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Chronic Illness: How to be honest about your limitations.

When someone accuses us of not doing enough we feel terrible. Worse if we are doubting our own judgment and wonder, “Am I capable of more?”

This is a hard concept when we have a chronic illness. Our energy levels and pain threshold can change from day to day. Sometimes we doubt ourselves so much we get confused about what we are capable of doing which causes havoc in how we see ourselves in our various roles as partner, parent and productive member of society.

Defensiveness in the form retreating like a turtle or snarling back like a cornered rat, is human nature when we feel we are attacked. We can often feel attacked when we are flat on our back and our spouses or kids are pulling on us to do more.

When you know the truth about your limits there is less need to be defensive. When you have the truth in your corner it is easier to stay calm, accepting and centered in confidence.

OK, so how do we know our real limits?

Top 10 Posts on the EWN Blog in 2010!

Encouraged by my friend Carolyn Thomas of Heart Sisters, I present to you the ten most popular posts at EWN for 2010! I enjoyed bringing you every single one of them!

1) 7 Ways to Start Being Nicer to Yourself

2) 10 Things to Say to a Sick Friend

3) 8 Steps to Find Hope After an Affair

4) 10 Ways to Find a Good Therapist

5) 12 Links about Finding & Keeping True Love

6) 3 Big Danger Signs Your Partner may be Having an Affair

7) The Relationships Page

8) The Self-Esteem Page

9) 10 Steps to Lower Anxiety & Find Empowerment

10)  The Chronic Illness Page

What strikes me as I look at the list is that all these posts and pages provide feet-on-the-ground, get-to-the-point, practicle advice. In 2011 EWN will our best to continue to deliver quality guidance and information with humor and not a lot of foo-foo.

If there is a particular subject or situation you would like see us tackle, do not hesitate to email ([email protected]) or leave a comment for us below!

10 Ways to Care for Your Marriage When You have a Chronic Illness

Good Morning! Today I want to address two really good questions I received concerning husbands when I was the Chronic Illness Expert at Cafe Mom. This one is from Debbie:

"I have a question regarding spouses. I imagine that dealing with "us" becomes overwhelming and frustrating for them, however, what is it when you know yourself that they are using you as an excuse, or blaming you.... making it out that they are NOT the ones with an issue or attitude, that it is us (all the time?). That is simply not true.  But it becomes a battle of wits... almost like you are being enticed into an argument for the sake of making them appear right. Why is this?"

 And this from Susan:

"What are some tips for helping our mates cope with this awful spot they are in?  My husband has had to step and take on primary responsibility for work, since I can only work sporadically, care of our son, cooking etc.  We've developed some crafty ways to tell him when I am in pain and how severe it is, like using magnetic numbers for the fridge.  But I mean deeper, he is starting to show signs of wear and tear.  I do my best to make sure he gets some free time, but he has the weight of the world on his shoulders and I want to lift some of that off without plopping it on me in the form of guilt."

 How many of us really know what we are talking about when we take our wedding vows, “in sickness and in health”? Most of us don’t have a clue. Our partners were blind-sided by the illness just like we were and therefore they are vulnerable to similar emotional stress.

Most of us, men in particular, are programmed from birth to fix things. Our healthy spouses hate that in the face of chronic illness, they can’t fix things for you. Their frustration can come out as irritability, sniping, overcompensation, co-dependent, enabling-type behavior, throwing themselves into work (an area where they can feel competant) and/or shutting down emotionally, appearing kind of flat. All of these can be masking depression.

When we are talking about our spouse’s happiness we are often talking about the health of our marriage. Here are a few tips that I hope will help your marriage cope with the stress of chronic illness. Not in order of importance:

1) Be honest with yourself. Only you in your heart can know how much you reasonably can and cannot do. When you know your limits there is no need to be defensive.

2) Remember you are on the same team. Your marriage is a cart being drawn by two horses, you and your spouse. Being a team, when you pull in the same direction with the same speed, your cart goes forward. If you run in opposite directions, the cart falls apart.

 

Getting Back on the Horse After a Fall

Something happened the other day. I was riding Annie, my excitable mare. Our training was going so well. Ever since the show we've improved steadily, to the point where I was playing with the idea of jumping again. Just little cross rails, nothing big. Happily cantering around the ring, I was thinking how fabulously she felt, how much like flying! Out of nowhere she bolted out of my hands. I thought I had her when she spooked again and that did it, it was time to bale. Out of the saddle and onto the ground – Bam!

