I have been playing around with this post all week. Trying to decide if I wanted to write it…
I don’t want pity. I don’t need people to fuss over me.
I DO need prayer, support, friendships, love, and occasionally a little understanding. So here I go…
I have a chronic illness.
(man that is difficult to write some days!)
I can look back and see that I struggled even in my teen years with my health- but the symptoms were so random that I was dubbed “over-sensitive”. I believed that I just had a low pain threshold- that I was making mountains out of molehills and over-reacting. So I learned to not voice every ache and pain. In my 20s I learned to SILENTLY deal with constant muscle weakness, muscle and joint pain, muscle spasms, ribs (and other joints) dislocating and subluxing on a regular basis, bone spurs in my back, tendonitis in various joints, migraines, stomach discomforts, crushing fatigue, insomnia, regular dizziness, nausea, hives, anxiety, and occasionally depression. All this on top of Hashimoto’s (autoimmune thyroid disorder). Note the word silently- I’ve struggled even revealing the extent of my daily pain to my husband let alone my doctors. Why? Because the moment I give them the list of my symptoms and how often I experience them, they look at me like Im a hysterical woman. After all, I’m too young to feel this much pain and they have tested me for lupus 5 times- therefore it MUST be in my head.
I still have no official diagnosis. I have seen 6 different specialists. Each one has given me the ‘your crazy’ look. After really pushing my regular doc, we finally discussed Ehlers-Danlos Syndrome type 3 (hypermobility) or hEDS as a real possibility. The difficult part about that diagnosis is that even though it’s a perfect fit and finally explains EVERYTHING- it’s incurable and untreatable. That is to say- they treat the symptoms and manage the pain. I also have to be referred out to more specialists to be officially diagnosed (neurology, rheumatology, and geneticist).
Now that you know the what…
let me tell you about the healing I experienced…
Last October after hitting a wall with my cardiologist I was pretty devastated. That was a tuesday. The next Saturday evening I went to church and we had a guest speaker from California. A man I had never met- who knew nothing about me. He called me out of the crowd and knew so many details about me and what I was experiencing. He prayed healing over me. The next day I discontinued all my meds (except my thyroid med). I had a few months of feeling pain free and energetic. It was such a gift.
Then Christmas came and my thyroid started acting up once again- we adjusted my meds again and things just continued to get worse. Over the last 4 months I’ve gotten my thyroid under complete control, but my pain has continued to increase. Some days are a debilitating 7, others are a manageable 3 on the pain scale. This past week was up in the 7s; I have lived with my heating pad, athletic tape, and knee brace.
So why the spoons
The spoon theory is a wonderful analogy created by Christine Miserandino to explain what it was like to have Lupus. It has been adopted and recognized my many with chronic illness and disabilities. I was first introduced to it when my sister shared it with our family after her own diagnosis of lupus.
Here is a link to her story:
Here is an excerpt from her article:
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
I know this is about lupus- but in many ways how I feel is much like this.
I have to think about my energy ALL THE TIME. Many days I can’t manage without a nap- and that doesn’t take into consideration the pain I feel for days after physical activity.
How do I cope?
(IF YOU READ NOTHING ELSE READ THIS!)
How do I take care of my soul- how do I feed it? How do I emotionally take care of myself?
Music. Art. Creativity. Friendships. Laughter…. and my heating pad 🙂
Not to mention therapy, my family, my faith, my mentor, and my church.
It’s so easy to operate in fear and what-ifs. Its my instinct to want to shy away from things for fear that it will render me useless on my couch the rest of the week.
But I mean it when I say: GOD DOES NOT INTEND FOR US TO LIVE IN FEAR!
He has called me to leadership, to worship, to women’s ministry, and maybe down the road to preach. He has given me promises of hope and a future. On my hard days I hold to the promises. He has never promised it would be easy or the timing of these things- but I trust Him fully. I believe in the waiting and I believe that He holds us in these patterns of waiting out of love for us.
My health (or lack of) WILL NOT HINDER GOD!
If I believe He is who He says He is then I have to believe that He can and will make these promises for my life come to pass.
And because HE TELLS ME SO:
I am strong and full of life
I am steadfast, no compromise
I lift my sails, to the sky
I’m gonna catch the wind
I am bold, no fear inside
Spread my wings, open my life
Like an eagle, whose home is the sky
I’m gonna catch the wind
Your faithfulness will never let me down
I’m confident I’ll see Your goodness now
I know You hear my heart, I’m singing out
There’s nothing that can stop Your goodness now
Every day I pray for God to lift this- to take away my physical pain. I know He can- I experienced it once.
I believe He can again.
Until then I operate in love not fear.