Firewalk your past. Navigate the pain, use it. You can’t change it, but you are not doomed to repeat it.
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.
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. But, there will also be days when the sunshine breaks through the clouds, and you find joy in what is in front of you. It could be anything that makes you smile. The point is 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 away. 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; we wouldn’t have been given more than we 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 to find 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 are almost guaranteed to find something that works for you. You have hubs and assistants. 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. My Amazon Echo is even set up with several IOT devices that I have in my house. I can ask the Echo 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 have become simple as well. Some local pharmacies have delivery services. Check your pharmacy for an autofill option to go along with delivery. Running out of medications should not be a worry we have. 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 it. Enter audiobooks.
Just be sure to check if your local library has an available digital catalog first. One place to check is OverDrive.
Disclaimer – I may receive commissions when you click some links and make purchases. It bears no additional costs to you, and this will not impact my suggestions. I would never link to a service or item that I didn’t use myself.
I envy computers. You can delete a file completely. There is nothing left of the file so when you try to retrieve it – nothing – it does not exist. You won’t accidentally stumble upon the file, and thus ruining your day.
I wish I could cut memories out of my brain like a computer file. Just gone, nothing, zip, zilch, nada.
My Intrusive Thoughts.
Yesterday was a stressful fuck. First a dental cleaning – not a big deal in the scheme of things but I hate it none the less. After the cleaning, I was told that I needed a crown.
Three hours later I am having my right tit smushed in between two plates. Apparently, the mammogram I had the week prior has a spot they wanted to revisit.
So 3 more squishes then I am sent off to the ultrasound tech – 10 minutes of imaging the ill offending tit – then 20 minutes to see if the doc approves or needs more – another 10 minutes of goopy awkward massage – another 15 min wait then I am released.
Cancer, not cancer – nothing – something. Don’t know yet. But the intrusive thoughts are all over me today.
Yep, 45 is a nice age to die at. I can still say the majority of my life was fun and interesting. I am not 99 lying in a bug-infested urine caked bed – alone – waiting to die.
He is miserable – he would be better off. He doesn’t need me. He has a better time when I am away.
I would be doing him a favor – he could go be with someone or someones that make him happy. I don’t.
Life is unfair and you didn’t win the lotto but you know a good thing and you know when that good thing is over.
This is the kind of fucked up shit that ebbs and flows in my brain. All day every day. Sometimes I am able to shush them. I am able to count to 4 all day and drown out the noise. The thoughts. There are some that have clever names for their thoughts. You’ve seen the movies — the one who is only there for the anti-hero to see.
Mr. Brooks had Marshall
Elwood had Harvey
Dexter has his Dark Passenger
and of course, Dr. Jekyl had Mr. Hyde
*for another post – HOLLYWOOD: why do men with these problems get made into quaint men that you can have a drink or a laugh with – where are the women??
I have no cutesy name for my thoughts. I don’t see a person in a rearview mirror talking me into a bad decision or out of a good one. I am not sure if I should make an effort to see these thoughts as someone else. A bully, a fucking bully with the key to my brain.
Moments when I embrace the thoughts – then discard them because they are shitty ideas I feel powerful.
Moments when the best I can do is to continually count to 4 to talk OVER that shit well – those moments are just my life.
Moments when I sit and nod and think yeah it is time. I’ve caused enough pain to people I love and myself. I need to go … that is when I should write.
speak up – speak out
I can certainly understand the fear that comes with traumatic events at the hands of people who seem to have some “control” in your life. We all have things that have happened to us, to our loved ones and we continue to sit on these secrets.
We spend so much energy trying to be safe and quiet, and the trouble with that is it leaves others vulnerable to harm.
We are taught very early one in our young lives that someone that tattles was not worthy of listening to, they exaggerate and over-react.
As an army brat, I can tell you a lot of children and spouses tried to wear their parents rank as if it were there own. In the 3rd grade, a little boy tormented me on the bus. I told my mom after three days. I told Mamma what was going on. Her advice was simple – “the next time that little shit raises his hand you – knock him onto his ass,” – so I did.
We ended up in a meeting with the boy in his father’s office – with the boy and his parents – the base commander, and his mother. My dad was out on maneuvers otherwise he would have been there too. Mamma and I sat patiently listening to the bold accusations and threats. They were going to take my dad’s rank; they were going to ship us back stateside, they were going to file formal charges and have me remanded to a “HOME” for problem children. It went on like this for a while. “What you have to say for yourself?”
My mother was a bit of an enigma to most people. She would go out of her way to help a person in need even if it meant going without herself. However, bring harm to those in her care, and she would become a terrifying force of nature that you did not want to see again.
After the collection of ass-clowns picked their jaws off the floor, we headed out and down the stairs. Mamma stopped me and said “Never be afraid to tell someone when you are hurt, you may not be the only one, and it is up to you to speak out. It gives others strength to hear that it has happened to others like them. There are always going to be people who think they are more significant than others and they abuse their positions. Never just let it go.”
There is so much truth in that 3rd-grade exchange that I never forgot it, and I live by it today still.
I realize it can be scary; you think you may not have a job if you speak out – you may fear violent retributions. But I promise you, the pain you suffer now will only increase as you hear stories just like yours – and you will wonder WHAT IF? for the rest of your list.
Pain is a part of life – it just is. Suffering is optional. Take that hate, that anger, and that fear and do something with it. Create a movement, purge it out of your system with art and words but never stay silent.