Wednesday, May 15, 2013

Happiness with a Chronic Illness

"The purpose of our lives is to be happy." - Dalai Lama

What is the meaning of life?  That's always the million dollar question. Right?  I have always believed that the meaning of life is to be happy.  After all, what is life if you aren't happy?  All I have ever wanted is to be happy overall.  That doesn't mean that I wouldn't have any stress in my life what-so-ever.  No one can avoid all stress.  That doesn't mean I would be happy 100% of the time, either.  That's not realistic.  However, it is realistic to be happy overall or in general

I was there once.  I really was.  I was genuinely, truly happy.  I loved my job.  I was an emergency room nurse and I loved it.  I enjoyed going to work and if I had too many days off in a row, I was anxious to go back.  My coworkers were like my second family, or so I thought. I had friends.  I didn't have a ton of friends, but that's not what I've ever wanted.  I had a handful of friends who I loved and I believed, at the time, that they loved me back.   I had (and still have) a wonderful husband whom I loved more than I've ever loved anyone, aside from my kids.  And, speaking of my children... I had two beautiful daughters (and still do).  My husband had a decent paying job.  No, we weren't rich, but I don't need a lot of money to be happy.  We made enough to pay our bills and still have money left over to buy the things we needed and a few things we wanted every now and then.  In other words, we weren't worried about money for the first time in awhile (or ever).  I only worked my normal 3 shifts a week and didn't work a bunch of overtime.  Because of that, I was able to enjoy my days off with my daughters and have a little time to myself every now and then.  Lastly, I was in better shape than I had been my entire life and I was loving it.  Not only did I look good, but I felt good.  I was so happy to have found a "hobby" that I thoroughly enjoyed and was proud of myself for doing it... running, training for races, and lifting weights at the gym.  I also had the thrill of climbing two mountain peaks in Colorado.  I knew right away (despite my sore body) that I found a new hobby.  I was happy... very happy.

Here's the ironic thing... just a few short months later, it all went down the drain... and fast.  For the first time in my life I was truly, utterly happy... and then everything changed.  I got sick and lost everything.  Everything that made me happy, aside from my children and my husband, went away.  Talk about a high and a low.  Why did this have to happen to me?  Why, when I finally felt truly happy for the first time in my life, did it have to all go away so suddenly?

Now I was I dealing with the exact opposite of true happiness. Many people in this world know about the grieving process.  Many have gone through it when they've lost a loved one.  Now I have gone through the grieving process as well.  However, mine is over the loss of my own life, not someone else's.  All of the things that I listed above that were making me happy were gone with the exception of my kids and husband.  My job/career, my friends (at least the majority of them), my work "family", running, my body (in two respects -the fact that my body was in the best shape ever and that it worked, period), and money.

I had lost all of those things 3 years and 5 months ago.  I have been through all of the stages of the grieving process, including acceptance.  I am in the acceptance stage now.  I do accept that this is my life now.  I know that I cannot go back to the way things were.  I do not pine after my old life anymore.  Well, not completely.  I definitely miss all of those things, but I know that my life will never be the way it used to be.  I may accept that this is my life now, but that doesn't mean I'm happy with it.

So, the question is this... How can someone who is chronically, progressively ill be happy?  How can someone be happy when they're sick all the time?  For those of you without a chronic illness, go back to my comparison to having the flu (Explaining Myself Again), which is the closest you can come to imagining what  life is like with chronic illness, even though it's still pretty far from what my life is like.  Imagine how your life would be and how you would feel if you had the flu every other week.  And on the weeks that you don't have the flu you get tired easily, you still feel weak, slightly nauseous, and in pain.  In other words, you never feel completely fine.  How would your life be?  Would you be happy?

I know I'm not.

Many people go through rough patches in their lives.  The difference is that for most people, they are able to see a light at the end of the tunnel.  Most of the time, people can say "this too shall pass."  For me, and most people, it is much easier to get through something difficult in life (the loss of a job, divorce, the death of a loved one, etc.) when you know it's only temporary.  No, the death of a loved one is not temporary and neither is divorce.  However, in both of those situations people are able to go on with their lives after awhile.   And please don't get me wrong.  I am not saying that any of those situations are easy... far from it, in fact.  I am just saying that, in most situations, people are able to get through it and after a period of grieving and adjustment, they can continue on with their life.
According to the CDC, about 1 in 10 people over the age of 12 in the United States take antidepressants.  And, up to a third of people with chronic illness suffer from depression.  Here is an article about chronic illness and depression - Chronic Illness and Depression.  The article states that "depression is especially likely to occur when the illness is associated with pain, disability, or social isolation."  Sound familiar?  Mitochondrial Disease, at least in my case, causes all 3 of those things.  I am in constant pain.  I have to use a wheelchair to get around at least 60% of the time after living a very active life.  And, as I've discussed many times, I am definitely in social isolation.

"Happiness is not something ready made.  It comes from your own actions." - Dalai Lama

I have tried to be happy.  I have found things I like to do that doesn't require much physical activity, despite spending the first 30 years of my life enjoying only things that do require physical activity.  I have become involved in fundraiser after fundraiser.  Actually, I haven't become involved.  I've created them myself.  I have spent energy I don't have helping others (friends, family, and the needy), as much as people will let me, since I'm no longer able to do so as a nurse. I even tried volunteering at my daughter's school.  I couldn't keep it up because I had to cancel too many times because I was too sick to come in.  They need someone who's going to be reliable and actually show up when they say they're going to.  I've added friends, gotten rid of "friends", and changed current relationships to try to make them better.  I've seen 2 different therapists since I've been sick.  I've even read books on dealing with life with a chronic illness.  So, it's not like I haven't tried.

