Ups and Downs - Again and Again
I realised it's been 5 months since my last post, so I thought I'd give an update after the last few months of a total rollercoaster of emotions.
Tiny bits of independence regained
After getting new technology that made it possible for me to operate my wheelchair and my computer after losing the complete use of my hands and arms earlier in the year, I felt elated about the possibilities those technological innovations were giving me. If you have found yourself in a situation where you were no longer able to do anything by yourself, any tiny bit of independence you regain feels like a major success.
After experiencing complete dependence for several weeks, I felt immeasurably happy to be able to drive my wheelchair again with the new chin control and to be able to navigate the Web on my PC and write messages with the mouth joystick.
Difficult accessbility tools to manage
But the happiness didn't last long, as I had to realise that learning to master those new tools proved to be more difficult and taking longer than I had anticipated.
Navigating the wheelchair with a chin control inside our small house turned out to be trickier than I had thought, and more than once I found myself trapped after navigating a corner and getting the wheelchair somehow wedged in an impossible position, so that I couldn't free myself without help. The sheer frustrating made me sob, both discouraged and angry about myself, for having navigated myself into such an impossible position.
Lost all confidence in leaving the house
Such incidents meant that I lost all confidence in actually leaving the house, even when I would otherwise have had the energy to do so (which has become a rather rare occurrence these days).
I also lacked the patience when trying to type a text or navigating the computer. The going was so slow (and the result full of typos – or – when switching on the autocomplete function – making little sense) that I often gave up in despair, too exhausted to go on.
But then things started to go better.
Mastering the chin control
Granted, I have hardly left the house in the last 6 months, simply because I lack the strength to sit upright for long enough. But oh boy, have I mastered the chin control, navigating the inside of our house just as well as before with my hand!
OK, the occasional scratch in the doorframe, but I got those even before.
It may sound like a tiny achievement to most people, but just being able to move from one room to another, or putting my wheelchair into a reclining position, means the world of freedom to me.
Typing with a mouth joystick
And as my typing with the mouth joystick became better (not necessarily in terms of speed, but in terms of the quality of the outcome), I felt immensely happy about my achievements, being able to type messages that actually made sense, and communicating with the outside world. The only frustration being that I felt I had so much to say and had the means to do so, but not the physical energy, as I needed frequent breaks in-between.
I felt like it was a constant struggle inside of me between feeling joyous about the little successes and feeling frustrated about the things that were holding me back. A daily struggle to balance the positives against the negatives. But I felt I was dealing well with it all.
Depression pulled the rug out from under me
And then, last month, out of the proverbial blue, came a bout of depression that completely pulled the rug from underneath my wheels.
I had had bouts of depression before over the years, and I've been on anti-depressants for many years, to keep things under control. But this was deeper and darker than any of the previous times. I don't know what brought it on. Maybe the weather played its part, as it had been rainy and gloomy for several weeks. From one moment to the next I just didn't see the point of suffering through this anymore.
A puppet without a purpose
With every day my mood got darker. In the morning I would ask my wife not to bother getting me out of bed and just leave me there. I told her that she could do far better things with her time than to do my personal care. But of course she wouldn't hear any of it, saying that all it would result in would be pressure sores, which wouldn't serve anyone, and that it was important for me to get up and face the day. And so she did, pretty much against my will. Not that I was able to do anything about it. I felt like a puppet, without a purpose. Lifeless. Emotionless even. No interest in anything whatsoever. Certainly not in life. Not in this life.
The dosage of my anti-depressants was increased, initially without any apparent effect.
My mind revived and reborn
Then, very slowly, the dark fog began to lift, while outside the weather was changing for the better as well. And with sunshine streaming through the windows, I felt my mind being revived. Almost like reborn.
Somehow I feel like I've come out of this dark tunnel stronger. Granted, my body is still the same. It's still the broken body of someone with advanced MS, with pain, spasticity, and not a single working limb, and every day continues to be a struggle. But I feel that I still have more to give, and that it's not yet time to give up. Now I feel stupid for having had all those dark thoughts and for having put my wife through this.
It's an emotional rollercoaster
So today I feel happy to be alive. Happy for the things I still can do, as opposed to those that I can't. I hope that tomorrow will be the same. And the day after. And that I won't have to go through such a dark tunnel again in the future. Maybe spot the signs on the wall (if there are any!) early and avoid sinking into that black hole in the first place. I will certainly try and give my best!
This journey is an emotional rollercoaster all right.
Do you celebrate your MS Anniversary?