Flat on my back I let others in the ring make sure Annie was OK. I just lay there in the dirt like you’re supposed to, waiting for my breathing to return to something approaching normal. I knew I had hit  the back of my head. I had a good helmet on but you shouldn’t take anything for granted when the fall is hard.

I’ve fallen a lot. Riding requires falling. There is no avoiding it. Annie is sweet but not what you would call bomb-proof. This fall wasn’t my worst, I’d rank it second to the worst. So I lay on the ground, looking up at the sky, assuring my trainer that I could breathe and respond appropriately to her questions. Slowly I moved my hands, arms and legs, everything in working order. Then I rolled over and got up.

Walking around a little, all I could think of was, ‘I’m going to have a headache’ and getting back on. I had to get back on. Why? There wasn’t anything to prove. No one would think less of me if I didn’t.

I’m not sure I know even now. I think it has something to do with not wanting to live with fear. I did not want to be afraid of my horse, afraid that I didn’t have the skills to handle her, of knowing it could happen again. There's a reason why 'getting back on the horse' is a saying for not letting the fear get the best of us.

So I gathered Annie's reins, got back in the saddle (Ouchy! My butt hit the ground, too.) and under the watchful eyes of my trainer we walk-trotted with some degree of grace to end the lesson reasonably intact, body and mind.

5 Tips for Coping with Heart Disease on Heart Sisters

Dr. Elvira Aletta is a clinical psychologist with a unique perspective on what it’s like to live with a chronic illness. In her early twenties, she was diagnosed with nephrotic syndrome, a rare kidney disease that usually affects young boys. Then in her thirties, she came down with scleroderma...

via myheartsisters.org

When Carolyn Thomas notified me that an article I wrote on Five Tips For Living Well With Chronic Illness was going to be featured on her blog, Heart Sisters, I was thrilled! I love Heart Sisters and it is a real honor to be mentioned there. Check it out.

Heart Sisters is all about women and heart disease - the #1 killer in North America - from the unique perspective of a Mayo Clinic-trained heart attack survivor. Whether you are coping with heart disease, another chronic illness or are dealing with the chronic issues of living, you will find a caring and understanding voice at Heart Sisters.

Crossing the Border from the Land of Health to the Land of Ick

I've lived most of my adult life dealing with illness in some form or other. Since college, I have no memory of what being "healthy" is like without worrying about, or living through, the next relapse. My experience of traversing from the country of Health to the Land of the Ick is not the same as others'. A few years ago, when a friend told me she was suddenly found to have breast cancer, I broke down and wept. Terribly embarrassed, I apologized all over the place. My friend was cool and calm, and thanked me for my response. Why would she thank me for being a cry baby?

She said people who are healthy had no idea how her reality just made a fundamental shift from being Well to Having Cancer. They were very busy trying to convince her that nothing had changed. She will beat this thing that had intruded itself and go on as usual. They didn't understand that life would never be the same no matter what the outcome. She appreciated that I did understand and I was grieving for the loss of her identity as a "healthy" person.

My wise friend (who is in remission now and counseling cancer patients at a big cancer center) was being gracious. Yes, I was crying for her, a new traveller in this strange place, but the truth is, I was crying for myself, too, who had already been there for a while.

10 Challenges for Parents With Chronic Illness

In the Parents Magazine article, "Mommy Isn't Feeling Well Today," Sarah Mahoney interviews many experts: professionals, parents who have chronic illness and sometimes, as in my case, people who are both. The article is impressive in how it covers many of the challenges parents face every day rearing their kids while their health is seriously compromised.

Below I summarize the article's most salient points and add my comments:

1)  "Handling chronic illness is about learning to live in balance," said Rosalind Doran, Psy.D. 

Many of us learn the hard way that if we don't pay attention to what and how much we do in all spheres of our lives we can quickly over-do. The result is the same as when the tires on our car are out of balance. We're in for a very bumpy ride.

2) "You can't dwell on questions like. 'Why is this happening to me?' or 'What if it gets worse?' It's important to focus on feeling well and to maintain a positive outlook."

Yes, this is more easily said then done but this is an important point and one I've made before. If you have a chronic illness, and I do, there is a danger that we will over-identify with being a sick person. We are not our illness and it really does matter that we make the effort to see the cup half full.

3)  The first hurdle is revising expectations of family life. "Of course, you can still be a loving parent, but some adjustments will have to be made. Your family will not look the way you imagined it would. That's a loss, and it hurts a lot."

In order to move on, down a new path, we need to let go of what may have happened if we had gone down another. If we hold on to, "What would my life have been like if I wasn't sick?" we deny ourselves the opportunity to create a real and satisfying present.

