Friday, August 21, 2009

Coping With Crisis on Top of Chronic, part 1

This is "part 1" of a 2-part series of notes for a radio program on Coping with Crises on Top of Chronic; Chat with 2 Gals Who Understand where Lisa Copen and I chatted for National Invisible Chronic Illness Awareness Week. For "part 2" of these notes, follow the link at the end of this message.

A couple of weeks ago I was fighting the first day of a migraine (it ultimately lasted 13 days in spite of medical efforts to subdue it) when I got a phone call from my lab. There had been an issue with my recent blood work and it needed to be redrawn as quickly as possible. I figured I could wait until the headache and accompanying spotty vision abated enough to allow me to safely drive, then I could manage to get myself to the lab that was 10 minutes from home, sometime later in the week. Unfortunately, as the lab tech continued to apprise me of the situation, I realized that the vial that needed to be redrawn was one I had done nearly three weeks earlier at the specialty lab over a windy mountain pass nearly an hour away.

My phone rang at about 11 on a Tuesday morning and I had to have the redraw prior to an IV I would receive that next Sunday. Because of Post-Infectious Chronic Fatigue Syndrome (ME/CFS), my driving ability is limited to about half an hour from home and only on relatively straight roads, even on my best of days. The location of the lab already meant I would have to call in outside help to get it done. Not only would I need help, but I would need to be rather demanding about how and when I received that help because the specialty lab only does these specific draws on Mondays, Tuesdays or Wednesdays before 1 PM. I had to somehow either get myself to the lab within the next two hours that very day, or hit a specific five-hour window the next. If I could not arrange childcare, someone to drive me, and cope with the effects of motion sickness on top of my migraine misery before 1 the following afternoon, I would have to try to reschedule my IVIG therapy for a second time, the treatment we had fought for the past 18 months for insurance approval to be able to begin!

My mom, who was herself dealing with pre-op workups for a knee replacement surgery, helped me figure out a plan for my dad to drive me and three kids up the mountain the following morning and still get back down to town in time for my x-rays at the orthopedic surgeon’s office the next afternoon. I certainly didn't want to miss that appointment and delay my hopes of getting my broken foot out of a cast after 10 weeks of slow healing! Before the week was over, Mom would also end up driving me to my primary care doctor’s office for migraine shots two days in a row. As I tried to juggle all those different medical demands, I joked with my mom that I never knew that being sick could be such hard work!

Do you ever feel like living with a chronic illness is a full-time job? And as if managing your “regular” health challenges isn’t complicated enough, what do you do when a crisis situation comes along on top of the daily juggle of pain, unpredictable symptoms, medical care and the financial strain that can accompany it all? Life doesn't just stop because of illness. Accidents, sorrows, trials and tragedies (as well as joys, victories, accomplishments and achievements) of all proportions still happen around and to us. When just coping with chronic already overwhelms us beyond our limitations, how do we keep from being done in by crisis, the surprise "extras" that come along?

I certainly haven’t figured out all the answers, but after living my entire adult life under the shadow of Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS) and taking some crisis journeys through unemployment, infertility, a few outside medical emergencies such as this broken foot, and several encounters with death, grief and loss, I have learned a handful of coping skills along the way. When crisis hits on top of chronic, here are a few simple survival tips I can fall back on:


1. Quiet Time.
This is a non-optional survival skill for me in daily living with chronic illness. While I might be able to scrape by for a few days without making scheduled downtime a priority, I can’t function on a continual basis without it. In a crisis situation I might be tempted to try to push through on adrenaline for a while, but if don’t make a conscious effort to slow down sooner rather than later, I will pay for it with a significant physical and emotional crash that will be hard to recover from. So while it may feel like there is no time to even catch my breath, in times of crisis I must be aware of my need for regular “time outs”.

There are two ways that I implement this concept in my life. The first is through daily “quiet time” every afternoon in our home. My kids are 9, 6 and 3 and know that every afternoon we will pile into my bed together for story time (sometimes I can barely get through a short, simple picture book that I ask them to read to me while on better days I might be able to read two or three chapters of a novel with them) then everyone will go to their own rooms and sleep or read or play quietly for at least 90 minutes. We have done this since the oldest was a baby. (I encourage moms who are newly trying to implement this technique with older kids who might be resistant to the idea, to start with even just 15 or 20 minutes and work your way up.) On days when I can barely function and wonder how I will ever make it through the day, I know that if I can hang on until quiet time, I will have a chance to recharge at least a bit; on these days quiet time sometimes becomes 2 or 2½ hours rather than just our regular 1½.

