Monday, October 25, 2010

What I Hate Most About Chronic Illness

Take your pick on what qualifies me as chronically ill.  Chronic fatigue.  Chronic headache.  Chronic depression.  Or whatever diagnoses we haven't made yet.  Basically I feel horrible all the time.  On a good day I just feel yucky and drained and my head hurts.  On a bad day I can't get out of bed.

And, while there are so many ways this has changed my life, there is one area that bothers me the most.

It's difficult to not enjoy things I used to, to not want to do anything or be with anyone.  It's more difficult to want to do things but not be able to.  But the most difficult isn't the things that I am missing out on.  It's what my kids are missing out on.

For the first ten years of my marriage I was a doer.  I played with my kids.  I took them places.  I cleaned house.  I made meals.  I read to them.  I volunteered at their schools.  I did crafts with them. 

But that was a long time ago.  At about the ten year mark, my health started going down hill.  And I started to do less and less.  And because it was so long ago, they don't remember all those things.  They don't remember me pushing them in the swings at the park or having picnics on a quilt in the living room.  They remember me asking them to be quiet because my head hurts so much.  They remember me telling them to ask their older sister for help on their homework because my mind isn't clear enough.  They remember me sending them to do things instead of doing things with them.

I expected to teach them about hard work by working with them and by modeling the behavior.  But they see me do one small job and then crawl back into bed because I am so dizzy.  I expected to teach them about service by volunteering in various ways and doing family service projects.  Instead, I try to encourage them to work with their youth groups when there is a service opportunity.  I thought I would teach them spirituality by doing all the things our church suggests we do to teach in our homes.  I often don't feel well enough and so those things fall through the cracks and I have to be content with just getting them to church.

I planned to have a beautiful home where my children could find a place a refuge.  A place that was warm and welcoming to all who passed through our doors.  A place where our family could feel peace.  But I can't clean like I need to.  And I am often tense and isolate myself in my room, leaving them to their own devices which leads to mess and fights.

There are so many things I thought I would be as a mother.  So many desires I am unable to fulfill.  For years I waited, hoping that it was just a matter of time.  But it might not be.

This might be as good as I ever feel again.  And I am mourning that today.

Yes, there are great things in my life.  Yes, I have found other ways to teach and show love to my children.  Yes, I have found value in the life I have.

But it's important to allow ourselves to mourn our disappointments.  It is a loss.  And it makes me sad.

Oh, and this is my 100th post.  It's been just over a year since I started blogging.  It's amazing how quickly time passes.


A.Marie said...

Hi there! I just had to leave a comment on your awesome post!

I also suffer from a chronic illess...Crohns Disease. Yay me! HA! I used to think that I would do all of those things that you wrote about, but it just didn't quite happen that way! Some days are better than others, and I take full advantage of them. Just know that you are doing your best when it comes to your children.

I liked this sentence, "Yes, there are great things in my life. Yes, I have found other ways to teach and show love to my children. Yes, I have found value in the life I have."

Have a terrific day! :)

Grandma Nina said...

Robin, I'm so sorry you are feeling so bad. You are a great writer and that is a great way to extend your thoughts and love to your children.
Do you have good days where you feel better? I hope so. It sounds as though you are in such a dark place right now. I wish I could say something really profound that would help, but I don't know what that would be.
You are in my thoughts and I'll be checking back.

mama-face said...

i know of these sort of feelings. I will never ever say i know exactly how someone feels, but your thoughts mirror mine in many ways. Sometimes your words are like a little jolt to my system simply because I see myself in them. Please know that I in no way think that I know your thoughts exactly. I just want you to feel validated. I know what it feels like to be completely misunderstood. Or told to cheer up.

I like your thought about giving yourself the right to mourn what hasn't been. You have a gift at expressing yourself and have great insight. I love that you let yourself be completely free and open about depression.

congrats on the 100th.

Dawnelle said...