"The two enemies of human happiness are pain and boredom." - Arthur Schopenhauer

There are only so many things a person with a serious chronic illness can do to make themselves happy.  What can you do from your bedroom or couch?  And then there are only so many distractions from the things that make you unhappy.

Nothing I've done changes anything.  I'm still unhappy.  I don't know how to be happy while feeling bad/sick all the time.  I do okay on my "good" days, but I'm not talking about how I'm doing from day to day.  I'm talking about overall happiness.

"The greatest happiness of life is the conviction that we are loved; loved for ourselves, or rather, loved in spite of ourselves." - Victor Hugo

Unfortunately, a big part of my happiness relies on my relationships with others.  Why is that?  Well, I've always been a social person who enjoys being around others.  I like to talk. (Even those of you who don't know me personally should know that by now based on how much I ramble on in my blog posts.)  I spend day in and day out at home by myself with my only connection to the outside world being my computer.  (Remember that social isolation I mentioned above?)  That takes a toll on someone who likes to be around people.  I try to make plans with others but people don't always want to come here.  The ones who do only come on occasion.  Because of that I try to get out and meet people places but I just wind up cancelling on them 75% of the time because I'm too sick and/or weak to drive myself there, sit up and visit for an hour or more, and drive myself home.  And, as I've discussed in multiple posts, the amount of help and support continues to dwindle.  If it wasn't for my mom it would be pretty close to none at this point.  The stupid thing is that I don't even want help with anything anymore. Would I appreciate it?  Of course.  But at this point in time I'd be happy with people coming over to visit with me for an hour or two, but that's a rarity.  My own grandma doesn't even want to come over and spend time with me most of the time.

I don't know what I do to chase everyone away.  Maybe it's a vicious cycle.  Maybe people don't come over because I'm not happy.  However, the fact that I hardly ever see anyone makes me unhappy.  I thought I was a good enough actor to make people believe that I'm okay.  At least enough to where people still enjoy hanging out with me.  Maybe not.

Writing has been very therapeutic for me. Hence, the blog.  Getting it all out there for others to see almost makes me feel as though I'm taking my problems off of my shoulders and letting them float away into the world.  There's still a little bit inside of me that I have to deal with, but the majority of it is out there for everyone else to learn from and maybe even help me learn.  However, I almost didn't even write this post.  I have thought about it many times during the last month or more and every time I just didn't feel like it would help.  In fact, I have even thought about how many times I have written about the same things... over and over again.  Why do I keep writing about them? Because nothing's changed.  Nothing gets better.  It's just the same thing, day in and day out.  I'm sick and I wish I had more people around.  That is my life.

"The mystery of human existence lies not in just staying alive, but in finding something to live for." - Fyodor Dostoyevsky

For me, that is my children and my husband.  The unfortunate thing is that they are the only thing.  The good thing, though, is that I'm not selfish enough to ever leave my children, no matter how unhappy I am.

So, I continue on.  I exist.  I go through the motions of a life that I did not wish for... a life that makes me unhappy.  I pretend to be happy.  I pretend to be okay.... physically and mentally... while I'm not. That is my life... now and forever.


Diane said...

Hugs.. big big giant hugs.

Abby has been pretty sick, but I can honestly say she is happy.

Abby said she has the greatest sympathy, for those who had such strong bodies and then with a blink of an eye have it all taken away- she said she is the lucky one, she has always been limited- sure she has had years where she could do more, but she said she always knew she was different, but is just now realizing that what she thinks of a good day, a really good day is the same for someone who is healthy and has the flu.. she said she has nothing to grieve. She feels she is the very lucky one for being spared that.. sometimes I wonder.. Would it have been better for her to have a healthy body and live fully to have it ripped away? Or is it better for her to not have anything to miss?

It takes time- it really is a grief process. I bury myself in researching her, a daily activity. Some days if I breath to long I find myself saddened by what she will never have, when I should continue to focus on is what she does have...

She doesn't have many friends- she just doesn't fit. We stick by her and all of us are grateful that not only do we love one another, we enjoy each other. Sending good thoughts to fill your home with people- with hugs, caring and joy! I think about you often, and always wished we lived closer- I think I would enjoy having chat time with you over coffee!

The joy and happiness will come back, once you finish grieving losing so terribly much. be gentle with yourself- you deserve that.

Achelois said...

I just wanted to say something starting typing not really a clear definition in my mind what that something was.

The words come these days it seems more from my fingers less from any particular thought process I think. Perhaps due to lack of stimulation, combination of strong pain relief, other random stuff.

Thank you for this post. As you say you have written before similar and no doubt will write again but keep doing it because you are brave enough, honest enough to write it down. This helps you and others. I don't know how many people are actually happy the majority of the time. Those that are are lucky.
I haven't blogged or actually read many blogs in a fair while, I think I do that, go through phases. Anyway, I am just occasionally reading a few again. Not blogging though, lost my mojo on that.
The only people I see really are my immediate family. I actually think I have got really boring. Some days I don't mind my own company, others I am really lonely. Not just lonely but terribly bored also. Are these the components of unhappiness I am not sure. The days I feel lonely and bored are normally days I feel a little better, as very bad EDS days don't have time in them for the former!

Unhappy is very stressful. I wish I could wave a magic wand for you. I do. But in the meantime I agree with Diane's last paragraph so much.

Be gentle with yourself, as Diane says you do really really deserve that.