each of these products over the next week, so stay tuned to hear about my next MMJ moments:)
I think I might be falling in love with Bubba!!!!
**This is my personal blog and all opinions are my own. I am not a doctor, nor do I play one here on my blog. The content here is for informational and entertainment purposes only and is not intended to replace the advise of medical professionals. Be sure to contact your doctor before trying any new medications/vitamins/supplements, physical activities or therapies **