Now is one of those moments in time. Those special moments…those times when things are good.
No, I’m not in remission or cured or whatever. Not even close. But my pain is much reduced, full body mega flare tonight notwithstanding.
For the last few years I have gotten ‘used to’, for want of a better phrase, to being on a downhill slide. I have a painful, degenerative illness, and my health has been, surprisingly enough, deteriorating. For the last two years or so it has been deteriorating rapidly.
I got to a place where the pain was so intense, so unrelenting, with no hope of reprieve that my only positive thought was that at least my kids will be grown up in a few years. And when they ARE grown up, I would have choices again. I could choose to leave. I wouldn’t have to stay here anymore. I could see them to adulthood, ease gently out of their lives and let go. I had it all planned out.
That’s pretty dark.
But it does illustrate how bad ‘bad’ had become.
And it wasn’t depression talking. It was merely the truth. Life had become all about pain, and trying to manage it. Life had become just about existing, and trying to take care of my kids was my one and only priority.
Recently things have been improving. I am having more good days. It’s probably more accurate to say that I am having more good hours within my days. And my ‘good’ days are still more challenging than a normal person’s ‘bad’ day. But it’s all relative. I am doing better than I was a few weeks ago, when I was all but bedridden.
On a ‘good’ day I still take a whole truckload of oxycodone. I am still on a truckload of prednisone. But right now, those things are controlling the pain, whereas before they were not. Before they were just fiddling around the edges, giving me a semblance of life. I could take a dose of oxycodone because I had to achieve something – cook dinner maybe, or clean the toilet and bathroom – and it would control the pain temporarily so that I could achieve that task. Then I would collapse and rest.
Right now I am in bed and every joint is flaring again. I am wrapped in my heated throw and I am dosed to the gills on oxycodone. The pain is intense.
But that’s tonight.
I have a reasonable expectation that tomorrow will be better, whereas before, my only reasonable expectation was that tomorrow would be the same. And the day after that would be the same. And the day after that, and the day after that…
I lived completely and utterly in the present moment, because looking into the future was not good for my mental health. The future was full of pain. And needing to fight that pain. And that’s exhausting. It’s exhausting in itself, but anticipating that fight, day after day, can break you.
But now I am improving. The downward slide has been halted. And even reversed some. I’m not dancing on tables. I’m not dancing on anything. My thoughts are dancing though. I have exciting ideas….holidays, meaningful work, life! I am no longer plagued by a future that consists of nothing but ‘the fight’.
There is room for pleasure now. There is room for hope. There is room for a version of normalcy.
Because now for 3 or 4 days a week, for 6 or 8 hours a day, my pain levels are mild to moderate, instead of crippling. I get some respite.
I look exactly the same to the outside world. No one could see my pain before. Or very few people. I’m aware of one or two people who could look at me and know that I wasn’t OK. Most couldn’t.
I look the same but I feel very different.
So now is an awesome time. It is one of those times to treasure. I don’t know how long this reprieve will last. I don’t know how much better I might get. I don’t know how many things that were lost to me, might be possible again. And I don’t know how long for.
So I’m still living firmly in the ‘now’. But not out of fear…out of experience. Because ‘now’ is good. ‘Now’ is fantastic. Those very dark, pain-filled days are in the past. And I am staying very firmly in the present, making the most of every moment. Enjoying them for as long as they last.