That is something I haven't experienced for a long time until a few months ago.
I've been working with a "sleep doctor" for almost 2 years now. We finally found a concoction of medicine to target my lack of sleep and major muscle pain. Hooray it has been working! I still do not sleep perfectly, but aprox 4 nights of the week I sleep pretty soundly. Let's just say the first time I didn't have to toss and turn a gazillian times was a miracle. Then, to actually feel myself melt into the pillow...wow, made me smile the next day!
The other day I was moving around like a normal person would, cooking, cleaning, engaging in good conversations. For a good 8 hours. A glimpse into what used to be. Could it be again? Maybe...
I put smiley faces on my calendar that represent the good (less painful) days.
There used to be NO smiley faces, okay, maybe one every few months.
Now, since I've been sleeping more, smiley's are popping up at least once a week.
I have not posted in a very long time.
I wish I could've kept you updated but,
I stepped away from blogging and facebook for a while because of the
depth of my pain.
Sometimes pain is too deep to describe and it
is better to silently weep before God, alone.
There are certain kinds of agony and pain that only He can console and
For 5 years I've dealt with headaches and extreme exhaustion.
We were already weary from pain driving it's claws into us day after day. Then we found out the little tumor in my head (that was positioned in such a way that it was NOT affecting my chronic headaches or exhaustion) would have to be removed because it was growing.
(the tumor is the white "heart" on the left side of picture)
So, just one year ago I had a craniotomy to remove the tumor. Recovering from surgery is hard enough but since my body was already hurting and weak healing has taken longer.
I never imagined that life could be so hellish.
I never anticipated that for agonizing months to follow I would deal with:
deep pain from the paralyzing of my facial muscles and excruciating eye pain inability to sleep flat, or sleep at all because of the very tender incision mental slowness that limited my communication affecting my marriage and relationship with my kids emotional pain from loneliness and not being able to communicate or process what I was feeling
I'm about 90% healed from the craniotomy.
I still have constant headaches. I'm still extremely exhausted.
Most anyone who sees or interacts with me would have no idea that I am still in pain, because it's all "under the surface".
The Bel's Palsy, that paralyzed my facial muscles, has mostly healed except that the underlying facial muscles are still often stiff and occasionally twitch uncontrollably. Most of the nerves on my scalp have connected back but there are still some parts that are overly tender or have no feeling at all. I think my taste buds are still affected too.
Mentally I'm back on track, but still not fully back up to speed. I am forgetful and still can't concentrate as well as I used to. For the most part no one can tell, only those who deal with me daily get the frustration of communication (my poor family).
Boy, has my compassion grown for the chronically hurting. There is such a hopelessness that develops when weary day after weary day goes by.
of the time I just deal with the pain and move on. I've learned that
pain is a part of life, I rest when my body needs to rest, appreciating the little things, I try not to push myself to do too much (or feel guilty that I can't do what I wish I could do), I'm thankful for the good days and drink vodka on the
bad days. :)
Relationally, wounds are still in the healing process, I must confess that even some scars have developed.
It sure is tough on a marriage when one member (me) cannot communicate well and the other is...well, stressed doesn't even begin to describe the amount of pressure and weight on his shoulders.
We are devoted to each other,
committed, sacrificially in love, persevering, forgiving,
But along with that has been continual tears, tension and pain. Big doses of that can drive one too near the banks of insanity. Healing takes long-suffering love.
The other day I was reading back over the surgeon's notes, taken after the craniotomy. Memories of that day, that first week, and the past months and months pounded me. I could not hold back the tears.
The tears flowed in memory of the horrendous pain and grieving of those months, and the many ways it has negatively affected my husband and children.
The storm has not passed. In fact, the storm was already raining down on us, then I had this surgery and the storm became a hurricane. Now, the hurricane has passed, but the storm remains.
Some days I feel God's strength and am ready to dance, even in the rain. Other days I am weak and am like a zombie wondering how much longer I have to plod through life like this.
