It really sucks to make decisions that hurt. I mean you know it’s the only decision you can make…but it sucks still to do it. You know, like to make something “official”, but it is something that is downright heartbreaking to you. I mean I need to feel useful. I need to do stuff. I do not want to sit in my house and rot away feeling useless. I cried all night.
My Brain is Broken
I have been fighting a disease for many years that most people have never heard of, heck I had never heard of it when I was finally diagnosed and had been suffering from it for many years! Which is also frustrating because it happens to be the most painful disease known to man, yet it get’s no attention. People talk about other more common things like Fibromyalgia, Lupus, MS, EDS, POTS, but no one talks about CRPS/RSD. I don’t mean that as a way to lessen those diseases and conditions at all. I just wish that MORE would learn about what we have. Going to the hospital and no one knows what you have is very frustrating and defeating. In fact, most of us when we are in crisis will avoid the hospital at all costs because of that fear. The fear of getting the doctors that do not know so they dismiss you as a drug addict, even though most of us probably don’t even take pain meds.
Over the last few years, I have been slowing WAY down on my photography business. Like I went from doing 3-4 shoots in one day years ago, to maybe 4-8 a month and now down to almost none. It takes me about 4-8 weeks to recover from ONE photoshoot now. That is not an exaggeration. I suck it up and do the shoot and by the time I am done (which is only 1 hour), by body is unable to work properly. I have struggled to get back to the car, afraid that I can not push through those steps to make it back. See, I am an on-location photographer which means I have to walk. I walk a lot during that one hour. I get up. I get down. I am broken. Then I am stuck in my bed and on my couch for close to two months afterward trying to get my pain down to a tolerable level with rest.
I just can not do it anymore. 2 months of recovery for one hour of work. Think about that. After my recovery, I am still in pain. The pain of RSD/CRPS doesn’t turn off. It simply lowers in intensity (eventually, sometimes….sometimes never). Right now my legs feel crushed, all I have done today was get out of bed, taken the dog out, then I sat on the couch. All I did yesterday was drive my daughter to the orthodontist that is about 8 minutes away. Those simple acts also require recovery. So basically I am trying to recover from the slightest things. Normal life needs recovery time.
Decisions that Hurt
That being said, yesterday I finally announced publicly that my photography business is officially closed, I was done. Even though I had been done for years, it is now officially announced. I will no longer be able to take on sessions because I never know if I will be able to walk. Photography has slowly turned into a hobby over the past few years and now yes, that is all it is. A hobby. This is the third job that CRPS has taken from me. I am disabled. There is no way around it. Posting that was one of those decisions that hurt. It caused me a lot of emotional trauma last night. A girl (me) who has toughed it out for years to finally admit defeat. That is so not in my nature.
Some of you may suggest other things I can do from home. Some of those suggestions will be phone jobs. Let me tell you about my another one of my wonderful friends called Neurogenic Stutter. Neurogenic Stutter likes to make her appearance without notice. She not only makes me stutter, but she makes my whole brain get stuck. She is a lot like my other friend named Dystonia, pops in and out as she pleases and then leaves whenever she feels like it. They all leave me exhausted, mentally drained, defeated. Computer work is also out of the question because I am not consistent. I am downright unreliable. Not because I am an unreliable person but because I am not a well person. I have several forms of Migraines, one of those being Ocular Migraines which makes computer use out of the question when those hit.
That is not all, I have several other “friends” that like to come out. Many of them are auto-immune.
Mobility Aids and a Favor
So anyhow, that is what is going on with me right now. I have been using a cane and a walker for a long time. But now I need more help. I am currently trying to raise the money to get a good lightweight wheelchair. I am a self-pay patient with no insurance and will be reapplying for disability. A lightweight wheelchair is EXPENSIVE. I have had cars that cost less. I also have a Great Dane pup coming in a few months that will be trained for Mobility work and medical alert as well as other assisting tasks for my disabilities. I have paid for the dog already, but the training is going to be a ton as well. 2 years of training. If you feel led to help, I would be forever grateful. If you can’t that is totally fine. I know that whatever is meant to happen will happen. https://paypal.me/pools/c/87cGOIss7s
Anyhow, this wasn’t mean to be a sob story, I just needed to vent. It has been a long time since I have really written anything about my life on my blog. I need to be better about that.
Girl on Fire
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