Category: distress

Living in a Battle Zone

Genesis 1:27 New American Standard Bible (NASB)

27 God created man in His own image, in the image of God He created him; male and female He created them.

 

Constantly aware. Ever vigilant. Exits secured. Dodging bullets (nerf bullets, toy trucks, sippy cups, shoes, metal toy cars, anything that can be used to target a person or glass screen, window or door). No bunker to run to for safety. No place to retreat to escape the torment. Physically or emotionally. The only place to retreat is Jesus, crying out for shelter and rest as tears tumble down your cheeks. Mentally trying to figure out your next battle plan, strategy to calm the attacks. Weeping because you are exhausted of this every single day.  Thankful that 28 days ago, there was a truce of sorts. No battles, no lashing out, no rage at all. A day of peace with quiet, but sad because that was a day he wasn’t feeling good and just wanted to be held and cuddled. Wouldn’t let you let go, because he feels most secure when he’s close and held tight.

Sounds and noises we cannot hear, whether we have tuned them out because we have the ability to filter out noise or because we aren’t gifted to hear such quiet noises he can hear. The moment the gas furnace comes on before we can hear it before we can feel the hot air coming through the floor vents, he rushes over and is fearful, asking “what’s that noise?” but I hear nothing out of the norm. A few seconds later, I hear it chug to life and feel the heat. I assure him it’s nothing to be afraid of, it’s just the furnace (in the basement far from where he hears it).

Investigator of all. The coffee pot full of HOT coffee. The toolbox with sharp tools, that can’t be locked. The dryer that is big enough to climb inside. The vacuum that might need a new belt or part. The stovetop where he can cook his play food.  The step stool he tries to stand on to reach something that has been put up high, out of his reach. The tablet or smartphone that he probably knows how to operate better than us. There is never a time we can let him out of our line of vision. Because no matter how many times we say, STOP or DANGER he will still reach for them or climb on it.

Constantly moving, sits for YouTube videos and when he is in his car seat with a locked chest clip and buckle guard, so he can’t escape while the vehicle is moving or in his specialty stroller with a built-in torso vest and extra fasteners. Activities that once held his attention painting, playdough, putting puzzles together, coloring, matching sequences, matching objects in a memory game, no longer appeal to him.

Body slams into people and walls, gates and furniture. Climbing and jumping off of anything he can. Sliding down the stairs on his stomach face or feet first. The faster and harder the surface the better. Hitting and punching, pulling your hair, grabbing your eyeglasses off your face, biting, throwing his body on the floor, banging his head. All the while, trying to stop him from doing things to hurt himself or you. Holding him tight, hugging him, playing music, counting out loud, letting him swing, offering his trampoline, suggesting he spins himself around or jumps up and down. Let’s make a tent so you can hide in the darkness.

 

Houdini wanna-be. Made it past adult the other day, out the back door wearing a pull-up only. No clothing/coat or shoes. Hates clothing. It was 34 degrees. He didn’t get far this time, I was in the driveway. Doors are secured with locks at the top, every single door in the home, but where there’s a will, he always seems to find a way.

Sleep is either totally out or restless. There is no in between. If he goes to sleep too early in the evening (9pm), he’s full-on awake by 1 a.m. If he waits to go to sleep later in the evening, he’s too tired to function in the morning hours. Night terrors since birth. Some doctors say he will outgrow them. Cannot sleep alone due to health conditions. He co-sleeps with his mommy or me, so at least every other night, we can get some rest. Sleep only comes with the help of prescribed medication, otherwise sleep is like that of a newborn baby, constantly up and down all night.

Psalm 139:13-14 New Living Translation (NLT)
13 You made all the delicate, inner parts of my body
and knit me together in my mother’s womb.
14 Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.

Many prayers prayed throughout the day. Not to make him better, but to help him. Help him figure out why he acts the way he does, how to control his moods and impulses. Show us how to love him through it all in a calm manner. Help us figure out what sets off the explosions, the sensory overloads, the meltdowns, the anger. Help us know when he is in pain, help us to soothe the noise. Help us to respond and not react. Reactions are normally based on emotions and emotions ride very high when you feel like from the minute you wake up until you lay your head down for the night you live in a battle zone. Responding in love and compassion and words that lift up are always much better, even if it takes him a while to process it.