Thanks, Robin. I was trying to figure out an appropriate way to express something that happened recently and your last line gave me the right spot to go from. :)

dawn said...

I said it in a comment on your last post, but I'm gonna say it again... I think you are channeling me!

I too have chronic illness- which one? Who knows? It changes everytime see a new doctor.
So, a year ago I gave up on the docs and the meds and have been dealing with the pain, fatigue and other problems- very similar to yours- by trying to be active everyday- this could be vacuuming a room or taking a shower or walkign 4 miles at the park... whatever my body will allow that day works for me. I also spend as much time in fresh air and outside as possible. I feel better surrounded by nature- even if all I can do is sit on a lounge chair and read a book... I'm enjoying Mother Nature and the blessings God has given me.
And I do things with my kids- go to football games, soccer games, help at the ball fields, help with the youth group... some times I do a lot, some times I do a little... but I always try to do something... even curling on the couch with the 3 youngest- 12,13,15 - and have a family movie night... it's something they see and know is often difficult for me, but that I do it for them because I love them.

dawn said...

Oh- and that's what they'll remember later... that you loved them.

At least that's what my 21,26 and 30 year olds remember... me being supportive and loving unconditionally.

And it really feels good when they say it ... and they really mean it!

Eclipsed said...

I'm so sorry that you're struggling with chronic illness. As mothers I feel like we can never really live up to our own expectations. I wish I had something more insightful to say. Hugs to you

Anonymous said...

I have a lot of the feelings that you do - minus the kids - and that's the big thing - but I feel like I might never have kids because of this - and if it I did I wouldn't be a very good mother -

So in a way I feel your pain - and yes - you have every right to feel the way you do - but you also need to give yourself credit for the things you DO do for them - no matter how small it may seem.

As long as they know they are loved that's all that truly matters. Coming from someone whose mom would always "show" those things - lead by example sort of thing - and how on the outside everyone loved her - said she seemed like the best Mom - only to have her beat the crap out of me at home... so when it comes down to it - what they'll remember the most is how much they were loved... and you love them more than anything...

Running Circles said...

This post hits really close to home for me Robin and I'm finding it difficult to find the right words. I guess the best you can do sometimes is just be honest and by doing that your children can find understanding and acceptance. None of us are perfect, but explaining the situation can go a long way and I think you have done that very well here. Thank you for writing this post; it helps me. I hope you find better days soon!

Libby said...

Miss Robin - it's very hard to read these words you write about yourself. From my perspective you are the person that brings a smile to my face almost daily. That you are not smiling also makes me sad. As always, thinking of you. Remind me to tell you the story of my very cathartic yoga session last week... trust me it's relevant to your post.

Anonymous said...

Parenting is difficult enough to maintain the expectations we have on our role as a mother, but not feeling well chronically really bumps up that difficulty level. But I have learned that sometimes the house stays messy - if that means giving a little more love. Giving responsibility to siblings for leadership opportunities is priceless. Maybe there is a silver lining or double edge to the sword of chronic illness, or parents exhuasted from working overtime to just make ends meet - and that is our children gain more meaning for what surrounds them and what they do.

Your post reached out to me on so many levels - and I identified with so many of your struggles. You are a mom with a vision, you have set the bar high (yeah) and struggle with achieving those goals - sounds like the recipe for a terrific, loving mom!

Lisa said...

Thank you for sharing this. When I read posts like this, it makes me feel like I am not alone! We love you!

Kazzy said...

That must be so hard. I am sorry you feel so exhausted a lot of the time. Best wishes.

Kristen said...

Oh,Robin,I wish I could make it all better. I think that one of the hardest part of chronic illness is the guilt we feel as a mother. I feel like my kids are deprived because of my illness. How is that fair to them? Have you ever gone to Dr. Purser? Just to get rid of the headaches with the progesterone he prescribes, is so worth it. I have gone through all the stages of mourning my former self. I think it is important. I'm sorry that you are going through such a dark time right now. I feel your pain...