A Caregivers Perspective. Part Two.

Mary Jane is a selfless caregiver of her husband and daughter. She shares some of the struggles she has encountered on this journey. Daily she demonstrates what a hero looks like. I hope her story will inspire you.

Fear of getting unwell

Written By: Mary Jane

Keeping on alert all the time can be exhausting and tiring. My husband was officially diagnosed in 2010 with Systemic Lupus Erythematosus and our daughter was diagnosed in 2013

They both suffer badly and daily from this terrible disease my husband stopped working Christmas 2013 after being hospitalized due to the lupus attacking his spine this has created stress but also is easier as now I don’t worry about him driving he has since had a number of TIA‘s and neurological problems has spent 7 out of 12 months in hospital he is no longer able to drive as he forgets where he is gets very disoriented easily, also his medication does not allow him to be able to drive safely.

Our daughter was able to get an extension on finishing her schooling she has been in and out of hospital due to kidney problems also caused by the lupus but she is able to do her college degree from home when she feels she’s ready. The lupus for her has changed her but also changed her relationships with her friends, as a lot of people in their early 20s are able to do their own thing without thinking twice.

We have two other children that help out a lot but they also take on a lot more than children their age which as mum I worry about as its not normal for people their own age to be concerned about dad falling or their sister being able to get through the week without her kidneys being unable to function.

I also home school our younger two children as God lead us to do this 4 years ago and now I understand why as it actually is easier for me, that way I can stay home more and watch over my sick husband and daughter. It also makes it easier for our children as they see what happens on a daily bases and when they have to go to hospital its easier for them to keep the daily routine going they also take it in turns to look after Daddy by doing their days worth of school in his room where he is as hes unable to be out of bed a lot also if he is in hospital they take their school with them to do and it helps him to not feel left out.

As a care giver of two with Lupus it is difficult to balance the daily things that need doing but also not being to busy to not have any compassion and care.I now notice that I do get tired but I will never tire of looking after them as I married in sickness and health.

The health is the easier part the sickness is the test part I miss my husband hes my best friend but his memory is very bad now and I have to try not to be offended of feel rejected when he doesn’t remember anything that we did together or I did for him.  He gets very anxious when I’m not around or if I have just gone to the chemist and he wakes to the children here but me not which makes him very anxious.

Also as a mum I must always remember that my daughter relys on me to be mum but also to know what to do when shes unwell, or a doctors appointment, or when someone is putting pressure on her like a friend wanting something from her that’s just not possible as her friends have been able to get engaged or go out as a young person I know shes watching it all wondering whats going to happen but I also pray that she is able to trust me and know that I will always protect her.

And for our other children they are fabulous at helping but I always have to keep in close balance that they need mum. It’s a lonely road for a carer your constantly putting fire out and constantly watching for things that never had to before it puts a strain on everything.

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Book Review

I love to read. At times though it is difficult for me to find a good devotional. I am not a big fan of the yearly devotionals at the moment, not for any particular reason. I received Jesus Today by Sarah Young as a gift. This is probably my favorite devotional. The author talks about herself for a few pages. I found her story relateable and inspiriting. She wrote the book while ill. Later finding out she has Lymes. The only compliant I have is I wish she had written more about her personal journey.

The devotional is for 150 days. The format is lovely, easy to follow, and the devotionals are short. It is ideal for a busy schedule. The way the book is written is unique, it is as if God is speaking directly to you. Everything is aligned with scripture. I feel like a lot of prayer went into writing this book and that the Holy Spirit spoke though Mrs. Young. I have enjoyed every page. I have grown closer to God, connected with him in new ways, and learned a lot.  Each day there are generally three Bible verses written out, which is convent for people on the go. There are pages just with a Bible verse or an encouraging quote as well. I love Mrs. Young’s writing. Once I am complete with this devotional I will be reading another written by her. I strongly recommended this devotional.

Here is one that I enjoyed:

“Trust in Me forever for I am the Rock eternal. It is easy to trust me for awhile-especially when things are going well in your life. But I am calling you to trust in me at all times, no matter what is happening. I understand what a difficult assignment this is and I know that sometimes you will fail this venture. But I continue to love you perfectly even when you don’t succeed. Let this assurance of My unfailing love draw you back to Me-back to trusting Me.

