February 24, 2015

My Great Expectations: Living with Chronic Illness

I have chronic illness.

Not Dr. Dre's album or the strain of marijuana (though that is tempting in a fierce bout of pain).

Chronic, according to Merriam-Webster:

Definition of CHRONIC

a :  marked by long duration, by frequent recurrence over a long time, and often by slowly progressing seriousnessb :  suffering from a disease or ailment of long duration or frequent recurrence 
a :  having a slow progressive course of indefinite duration—used especially of degenerative invasive diseases, some infections, psychoses, and inflammationsb :  infected with a disease-causing agent (as a virus) and remaining infectious over a long period of time but not necessarily expressing symptoms

I have Celiac disease, Hashimoto's Thyroiditis and another fistful of autoimmune conditions that make for excellent dinner conversation (irritable bowel, interstitial cystitis, vulvodynia, pudendal neuralgia).  I also have endometriosis but that was cleared up by removing my appendix, cervix, uterus, fallopian tubes.  I had an ovarian cyst and had to have that ovary removed.  I've been on a gluten and dairy free diet for almost 2 years.  It's helped tremendously but I still struggle with symptoms.

I'm in pain every day.  I'm exhausted all the time.  I have to have an afternoon nap just to make it through the day.  And my days really aren't that frantic.  I'm not employed, my only child is 7 and is in school.  If I can't nap during the day, I usually have to make up for it the next day.

I'm not sharing all these details to get pity or because I'm some sort of hypochondriac.  There are people everywhere that have it so much worse than I do.  I'm sharing this because I know there are people going through the same or similar circumstances.  I'm hoping that I'll be able to help or comfort someone by sharing my struggles.

I feel ashamed a lot.  I feel lazy.  It's hard to have great self esteem when I spend most of my time resting.  I'm only 32 but I live like I'm three times older.

Last week we had a snow day.  My husband went to work and my son was upset because he wanted to play in the snow.  I told him I'd go with him and he said, "You can't because you're sick."  That just broke my heart.  He's at the age where he's starting to understand that I'm not like other moms.  That I sleep A LOT.  And that kills me.  (For the record, we did play in the snow!  He was Wolverine with icicles for claws and I was Storm by chucking handfuls of snow around.)

Okay, this pity party is going somewhere.

All of my symptoms and emotions cause me great anxiety.  There's the tug between what I think I should be doing and what I actually feel like doing.  I often feel like I have no worth unless I have something to show for the day.  A few pages of my script.  A purse or bracelet for my Etsy shop.  Folded laundry.  Some days I get a lot of things done.  Some days, many days, I don't have anything to show for my existence except a dent in my pillow.

The anxiety recently had become too much.  It wasn't good for my body to be that stressed all the time.  I've made conscious efforts to stop myself in the middle of my anxiety and meditate, relax or pray.  I found this gem on Pinterest:

It's not easy but it's great advice.  I also found this amazing article by Lisa Cohen.  I love this quote in particular:

When it comes to making the daily decisions about our illness it's easy to rely on instinct. Occasionally, however, our instinctive decisions about dealing with our disease can lead us astray. What we once believed about our body and its limitations when we were healthy may no longer apply, and yet we can still have those same clich├ęs running through our thoughts, trying to dictate how we live.

This quote made me realize that I needed to make some serious changes in my attitude and priorities.  My instinct was pushing me to do, do, do.  But that wasn't healthy physically or emotionally.  It's difficult because no one wants to be the "sick" person.  I want to be alive and present and life of the party.  I want to be perfect.  Life is full of options and I want to pick them all.  That perspective sounds romantic and fabulous but it will only lead to heartbreak.  Trust me.  I realized that I needed to lower my expectations.

Lowering expectations sounds very depressing.  It is a little bit.  But holding onto expectations for a life that isn't possible at the moment is much worse for the human spirit.  As I've lowered my expectations, I feel peace.  The anxiety leaves and love fills it's place.  Love for my family that helps me.  Love for myself, even if I'm not that fabulous person I wanted to be.  I find I have some pretty cool qualities even if I don't live up to the expectations I wanted.  I have many blessings and I need to focus on the now.

I hope this helps someone out there.  Feel free to comment and let me know how you cope with chronic illness.

1 comment:

Ana Martinez said...

I know that illness can be really hard. I had a really close friend who has an illness for the rest of his life. It was found when he was 17 but doctors are not really able to do anything because it is a rare illness.. I am amazed by the way peole cope with things and trials of this life and i admire you for that. One thing that helped my friend was to know what was he's real purpose of life? how can he get out the most about it? Right now, he is about 24 and is one of the most people that i have ever met that feels really grateful.. No, He still has the illness.. And there is ways to live your life even with the struggles that it brings everyday. What is your purpose here? do you know what you want to accomplish? let me know. and i know your blogg does help people, so thank you for that.