Sunday, April 20, 2014

What happens when life throws a curve ball

Chronic illness hurts many more people that you would think. At first glance, those of us afflicted seem to suffer the most. Sometimes, in the case of "invisible illness" we are mocked, discredited, or even abandoned - because, after all, we look just fine so what's our problem? There is a reason 75% of marriages don't survive chronic illness. As our bodies begin to fall spectacularly apart, suddenly we are unable to work, support our families, or even care for ourselves. There is no way to prepare for this kind of devastation.

When plans change

When my husband and I met, we loved the fact that we both enjoyed the great outdoors. I moved to British Columbia from back East because I loved the raw, rugged beauty of the region. We would usually go hiking every week-end. When we decided to get married, I envisioned being one of those super active seniors, in great shape, outpacing those young folk.

Then, in 2008, a simple ankle sprain in the parking lot at work. I thought it was nothing. As the pain escalated, I began icing it, elevating it, doing all the things I knew to do. Nothing could have prepared me for the mind-blowing pain that ensued the first time a doctor examined it. I became terrified of the pain. Two years of that pain and fear turned into severe depression. Then, my system collapsed.

I was hit with such profound fatigue that I was stopped dead in my tracks. For over two years I pushed and pushed to heal my ankle and overcome my pain. Then my body simply didn't have anything left to fight with. My husband watched helplessly as my body gave out one piece at a time. I even remember thinking -
I wish I only had pain

Solitary confinement

My fatigue and pain have continued to escalate. I am now mostly housebound and in severe pain most of the time. This doesn't just affect me. My husband is strong and healthy. Not only do we not get to do things together, most days I am too exhausted to even engage in conversations. He asked me once if I ever got lonely. I told him I didn't have the energy to. It takes every ounce of strength I have just to function in some capacity. While he can do things for me, he can't help me get well. I can't even imagine how lonely he must feel; how hard it is to live with me and see me like this day after day, year after year.

Looking for blessings

I share this nightmare with you for two reasons:
  1. If anyone is out there and feeling abandoned and alone, I want you to know that you are NOT alone!
  2. There has been so much good that has come out of all this!!
I'm not going to feed you a load of {you know what} and tell you that it's all rainbows and sunshine now. However, I have seen tremendous blessings come out of this. I know it sounds cliche, but it is true that what doesn't kill you makes you stronger. Here are a few of the blessings I never expected:
  • I found a doctor who became my champion. He helped me get in to see a fantastic pain specialist who wasn't afraid to deal with my pain. Not only do I give thanks for them all the time, but I pray before each appointment. The changes have been amazing. 
  • We are now living in a region that has captivated my heart and soul. We are living here by faith because we went from a city centre to a tiny community. Even though I am mostly housebound now, I can look out our window and marvel at the beauty that surrounds us.
  • Our marriage has been strengthened. Have you heard the expression "trial by fire"? That is what we have been through. Between health and financial issues, we have lived out the wedding vows we took before God. I remember one day saying to my husband "I would understand if you chose to be with someone else". I was consumed with guilt and felt I had ruined his life. I am so thankful that I am married to a man who has chosen to stand by me. God pulled us back from the ledge and we are stronger for it.
  • I have met the most amazing people in the pain/fatigue community. I have formed new friendships, many with people I have never met - friendships I know will last a lifetime.
I certainly never would have chosen this life. It's the hardest thing I have ever had to deal with. However, I choose to thank God for each day because it means He has given me another chance to learn, grow, and hopefully help someone else. 

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I know you are hurting. I wish I could take your pain away. Would you be willing to look for the blessings in your life? If you are not ready for that, I understand - how about helping someone? Someone somewhere is starting down the same path as you. Your experiences, your victories, your ability to relate to them and to believe them could be the lifeline they need. Would you be willing to be their blessing?

Carry each others burdens, and in this way you will fulfill the law of Christ.   Galatians 6:2

Saturday, April 19, 2014

Living Like a Caged Animal

Today I was struck by the irony of the tiger image I chose for this blog. Today I felt like a caged animal. As I lay in bed looking at the sun shining outside my bedroom window, I desperately wanted to be out enjoying it. Yet I can barely get to the kitchen to pour myself a cup of coffee.

I have accepted my fate, but...

I admit that I still struggle with this, but I am getting better. Some days are easier than others. One of the hardest things is trying not to live a selfish, self-absorbed life. That is easier said than done when it takes all the strength you have to have a conversation or even drag yourself out of bed. I feel like I should be doing more! What is that old saying?
Don't "should" yourself!
 Oh, yes, OK, now I remember.

Bloom where you are planted

This is another old saying {I seem to be full of them today}. To bloom where you are planted means to do the very best you can where ever life seems to put you. There are many things I would love to do that I simply can't do. However, there are also things that I can do - I just need to look a little harder for them. Of course, not everyone with ME-CFS has the same level of function. I'm not suggesting that you compare yourself with others and then feel all guilty and worthless {been there}. I am asking you to look for things you can do while still honoring your health needs. Here is my list thus far -
  • Phone a friend; if I'm too tired then email or text
  • Share information I discover about my illnesses
  • Share resources with my doctors so that they can help the next person like me
  • Love my husband, encourage him, look for his goodness and help him celebrate it {because we all want to do more or be more, don't we?}
  • Ensure the kitchen is clean-ish so that my husband doesn't have to deal with it in the morning {this doesn't always happen, but it is my goal}
  • Be a bright light in what can sometimes be a dark world {this is a work in progress}
Bottom line is don't EVER let this illness make you feel worthless.  Finding that silver lining can be a challenge... OK, there are days when it feels impossible. Don't give up! Let people see you for the beautiful flower or mighty oak that you are. Bring your beauty into their life. Cover them with your inner strength. Remember, it takes great courage to live well with ME-CFS. You have that strength inside you.

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Are you struggling to find meaning in your life since ME-CFS showed up? Don't give up! Ask God to show you what you can do and start making your list. You could surprise yourself. If you are doing well in this area, what helped you get there?

"No one lights a lamp and puts it in a place where it will be hidden, or under a bowl. Instead he puts it on its stand, so that those who come in may see the light.   Luke 11:33

Thursday, April 17, 2014

A place just for us

The feedback I have received from people with ME-CFS is that it is hard to connect with other sufferers. This is why I am creating this blog. Just like I have a dedicated chronic pain blog (Conquerors Through Christ), I want to create a place specifically for people with ME-CFS. I hope to address the unique weirdness we deal with day after day.

I look forward to reading your comments and appreciate any suggestions you may have.