disability twitter

If you think it is easy getting disability here is what isn’t easy…keeping up with medication regimens, bowel and bladder functions, mood, doctor appts (and there are many), PT, sometimes OT. And you don’t have an assistant helping you with all of this. It is just you.

And pain is one element of it. Mental and physical. The loss of who you were, your dreams shattered. I was deemed disabled at age 36. 10 years later I am still struggling, juggling, trying to be a person. But have your fun thinking all I do is stay in bed all day and sleep or watch TV while collecting money from the government. I wish I could sleep all day. I wish I could sleep at night mostly. Pain keeps me up most nights and it is hard to sleep. Then insomnia takes over and you don’t know when you are going to sleep again. You are up all hours of the day and night, exhausted. Just taking a shower is a full time job. As good as it feels to be clean, the process of washing your hair and body takes its toll on you. By the time you get to the drying off phase, you are winded and need to rest. Then you need to get dressed.

I have been living with disability for the past ten years. I am mentally and physically disabled. I suffer from PTSD, depression, CRPS, chronic pain, and chronic back issues. I can’t walk far. I have trouble with my bowels and bladder. I see more than three doctors for my conditions, not including my psych team. I have weekly therapy and see a psychiatrist every month for medication. I take more than eighteen pills per day. Some I take in the morning, the afternoon, and evening before bedtime. I have a med reminder app to help me remind me to take my meds or I would be lost as to when I need to take my pills or the last time I took a particular pill. I also use this app to help me remind me to empty my bladder every four hours.

I fight through exhaustion every day to get through the day. I have my morning cup of coffee that is part of my routine in the morning to get out of bed. Sometimes I am successful in staying awake if I slept somewhat ok. But if I slept horrible, that cup of coffee is like a sedative and I am back in bed sleeping for the day.

I cope with different strategies. I color in children’s coloring books because they are easier than adult books. I listen to music and sometimes I read. Mostly I am on social media where I talk to my online friends every day as we share puppy and kitten pics most of the day when other people share their pet pics. My therapist wants me to make a slideshow of them but I don’t like it because too many decisions are involved. I text my cousins or my friends to talk to them nearly every day. I also email a couple of people to keep in touch. Most of the time I communicate to my doctors through the patient web thing about problems that come up or side effects of medications I am having.

any thoughts?

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