Thursday, October 14, 2010

The Chronic Illness Lifestyle

I'm starting to think of my new way of living as just another lifestyle. Of course, it's taken about 30 yrs to figure out that I'm never going to be 'normal' again and to finally make my peace with the way things are.

I'm curious if others would mind describing the differences of their chronic illness lifestyle...

Here's some of mine:

* I usually wake up alone. Hubs wants me to sleep as long as possible because my nights can be rough, so he goes to sleep with me, then sneaks off in the night to the "other bed" aka the couch because he can't sleep with my constant movement as I try to get comfortable. If I need him I call the house phone and he magically appears. He's gone to work by the time I'm awake.

* I need special stuff. Special definitely does not mean better, just different. This includes shoes, clothes, meds, food, drink, light bulbs, computer monitor and keyboard, glasses, music, phones, bedding, floor plan to my house, home location, furnace type, door handles, air filters, car, and the special sign on my door that says "Oxygen in Use". Well, you get it.

* I cannot survive without my meds or a heating pad.

* I carry an emergency case that describes my medical conditions and contains emergency meds with instructions. A small supply of daily meds in case I forget to take something or get stuck somewhere. This is usually inside another bag where lotion is ever present, as is something for my peeling lips. Sunscreen is always there, as is an assortment of sunglasses and reading glasses with tinted lenses. My phone is my lifeline. A hair tie in case the wind blows, this keeps it from triggering Trigeminal Neuralgia (TN) across my face. Cotton balls for my ears to prevent triggering neuralgia inside my ear and down my throat. My "Butt-cup" aka Back Joy which helps my posture and allows me to drive distances and still be able to stand up afterwards. Gloves for my Raynauds. Purell because everything makes me sick. Something to snack on to keep blood sugar where it needs to be.

* There is a single magnet on my refrigerator that tells emergency personnel where to find my emergency information.

* My car looks like we're homeless. It always holds a neck pillow and at least one blanket, a towel, at least one spare coat or sweater, and an emergency kit in the glove box. If you peer inside and find an ice cream bucket with a lid you'll know it's been a bad Migraine week/month/year.

* Hubs does the shopping so I don't have to get out in the sun and fluorescent lights.

* I wear dark sunglasses, indoors and out. Home is about the only place I can go without them because we have special windows and have arranged the lighting so that it doesn't tend to trigger Migraines for me. I've learned it's okay to answer the question "Why don't you take those sunglasses off - it's dark now" with the simple answer "I can't".

* I work from home. Without this option I would be unemployable.

* I no longer wear dresses or skirts unless they are very long, or its winter and I can get by wearing tights. Varicose veins and rashes are distracting to others, and they just don't look right without heels.

* I don't wear makeup much anymore. I don't have much call to look beautiful for anyone unless it's date night :) and my radically changing skin has me at a current loss for anything that looks good on me. Sometimes less is best. I'm okay with letting the inside overcome the sometimes shocking package outside. I just tell Hubs to take off his glasses and he thinks I look great :)

* I rarely wear shoes now unless I'm going somewhere or my back is especially bad. Sometimes they trigger Dystonic spasms in my feet, and if it's a bad week/month I'm better off bare or stocking footed.

* My company at home is my entourage of pets. They keep me going and functioning, so I tend to be somewhat unapologetic about them. I'm no cat-lady, but they're important to me. They follow me everywhere and I look like a momma duck and her ducklings. I owe them more than I can repay, so don't look at me funny when you realize they are old and I spend time and money on their medical care. I'm teaching my kids the value of growing old and taking care of worn-out things, both animals and people.

* Sometimes I don't answer the phone, and sometimes I don't come out to visit. If I feel well enough I will do my best, even if that means opening up the door with a smile on my bedhead, and jammies on. Friends and family are always welcome in our home, but are expected to understand this.

* Dealing with medical bills and the insurance company is a day to day struggle. I know our insurance company is trying to wear us down, but we'll not let them win. I take this as a personal challenge, and it is my other part time job.

* Doctor visits are considered "going out", and are usually followed by a decent meal at a restaurant which serves something I can eat.

* We've learned how to handle doctor appointments and hospital visits with drillteam precision and lose tolerance for being treated like newbies.

* We will sometimes have hushed dinner conversation with other chronically ill patients about unsavory topics and not roll an eye, and we quietly chuckle when someone at the next table asks to be moved because we got too technical in our discussion.

* I've learned how to answer the question "How are you" truthfully without going into detail.

* Sometimes disappointment comes our way. Friends and family let us down because they don't understand. Hubs and I are a team and it will always be that way - we have each other. In the end we have learned that has to be enough.

So, what is new in your life since you became chronically ill?
Comment by amanda on October 15, 2010 at 4:00pm
Thanks for sharing this Ellen. You're such a strong person - you have so much to deal with! I think your honesty is so admirable. This is a great discussion topic for people to bring up in their chronic illness communities!
Comment by asburyparkangel on October 18, 2010 at 5:47pm
Wow, girl...yes you are courageous. You've got me beat by a LONG run. I wonder how some of you do it. I guess I thank The LORD everyday that UI can do so mcuh with all teh HELL my bodies been through. I will be praying for a brerk through for you, Ellen. And thank YOU so much for the awesome, timely & time consuming paosts. You should be a health counslour!
Comment by Amigos da Cura on October 21, 2010 at 3:58pm
Comment by Ellen S on October 23, 2010 at 8:40pm
asburyparkangel - Thank you Dearie :) You should add your list of things in your life that have changed. Tell us about your new normal. I would love to see how somebody else deals with everyday things...

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