I realised when I got up this morning, that I wasn’t quite done with my previous entry. There were some things which I completely forgot to touch on. So I’ll quickly just talk about what they are.
Opening my eyes at day break, I sighed silently knowing that it is going to be another day in pain. There was a sense of dreadfulness, today being the day of the week taking MTX. It doesn’t bode well, because 2 new mouth ulcers popped out just yesterday. Taking MTX would mean an acute exacerbation of the stomatitis, even though I am taking folate tomorrow.
I quickly made a decision to forgo Arcoxia and take prednisolone instead, for the first time in a long long while. I was secretly hoping that prednisolone would ease the inflammation. I sighed at the number of pills I had to swallow, shook my head, and gulped it down with water.
Very unfortunately, nothing changed. I was still in pain, and the futility of it all fed the frustration in me. In turn, my mood was affected. And later in the day, I snapped. I snapped big time.
As I am turning in for the day, I made a mental check of the joints which hurt. I wondered what it’d be like tomorrow, but because RA works in its mysterious ways, I just have to settle with not knowing what tomorrow brings. Good day or bad, life still goes on.
Narrating the day’s thoughts and emotions, I guess all I wanted to talk about was how much RA affects us mentally and emotionally, apart from the physical symptoms which are usually the most apparent. And if we do not know how to manage the heart and mind, it’ll aggravate what ravages us physically.
It’s a multitude of thoughts and emotions we go through everyday. For me, it is the management of expectations that gets me through. How else, if there are are disappointments to bring you down, anger and/or frustrations to aggravate everything, and the loss of hope to hold you back? If I wake up in pain and then take my medications, I don’t go back hoping that I’ll be pain-free in a few hours and then making grand plans for the later part of the day. It doesn’t work, and I can say for sure that it is tried and tested. It doesn’t work! It’s a lot more apt to expect that nothing will change (yes I still secretly hope though), and there is a need to take a step back and adapt the day’s plan to what I can manage. It’s a boon then, if the pain subsides, and at least there is something to smile about. No?
I still struggle a great deal with anger/frustration, and of course, medication compliance. I still need to learn a lot more about them through many more days, months or years, before I can finally say that I can handle them.
I guess the anger and frustration stems a lot from acceptance. I know I did talk about acceptance in my previous post, and how acceptance can make such a difference in our lives with RA. But of course me being me, I still harbour a lot of resentment. Me and acceptance is like me and RA- I have those good days and bad days. Good days -> full acceptance, taking it all in my stride. Bad days are those days when I ask endless questions, refuse to accept the pain and limitations I have to experience, and basically lament “but it’s not fair!!!”. Oh, and also a lot of those “why aren’t the meds working???”, “why is it not getting better???”, “but it’s been so long!!! it’s endless!!!”, and finally “i am so f***ing sick and tired of these. why do I even bother???”. I am just basically upset and frustrated with myself, with RA, with life and with the whole wide world.
And it is the bad days when I start becoming non-compliant with my meds, which really just piles up the anger and frustration till I am ready to explode and shatter into smithereens. But having gone through many periods of non-compliance and paying my dues for it (not fun at all, believe me), I am gradually learning to just push myself to just down the meds.
When it seems so unrelenting and endless, which can be the case sometimes, I tell myself that good things come to those who wait (i know it sounds rather irrelevant and cheesy, but what the heck). It may take years, but I tell myself that I’ve come too far to give up now. Giving up would mean that I have to start all over again, and that by itself can be very daunting.
So keeping all that I have mentioned in mind, I trudge on with sticktoitiveness, hoping with a fragile hope that things will get better one day. But only if I let myself let it happen.