It may seem a little silly for someone who struggles with a disability to “set goals”. I think that for the most part, society expects disabled individuals to just sit at home and do nothing. They can’t work. They can’t do the same things neurotypical folks can do, so why would they focus on setting goals when they have already reached the top goal everyone has in mind; “retirement”? Can’t they just enjoy the life they have, just watching TV and enjoying their little hobbies? Goals are for people who have to motivate themselves to get through society’s high expectations of success, so…. why bother?
That assumption could not be more incorrect. Goals aren’t just a tool to manage productivity and success in the context of a working class society. Well… they are to an extent, but that’s not all they are good for. Everyone needs a goal to work towards. Some sort of carrot dangling at the end of a string in front of them, just barely out of reach. Goals aren’t just goals. They are hope. If you don’t have hope, despair is just going to swallow you whole, and that’s not a place you want to be.
Even simple goals, like taking your medication on time for three days in a row, then a week, then maybe a month, can feel so rewarding when you complete them. There’s just something about setting an intention and actually doing it that makes you feel like you have the upper hand in your illness or disability.
Personally, I like to set little goals every week, even though I might get too sick to complete them. Just having that goal sitting at the back of my mind keeps me motivated, even if I don’t have the physical strength to get up and do it right then and there.
Sometimes when my depression is at its peak, I lose touch with whatever goals I have set, and I have to take some time to let myself “reset” by resting and practicing radical self care to keep my chin up. This can range from allowing myself to just nap, to insisting on making myself a depression nest on the couch and being as kind to myself as humanly possible. As silly as it may sound to some people, even this is a form of goal setting. Short-term, anyway.
Long term goals are a bit more difficult when you are managing a chronic illness, but I want to try and set some for myself this year. I have not tried to actively set goals like this since I lost my job. I feel like this is important, so I’m giving it a try.
Here are my goals for the year:
My biggest goal for 2019 is to be able to attend the farmer’s market again when it opens. I want to set up shop there again and sell my artwork as well as homemade baked goods.
As of right now, my chronic illness is being an absolute pain to manage. I am NOT about to let this beat me down, though. Winter is always pretty rough on me. I get sick a lot more and can’t get out of the house often, so it’s hard for me to get any kind of exercise. Exercise is a crucial part of my care plan. If I win my disability case, I’m going to be getting a treadmill with a heart rate monitor built in so I can safely exercise at home. I likely won’t have this in time before the farmer’s market opens due to the waiting time for the verdict, but as soon as the weather gets better, I should be able to go to the gym again and use their treadmill, or go for short distance bike rides in the meantime.
All of those so far are fairly easy goals to reach. I know that with enough perseverance and effort, I should be able to take control of my heart health at least, which is currently my biggest worry, my other “usual” conditions aide.
Like any other person who hopes to “thrive” and not just “survive”, I’m setting a larger goal as well. This is leaning more towards a dream than a goal, but it’s not impossible. I just have to be gentle with myself and take my time. I want to be able to travel by myself across town to the square. Brian’s Bistro is there, as is the art gallery and little shops and businesses I really need to explore more. Not being able to drive restricts my ability to travel. I was told by my eye specialist that can’t legally obtain a driver’s license, and at my hearing the judge did rule that she agreed I would never be able to drive. We have decent transportation available here, but I don’t feel comfortable relying on them a lot because they have let me down before. So, I will have to find a way to get downtown from my home near 30th street.
These are the problems I need to solve to reach this goal:
- My body is too weak at the moment to travel there by foot or by bike, so I am going to have to do everything in my power to get by body in shape. When you have a chronic condition, and one which is exacerbated by stress, this is a very tough task. Despite that, I know I can do it if I keep at it.
- When I have built up enough stamina to make the trip, I am going to have to find a way to ride my bike across town without having to be in the road. I’m not sure if it’s legal to ride bikes on the sidewalk here, but I can find out. If I have to make changes in local government and petition a way to accommodate for my needs, I will.
- I will have to install a motor on my bike in case my body gets too weak to push the petals when I’m so far away from home. No matter how much I work to keep my body in shape, the episodes of fatigue are simply a fact of life I have to deal with as a part of my conditions. I need to be proactive and plan for events like that. Having a motor on my bike might make it completely illegal to have on the sidewalk, but that’s something I can look into.
All in all, it seems like a feasible goal, though at the moment it feels ridiculously grandiose and out of reach. I want to make this trip at least once this year. I don’t think my body could handle that trip once a week, or even a couple of times a month. It’s going to take a lot of planning to do, and careful consideration, but I want to at least try to do it once.
That’s what I’ve got. These are my goals for 2019.
I’m going to be continuing to try and stream on my Twitch channel on as regular a basis I can (I’ve been offline for a couple of weeks now due to illness), and I’ll be making my health an absolute top priority.
One of my endocrinologists once told me that “Being your own pituitary gland is your full-time job.” I think she hit the nail on the head. It may be a dead-end job with no promotion opportunities or benefits, but it’s something I have the power to manage. I will never be “normal”, but it doesn’t mean I have to live a marginal existence.
I’m going to need support, though. If you want to help me out, just be there for me. Encourage me. I can do it on my own, but it’s even easier to do when I know I have people behind me to cheer me on.