His brain is wired differently than ours. He sees the world differently. That’s okay. We need to learn how to teach in a way that he learns. In a way that he hears. Our expectations can’t be set so high that we set him up to fail before we even start. And we also can’t see our parenting skills as a failure. We know we are doing the best we can. He has one parent and two grandparents that care for him daily. That battle with him daily. That on occasion, we laugh and giggle with him daily.

We miss our happy-go-lucky boy. We miss the one that used to love to build block towers, play with toy cars on his toy race track, blow bubbles. We miss sitting and watching Paw Patrol and Blaze and the Stuart Little Movies over and over and over again.

We miss the child that used to love all types of food, raw vegetables, cooked ones, all types of meats, dairy products, foods that fueled our bodies. Now his main staples are chicken nuggets, chips, cookies, and juice. Occasionally a yogurt sneaks in. And cold cereal.  We miss the child that used to drink his liquids the right way and now we must watch him drink and make him swallow it or he will spit it out on himself, you or the floor, table, wherever he can.

We miss the child that didn’t seem angry and upset all the time.  We know he is still in there because we see glimpses of him.

We miss the days when he didn’t have to take medication unless he had a fever or an infection of some sort. Now he takes medications to prevent seizures from happening on a regular basis. Medication to help him fall asleep and stay asleep. Medication to help him focus and not be so aggressive. And I often wonder with all the medication he is taking, the constipation it causes him to have isn’t a source of the battles. We will find out more at the end of February when he goes to see a GI specialist.

When we are in public, we pray he will have a good time. No throwing himself on the floor. No knocking merchandise off the shelves. No meltdowns. But when he sees his developmental doctor, although we don’t want him to have problems, it would be nice if just once they could visualize the outbursts of aggression so they could understand it’s not just him having a bad day.  All of us have bad days from time to time.  Days we want to stay in bed, pull the covers over our heads and skip participating in life that day.

BUT, even with all of this, we are very grateful for how far he has come. Two 1/2 years ago there were no words. No way for him to communicate with us at all. And during this time he has had to endure extensive speech therapy every week. In-home therapies.

Soon, he will be starting ABA services. In hopes that they can reach him and help him and help us to live a little bit more of a peaceful existence.

We will continue to fight the battles and strategize the best way to live our lives with this amazing little boy. He is truly a blessing in our lives. We would never want to imagine him not with us, no matter how hard it can be.

Having a child with special needs requires a lot of perseverance and a whole lot of patience and never-ending unconditional love. And a grandma like me, that isn’t afraid to pray over him daily that Jesus will help him to understand the world around him and that the world will understand and love him just as much as we do.

In four days, his back to school will resume. The winter break has been brutal. His routines thrown out the window. And it will take him a couple of weeks to get back into that routine. Most families cherish winter and spring breaks, a time to refresh and rejuvenate and all I have been praying for is when the day comes to put him back on the bus and sit down with my feet up for a couple of hours and just rest in the peace and quiet.

animal army battle canine
Photo by Pixabay on Pexels.com

So, the next time you hear someone say that being a special needs parent is much the same as being a combat soldier, their not downplaying the role of a soldier in combat, but relating the stress levels are just as high. If you know of a family that has special needs individuals, ask if you can help. If you are a special needs family, don’t be afraid to ask for help and support.

Love one another, through the good, the bad and the ugly. Show grace when you feel like you’ve failed. You are doing the best you can. Seek the Lord and His guidance. PUSH-pray until something happens.

Mark 9:22-24 New Living Translation (NLT)
22 The spirit often throws him into the fire or into the water, trying to kill him. Have mercy on us and help us, if you can.”23 “What do you mean, ‘If I can’?” Jesus asked. “Anything is possible if a person believes.”24 The father instantly cried out, “I do believe, but help me overcome my unbelief!”

 

Tomorrow is a new day. A clean slate. I cling to Hope.

Jesus loves you more than you will ever know! Jesus can turn any mess into a message and any test into a testimony. #HopeAlways#HaveFaith

Blessings~Carlene

 

Advertisements

Moving Slow in a Fast-Paced World

Philippians 4:11 New Living Translation (NLT)
11 Not that I was ever in need, for I have learned how to be content with whatever I have.

