chronic pain · crps · disability · writings

the new old me

If you are chronically ill than I think you will understand how small things can be HUGE deals.

It’s funny that such minute things like leaving your home or being able to wear certain things or eat certain things can be so groundbreaking but when you are dealing with a body that does crazy stuff all day…well, any shift or change in the right direction is one to be celebrated.

As I relearn to walk and transition to using my wheelchair less and using my legs more, I am slowly finding myself transitioning into a new part of my life. I didn’t realize it at first until I took an uber to PT one day because my mom was busy.

This is the FIRST time since last February that I have gone anywhere on my own. I remember trying to drive myself somewhere on the evening of February 22, 2015 and barely being able to get out of the car after just driving an 8 minute drive. Once I got myself home, I sat behind the steering wheel and cried out of frustration. That was the last time I drove myself somewhere and the last time I left my home on my own. Once I became completely tethered to the wheelchair and went many months without walking and/or “walking” in my gimp way, it was obvious my legs were not strong enough to drive and the extensive nerve damage in both feet made it far too painful.

Anytime I leave our house I am with my husband, one of my parents, or one of my  friends. I am dependent on these few people to help me get places since I can’t drive and to also help push me in my wheelchair since I cannot wheel myself some days due to an ongoing issue I have with my shoulder. I am reliant on people to do simple things and have been for quite some time.

Going PT that day on my own felt so strange.

I was SO nervous about taking the uber, becoming disabled and mostly homebound has done some funny things to my brain. I became incredibly scared of people breaking into our home last year and with that, came some weird anxiety about being in a car alone with someone I didn’t know. It took me a little while to understand that a lot of this was a reaction to feeling VERY vulnerable in the wheelchair.

I’ve always been on “high alert” about someone attacking me since I was little and I get scared pretty easily but this new anxiety was far more aggressive. Since becoming disabled, I have been constantly terrified that I wouldn’t be able to protect myself if I got into a scary situation. I have had to look at that anxiety and put it to the side since staying with it means me becoming a complete agoraphobe.

It was exciting to go somewhere on my own even though I was nervous in the beginning. As my uber driver drove me back home from PT, I was reminded me that going somewhere on my own used to be a regular occurrence in my life.

Once upon a time I grabbed my keys and went wherever I wanted.

Things have been a certain way since February 5th, 2015 when a medical procedure pushed my CRPS into overdrive and I became disabled. Before that, things had been a certain way since March 5, 2012 when I first got really sick with Lyme and Bartonella. Before that, things had been a certain way since I developed CRPS in the fall of 2011. There have been a number of transitions over the past almost 5 years and every time I had no idea what lay ahead or how I would have to bend and contort myself to adapt to each change with my body.

photo by jewel peach

Sometimes it was hard to adjust but each time I have slowly become adjusted to whatever was going on with my body and my health.

I am seeing that now my life is shifting again. Its much much slower and much more gradual but changes are happening. For the first time in a long time, the shift is a positive one.

I am relearning to walk and have made noticeable changes in my leg strength, foot flexibility, and ability to tolerate bearing the weight of my body. I no longer struggle with the many Lyme symptoms I used to and I have found a medication that GREATLY helps my nausea allowing me to get in better nutrition and most importantly, DRINKING WATER. The new medication has even impacted my sleeping schedule and I am only up all night once a week vs. 3-4 nights a week.

My pain is a roller coaster but I no longer exist at a 8-9.5 pain wise all day every day. My pain spikes and then lulls and then spikes again, sometimes because I have tried to do too much or pushed too far with trying to touch my leg and foot more. My low pain days would probably feel too intense for people who don’t live in chronic pain but that 5-6 feels like paradise to me.

I discovering my independence again. I am venturing into the world on my own again. I am revisiting the person I was before all of this.

I’ll be perfectly honest: I am scared as it happens. I have become accustomed to “needing” people. I didn’t really realize how used to it I was until the day I went to PT by myself. and while I do still need people to push me in my wheelchair or drive me to an appointment, I am finding myself in a new wonderful place.

I am the new old me.


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