4)  A chronic illness may change your plans about having more children.

That may mean imagining a life with fewer kids, considering adoption or even remaining childless. I had to accept the very real possibility that I would not be able to have kids. As anyone who has been through such an agonizing reality, there is a mourning process, a grieving that takes place. For many women there is also a feeling of guilt (could I have done something to avoid this?) that must be let go.

Horses Help Heal Our Wounded Warriors

Thanks to Mac, my friend on Facebook, I learned about this wonderful program that uses Equine Assisted Therapy to help veterans with PTSD.

Suze Maze, a licensed clinical social worker, offers this program for soldiers stationed at Fort Gordon, Georgia in the Warriors in Transition Program. 

"I've always wanted to come back and work with the military...Equine Rescue of Aiken [South Carolina] is a perfect match. We have horses who need healing and we have soldiers and people who need healing."

She goes on to describe the special power horses have...

"...they all have their own style of therapy that they like to work with. One horse likes to work with people who have Attention Deficit Disorder, another works with those who have mental challenges; [the horses] migrate toward them. I worked with civilians in Kentucky. We have a conscious mind, things that we're aware of, and we have [the] sub-conscious and unconscious. The horses seem to be able to get at that innate sub-conscious...things the person being treated may not recognize. It makes people think outside the box to come up with their own solutions."

Suze Maze has what it takes to be a qualified equine therapist. On her Facebook profile page, she says, "After a forced retirement from riding racehorses for 20+ years, then pursuit of a professional career as a licensed clinical social worker, I am now able to combine them both with Equine Assisted Psychotherapy."

Anyone wanting to learn more about this particular program could contact Suze directly at Operation Open Arms. You can get more information about other Equine Assisted Therapy programs at the Equine Assisted Growth and Learning Association website (EAGALA). They have programs around the world.

The Chronic Illness Wrangler

To prepare for writing this book, "How To Have A Chronic Illness So It Doesn't Have You!" I wanted to find a way to describe the person with chronic illness without having to say ‘person with chronic illness’ all the time.

Fishing around in my mind I came up with some petty lame efforts. It was hard to conjure up anything that didn't smack of victim-ness, the opposite of what this book is about.  Then 'the Chronic Illness Wrangler' popped up. Hmmmm...

I’m a cowgirl from Kansas who grew up with horses, so the idea of a wrangler has happy connotations for me. Nellie, (our little quarter horse mix mare when I was a kid), was full of energy and fun to ride. Or she was unless she got spooked and bolted. Kind of like the way my disease took over my body. Therefore... the Chronic Illness Wrangler: the illness is the horse that needs to be lassoed and trained to behave. The wrangler does the training. Get it?

When I was first diagnosed with scleroderma and for a couple of years after that, my doctors described the illness as ‘galloping.’ They said it was a nice way of saying the disease was running away with me and no one could tell me where it was headed. Did they say nice?

Then again, maybe it helped that I actually knew what it was like to be on a run away horse. The panic, both mine and Nellie’s, the noise, the wind, the desperate prayers to stay on, or if I fell off, the plea that I’d land on something that didn’t kill me. Galloping? Hell. Try riding a rocket!

Did it help that I knew that to stop a run away horse you needed to keep your head and think, know that the run couldn’t last forever and that what the frantic horse needed was guidance? As long as I could keep my head, I didn’t yank back on the reins, causing her more panic. As long as I could think, I kept my center of balance with my mare’s and stayed on. As long as I could think, I chose not to think of every possible woodchuck hole she could fall into.

Best of all, as long as I could think I could remember that to stop a run away horse you reached down on the rein and turned her head firmly to one side. Whoa!

Without knowing it my doctors gave me a metaphor I could live with.

My twice monthly appointment during that time didn’t amount to much more than the nurses and physicians tut-tutting about how the disease had progressed. Pain management was reduced to a game of ‘What non-steroidal shall we try this week?” I would go home despondent, feeling empty and powerless.

Until I remembered the run away horse.

All at once I was the cowgirl wrangler ready to outrace any stupid galloping illness. It wasn't much but it was what I had. No matter how long it took, I was ready to ride this baby out. Just keep a cool head and stay on. As long as I could think, I could reach down, turn this crazy mount's head and gain control again. Whoa!

Photo courtesy Kristian M via Flickr

5 Tips for Living Well With Chronic Illness

In honor of my stint on 'Ask the Expert' for CafeMom, I excerpted this post from one that appeared on Therese Borchard's blog, Beyond Blue. In it Therese asked me:  I know that you have dealt with chronic illness personally and professionally, and this is an area of specialty for you. Do you have five good rules for living with both chronic illness and depression?

