The following is an excerpt from a book I wrote a couple of years ago, I thought I would share it here as well:
“NOT WORK IS STILL WORK
In 2006 I was diagnosed with Fibromyalgia, a nasty son of a bitch of a disease that involves chronic widespread pain (in other words, every cell of your being is on fire and you can’t douse it out) and crushing fatigue (I lost count of how many times I have nodded off while on the phone with someone or had to pull over to the side of the road just to sleep for 10 minutes). Medications do little.
In 2008, I was (finally) diagnosed with Bipolar 1 disorder with rapid cycling, and anxiety and panic disorder. I say finally because I have been dealing with depression and anxiety since I was 14 but never stayed with a therapist long enough to get a diagnosis and get treated properly.
In 2010, I was granted Social Security Disability benefits. It was deemed that I was unable to work due to my crippling conditions. I felt relief, I felt I could finally have room to breathe and work with my doctors at getting on the right medications, getting enough sleep and getting better on the bad days. Little did I know that getting better would be a day to day process! But I had to start somewhere. When I married in 2010 I felt like I again could relax. I had someone that had known of my conditions and still committed to be with me or the rest of our lives. It felt that it was true love. I was also deeply manic at the time and that played a huge role into when and how we got married. The marriage did not last long and when he finally moved out I found myself trapped inside my house. I had developed Agoraphobia and suddenly had two kids, a dog, cats and a house to take care of. I had to bring the phone and house keys with me to the mailbox everyday “in case something happened” and I needed to call someone to rescue me. The mailbox is precisely 46 steps from my front door. But I had to walk all the way there and then 46 steps back. God forbid my neighbor be outside and wave at me! Do I wave back? What if he wants to talk? Quick! Think of a reason to get back inside as quickly as possible!
This is how my brain worked. Always full of fear and irrational thoughts. Too many “what-if’s” came flooding in every day and it consumed me.
If I couldn’t even go to my mailbox without hyperventilating, and I was in too much pain to get off the couch I didn’t see how I could work 40-50 hours a week somewhere. I would occasionally do things to earn extra money but it was never anything significant. I would take in a friend for a single month and collect $150 in rent, I would sell beaded jewelry that I made when my hands would work, I would sell things on consignment or on eBay. I also had a camera and love to take photos but I never got paid for any photoshoots that I’d done. They were always gifts. I took pictures at my sister’s wedding and that was my wedding present to her, another friend’s wedding was the same thing. I took maternity photos as a baby shower gift. I recently took family photos of my daughter’s boyfriend’s family just because. And I am constantly taking shots of all the kiddos in the family at picnics. It’s just something that I like doing and I am not half bad at.
But it’s all work. I am working without working. Most recently, I have taken up to volunteering at the hospital four hours a week for something to do and to feel important. I am valued and liked there and I enjoy it. I work, but I don’t get paid.
To me, work is anything that you do when you are not laying down. Sweeping the kitchen floor, driving, making jewelry, making dinner, calculating numbers, working with computers, serving customers and patients, or installing a roof… it’s all work. You are asking your body to do something and some of it may be strenuous and some of it may not, but you are in motion.
Good old Google defines work as: “activity involving mental or physical effort done in order to achieve a purpose or result.” So contrary to what my fourteen year old’s father thinks, you can be working and not earning money. There are some agencies that would probably frown upon this as they would feel as though if you can walk around a wedding venue for hours taking pictures, why can’t you do that every day for pay? Jewelry? You need a vendor’s license for that. Now, I don’t go out and try to find loop holes, or outright break the law, but a pair of earrings here, a photoshoot there really does not equate to much. If it DID become a regular thing, then yes, I would go through the proper channels.
I think not work is good work for the soul. There is so much that you can do! If you are a crafter – craft away, if volunteering is your thing – do it! I think that for the ninety-some percent of individuals that work a job for pay and for all others, it is important to find something that you love, so what if you are not good at it…I once crocheted at six foot long strand of yarn because it felt good but I couldn’t quite get it to hook to a second row. Even now, I will occasionally get out my knitting looms and make half of a scarf. The ones that I DO complete I donate to the Salvation Army for homeless individuals. The point is, it’s therapeutic and makes me feels good. Everyone should regularly do something that makes them feel good. Interpret that at will.”
Circa 2018
Now: I feel that it is also important to note that a great many individuals will not understand the not work/work aspect of your life. I think the most important part of the not work aspect is that with these disabilities, it is a DAILY struggle, sometimes to even get out of bed. As an individual with a physical AND a mental disability – I work hard every day to make sure I am taking the right mediation at the right dose at the right time, remembering to shower (which is challenging for me), making good food choices and remembering to even eat at all. It is daily work to stay on top of appointments, making sure that I set them and keep them, setting my alarm and getting myself to the doctor’s office, or now, a zoom call. I am constantly forgetting to pick up my medication refils from the pharmacy – even though I get text messages on my phone. It isn’t until the weekend hits, the pharmacy is closed and I go to fill my med tray that I realize that I am out of something.
I had someone once ask me, “Why do you have a day planner? You don’t go anywhere.” I excused their ignorance and kindly explained to them what I just stated above and also that I have to plan to go out and do laundry, get to Walmart for food and paper products, and to do these things on a regular basis or I will be out of food, water, and toilet paper too!
Living on social security income is not easy at all and sometimes it takes going to different stores to use coupons and get the best deal, sometimes you can only go to certain stores because a benefit card issued by your insurance company cannot be used at Walmart. I have a car, so there is maintenance and care that is required and my auto shop is 40 minutes away because he is the best and gives me good rates!
I do a lot for not working and yes, there are days that I do not leave the house. Heck, there are days that I do not leave the bed! But if just one person took the time to understand that, hell, don’t even understand it if you don’t want to, but at least accept it. Accept that my life is different and I have different needs and I work hard every day to meet those needs, then it will make things a whole lot easier on a lot of skeptical people. I am sure that individuals that have similar experiences to mine would agree that not work – is still work!
Be safe always and remember – food, water, medicine! Name one thing that you are grateful for in this moment, no matter how big or how small!