I used to walk relatively quickly when the need was there. Now my only hope is that I don’t trip or fall while walking. There is no quickness in my steps anymore. I miss that. I miss being able to take walks without being in pain and needing to sit down every 10 minutes or lean on a shopping cart if “my helper” is not with me. I totally dislike the fact that I require “my helper” more times than not. “My helper” is my rollator walker, with a built-in seat and storage basket. It weighs about 20-30 pounds and because it is made for a large person like myself, although it does fold, it still takes up precious cargo space and strength to haul it in and out of a vehicle.

I rarely go to the store alone anymore, not because I wouldn’t enjoy a break without family members going everywhere with me, but because if I have to purchase more than one or two things, I do require assistance. If there are no electric carts available, then I need “my helper” to maneuver through the store and be able to take multiple breaks to relieve the pain and pressure felt throughout my body, mainly in my lumbar (lower) spine area. Leaning on a shopping cart is the last resort, as it does not dimish the pain, but at least I have something to hold onto.

My husband has multiple names for “my helper”. And I truly do understand his frustration. When we travel anywhere, far or near, I need it. There are times I fool myself thinking I will be ok with just my cane, but if I were, to be honest, my cane doesn’t provide the same type of support the walker does. And can cause more pain because of instability; my muscles tense up which then lead to spasms, which are far more painful than if I had just chosen to use it.

Going shopping is always a planned event. Where are we going? Will “my helper” fit through the aisles. Yesterday we shopped at a local store, and I didn’t think we would make it through the store. It was busy. It’s that time of year, the aisle ways are only made for one person with a cart to go through, wall to wall people, stacks of merchandise everywhere, but we made it. Almost everywhere I go, that I will need assistance in maintaining my mobility requires planning.

Rollator Walker
My Helper on Hard Days

There were many sporting events and band events that our grandson participated in this year, that made it impossible for me to attend. That is when my heart breaks.  I want to be a grandmother that can support and cheer on my grandchildren and encourage them in all they do and some things I just can’t because of the disabling conditions I live with.

I’m thankful I had the foresight to purchase this before I retired due to my disability. It’s large and bulky and irritating that I must rely on it, but I am not ready to stop living and be relegated to my home for the rest of my life.

Even with this tool, I still move slowly. In my mind, I am walking at an amazingly fast pace and then I look over at family members I am with and realize I am still slower than most people because I have been left in the dust. I am always playing catch-up. But I am still moving. Ever so slowly.

The Lord has placed people in my life that remind me that I am very blessed. And while I need to work on being content with using a walker on a daily basis, I know that He will help me overcome the fear of what other’s think when I use it.

So are there areas in your life where contentment isn’t what you thought it would look like? Or areas you hope will be better one day.  Remember that while life may not turn out like we envisioned or dreamed, we are still living and breathing.

Jesus Loves You~right where you are~at this moment.

Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith

Until next time~blessings to you~Carlene

 

 

 

Giants

Jesus spoke to the people once more and said, “I am the light of the world. If you follow me, you won’t have to walk in darkness, because you will have the light that leads to life.”

John 8:12 NLT

 

All of us have dark times in our lives, times that seem hopeless and we feel that no matter what else happens, we will stay stuck in that dark place. It’s easy to let feelings like that wear on you.  I have had those feelings lately.

And in the midst of those feelings of despair and depression that takes hold and doesn’t want to let go, Jesus is there. He is my Hope. He is the reason I don’t give up and I don’t quit.

There have been many days that I would rather, pull the covers over my head and go back to sleep than have to get up and face the day and all it holds and that is exactly what the devil wants. He wants me and you to believe that nothing will ever be better and the feelings of hopelessness will consume us and everything in our lives. That is why it is so important to stay in The Word; to spend time with the Creator of the Universe.

Jesus came to earth as a baby, born to man, to save us and give us everlasting life. This life we live here on earth is temporary. This is not our permanent home. I know sometime’s I forget that. He endured hardships, trials, struggles and yet even though he never sinned, not once, He died on a cross, bore the sins of the world so that once and for all, sin would be no more.  He shed His blood for me. For you. He did this so you and I could have life and that through Him we would live forever with Him in eternity.