On a spiritual level I need daily quiet time as well. God calls me to “Be still, and know that I am God…” (Psalm 46:10). In my weakest moments it might be all I can give to simply lay still and try reflect on who God is, being thankful that He loves me, broken as I am. Other times I can make a more active pursuit of knowing God by spending time reading and meditating upon His Word (my Bible), by praying (simply talking to God) or journaling my thoughts to and about Him. It is only in stilling this most inward part of my soul where I find the greatest refreshment and benefit of quietness and intentional rest. The words of Isaiah 30:15 are so very true; in quietness is where I find my strength.


2. Laughter is the Best Medicine.
Cliché, but true none the less. I can always tell when my husband is feeling stressed, especially over my medical needs, because it is in these times that he most frequently turns to humor to help us through. I cannot even begin to count the times he’s had me giggling with his tongue depressor puppets, or exam glove balloons, or silly comments only the chronically ill could love, as we’ve sat in cold exam rooms waiting for doctors to show up.

Going through fertility treatments I had to get really creative about finding ways to laugh at hormone injections and very invasive testing and treatments. I remember driving across town one day with a sperm sample in my bra (to keep it the correct temperature) and bursting into semi-hysterical laughter at the thought on how on earth I would explain that to an EMT if we were to get in a car accident on the way to the clinic and they would have to cut me out of the wreckage with the Jaws of Life! Sometime laughter is the only way to avoid tears.

Tears and laughter can co-exist as well! Funerals are typically solemn times of amplified grief. But have you ever found those in that inner circle of family and closest friends gathered around together and laughing at funny memories of their loved one’s life? Sometimes laughter comes through tears, but can be just as healing.


3. Support Network.
Did you cringe a little when I was talking about my husband’s playful support at my doctor’s appointments, my dad’s willingness to be both chauffeur and babysitter for my distance blood draw, or what it’s like to be in an “inner circle” of family and friends at a funeral? While I’ve been more blessed than most in this area, I know that support doesn’t typically come easily. We’ve had seasons when we didn’t live near extended family, had few friends, were not involved in a church, and my husband worked 80-90 hours a week. I felt incredibly alone and afraid without anyone to lean on. It was then that I learned just how important it was for me to make the effort to find/create a support network for myself (even when I felt like I have no energy to make that effort)!

Surrounding yourself with support is ideally accomplished before you are faced with a time of crisis, but often seems hard to find. I think this is true because others may not see or truly understand our need for help through the daily grind of chronic. It can be humiliating to ask for help too, even when we are crying out on the inside, “I’m so alone!” When we are faced with crisis, sometimes (not always) support more readily presents itself. When it does, it’s important to take that help offered, though we would all rather be self-reliant enough to not need it.

OK, so you are ready and willing to accept any support you can find, but can’t find any. Now what? Your doctor, hospital, local social services or place or worship are all possible starting places when looking for a support network. I’ve said over and over that I don’t know how people survive without the support of a local church family. Even though I have great family support now, including my parents who moved from out of state just to be near enough to help, I am still thankful for the additional help and encouragement from church friends and local support group members. Being involved in a supportive network also lets me feel like I have something to give back to others, maybe not in helping meet physical needs, but there is hope and purpose simply in sharing my story and showing someone else that she is not alone either.

Another huge advantage we have in the age of the internet is that there are support websites and message boards for just about any issue you can imagine, even those “one-in-a-million” type illnesses. If you can’t find an existing one to meet your needs, there are many free places to create your own online community. When you become a part of an online support network, you may not find someone in your own backyard who will be there to drive you to your next doctor’s appointment (but then again, you may make just such a connection!) but you probably will find many others who personally understand the fears and frustrations of your challenge, be it chronic or the crisis variety. I participate in several online support networks such as Rest Ministries (support for any form of chronic pain/illness), Hannah's Prayer (infertility and pregnancy/infant death support), and many disease-specific forums.



I realize these are only three small places to start the coping process, but this post is already getting quite long, so I’ll save my next three tips for another day. If you want a few more ideas right now, check out Finding Courage in Crisis, an interesting article I ran across earlier this month. I'm always looking for new coping concepts to tuck away for times of need. So how do you cope with chronic, with crisis, or with crisis on top of chronic? I really would love to hear what you have to share!!!


