The other day I was thinking about the transformation of this blog and I realised that it has pretty much ridden on the same MS roller coaster that I’ve been riding over the years (not too surprising I suppose by virtue of its name alone).
I didn’t start it until almost 5 years after my diagnosis (2009) so I was sharing everything I’d experienced to that point from memory. Additionally, I was writing every week day; I’m still amazed at that. Maybe I was really making sure that I captured everything before it flew out my brain? Who knows but everyday without fail I published a post. Back then, I was always nervous about my writing and usually felt self concious about sharing (still do sometimes). I’m sure that G got tired of me during that first month or so because I always asked her to read a post before I published it and then the first time I didn’t ask her, I was a bag of nerves. Why? Who the hell knows…go figure. I always worried when I started the day not having anything to talk about, and then somehow I’d think of something and the words would just flow. Even though it was 5 years after my diagnosis, the MS had just started rearing its ugly little head as a somewhat regular fixture in my day to day life and that was something that I had to get used to. It wasn’t until 2007 that I had my most notable exacerbation that lasted 6ish months and since then my physical disability…well u know the story. I had 2 years of blissful ignorance of what was to come.
Prior to that, I don’t think that I was affected much, so I guess you can say that I started the blog at the right time. After I started it, I had a number of medication changes and always had to go thru the process of verification and insurance coverage etc so I shared all of those woes (a saddist who asked me if my name was my real name, a doctor who insisted on marrying me off no matter how many times I corrected him) and dosage issues. Everything was always trial and error and there was a lot going on. Additionally, I had to come to terms with cohabiting with the always-present multiple sclerosis and learn how to share my space with it. It was a constant tug of war with my trying to figure out and understand my new limits and finally facing the reality that life as I knew it was no more; that in itself came with drama and stories galore.
I’m not sure when but at some point, I started giving myself a break because I realised that there was no need to publish daily – that was just extra pressure that I was putting on myself. Then sometime in 2014, I took a turn for the worst (physically).i was still writing but the posts were few and far between and by December of that year, I could no longer write. Even though I hadn’t had an exacerbation per se, my physical disability had worsened and I wasn’t sure just how to handle things. As I suffered, so did the blog because I didn’t publish anything again until June 2016. At the time, I just couldn’t handle writing about being sick anymore and especially about getting worse – putting it in writing just drove the point home that once again, life as I knew it was done and changes needed to be made. Writing around that time didn’t bring me any joy and I just couldn’t do it any longer. Was that a bad or wrong thing? I don’t know but it was what I thought was best at the time. A month or two prior to my starting back in June, I remember that ever so often, I’d think “that’d be a good blog post” and then realise that “oh I’m not writing these days” hmmmm.eventually I really started missing it and I had to start back.
These days, the ms (I don’t always like to give it importance and capitalize; leave me alone, it’s the little things) is stable and quiet-knock on wood-and posting daily is definitely a thing of the past. I don’t like its presence but I’ve learned how to live my life with it’s being around all the damn time and I have little choice but to accept that I have
to share my body. I have little drama and there’s just not that much going on (a very good thing if you ask me) for me to talk about hence the reason that I post weekly. There’s no more trial and error with medication; I have the perfect combination of all tablets and CBD oil now (cept for the thyroid tablet cuz my thyroid still eh know what to do with Lemtrada). I know that my pill cocktail is correct – it’s only 2 in the morning and 2 at night – because if I miss either dose, I’m a lil out of sorts (functional but definitely not normal)until I take them. It’s always a relief to be moving around stiffly or out of whack and then discover that I forgot to take pills. I do have to deal with one “symptom” (why can’t I ever spell this word on the first try? ever??????) and I’ll talk about it next time but it is more of an annoyance than anything else.
Anyhoo, FYI…I’m out of here next week Tuesday so I’ll be M.I.A. for a few weeks so allyuh hold it dong till I reach back.
Stax