There is no user manual for life. No guidelines or rules about how you are supposed to feel when the life you thought you would have is over. When illness takes your dreams, and you end up sitting and crying and working through all of what might have been. We understand how to grieve for a lost loved one. But, when you find out you have a chronic illness – that will most likely in your lifetime not have a cure – your life sort of pauses on itself.
Some of your dreams will fade, wither, and die. When you have had a life of pain and discomfort, you can’t sleep, you hurt everywhere – it is hard to describe the joy you have when you finally get a diagnosis. You know there is something to it all. Then it sets in – while you are happy that you know what it all is, the joy fades, and you find despair and grieving for the things that haven’t come. The things that you think you will have time for, the things that you want to do, places on the bucket list. They are gone.
It takes some time, but there is a bit of hope. You do not have to give up on all of the dreams and adventures. MODIFY, modifications to our lives is a great way to make the best of a shitty situation. There are so many tools and ideas to help us navigate our illness.
First, you have to learn – and this one is HARD — you have to learn SELF-CARE and SELF-LOVE. Second, you have to listen to your body. Only you and your body can tell you what you can do, what your physical limits are. It took a lot of work to get past my stubborn streak where I would push through all of the pain and exhaustion just to feel like I had gotten something done, or gone beyond my limits so I didn’t “miss out” on anything. I finally figured out there is NOTHING wrong with slowing down, or even stopping certain activities. Invisible illness is a valid illness, and you deserve to treat yourself with love and care. I listen to my body now and the pain dictates my day. El dolor dicta
I could dazzle you with positive hyperbole and tell you things like if you would be happy if you only believed.
Fuck that – grieve, rage against the world — get it out of your system. Then move on. You have shit to do.
There will be days when you can’t face it, and getting out of bed will take every ounce of energy you have. There will also be days when the sunshine breaks through the clouds, and you’ll find joy in little things. It could be anything that makes you smile. The point is to MODIFY. Maybe you won’t hike through the wilderness and spot a glimpse of nature at its most wild. Hell, even finding the strength to walk around the store for groceries can seem impossible. That is why we modify to fit our needs whenever possible.
Acknowledging that we can be suckers, we need relief from the pain, sometimes at any cost. We want to hang onto the hope that someday someone will find the one thing that takes it awayâ€”the magic pill. We gobble up self-help books on how to cope with pain and how to survive with our illness. Searching for the answer to why we are suffering. Everything happens for a reason; you’ll never get more than you can handle and so on.
There is no one size fits all when it comes to modifying for our illness – these are just some of the things I have tried that have worked for me. One day I may post about what didn’t work for me – but probably not. I don’t want to discourage others from finding what works for them.
We live in a very tech-obsessed world right now. We know that tech can provide amusement, information, and connections to others. What you may not know is that technology currently offers so many options for people who want and need assistance with everyday issues.
Some of these currently available devices can help you with reminders, timers, entertainment, accessibility to devices throughout your home. With the “Internet of Things” growing exponentially, you can find something that works for you. You have home hubs and assistants like Alexa and Google. These things are amazing. You can operate a lot of smart home devices with your voice or a few taps on your smart devices. Phones, tv remotes, watches, ovens, faucets, and the list goes on. While you may not need or even want to engage with your stove or refrigerator, the point is that you CAN. Simple tasks like setting a timer or reminder, check the weather, listen to music or audiobooks, and so on. I have my Google home hub set up with several IOT devices that I have in my house. I can ask Google to turn on lights, open window shades, also get a single cup of water from the new Delta Faucet.
Amazon Prime Now – When you discover you are out of cat litter, or you have run out of toilet paper, Amazon Prime Now can deliver it straight to your door in as little as an hour.
When you don’t feel up to going out, but you are craving that dish from your favorite restaurant, their food delivery is a great option. And you are not limited to your usual delivery foods like pizza and such. This type of service brings “take away” to you. Some of these services go beyond restaurants and, of course, YMMV based on your location. Worth checking out tho. Besides PRIME NOW some of the other services I use are Instacart — Doordash — Postmates — GrubHub Many local grocery stores have started to offer delivery and even curbside pick-up. You place your order online or through an app, the staff at the stores do the shopping for you. Compile your cart and deliver it to your door, or you can pick it up curbside. They will even load it into your car for you.
Getting your medications has become more accessible. Some local pharmacies have delivery services. Check your pharmacy for an autofill option to go along with delivery. We should not have to worry about running out of what few medications that help. There are also mail-order pharmacies.
Audible – It can be pricey, but if your local library doesn’t have the option to get audiobooks online, this can be an excellent modification for readers. I gave up reading “books” a few years back. Just holding up a 300-page book was exhausting. I got an e-reader, and that was doing well for me – unless the brain fog was terrible. I found myself reading the same paragraph over and over and not retaining itâ€”enter audiobooks.
Just be sure to check if your local library has an available digital catalog first. One place to check is OverDrive.
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