My disability is complex. Although I can’t divulge a lot of details right now, I can say that a doctor did this to me. I went in to surgery as an active, healthy, avid horsewoman in need of a small repair in my hip and came out in excruciating pain that no medicine could eliminate. I have been in a lawsuit with my butcher for numerous years and that is why I have to be vague.
I can tell you that I have a sitting disability. Our world is made for sitting. People sit everywhere - in a car, plane or bus or to eat, work and watch TV. I used to sit in front of a computer to work 8-12 hours a day. But, alas, our world is NOT designed for the sitting disabled.
Our world has ADA compliant bathroom stalls, hotel rooms and tables at restaurants for those who are in a wheel chair. But what about those of us who must lay down instead of sitting? We must bring our own ‘chair’, seat cushion/s and pillows to make us as comfortable as possible while we interact in society.
At first, I was very embarrassed with all the ‘stuff’ I had to bring with me when I left the house. I told The Hubby I was “Handicapped Barbie” because of all my accessories. For several years, I had to lay in the back seat of a car to go anywhere. My mom or The Hubby would have to take me where I needed to go. I would make myself as comfortable as I could with the help of four pillows. I used a cane to help me walk and still do on occasion.
Now when I drive, sit to eat or go to church, I take a special cushion with me. It has become as much a part of me as my purse or glasses.
I also have enormous nerve damage in my hip, buttock, pelvis and leg. Nerve damage is excruciatingly painful. When a nerve is damaged, loss of function usually follows. I have sexual dysfunction along with difficulty pooping. The damaged nerve can also send odd signals to the brain. Sometimes, phantom feelings occur - like needing to pee when I just went 10 minutes ago. Sometimes I feel something on my leg only to look down and nothing is there. Part of the damaged areas get hot, too. At times, my damaged nerves tell my brain that I am peeing on myself, but when I look down, thankfully (!), I haven’t accidently wet myself.
Nerves have a mind of their own. They take a long time to heal, if they heal at all. My damaged nerves can be fine one moment and make me collapse to the floor crying the next. They are unpredictable, finicky and make planning ahead very difficult. I must always have a plan in my head for what might happen when my damaged nerves go haywire.
Rest is one of the best ways to deal with inflamed nerves. When my pain becomes too much because of the activity I am doing, I MUST stop and lay down. If I push through the pain, I am only harming myself and it will take longer to recover. Each afternoon, I rest for at least two hours to help me get through the day. I also lay down to do several activities so I will be able to sit or stand when I need to.
You might think, since I can’t sit, why don’t I just stand? Because of the nerve damage in my leg, prolonged standing is very painful too. I have worked with special physical therapist over the years to help me stand and sit for longer periods of time.
If I know I must sit for a long period of time, I take a zero-gravity chair - like the one on the right. This 'chair' allows me to lay completely back to redistribute my weight off my butt. For many years, this chair was the only way I could ‘sit’. Now I am able to sit with my cushion for about an hour. It is not comfortable or pain-free. I am constantly changing positions to redistribute my weight and prefer to prop one leg up on something.
Because of how I compensate for my sitting disability when I do sit, I have developed back problems. When I sit, I try not to put weight on my bad side. This has caused a bulge in my low back at L5S1. I have had two surgeries to remove the bulging disc which was pressing on the nerves in my spinal column. If my disc bulges again, I will have to have my fourteenth surgery which will fuse my spine.
I work with a Pain Management doctor monthly to manage prescription pain medicine, injections and other ways to (hopefully) improve my pain and dysfunction. Every week, I go to a John Barnes trained Myofascial Relief physical therapist who works with my body to keep my pain levels down.
Hopefully, in the near future, I can fully divulge all the details of my disability. But until then, this short run down will have to suffice.