And this is how I answered:

Yes, I've had my share of chronic illness. In my early twenties I was diagnosed with nephrotic syndrome, a rare kidney disease that usually affects young boys.

Weird.

Then in my thirties I came down with scleroderma. Never heard of that either. When we are young it is our God given right to take our health for granted. Chronic illness means getting sick and being told it is not going away, and that stinks. Our bodies have suddenly freaked out on us and we've lost control of the one thing we thought we could count on.

Here's the thing about depression and chronic illness. It's not depression if you are adjusting to a major loss. That's called grief. Grief needs time to process. Allow yourself that time to mourn, to be angry and sad about what you've lost. You need time to accept the new reality.

Then at some point, we need to take action. If we don't, grief morphs into depression and that can make your physical illness worse.

Be aware that one or a combination of factors can cause lowered mood when you have a chronic illness:

➢ The situation. Loss. Grief.
➢ Changes in appearance, mobility, independence.
➢ The illness itself may have depression as a symptom.
➢ Pain and fatigue.
➢ Side effects of medication and other treatments.
➢ Social pressure to appear OK, especially hard if there's no diagnosis.

My five good rules to deal with it all? OK, here we go...

1. Be confident you have the right doctor.

When you have C.I. your relationship with your doctor is second only to your spouse or your parents. Being honest (and you must be honest!) with that person means you need to be able to trust them to hear you. If you don't have that kind of relationship get a second opinion. Shop around. In my C.I. career, I fired three highly recommended specialists because they were jerks. Thankfully, I've also had wonderful physicians who literally saved my life and my mind.

2. Define your circle of support carefully.

Isolation leads to depression and it is so easy to isolate when you feel lower then dirt. People may surprise you. Peripheral friends may step up and be terrific supports while others you thought you could count on can't be there for you. If someone inside the circle asks, "How are you?" Tell them the truth. When someone outside the circle asks you the same question, lie. Say, "I'm fine" and change the subject. Too often they can't handle the truth and they suck any energy you have taking care of them! A patient of mine found her mother would get hysterical at any medical news, so it was better to keep her at arms length.

If someone asks if they can help, say yes. Accepting help is a gift to them. Trust that someday you will be on the giving end. My patient's mother, the one who couldn't handle the medical reports, could do laundry for her, and that made both of them happy.

One big way someone can help is to go to doctor's visits with you. The extra eyes and ears take the pressure off you when the news is emotionally laden and important, even if the news is good!

3. Protect your health as you would a small child.

You are more than your illness. That part of you that functions well needs you to advocate for it. Of course, there are the basics of getting plenty of sleep, exercise and eating smart. In addition to all that, I suggest learning a new set of signals that are your clues for when you're wearing your health thin.

For me it's lowered ability to concentrate, tension in my neck and shoulders, irritability and loss of my usually dependable sense of humor. When those yellow lights are blinking, it's time for me to stop, assess and make changes. When I ignored those signals in the past I relapsed. Looking back I can see where I ran the red lights. So be a fierce protector of your health. Set limits and find the courage to say 'No'!

4. Create a new measuring stick.

Our self-esteem lies in the standards with which we measure ourselves as we go through life. To thrive with chronic illness, throw out the old and rethink your standards. If you are used to defining yourself by your 50-hour workweek, for instance, you may feel lousy about yourself because now you can't manage it.

Finding a new standard can be tough. One technique I use with patients is to have them ask themselves what is reasonable? Is it reasonable to do it all yourself or is it more reasonable to delegate? Is it reasonable to register the kids in travel hockey or is it more reasonable to stay local? This is where a lot of courage is needed. Courage to address old pressures to be a certain way and to imagine value in doing things differently. In my own life and in my work I find that those who thrive despite chronic illness creatively find opportunity in their new reality.

5. Have dreams and strive for them!

You had ambitions to get a degree or promotion, to see the world or save it, to get married and have kids. Now you're thinking, do I have to give that up? No, you don't. It's imperative for your spirit that you have goals for living, big and small.

What might change with the reality of chronic illness is the path and timing. I wanted to have kids and was told for years, 'No.' I had to adjust to the idea of life without kids or adopting. Then in my late thirties, my doctor said, go for it. After a scary, thrilling journey, today I have two thriving teenagers.

As we reach for the stars let's appreciate the ground we stand on. Mindfulness has a real place in keeping depression at bay for everyone. Sometimes our dreams are right before our eyes.