Though your trust is imperfect and unsteady, I am the Rock eternal- absolutely steady and unchanging. You can rely on Me! When your walk through this world feels wobbly, remember that I am your Rock. I always provide a stable place for you to stand. I can easily bear all your weight, including the weight of your problems. So come to Me when you are feeling heavy laden with worries. I invite you to lean on Me-Trusting Me with all your heart and mind. “
“Lean on, trust in, and be confident in the Lord with all your heart and mind and do not rely on your own insight or understanding. ” Proverbs 3:5 AMP
Share your favorite devotional in the comments 🙂

My Faith

I’m fairly certain that I have mentioned my faith on my blog a couple of times, briefly. I have been a Christian nearly my entire life and my faith plays a big role in my life. I was saved at the early age of three years old in Sunday school.  People tell me from a young age I knew a lot about the Bible. I had an extremely close walk with God. I would tell my mom that God talked to my heart. I understood that prayer was a dialogue not a monologue. I understood the meaning of communion and a lot of Bible stories. I adored going to church, Sunday School, and Vacation Bible School. With all my heart I wished that Sunday School was five days a week and actual school was one day a week. Things made more sense to me at church and I fit in much better.  I counted down the years until I would be able to join the Youth Group. My favorite television shows included The Donut Man, Veggie Tales, Mrs. Charities  Dinner, and other shows on the Christian station. Outside of the American Girl Doll books every book I read had a Christian aspect to it. Despite the fact I was a shy girl, I was bold and confident in my faith growing up. I wasn’t afraid to speak up about it, even if that meant I did not have many friends and that kids would tease me. It was me and Jesus and that is all that mattered to me.

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Once my middle school years rolled around I overflowed with excitement because I was finally old enough to join the Youth Group. I was extremely involved in my church during my middle school and high school years. Anything and everything I could do, I did. I spent as much time as possible at church. During my middle school years in addition to Youth Group I volunteered at every function the church had, was in the bell choir, puppets, and attended every youth group meeting. I enthusiastically participated in 24 Hour Famine. Just before we broke our fast I grabbed my friend informing her I couldn’t see, then passed out. Once I woke up I wanted to know when the next famine was. Despite passing out I had a lot of fun.  I did not have many friends at school so I would bring my awesome looking Revolve Bible to lunch to read. (If you are a teen girl check out the Revolve Bibles! They look like magazines, are super cool, and have lots of epic things in addition to being a Bible.)

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Even though I struggled with my faith a bit in high school, it was still vital to me and I was just as involved in my church. I went on missions trips with the Youth Group and feel in love with mission work. I went on several retreats as well. I still adored reading. The Christy Miller series by Robin Jones Gunn impacted and changed my life. During my teenage years I battled some depression. It was difficult but in the end I became closer to God. I learned many valuable lessons through that chapter. Things changed in my home church, some ministries crumbled. I was on a committee and still volunteered frequently. I also helped run a retreat for five years. When I was sixteen years old I went to Taize France with the conference through my church. It was a pilgrimage and an indescribable experience.

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My dream had always been to go to a Christian college, which is what I did once I graduated high school. However that was not God’s plan for me. (Of course I was less then happy about it). The school I choose was three hours from home. I had high hopes for my health. I thought the doctors there would be the best and would help me feel better. But that was not the case. None of them wanted to help me and my health quickly declined. After finding blood in my urine over Thanksgiving break I had to stay home indefinite.  Having to come home was bitter sweet. I knew I had to do it yet I wanted to prove that I could be on my own. A lot had changed in my home church, as I mentioned before. As much as I loved everyone, I wanted a fresh start. Something different. But that’s not what God had in store for me.

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I have been back home for a little over a year now. Things have gotten better at my home church. The spiritual growing pains have eased and I am able to see how blessed I am to have my church family. My walk with God isn’t where I want it to be. There is always room to grow. I have learned to trust him in new ways. I know that He will guide me and provide for me everything I need. Though I don’t know what the future holds, God does. I am content where I am right now, waiting for His direction and learning.

God Bless. Sending lots of Spoons, prayers, and hugs ❤