Today I am joining joining the Five Minute Friday blogging community. We write for five minutes on the same writing prompt, and then we gather at Kate Motaung's blog to share our words. This week the prompt is: Ready.
Because this is Invisible Illness Awareness Week, I am writing about what it is like to get ready to go out with a invisible chronic illness. If you want to know more about my invisible chronic illness, you can read my post, 30 Things About My Chronic Illness You May Not Know. My other Invisible Illness Week posts for 2014 are listed here.
Ready
When you have a chronic illness, getting ready to go somewhere is not a simple task. For me, getting ready to go out of the house means that I need to start preparing a few days in advance. I have to plan extra rest time to make sure that I will have enough strength and energy left to go out on the scheduled day.
When the day comes to go out, I cannot just get dressed, eat breakfast, and walk out the door. It takes my body two or three hours to “wake up” to the point that it is ready to move. Once I am out of bed, I move slowly as I pick out clothes and get ready to go. First I have to put on compression garments. If you have never worn medical grade compression that is 30-40mmHg, then just imagine putting on a pair of Spanx that is two sizes too small! It is a lot of work for my muscles and can be painful on the loose joints in my fingers.
Next I get dressed in my clothes for the outing, which can take extra time if I have to keep sitting or lying down to rest. After I am dressed I decide if I have enough energy to on makeup. If I have enough energy to spare, then I put on a little bit of make up so that I don’t look so tired. If I am feeling awful and not up for hearing comments about how good I look, then I just skip the makeup.
Even after putting on my outfit for the day, there is still more dressing that needs to be done. If it is above 72 degrees outside then I have to put on an ice pack vest and/or an ice pack neck wrap. If it isn’t hot outside, then I might have to bring the vest anyway, just in case it is warm in whatever building I am going to be in. If it is a cool day, then I need to bring an extra layer for warmth. But I also need to make sure that I can shed layers later on if I get too warm.
Before heading out the door, I have to make sure I have everything I need: my purse, medicine, water bottle, medical ID bracelet, and Roho cushion. We almost always forget the Roho cushion, and someone has to go back to the house to get it! Because of an injury to my tailbone 11 years ago, the Roho cushion is a must when sitting anywhere. In addition to all of that, we also need to make sure that I have my wheelchair in the van to use wherever we are going.
After days of planning out my energy, a few hours of waking up, and an hour getting dressed and gathering my things, I am finally ready to go. Getting ready isn’t a simple thing when you have a chronic illness. It is time consuming and takes a lot of planning and a lot of energy. But, hopefully, every outing is worth it!
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P.S. I tried to write this post in five minutes, but I really struggled to think and communicate clearly in just five minutes, and it took me extra time. I'm sorry! Can I blame it on the brain fog that goes along with my chronic illness? :)
Thank you for sharing this, and for reminding me that my troubles, too, are momentary.
ReplyDeleteYour courage and honesty are amazing. God bless you and thank you for sharing your world with us.
ReplyDeleteBlessings to you,
Andrea
www.hopeannfaith.wordpress.com
I'm so glad you wrote this Rachel! I think it's so easy for us to know realize what it takes and how hard it really is for those battling invisible illnesses - but this gave us insight into a 'normal' day of getting out of the house for you in a way that both opened our eyes and hearts, and honored and gave dignity to those who suffer! Praying for you!
ReplyDeleteThank you for sharing this part of your journey with us. It helps me to better understand what those with invisible & chronic illness are up against each day. Blessings!
ReplyDeleteSuper women have strength beyond belief because they believe in a BIG God. Thank you for sharing your story. Some illnesses are invisible. So true.
ReplyDeleteRachel, I am always drawn to the warmth of your words. Thank you for sharing your life.
ReplyDeleteThis is a great "educator" as most people would have no idea the preparation it takes to get places. While my specifics aren't the same as yours, it also takes me days of planning to go places. There are many things that go into the preparation, and something unexpected can still throw it all off or my body can just not cooperate and make it not happen. But, one thing I must do is take a shower and wash my hair the night before. Otherwise it takes too much energy to accomplish it and everything else and make it out, too. I don't think most people realize how much energy a shower and washing your hair actually take. Then it still takes me hours to get ready to go ~ including rest breaks. We also take along a big bag of supplies everywhere ~ even if it's just for an hour or two. This year, a wheelchair joined my list of supplies that sometimes goes along. I just don't think that most people have any idea how much it actually takes for us to get places. Thanks for making people more aware!
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