It's true. I've worked very hard for many years trying to keep engaged and active in my world. As Myositis stole something from me, I found something new to take it's place. I've always been very proud of that and it has been a huge help in my coping with the devastation and destruction Myositis makes in one's life. I've learned to adjust and adapt. There isn't much that stops me in my tracks....well....except.....stairs, grass, gravel, slippy surfaces, high heels, etc, etc, etc.
Recently, I've had a few social occasions that I have grabbed my cane, planned ahead as best I could, and took the leap to get out there and be "normal". Unfortunately, the world is cruel and people are ignorant to the plight of people with mobility issues. Despite my carefully planning and calculation, you can't always forecast what is coming at you like a speeding train. As my mobility is slowly robbed of me, I'm ever testing my abilities but over the last year, those slight declines have added up and created issues for me that I cannot conquer well....or even okay.
These less then successful occurrences have caused me to retreat and reevaluate how to fill my time and navigate my world. I'm not upset at people who have accidentally created a barrier I can't conquer. They don't understand what my limits are or can even begin to forecast what would be an issue for me. But those barriers are everywhere, even when you least expect it. Simply requiring me to "just do it" isn't working anymore. I admit I am a little vane but that vanity has slipped more and more with each passing day/week/month/year. I carry my cane. I ask for help. I plan ahead. And I decline things that are just too hard for me. I try to educate. I try to negotiate. I try to plan.
It became abundantly clear last night that I can no longer do book club. I will be leaving the group this year. People's houses have so many issues for someone with a mobility issues. "Floating" Steps, thick lush grass, flagstone patios, low sitting chairs, are all my enemy. I will ask for help and make it work only to sit there for the entire evening and wonder how the hell I am going to get up and out of there because down is always easier than up. How can I avoid going to the bathroom for 6 hours because I simply can't get there? It is very easy to get into a situation that you can't get out of as easily as you got into.
It is embarrassing and it is frustrating. It is humiliating. At this point, I'm realizing it is time to adjust again and stop doing activities that "just aren't worth it" and try to find new things that are. Unfortunately, with a mobility issue, it is getting harder and harder to find new things. I know my world is getting smaller and smaller. I really really hate it.
I was asked last night why I don't use a walker or a scooter. It really does come from a place of concern. I know a walker and a scooter are in my future. Believe me, I've discussed it with doctors, nurses, and my PT. I'm just not there yet. See the philosophy is to use an aid when you find you need it but don't rush to an aid because once you start using one, you lose more of your strength and independence and that aid becomes a requirement. Have I rented a scooter before for long distances? Absolutely. Have I plopped into a wheelchair at a museum or such that is too much walking? In a heartbeat. But living in one is something I am putting off for as long as I can. Not because I am stubborn but because I don't need it yet. I've not fallen in years (knock on wood). That will be the sign it is time for more help. But thanks so much for that suggestion. Believe me, it is a constant in my mind. You don't think it is an accident that my condo is wheelchair accessible with wide enough doors and turning space do you?
So I reach out to you, my tribe, my people. Please be kind to me and realize when my body freezes and you casually walk over grass, it's not me. I'm having a personal panic attack because I so want to follow you but I just simply can't. I want to go everywhere still, do everything still, and be "normal". But Myositis has stolen that from me.
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