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I was nineteen years old when I was diagnosed with FacioScapulaHumeral Muscular Dystrophy (FSHD). That was a long time ago and I’ve been living with it for many years. Living with a disability can be trying and difficult for many people. For me, I’ve been blessed and never wanted my disability to be the defining […]
I was nineteen years old when I was diagnosed with FacioScapulaHumeral Muscular Dystrophy (FSHD). That was a long time ago and I’ve been living with it for many years. Living with a disability can be trying and difficult for many people. For me, I’ve been blessed and never wanted my disability to be the defining characteristic of my life. For the most part, this has been true about me but as I get older my FSHD has asserted itself in unexpected ways. Perhaps you also have a disability as well. These are some of the many lessons from my FSHD.
We are all works in progress in many ways. However, my FSHD has taught that it and I, are a work in progress together. My disability develops and progresses. This means it looks and feels different at different stages. It means I need to realize there are going to change. Using my arms will be harder at a certain stage. Walking will be challenging at another stage. In short, adapting and accepting change is important.
If you have a physical disability like FSHD, it is going to affect your pace. It is going to take me longer to get ready to go somewhere. It is going to take longer to get dressed. I can’t be at the same pace that other people can. I knew a woman with a disability who was rushing to get to the phone and fell and got hurt. When you have a disability, you need to accept a slower pace of living and getting things done.
Yes, I know this is not a word. However, if my FSHD has taught me anything, it is I have to embrace my Me-ness. My Me-ness is the me that actually exists, not the one that exists in my mind. My Me-ness includes accepting what I actually am. Accepting me is one of the first steps in being friends with my FSHD
Everyone should try to eat and sleep well. However, it is particularly important for someone with a disability to have good wellness habits. Too much weight is not good for someone with a disability. Eating the wrong foods may also create complications. Having good sleep habits can also help to build a healthy life. I need to get enough sleep and go to bed and wake up at roughly the same time.
My FSHD doesn’t like patience. When you have a disability, patience is important. I need patience with myself and also others. Some people with disabilities depend on others. Being patient with people who care for them. Frustration is common for people with disabilities and their caregivers. Be patient.
Don’t neglect your mental and emotional health. People with disabilities and their caregivers are particularly susceptible to problems like anxiety and depression. I good therapist can help you to adust and cope.
These lessons from my FSHD have helped me in many situations. They have helped me to make adjustments as my disease has changed. They have helped me to cope with the uncertainties of having FSHD. Click here if to download the FSHD lessons infographic.
