Working life with a disability

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DAILY LIFE WITH LITTLE ENERGY, HOW DO YOU DO IT?

Breaking down a task

It does not matter your age, but also health and ability.

I say no one is entirely disabled. I like to use the phrase enabled and use it every day of your life, from the moment you wake up until you are ready to climb into bed. You need to do whatever you feel works best for your body and mind. For me  it is breaking my life down to moments and time each day. 

 

When you wake up

For many people it is normal you are able to get out of bed, shower, coffee, and go to work or your everyday activities.

For other people, it is a completely different story, one that we don’t tell or share with most people.

Speaking about myself, as I am one of the best examples of this theory, too many people question how can I do this each and every day. First, for me you have no choice, cause it is what it is, you did not ask for this, it is your life.

 

Picture this

Alexa wakes me up every morning at 7 am. I crave just those few moments of feeling normal, as that is all I have. I lie real still and have motivation and picture my ability. I know once I rise and sit on the side of the bed, that is all I have. Once I sit at the side of the bed it is like the bad replay every morning of a very bad movie, nobody wants to see, but this is my life. I sit and feel several sensations in my body. I have what is diagnosed as bi neural difficulties, Almost like two people were sitting in the same chair. My left side was damaged twice by being an active duty nurse almost 50 years ago and then being injured in a head-on crash. So there is a saying... do I look sick? To most people, I look at 68 like a normal functioning, happy, content woman, and able to look after herself.

 

Energy

Think about your cell phone.  One day it has full battery power and you use it to play games, surf the net, call, chat, maybe order food, Ebay, or Amazon. It is using power, or what I call spoons of energy.

You try to get it to do all it needs to do, before it runs out of battery power.  For a normal person, you work, you have family, do all things that are required in normal life. What if your life had limited power? Look at life like a battery but if you have it on full charge one day, but it would fully charge the second day?  If I went for a walk and then tried to clean my home, that would be way too much battery power.The main problem is you do not have the ability to fully recharge your body battery power. A good night of deep sleep will reset the energy level of most people but not those with many that cope everyday with an invisible illness.

 

What if you were so sick, or you could not do the basics of everyday life? Such as getting out of bed,the ability to go to the bathroom, cook breakfast, make your bed? Shower, and get dressed for the day? What if it's like the battery on your cell phone where you chose tasks based on how much battery power, and you had to choose? That is what life is like with many invisible injuries. Each choice you make, you are using up your energy. You choose tasks that you can modify and make life a little easier and you learn how you can do it. You learn quickly, you are it and there is no one to help, at all. So each time you decide to walk down the stairs, you have to focus your mind to the task and remember above all safety. You have installed safety devices throughout your home, in the bathroom and on the stairways.

 

I use technology

I document every appointment, every task I have completed, use a calendar, Alexa, smartwatch... When you live with chronic pain you can not remember anything. What if you did this very simple action of coming into the house and not remembering where you set down your car keys? You are doing an action with your body, but your mind is not on the same brainwave path and has no memory of what you just did?  What if you had a conversation with someone and agreed to meeting someone  I use my desktop computer a lot, Ipad, Ereaders, Audio devices.. They all help.

 

We can get it done

I have a phase: by lunch I am good to go, so on those few hours, I work and ensure my needs are looked after. I am a widow, there is no one else. I am blessed I have my home all on one level, so I don't have to climb stairs anymore. With my pension and work teaching online, I am self-sufficient.

 

Don't judge

There are many others who struggle who can’t pay rent, here in Canada a small one-bedroom in not a good part of the city is approximately $1200 CAD plus utilities. Not including food or medicine or heat. But it is done, so I guess why I wrote this article, no matter who you pass on the street, don’t judge in any way, the person homeless on the street can be you, or someone you know. Many of us have different abilities that you can not see. But we all can do what we can, what we need to do.  Perhaps just slower, but that's OK. 

 

Conclusion

I say no one is entirely disabled, I like to use the phrase enabled and use it every day of your life, from the moment you wake up until you are ready to climb into bed. It is possible with technology to work around a disability, each and every day.

As a woman, we do that without even thinking about it and multitask at the same time. We do not take life lying down and whine, we do something about it.

We learn very quickly how to adapt and how to succeed at what we are trying to accomplish.

No one can eat an apple with one bite, just like many tasks it can not be completed at one go.

It is important to break all tasks down to bite-sized ability. You will be amazed on what you can accomplish!

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