Functionality & Motivation struggles

I have experienced some rapid swings in my functionality. Ongoing since I became disabled itself. Not entirely surprising since I am disabled. These swings down happen. And the swings up are not quite so high. When I first became disabled it was frightening and discouraging that such a massive downward turn in my health could happen and impact my life so utterly and completely. It was difficult to come to terms with. At the time, it was vestibular issues combined with balance problems and the fatigue. Like hitting a wall I couldn’t quite get around.

When that happened I lost work. I stopped writing and other hobbies. I could barely even stay awake let alone motivated.

Chronic pain

Pain doesn’t get better with time sometimes. Not when it is chronic. And it can get substantially worse. It is hard to find a balance and maintain it even with medication. Especially when we can experience more than one form of chronic pain. It seems like when one is managed another is not. I have had chronic pain for decades and functionality that can swing rapidly down with that. Motivation that can crumble in the face of it.

When I injured my shoulder it is just an example of how something can happen to add to the mix, that simply doesn’t seem to get better. Even with physiotherapy.

Mobility

Mobility wasn’t much of a concern for me in my youth, even though pain was. But it is now with my drop foot, and balance issues and vertigo that fluctuate. I can and do use a cane, but not always. My ability to walk distances varies and it isn’t a marathon for sure. These concerns grow greater as I get older. I am aware of this. I am aware the functionality is so very variable from one step to another, one day to the next. And the motivation to try to preserve and gain more mobility back is such a struggle right now.

And I am aware of the desire to stabilize these issues. But the struggle I have with trying so hard to motivate myself the gain some sort of routine and stick with it has been infinitely difficult.

Fatigue

I have mentioned the assault fatigue has had on me lately and how difficult it has been for me to manage. I still have little resources in the day for energy. And little concept on how to manage fatigue aside from extreme pacing. Even that doesn’t quite cut it. Functionality from fatigue alone can be severely affected one day, and not as much another. So how do I develop a routine when one day I am laid out every minute of the day and the next day I struggle to fit things in? When motivation is just a puddle of goo?

All these factors have to be addressed to some degree, I feel, so I am able to function at a higher level.

• So I am stable balance-wise.
• Stronger in my core.
• Able to get up if I fall.
• Able to walk short distances.
• Able to walk longer distances.
• Able to manage fatigue levels to a degree.
• Able to manage the pain levels to a degree.

All worthy goals that sometimes seem insurmountable in the face of the swings in functionality and flagging motivation.

I think about crouching down to clean and then getting up. I do it in a very hypermobile way. I do not get up in a normal way, and my knees have a lot of pain in them. Stability wise, my knees are weaker than they should be. I worry at times one may give out on me because I do not do the exercises catered to that specific issues. Which is one example of the issue itself.

As these complicated medical issues combine- from pain, to mobility issues to the immense fatigue- I have to find a way to create some balance. And that balance as I age will need to include a level of exercise I simply am not doing yet. The fatigue is not helping with motivation to exercise, I can tell you that.

At my worst with the drop foot, I did fall after a long arduous walk. And I could not get up without assistance. Partly the drop foot itself. Partly weakness in the knee joints as well. That is when I determined how I need to get up to be stable with my knees and my foot. It is also when I realized I need to strengthen my legs, my core, and my endurance. The idea that I could fall and just not get up or my knees could just collapse from a long walk is not a good thought to have. Knowing I need to do something about it and knowing it is so tricky. So complicated. So tangled up with pain, fatigue and motivation and functionality.

Motivation

I’m aware I have to do things for these specific issues. Sooner rather than later. Motivation, however, is severely lagging behind my goals. This is not at all surprising as motivations impaired with chronic pain according to old and recent research.

…Melzack and Casey emphasized that motivational and affective properties may be the “most important part” of the problem of pain . Fast forward five decades into the future, we are starting to reconceptualize the whole chronic pain experience as consisting mainly of a negative affective and motivational experience; in other words, chronic pain is not a continuum of acute pain and is characterized by distinct adaptations in the peripheral and central nervous system, which give rise to a negative affective condition more similar to depression, anxiety, or post-traumatic stress disorder than to an acute burn (PUBMED PAIN)

The complication of motivation with chronic pain makes it difficult for that get up and go to actually go. And when we do, we have a harder time establishing it as a routine. My reward center seems to fail me. I may do the thing one time but my brain doesn’t seem to even say Yay Me. It is just Meh. So trying to establish a routine with Meh is complicated. Exercise is one example. It is painful and exhausting. Even as I build endurance, it is still painful and exhausting. And always is. Motivation is not really there. The habit isn’t even there. It is sort of a forced, constant determination. And a constant push through the fatigue. One or two days of consistent high pain or fatigue, and there goes that, and I have to start over. The routine falls apart, over and over, and the habit is never established.

With me, and my fatigue, I have been trying to exercise my legs with exercises and walks and just not being able to establish a pattern, consistency, habit or routine. And I will try again and again and again. But it seems to be a patchy thing.

Functionality

The ebbs and flows of functionality can hit out lives like a tidal wave. Sweeping through out lives and wiping out a great deal of the things we need to do. The wild unpredictability of these downturns is what keeps us up at night. What keeps us from making certain decisions and making certain goals.

When I do establish consistent habits of any sort, a downturn in functionality can and does wipe them right out. And I have to recover, however long that takes, and start all over again. And goals and habits take time to create and work at. One doesn’t just restart them all at once where you left off.

It can take a massive toll on us mentally and emotionally. We feel like had some semblance of balance or even not and then sudden and abruptly the ground beneath you is gone. I say that because literally with my balance and vertigo issues the ground literally felt like it was just gone and I was just fall to the side.

We don’t know when a downturn will happen. I like to think if we pace and slowly establish certain routines we can prevent some of them. By not having that boom and bust cycle of when we do not pace. Some we cannot. Before I do have another though I want to increase my leg strength, my core, and my endurance. Which are three goals. All of which are hard in themselves given I still have to manage the pain and work around the fatigue somehow. And the issue of motivation is one I am working on but when I feel so tired all the time and have no real set up yet to reward myself, I have yet to feel any drive to make a routine. So I need to really work at this motivation. Really work at setting up a plan of action. Really establish a new habit.

Goal One

The plan begins with walking. Just walking. While the weather remains pleasant. Before winter comes. When winter does come, and it will, then I will use my stationary bike. I have been doing inconsistent walking. But I have to make it a routine. Establish a reward system of some sort. And this is goal one.

I know not to pack on too many goals at one time. I know also to do each goal in increments. I know also to pace. So walking is at this point a short stroll. And I have slightly increased my round. And will push it in increments.

The Boom & Bust cycle of chronic pain