How 22q Impacts My Daily Living

October 2, 2018

 

Living with a disability has impacted me  in my life.  My life is probably different than other peoples.  I believe I have a different lifestyle than most normal people. I would like to share with you some examples of how 22q impacts me and some struggles that come along with it. Living with 22q Deletion Syndrome is not always easy. It causes me to need more help with some things. For example...

 

One of the ways 22q impacts my daily living is I have always struggled with getting up early on account I don't feel that great in the morning. I feel a lot better than I did years ago praise God but early mornings are still a struggle. I usually can't handle the pressure to be up and out the door in the morning. Sometimes, I can't even eat if I wake up early in the morning.

I don't cook a whole lot when I want to eat something a lot of times I will warm up something in the microwave like microwave meals. When it comes to jobs or finding a job that will work for me and what I can work with normally I can only work up to 3-4  hours a day and twice a week is about right for me. I found a job for a while over the summer that worked out perfectly for me. It was opening candy bags and dumping them into boxes. I have found that keeping my hands busy helps.

 

School was always a struggle for me. Going to school every single day was pretty hard for me and gave me lots of anxiety. Nowadays I only am taking one class at a local community college.  I am not looking for a degree but it is a general class for people with more special needs who need more help and it's a great fit for me.  

 

I need help with daily living skills to help me to one day be independent to live on my own as other people can figure it out on their own... I have a CLS helper who helps me with cooking, cleaning up after myself, daily chores. I usually need assistance in going to places sometimes when I go to a coffee shop it helps sometimes when someone else is with me to be there if I need help at all. My CLS helper is one of my good cousins.

 

When it comes to friends, I have great ones!  I love all my friends and I like to hang out with them as much as I can but sometimes it is hard for me to always see them because they either have stuff going on.  Or, some might struggle sometimes with being social a lot of the time. I like to find friends who like to do the same stuff as me but it's sometimes hard to find that because I like to go out and do stuff. I'm an outgoing person but it is hard to find the same in others sometimes. Also, even keeping a friend interested in hanging out with me or reminding them we haven't seen each other or hung out in a while is a real struggle. I don't know what it is, sometimes, and it is hard at times too. So as you can see living with 22q Deletion syndrome has it's struggles and may cause someone to live differently than a normal individual. Sharing the things that I live with on a daily basis is a challenge for me and is sometimes really personal but really my goal with my posts about disabilities is to help encourage others to know they are not alone in their struggles, and that there is help out there. I also feel like God wants me to share about my life and living with a disability (invisible disability) to make others aware that our struggles are real. They are there. People may look at me and think I look normal but there are some things there that I wish were possibly different or that I had things in life easier as some people with daily living skills do. But even though some of us may struggle with some of these everyday skills we can work our way up to become the best we can be. To become better at something everyday if we work hard at it and are determined to maybe live on our own one day. The biggest part that helps me everyday is my faith. My faith in God helps me to find purpose and helps with my anxiety. Putting God first and making time for God is really important to me. My faith helps me realize there is more to life than just my struggles. 

 

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