Frustrating Fatigue

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I posted this quote a year ago. How fitting I should stumble across it again, now, in this season of life.  I am weary…but this time it is not a weariness of soul, but rather a weariness of body.

My body is in a full blown flare up. It is crazy how quickly my body has advanced from being symptom free 3 weeks ago, to double vision 2 weeks ago, to full flare up status. This time my symptoms have advanced at a much quicker rate than when I first started having symptoms 15 years ago. My remission has come crashing to a halt with dramatic flair.

It is because of that blessed decade-long remission that I have struggled with this whiplash inducing change of reality. For the past 10 years the Lord has blessed me with an excess of energy and strength, so it is like a splash of cold water to the face to accept this new, less appealing reality. In my head, after so many years symptom free, I just assumed that the Myasthenia Gravis was gone forever (even though it is never truly cured.)

I look back on the past few years and recognize the Lord’s blessing of strength and energy during a season of hard adjustment with our adoption treasures. The Lord knew what our family need most during that season of our life and He blessed us with an excess of energy and strength that truly was Heaven sent. As frustrating as this turn of events are, I know that He is blessing us once again with exactly what our family stands in need of. And while I don’t have the full vision behind this life change, I do have an idea of the reasons behind this forced season of respite. I can already see the work He is doing on me and on my family as we are stretched in new ways…

And while the growing and stretching seasons of life aren’t always the most pleasant, they are always the most profitable. For in the struggle comes an opportunity to prioritize, to recognize blessings, to hold tighter to eternal truths and to become more Christ-like in our Earthly walk.

Part of adjusting to my new “normal” is learning how to live in a body that is functioning at about 20% ability. I am slowly remembering…remembering how life was and what tools helped last time I walked this road. I am trying hard to set aside the foot-stomping 3-year-old inside me that declares this detour, “so unfair!”

*stomp stomp*

And instead count the blessings,

for it could be so much worse…and so much harder.

In the midst of figuring out how to adjust to this new reality myself, I had lost sight of how the rest of the family was faring…

in particular the little boys.

The reality has smacked me in the face in such an obvious way that I didn’t recognize the need to spell out this new reality to the boys until the boys began acting out. Both boys were displaying behaviors that we haven’t seen in a long time, in particular Ozzie, who was targeting me with his poor choices and unkindness. My first thought was, “Really, we are doing this again?? Really, now, when I can’t even hold my eyelids open.”

Then I spoke with Tina our therapist and she reminded me that behind every action is an emotion needing to be voiced. She shared that fear was probably at the root of these new behaviors and suggested that the most effective tool in addressing the behaviors was to address the fears.

So that is what we did. We sat the kids down at evening devotional time and spoke about the reality of the situation. The kids had an opportunity to ask questions, to express their fears and frustrations and worries, and we answered their questions as well as we could.

It turns out Tina’s suspicions were correct. Ozzie thought I was dying…really dying… and his way of avoiding the overwhelming prospect of loss (like he has experienced in the past) was to push me away as hard and quickly as he could before he had to face another loss.

We spoke to them. We explained what Myasthenia Gravis was and how it affected the body.

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“Yes boys, your Momma’s a rag doll”

We explained the mechanics behind the disease and what those symptoms look like in daily life, and did so as playfully as we could in an effort to bring some levity to our reality:

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We then spoke with the kids about what this means for them and the changes that will come as a result.

It was good…very good. The little boys asked questions like:

“Are you going to die?

and “Does it hurt you?”

The big kids asked questions like:

“What is an autoimmune disease?”

and “Why does it make your muscles not work?”

Then we talked about how life will change for a while. We talked about the necessity of rearranging our schedule to allow for the most essential daily tasks to happen in the first hours of the day when I am strongest so as to free me up in the evenings when my body is less functional.

We then set up a family plan, redistributing many of my chores to other members of the family, at least until my body is stronger and more capable.

We laid out the symptoms I am having to better educate the kids on what I am capable of and what I will need their help with.

My current muscles being affected include:

Eye muscles- causing double vision and droopy, half closed eyelids by night time.

Finger/ hand muscles- affecting my ability to grasp things and type.

Arm muscles- affecting my ability to accomplish repetitive motions like stirring, brushing my teeth or cleaning vertical surfaces, as well as tasks that require me to lift my arms for extended periods of time like holding a telephone, washing or brushing my hair, or folding clothes.

Neck muscles- sitting upright for extended periods of time without laying my head down is hard on my weaker days.

Jaw and face muscles- chewing is becoming more laborious.

Legs- stairs are particularly challenging.

We explained that my symptoms increase as the day goes on. We explained it with an analogy:

Every morning I wake with a full bank account strength and energy. By sleeping and being still all night I begin the day at 100%. Because of this it is essential that my most important and strength sapping tasks happen first thing in the morning when I am at my strongest. As the day goes on withdrawals are made from my “strength account” every time I use my body. Every time I sit, nap, or close my eyes  I am making a deposit in my “strength account” and I get a little stronger. This reality requires me to purposefully examine each day and budget my energy accordingly, because the reality is: when the account is empty I am done for the day. There is no coaxing an extra task from my empty reserves. All I can do is lay in bed, trapped in a body that has shut down, unable to open my eyes to watch TV or read, unable to even sit upright.

I share this not to invoke pity but simply to educate you in the same way we educated our children. It is manageable. It is a livable condition, but the reality is so different than the reality that I have known for so long I am having to relearn how to move through my day so that I can continue to function as a wife, Momma, and friend.

This isn’t just my reality. It is the reality for so many people living with a chronic illness. Some use the spoon analogy to illustrate this reality.

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Another author suggested that MG patients explain how Myasthenia Gravis feels like with this analogy:

“When describing what MG feels like to a healthy person, fill up a body shaped sand bag with sand equivalent to 400% their body weight and strap it on them. Then wet it, and have them try to move. (Except this happens gradually as the day goes on until at some point in the day you can no longer move.)”

Yep, that is about right. There is no pain. Instead the reality is:

the lifting of a curling iron feels like the lifting of a 50# weight.

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From a medical standpoint we are playing the waiting game. The first open appointment with my neurologist at the Myasthenia Gravis Clinic is May 17th. I have scheduled the appointment and now we must manage symptoms until we can meet with the doctor to begin setting up a treatment plan.

So in the meantime I am working to avoid my triggers,

In particular I am avoiding heat, exposure to extra illnesses,  and stress…stress is a BIG one! I am also using tools to help minimize all unessential muscle effort…

Tools like:

An electric mixer instead of a wooden spoon for stirring,

an electric toothbrush to reduce the weakness that comes with brushing my teeth,

a cooling vest for spending time outside when temperatures are warmer,

a telephone headset so that I can still talk on the phone even on days I can’t lift the phone to my ear,

an eye patch to treat the double vision,

the  “voice to text” feature on my phone so that I can send emails or blog even when my fingers are weak,

and books on tape to “read” when my double vision makes reading impossible.

The most effective tool, however, is rest.

And I’m learning to embrace that reality…

It is hard, especially when resting is the last thing I want to do. I want to be able to run, to do, to care for others, and say “yes.” I want to be able to read, to create, to play, and to serve. I suppose I still can, but it looks different. It is much more methodical. It is much more planned out. And each action requires a lot more rest before and after.

So this season has become about self care, prioritizing, and allowing the lessons and growth that the Lord has planned for this season of my life to permeate my soul and teach me those things that will make me more like my Savior.

The Lord has called me to rest.

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