Showing posts with label illness. Show all posts
Showing posts with label illness. Show all posts

Wednesday, April 6, 2011

My Vulnerability

This is something I've been feeling a need to write about. I've hesitated doing it for many reasons. For one thing, it doesn't exactly go with the theme of my blog, and for another it's extremely personal. It's something that's been deeply ingrained as part of my life for over 15 years now.

My husband is chronically ill.

We have five children and we struggle just to get by.

He's been diagnosed with both Chronic Fatigue Syndrome and Fibromyalgia. As far as we know he's had varying degrees of these illnesses for about 20 years now. I've known him for 15 years and we've been married for 12 ½ years.

He was relatively healthy when we were dating. His health goes in waves. He has periods of relatively good health and periods of severe illness. He has depression, pain on a daily basis, struggles to fall asleep and stay asleep, and working full time has become impossible. He was recently awarded disability status with the government after a two-year process of applications, three denials, appeals, and finally a hearing before a judge. He'll start receiving financial compensation for that. We think the disability income will make it possible for us to barely be able to pay our own living expenses, but we won't know for sure until we start receiving it.

We live on very little. The only debt we have are his student loans which are currently in deferment. We own one vehicle which is 18 years old and getting too small for our family, and we don't know how or when we'll be able to get a larger one. We've never owned a home and we get by on assistance programs to help us with rent, food, and medical coverage.

I do a lot of things to help make ends meet. I cook the majority of our meals from scratch. We don't eat out. I make my own laundry detergent. I clean with food items (vinegar, lemons, baking soda, etc.) that we can get through our assistance. We use cloth diapers because we can't afford to buy disposable diapers. I don't use paper products like napkins or paper towels. We use real towels and wash cloths that can be washed and reused. I use a Diva Cup. Our kids' clothes are all hand-me-downs from cousins, and most of our furniture are also hand-me-downs and outdated. If we need to go somewhere that's within walking distance I make an effort to walk with the kids. I'm sure there are other things I do that I can't think of at the moment.

I've found that these things help us save a lot of money, but they also help give me a greater sense of self-sufficiency. It sounds like an oxymoron to say that I'm striving to be self-sufficient when we're in a situation where we depend so much on assistance from government programs and friends and family. I have to do every little thing I can to feel that I'm at least doing something to contribute to our family's well-being, and these things help.

We don't have any credit cards. We don't buy anything we can't afford, and there's very little we can afford. I work doing freelance writing because I can do it from home. It's not enough to support our family, but it helps pay for gasoline and some other necessities. I make enough money each month with my essential oil business to pay for my monthly order, which is a blessing to my family's health.

I've tried to work hourly jobs, but it hasn't worked for us. My husband isn't currently well enough to take care of the kids for me to work outside of the home. We decided early in our marriage that we wouldn't put our kids in day care, and our family that live close by all have their own families and health issues to take care of so we can't rely on them to help take care of our kids. We feel strongly that it's the parents' responsibility to raise the children, and that has been a conscious effort for us.

I still owe money to my midwife for her services during my last baby's birth almost two years ago. Thankfully she's understanding and willing to work with us.

I'm not looking for pity, and I'm not really sure why I'm writing about this. I just feel a need to get it out there. Maybe there are others out there in similar situations who can relate on some level.

I can honestly say that I love my life. While it's extremely difficult, I've come to realize that no matter a person's financial well-being or circumstances, every person on the earth has something that's extremely difficult for them. When I hear about the struggles that other people go through I feel deeply sorry for them, and it helps me appreciate my own life and all the trials that come with it. I wouldn't change anything about the choices I've made and the steps that have brought me to this point in my life.

I have hope for the future. I hope that a full recovery may lie in my husband's future, and if not, that we'll be able to keep moving forward and appreciate each day. That's one thing I've learned: to try to appreciate every little thing. I get depressed at times and really feel sorry for myself, but when I think about the wonderful things in my life I feel happy.

Most of the best things are the intangible, immaterial parts of my life. Living in a beautiful area with varying seasons. The Rocky Mountains, sunshine, and fresh air. Knowing who I am and understanding that the work I do as a mother of raising my children is the most important work I'll do in my entire lifetime. Seeing my children grow each day and watching their developments. Hearing the words they speak, seeing their bright smiles, and all the crazy things they do. The kisses, hugs, and snuggles. Little hands, tiny toes. Watching them learn and excel academically and seeing their personalities continue to unfold. My religion and connection with God and my Savior Jesus Christ.

My husband spends much of his time at home and often can't go places with us. I've heard people comment that I'm like a single mom, because most of the time people only see me and the kids. I firmly disagree. Even if he can't do the physical things to support us, I have his support. He backs me up emotionally, mentally, and spiritually. He encourages me to do the things that are most important to me, and he honors me as his wife and the mother of his children. He gets to spend a lot of time with his kids when other kids' dads are spending countless hours at work.

It's not ideal, but I don't think anyone leads an ideal life. It's MY life, and I'm grateful for it.