Friday, March 30, 2012

Chronically Coping

Photo mine. 
I received this letter last week:
I was diagnosed with Sjogren's in February and someone suggested that I read your blog and have loved it! I do have a question for you. I have been really struggling with the diagnosis and how it affects my family. I have 3 kids ages 8,5 & 3 that I homeschool while my husband is in school. He has had a crazy schedule this semester while my fatigue and pain have climaxed. The poor guy is so sweet about helping out around the house but I feel like I am such a burden on my him. I am sure that I am not the only one that has felt that way. So, if you did, how did you get over it? How do you adjust your thinking that your pain and fatigue is just a short term thing to a long term thing?
Isn't that a great question? And isn't that a difficult question to answer?

I replied to her email with my own situation and perspectives in mind:

You're right - we are not alone in dealing with the enormous "wrap your head around" issues that accompany a chronic and significant disease like ours. What has helped me is to keep reading and learning as much as I can about autoimmune disease, and adjusting to chronic illness. It seems that when I can understand more about what is happening in my body, I am able to verbalize that better to John and those around me, starting some little domino effect of sorts. If we all have some level of understanding of the physical changes and aspects of Sjs, especially when often we look as though there isn't one thing wrong, then my family adapts, and more importantly, I adapt too. For me, knowledge is key to adjustment. 
     I think that we all have to eventually go through the classic grieving process : denial, anger, bargaining, and acceptance in grieving the loss of our old abilities. My faith has helped me enormously through this process. 
     But the guilt......ah, the guilt. I still have a very difficult time watching John scrub floors and lug laundry around in addition to working his more than full time job. But I have a mantra: I'll do all that I can do. It seems to help. There's still days that I overdo and pay huge consequences, but we have slipped into a kind of a routine and that's helpful too. John helps me to not over-step my energy limits frequently by questioning my motives when I dive into a project or a task that will be physically challenging.

Other authors have offered a variety of resources to help deal with this life-changing disease, and they're all good:

A Body Out of Balance by Nancy Carteron and Ruth Fremes
A Delicate Balance - Living Successfully With Chronic Illness by Susan Milstrey Wells
Peripheral Neuropathy - When The Numbness, Weakness, and Pain Won't Stop by Norman Latov, MD, PhD
The Autoimmune Connection by Rita Baron-Faust and Jill P. Buyon, M.D.
The Balance Within - The Science Connecting Health and Emotions by Esther M. Sternberg, M.D.
The New Sjogren's Syndrome Handbook (Sjogren's Syndrome Foundation) by Daniel J. Wallace
The Sjogren's Syndrome Survival Guide by Terri P. Rumph Ph.D, and Katherine Morland Hammitt
You Don't Look Sick - Living Well with Invisible Chronic Illness by Joy H. Selak and Steven S. Overman, MD, MPH

I've blabbed about my adjustments to chronic illness multiple times, read this and this and this...but I KNOW that y'all have your own perspectives, which are so important to share with other sjoggies.

How would you answer this question? I'm looking forward to seeing your responses. Leave them in the comments.


Blogger Mama said...

It has really helped me to read other's blogs. To know there are other people out there going through the same things gradually helped me come to grips with everything. There are so many great blogs out there now, written by the chronically fabulous!

Writing about it on my blog has also helped me. It's very therapeutic to get my worries, health issues, and concerns down for myself. It's an added benefit reading the comments from my readers. So I wouldn't necessarily suggest blogging for the whole world to see, if the thought scares her. But writing in a "health diary" might help.

Shannon said...

I so agree about giving yourself time to grieve the loss of your old life. You really will grieve and you should try to acknowledge this process and be mindful of it. You also may find you need to FORGIVE yourself. For all of it. Grieving, feeling guilty, for your body "failing" you and more I am sure I just can't think of in this moment.

I grieved. I was angry, too. So very angry at myself. Disappointed that my life may only amount to "this much" and never anything more. Like all of a sudden all of my future choices were forever gone or at the very least, not attainable any more.

So I had to forgive myself or go stark raving mad! Ok going mad is relative.. or was it my relitives I thought were mad? lol and humor, I HAVE to laugh at myself or my situation and try to find the half glass full bits. If I did not laugh, I'd cry. So this is where I am right now. I'm trying to laugh. Much like Julia does - it's what keeps me coming back to her site. Thanks Julia! :D

I'm still working on the feeling guilty part. That's tough. I'm like Julia there too. I do whatever I can. Then I make sure that my DH knows I do appreciate him and all he does. I thank him often and remind him that I love him.

Anonymous said...

I agree with you, to read other blog/stories, to read books about the illness so it's not something "strange" "unknow" anymore.
To make a blog too, so I feel "active" against the illness. But yes, it's hard to accept that there is a before Sjogren, and an after it. But the after Sjogren could be good, fun, happy too ! It's a grief work to be done.