For more on this topic, join Lisa Copen and I as we talk (yes, in our real voices) during the National Invisible Chronic Illness Awareness Week Virtual Conference on September 15. Between the two of us, Lisa and I have survived 45 years of multiple chronic illnesses including Fibromyalgia, Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS), Rheumatoid Arthritis (RA), Diabetes, Endometriosis, Polycystic Ovarian Syndrome (PCOS/PCOD), infertility, chemical sensitivities and more. We know that life doesn't stop just because we are in pain. Hear our radio chat as we share our hearts and experiences through surgeries, infections, IV therapies, broken bones, unemployment, adoption journeys, and grief ranging from miscarriages to the deaths of grandparents. We will talk about survival skills for coping the stress of everyday life when crisis hits and we'll look forward to chatting with you as you call in your own crisis on top of chronic stories too.

Go to HarvestingHope.blogspot.com/2009/09/crisis-chronic-2.html for "part two" of these notes or listen to the radio program at http://www.blogtalkradio.com/invisibleillnessconf/2009/09/15/Coping-with-Crises-on-Top-of-Chronic--Chat-with-2-Gals-Who-Understand.

2 comments:

♥ Teresa ♥ said...

Wow, this is some really great advice. I think quiet time with our Lord is essential no matter what. It is the basis for all other coping skills. When you can just crawl up in the lap of Jesus and tell Him all about your struggles and then leave them at His feet, there is just something amazing about that! Of course, I have a very hard time leaving my things there. I always tend to want to go back and pick my 'things' up. You know, I want to help Him out a little even though I know He is fully willing and able to take care of it all.

That is what I'm struggling with right now, letting Him be the one to handle all my struggles and emotions that wreak havoc on my body every day. The feelings of fear, frustration, pain, depression, sadness, loneliness, isolation, anger, guilt, etc. You name it, I've tried and tried to give it to Him, only to later take it right back. Humph! It is so very hard, isn't it?!?

Thanks so much for writing this. I think it is really awesome. I know it is a blessing to me and I know that it will be a blessing to others, too. I look forward to reading your future posts.

I pray you have a wonderfully blessed week!

Because of Him,

Teresa <><

A link to the story of why I blog:

http://toomanyheartbeats.blogspot.com/2009/07/document.html

Jeanne said...

Jenni,

I remember when you had that terrible migraine that seemed like it would never end. I'm so sorry you had to go through all that.

Sadly, most chronically ill patients can probably relate to some of the dilemmas you mentioned... from finding a driver to get to needed healthcare to (for some) finding childcare for last minute emergency health issues to scheduling constraints where timing has to be "just so" for test results to come out properly and such.

I can imagine you wanted to get out of that cast.

Yes, I have often said that living with a chronic illness is a full-time job. In fact, when I was younger and healthier I once worked at a job that averaged about 80 hours or so per week. I have often commented to my husband that I am more stressed now with all of my doctor's appointments, tests, surgeries, procedures, and lab appointments than I ever was at that 80+ hour per week job.

Like you, I have been chronically ill my entire adult life. (The first chronic illness that hit me, endometriosis, started up with symptoms when I was just 13 years old). Nevertheless, I had a few years where I was able to force my body to do a great deal. (I now look back with regret that I pushed my poor body so hard. I wasn't doing myself any favors).

Quiet time is huge. You gave great, specific ideas for how to implement this. I have one daughter who is 8 years old. I began teaching her at a very young age how to entertain herself and she does wonderfully at either reading to herself or playing quietly during those times that I need to lie down and have some quiet time.

As far as "laughter is the best medicine", this is so true. My husband and I got through some dark days indeed by throwing in DVDs I had picked out from the library down the street... I always searched for comedies first. We don't have dish or cable so the library DVDs were a lifeline for us when we needed to just laugh.

A support network is huge. From 1992-2008, I attended monthly endometriosis support group meetings locally. When we stopped having meetings in 2008, I stayed in touch with the group. I still maintain contact with group members, despite the fact that we no longer have monthly meetings.

I have also discovered a rich, wonderful online support community. It really helps to connect with other people who "get it".

I just posted the Invisible Illness Week info on my blog yesterday. I participated in II Week last year too.

This post has lots of great suggestions for coping.

Jeanne