So often I have wished I could be like those great, strong people we hear about who, even though they are walking through tragedy, they are still able to help others and they exemplify great courage and strength. That is not me.
I am weak.
I am hopeless.
I am hurting.
If there is any strength on any given day, if there is any smile at any minute it is only because I have the hope of heaven. Christ Has died for me, saving me from my prison of sin and death. On those days when I am sitting in a corner, sure that I have lost my mind, I hold onto the peace that God holds me and that He will take care of my family in the ways that I cannot.
Even when I feel imprisoned from my pain I know that I am free. Free to love, those small ways do count. Free to give, those small gestures can mean a lot. Free to enjoy life, there is much to be thankful for. When was the last time you stood in the warm sun, eyes closed, just thankful to be able to stand in the sun?
I start to write then...delete, not knowing how to put into words the depth of discouragement I have felt.
The months have been up and down.
One of the highlights has been
Thai Food Night.
Andrew and I love cooking together.
It's fun and romantic.
We decided to let the kids each pick out their own Thai recipe.
Then we drove down to our local Asian Market.
What an experience!
The produce was piled in large heaps along the wall, the aisles were lined with jars and cans with unusual wrappings. Half of them I could identify, the other half was just guess work. It was good exposing the kids to such a different experience than what they're used to. It sure brings understanding and compassion for others.
Once we were back home,
one-at-a-time we had a kid come into the kitchen to prepare and cook their dish.
They learned to read and follow directions...
to handle a knife properly...
and to maintain good sanitary habits.
Then, the dish was taste-tested and enjoyed!!
Joshua loves shrimp. He got to learn how to de-vein them:
Beautiful and yummy.
Jeremy loved seeing his recipe idea go from paper, to store, to cooking to ...eating!
Yes, I know I'm not in any of the pictures!! That's because my main job was to wash, clean, wipe down, clean, sweep, wash, and of course...eat!
After my craniotomy I felt very depleted of vitamins and nutrients.
During the surgery I was pumped up with drugs, and then for a week or two afterwords felt soaked in them.
I couldn't eat vegetables or fruit for over a month because my jaw pain was too immense. But I needed to replenish my body with those essential vitamins. What to do?
Every morning I combine:
Kale -1 or 2 leaves
Spinach- 2 or 3 cups
5 baby carrots
2 t. flax
I put in all in a blender.
Adding a few ice cubes to step up the taste.
I'd be lying if I said the taste was amazing, or delicious.
It took a while to get used to it.
It's not sweet like a fruit smoothie, but has a very fresh and cool flavor.
It has grown on me.
After 1 1/2 months of the same thing for b-fast every morning I've started adding other things to my potion:
What keeps me going back to it every morning is the HUGE nutritional value...
It's been difficult to adjust to the "normal" world.
I've ventured out and tried to increase normal activity slowly but it's been treacherously slow.
Maybe the hardest part is that outwardly I look like I'm back to my old self, and often times I feel like I could be back to it also. But my eyes and head just don't want to cooperate.
If I talk too much,
think too hard,
move too fast,
or am out of the house too long
my eye muscles hurt, my head throbs, and my head wants to burst with exhaustion.
Honestly, it's down-right frustrating to feel like "life" is at my fingertips
yet not be able to take hold of it.
This past month has been a very lonely one.
My house has felt like a prison. If I go out of the house for too long it increases the stress of coping with the pain and so back into the house I must go. The first month & 1/2 was easy staying home. But this last month I'm like a horse jumping at the bit to get back on the course of life.
Just the past few weeks I've been able to start driving during the day. That has added a lot of freedom and yet has been discouraging because, although the pain is bearable, I cannot do much.
There ARE mornings though
I wake up and have courage to face the day.
I look at the little moments that can place purpose into the mundane day.
And I can see visible expressions of God's love for me.
But then after a few days, discouragement sets in
I'm crying alone.
My kids are wishing I wasn't in pain.
