Crises: Tips for Before, During and After When You are Chronically Ill
Posted Sep 19 2010 2:55pm
The theme for this week’s blog carnival over at chronicbabe.com is “crises.” Jenny asked, “How do you prepare for such a turn of events? How do you cope in the middle of it all? And how do you recover?”
My Story. . .
In 2009 I went to the wound care center for my twice-weekly appointment for an ankle wound that had recovered from a staph infection but was still being debrided . I had been there the day previously and they said the MRI showed the infection was gone, I just had a “hole in my ankle” that would close very slowly due to my immune system and medications I was on. Twelve hours later I knew there was an infection and called them back. The doctor looked at it and immediately put into a wheelchair to be pushed over to the hospital where I would be checked in.
Over the last few weeks, they had tested me about 4 times for (the results were negative). Now they had no idea what the infection was and they monitored how fast the skin and tissue beneath it was being destroyed with a black permanent marker on my leg. Three days later I was told it was the , medically known as necrotizing fasciitis. I was in the hospital for 8 days. I literally had never stayed overnight in the hospital before; even my son was adopted at birth.
This would become the “crisis” all other crisis would be measured against. Pain is awful, surgeries and recovery are disabling, but I had never dealt with an infection that was life-threatening, or where I could lose a limb. To this day, I know how blessed I am to have my foot, leg. . . and life. My ankle scar never lets me forget it. Statistics show that only 25% of people survive who are not diagnosed within the first 48 hours.
How do you prepare for such a turn of events?
From the hospital I quickly made a list of what I’d like my husband to get me from home, I called my best friend to see if she could watch my son that night while my husband came back over for a few minutes.
I had recently purchased cute lamb slippers and pajamas that resembled lounge wear that they let me wear at the hospital.
I was worried enough and in enough pain, nothing else mattered.
What I learned and did in 2009 before having hand surgery with four joints replaced:
I knew I wouldn’t be driving for weeks. (Originally they said “weeks” as in a few… it turned into 12.) My mom came to help!
I purchased a good day planner and each week copied all the events over to a dry erase board on our kitchen wall, so anyone could literally come to my house and know who was where and who needed picked up when. When my mom came to help it was wonderful.
I cleaned out the refrigerator and bought some basics, including soup and other comfort foods.
I emailed all my friends and told them I didn’t really need meals, but I’d love it if they would just call to say hello and take me for coffee. (I admit, only one ever took me to coffee… so if no one calls you, it’s not personal.)
Since surgery was in November, I purchased Christmas gifts in advance and even wrapped some of them.
I posted articles and blogs, etc. on my web site in advance so it wouldn’t be too quiet there for too long.
How do you cope in the middle of it all?
Have someone to talk to. It’s very lonely and few people understood the seriousness of the flesh eating bacteria or that my life was at risk, especially with my poor immune system. Most people assumed it was just “one of those times” Lisa wasn’t feeling good and blew it off. I tried hard not to have my feelings hurt, but it seemed that even in the worst of times, I was still expected to be the “strong” one. I never cried once the 8 days I was in the hospital or for about 3 weeks afterward because I knew once I started I wouldn’t be able to stop.
Make your bedroom comforting with good pillows, lots of books, etc. My husband had just purchased me the new e-reader, Kindle, which was wonderful in the hospital and the following year after surgery. I could not have held a book, and reading is my escape.
Put one foot in front of the other and give everyone around you grace. You may be the one in pain or going through the crises, but everyone is traveling that same path with you. Imagine, they are in the covered wagon and you are the one walking in front with holes in your shoes. They may not be going through as much actual physical pain, but they are on the same journey and watching helplessly as you struggle and are in pain.
And how do you recover?
Believe that they day will come when you will feel like your former self (even your chronically ill self) After the flesh eating bacteria event, I didn’t know if I would ever get any energy back. I struggled a great deal to just get up and get a cup of coffee. I was on an IV 24 hours a day to get dosages every 4 hours and so I had to carry the bag around with me. Even just to carry the bag was like carrying a small infant–very heavy! But little by little there was just a tiny bit more energy. It was as though a shadow of my former self would blow by in the wind and I’d feel her presence for just a moment and then be tired again.
Give yourself grace and time to recover. I was told that for a “healthy person” for each day one is in the hospital, it takes a week to get back “to normal.” So even for a healthy individual, it would have taken 8 weeks to feel back to his or her “old self.”
Figure out help or give a friend the task of helping you find help! It’s very hard. Finding someone to drive me to physical therapy was a chore unto itself and very draining. Since it was holiday time, people were “busy” with the holidays and didn’t have any free time. I had to hire a taxi some days to pick my son up from school or to take him to karate. I have recently started using an online babysitting service for those last minute times I need help with my son and I wish I’d known about it previously.
Upon reflection, I can say that crises are one of the most difficult times in the life of a chronically ill person.
Even when families gather around to help, they won’t do things the way you would do them. You must offer grace and be glad there are people around who care.
Your children and spouse are stressed out and you are trying to “make it all better” for them and keep the normal household routine. At times, you are literally tied to a computer and IV that is not working and your spouse is trying to figure out why it has quit working before your next dosage is due and you end up at ER.
Friends will disappoint you. No one knows how lonely you are or that just because you sound chipper doesn’t mean you don’t feel like bawling. They email you to say how they admire you and you are brave, but when they casually call and say they have some other things going on so can’t watch your child for the hour you are at the physical therapist, you realize they have no idea how significantly this impacts your day.
Doctors reveal emotional tidbits like, “Do you have any idea you are lucky to be alive?” and you don’t have time to process this thought because the insurance company is calling about a past due payment and your child wants to know if a friend can come over and play and see your splint, and your car is making a weird noise.
But on the bright side…
Learn to laugh at yourself and the circumstances. There may not be much else to laugh at at that moment, so take what you can get. My mom kept us all smiling by accidentally saying things like, “What doesn’t make you stronger just kills you!” (Oops, backwards, mom.) Or her refusal to drive on California freeways, so all the laughs while we drove the back roads for 20 miles to get to a doctor’s appointment or therapy. She told my sister I had the “man-eating virus.” Wasn’t that a horror flick? Not too far off, I suppose.
Look to the Lord. You end up saying “Thy will be done” and “Lord-willing” a lot and leaving the rest up to Him. He knows our hearts and our desires as well as our future. Thank goodness we can say, “He’s got the whole world in His hands” and know with certainty that means everything from the bandages that we are allergic to, to the nurse who needed to sit and just talk with us to be encouraged herself. You never know whose life you may touch in the midst of your own crisis.
You get to watch people look at you with horror and laugh. I knew my Outrigger splint looked scary when teenage girls dressed goth-style with black eyeliner and piercings all over their bodies gasped at me and looked away, I had something worth giggling about.
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