Chronic Illness: A Caregiver’s Story

How To Live

I’ve thought about this for some time now. As my health coaching business began to build and my focus became clear, it was obvious. Healthy people are interested in healthy living. Ill people often don’t have the energy, time or focus to think about it. It’s not that they don’t care! They do. But when you can barely lift your head up, when you can’t get out of bed, when you are doubled over with waves of nausea — the last thing you want to do is Yoga or Tai Chi. You can’t really go for a walk either. Coaching them is more about encouraging them to do little things that help. Encouraging them to not give up, and to keep fighting for their life.

My first client? My favorite client? My husband who had been ill and nearly bed ridden. We got him moving, helped him lose some 65 pounds, and restored his passion for living. He was cycling, working, building a business,, and hopeful for a year or so after falling ill. And then? Suddenly, he was unsteady, couldn’t think straight, was exhausted all the time…and the relapse has never subsided. No food changes, no medication, nothing is helping.  This guy went from the front of the pack to back to bed pretty quick.

How It Started?

We’ve lived with this madness since a surgery changed everything for a once vibrant, active, and mentally agile 47 year rock star in his field. My husband was that guy. He was the guy everyone turned to for advice. He was the guy that friends and family ran to for technical help. He was the guy that friends sought for help with technology, photography, recovery, and parenting.  And he would drop everything to help a friend, a coworker, or an employer.

Then, he got sick. He had surgery on July 17, 2007. He has never returned to a normal, vibrant, fully alert man.  And only in the past 6 months did we start hearing the words CHRONIC FATIGUE SYNDROME!  No previous doctor out of many said anything. In fact,  they usually shrugged their shoulders and gave us a baffled look of confusion.  They tell us that Chronic Fatigue Syndrome can start as a result of illness or surgery, trauma, or extreme stress. For two straight years, he had all of that.  Today, it’s not so much an emergency, its just constant state of illness in varying degrees. It might last an hour. It might last the day. It may come and go in waves, worsening each time he goes to the bathroom.

What’s it look like? Sometimes, it’s just easier to post a link to a well written presentation. Want to know more about ME/CFS? 

How Does an Unintentional Caregiver Live with it?

That’s the real question. I don’t deserve the accolades given to me. We decided to go public – to share our story because we needed some help financially. On the urging of several friends and doctors,we finally took ourselves out to the Mayo Clinic. It was all out of pocket, but we were desperate – and still are. They sent us on a whirlwind tour of their facility. They promised a final recap and discussion about what we need to do. What we got for our $30,000 overpriced vacation? More stress and not a clear diagnosis that gave us specific treatment nor lifestyle protocol.  Friends were telling me how they admired my show of love. They mentioned that I was such a great role model. I don’t feel like a role model. I feel like I’m lost and only know how to go one day at a time, do the next indicated thing, and try to nurture and nourish myself just enough to make it to the next day.

Zen Monkey or Cry Baby?

Gone is the zen monkey who practiced yoga daily, meditated, and found serenity the priority above all else. I can drop to the ground in a torrent of tears more easily than a hormone raging teen.  But I’ve got 21 years training specifically in managing the stress, handling life’s most difficult moments, and finding a way back to Zen Mode. No one can be perfectly peaceful at all times. This is the way I find my way home.

I’ve created a list of tips for others in my situation. If you care to, I welcome your donation to support my efforts in creating support and coaching for specifically for caregivers. We need it.

7 Tips for Taming the Terrible Tango of Caregivers’ Burnout:

1) Write it out:
Just start writing. It’s how I became a writer in the first place way back in the early days. I created a career where I could work from anywhere. I also found that sitting down and writing – handwriting – allowed me to release all kinds of pent up emotions and thoughts. No one needed to read it. I just needed to use my pen and paper as if it was me talking with an unconditionally loving friend. (Call it God if you want.)

2. Daily Doses:
Decide on a few things that you give to yourself daily,at a set time every day. For many of us, the morning hours are precious for that quiet self nurturing space. During this time, write, meditate, practice yoga or tai chi, or qi gong, do something that nourished YOU. Keep this time as your sacred space.  I actually put a sign on my yoga room door that says if the door is closed, leave me alone.

3. Exercise: As many days a week as you can, get your heart rate up with good exercise. If you can, do some of these days with a friend. The loneliness can drain you. So find a friend to walk or ride with, join a gym, go to a class….even go for a jog outside in your neighborhood. You’ll be amazed at how much better you feel both because you gave your heart a workout and because you made contact with the outside world.

4. Ask for help:
If you are a member of a religious group – a church, temple or synagogue, this is a great place to start. If you have a close circle of friends, you can try asking them. Neighbors might give a hand too. Know what you need and ask specifically for what you want.  If you don’t ask specifically, you’ll get the wrong kind of help. If you don’t keep control over the schedule, you get too much at once and not an ongoing flow. So be specific. And don’t be surprised if you just get a ton of advice. The funny thing about this is too many people think that giving advice is helpful when in fact, what you asked for was specific hands on help.

5. Know when to take a break:
We all have our trigger points. We all have our break points. Arguments over silly things. Anger or resentment over things that don’t normally bother you. For me, it’s often a growing irritability that suddenly erupts. Or impatience. Or I find myself telling everyone I meet all about the problem… I’m not looking for pity. I’m looking for a way out and it’s clear to me what I really need is a break.

6. Stock up on Healthy Foods:
Keep your fridge filled with healthy foods. Try to focus on fresh or frozen, pure foods without additives, hormones, and antibiotics.  That’s the easy answer. Fresh is best, local is great and organic is supreme.  If you just focus on that, you eliminate the obsession and just eat 90% fresh natural foods grown as nature intended.  EASY to Say, Not always easy to do. So fill the freezer with some healthier choices. Use a FoodSaver machine to freeze your own prepared foods. Cook larger portions, and use leftovers for different meals.  Fill the pantry with great spices and herbs, infused oils, natural flavorings.  Learn to cook. Learn to play with recipes. Get some basics down so you know exactly how you’ll prepare. Watch cooking shows for new ideas. Keep it Simple, Tasty and Fun.

7. Gratitude: Focus on Gratitude
I make a list, daily. I try to focus on gratitude all the time. I use positive statements. I use affirmative statements. But sometimes, it just gets down to acknowledging all that I am grateful for in my life, today and yesterday.  Stopping to count my blessings, I remember who I am, why I am here, and what I can do today.

Your Donations will go towards creating a Coaching And Support System for Caregivers. It might be you someday wondering how to pull it all together, keep it all together, and still have a life.

© 2014 Ramblin Lamb Wellness — All Rights Reserved — No Unauthorized Use in Any Form.