My husband is worn out from carrying the load of the family and doing everything in his power to help me ...and yet still sees me remain in pain.
The only thing that has kept me from crossing into Crazy Land is remembering.
Remembering to trust my Loving Father who provides, and knows, and satisfies all my needs.
Remembering to be thankful for the little things.
Remembering WHO I have around me.
Remembering to have compassion for others in pain.
Remembering that God will care for my family.
I really don't like putting pictures of myself on here but I thought I should give you a picture that shows how much things have improved:
One of the neighborhood kids saw me with my comb-over and exclaimed, "your hair grew back!"
Here's the incision now, still crusty but slowly disappearing. It's not painful. The hair shaved is beginning to grow. The portion of skin/muscle between the incision and my eye wasVERY tender & swollen but is now just tender.
How's this for comparison:
Do you see where they stapled onto my ear?!
That is still sore.
The Bell's Palsy is improving. My last post I mentioned that I no longer had to gauze shut my eye. But at that point my eyes were still extremely sore and I had to constantly shut them or keep my eyes down.
NOW I can actually look at people when they talk to me. :) The muscles behind the eyes are not as sore, at least in the morning (by evening they still get very achy). I can see because I don't have to use eye "goo" quite so much. I can do things! I can watch TV and be on the computer for longer times.
The other facial muscles on my right side are half working, enough to eat and drink without constantly spewing food out of my mouth! :)
Mentally my brain is back on the right track...not the slow track anymore. That would make the kids laugh sometimes when it took me longer than it should to do something, or when I just couldn't understand what they were saying!
Every day I walk to pick Jeremy up from school. It's a mile round trip. I look forward to getting out of the house, the fresh air and the gentle exercise.
It amazes me the little things that I enjoy since much of every day is the same or has been painful. Holding onto those little smile moments are what have kept me sane.
Like sitting at the window watching the wind toss the trees around.
Eating a treat of some kind that a friend had brought over.
Chai Tea, cozy and warm.
Walking into the backyard when the sun is shining it's warmth into the chilly air.
I have a feeling that being back to "normal" is just around the corner.
It has been 3 weeks since my craniotomy and tumor removal.
Yet in all the pain we've had love and support by family and friends.
God was with me. Is with me. Immanuel. My sustainer, comforter, provider.
In pain there has been a perspective gained of thankfulness:
Thankful that it wasn't worse.
Thankful that I am alive.
Thankful that everyday there has been some sort of progress, no matter how slight.
Thankful that the unexpected hurdles I've had to face are not permanent, but temporary, and in the big picture mild compared to the severity of complications that could've arisen.
Thanksgiving Day my family spent the day with Andrew's parents, a tradition that we have had for years. Watching the Thanksgiving Day Parade eating a big breakfast and enjoying just hanging out.
I stayed home and did my usual resting, reserving my strength for later. Andrew came and got me in the afternoon and I was able to join the family for Thanksgiving Dinner. What a treat!
Honestly, it was physically painful. My eyes were killing me. But it was so wonderful mentally to be with the people I love! It was worth it.
I don't have any pictures to share with you yet.
I'm not so scary looking anymore. :)
I'm able to do a pretty good comb-over with my hair that hides the scar.
Although make-up is still difficult to put on the eye affected by bells palsy I was able to put a bit on for thanksgiving yesterday. It felt good to look a bit like my old self. :)
Can you hear me cheering? This is the point I've been praying for: that this would be bearable. Not even pain-free, just bearable. I'm praising God!
Our lives are a journey towards knowing God and experiencing the power of His presence and the fullness of His Deity. With each step we take we are discovering His unfailing, gracious Love and the beauty that comes when we walk with Him.
We have been married for 11 years and are grateful to God for matching us up so perfectly to encourage, support, and love each other. We have three awesome children who God prepared uniquely and specifically, even before their birth, to be a part of our family. Everyday we are speechless as we stand before the grace and love of God and are thankful for every breath He gifts us with, looking hopefully to our eternal home in His presence.