There have been many times lately, that I have hoped for that eternal life. No more pain, no more tears, no more frustrating times. He has a plan for our lives. And in the midst of those plans, heartbreak happens. But if we put our faith in Jesus, He will see you through it all.

80b4a8099ff1aced999b9c85d3a30f58

For the past several weeks, in our home, we have battled with our grandson. He requires a lot of patience and understanding. Living with a child that is autistic, you never know from one moment to the next what will happen. The demands of a special needs parent/caregiver are great.  And until you go through it, and take that walk, you can never fully comprehend all it encompasses.  It’s not an easy road.  Teaching him requires thinking outside of the box. His learning styles are vastly different from other children his age.  He processes information more slowly than most.  And just when you think you have him all figured out, when you know what upsets him or throws him into a sensory overload, you are right back to where you don’t know as much as you thought.

We love him immensely, but there have been many times, I have asked God, “Why?” Why is he one of the many that have to have these struggles? Why couldn’t he be normal? Why do we have to keep the same routines, no spontaneity allowed in our life, because this will set him off? Why must he have sleepless nights, with night terrors? Why do bright lights and loud noises hurt him so much? And while there have been no concrete answers, I was reminded of the story of the man born blind who was healed by Jesus and saw for the first time (see John 9 for the details).

I know that God has a plan for Tyson and his life. I may not understand the plan, I may have a hard time coping with what he goes through each day, but I have a God that is bigger than any problem that comes our way.  Through Tyson, I see the world through different eyes. Even through the tears, I am reminded that Jesus is with us. And with him. And how much he lights up when I talk to him about Jesus. While I may never fully know how much Tyson understand or comprehends, I know he knows Jesus. Worship music soothes him. Going to church and learning about Jesus makes him smile.

Tyson reminded me, late Sunday afternoon, how much he loves being with others that love Jesus too.  My husband and I woke up early Sunday morning, and quietly prepared to leave the house to attend church. Usually, we wake Tyson and take him with us, but I was being selfish and I wanted a break.  A break from chasing him and fighting with him to get in his carseat and stay buckled in. A break from his mood swings and impulsivity; so we quietly got ready to leave, leaving him to sleep with his mother and left without him. Later in the day, as he sat on my lap, telling me over and over, “I love you mamaw,” he looked at me with a sad little face and said, “you go church?” When I replied, “yes, papaw and I went to church,” as his tiny little lip quivered, he exclaimed, “I go church!”And I had to tell him no, not this week. He cried. And I realized then, that my selfishness caused him pain. The last thing I ever want to do. And I also realized that this tiny 4-year-old has a love for the Lord and even though it may be a struggle getting there, I won’t withhold that from him anymore.

During the sermon Sunday, the pastor reminded me that all of us must have the sincere faith and love that a child has for Jesus. A child isn’t afraid to ask and make requests, no matter how outlandish they may seem as we grow older. Children aren’t cynical like most of us, mainly because they haven’t had the life experiences we have had and take Jesus at His Word. Isn’t that how we should all be? Jesus came so that we could have life, and have it abundantly! He died on a cross so we could have eternal life! We should have nothing to fear because we have Jesus!

Worry can consume us, which becomes fear of what may happen, but Jesus tells us that He will always be with us, He will never leave us; never forget about us.  What a promise to take hold of and help us as we go through our days! He is the living water, and we will thirst no more!

John 7:38 New Living Translation (NLT)
38 Anyone who believes in me may come and drink! For the Scriptures declare, ‘Rivers of living water will flow from his heart.’”

I am forever grateful that I have a Savior that loves me unconditionally and is always available to me, no matter the time of day.  He is available to you too!

Luke 11:8-9 New Living Translation (NLT)
8 But I tell you this—though he won’t do it for friendship’s sake, if you keep knocking long enough, he will get up and give you whatever you need because of your shameless persistence.[a]

9 “And so I tell you, keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you.

Trust in the Father. Have faith. Hope Always.

May you know how much Jesus Loves You~right where you are-in this moment!

Many blessings~Carlene

 

 

 

 

Daily Life Struggles

Proverbs 15:15 The Message (MSG)

15 A miserable heart means a miserable life;
a cheerful heart fills the day with song.

 

With joy in my heart, I still struggle.  Joy comes from the Lord and no one can take that from me. I can choose to live with a joyful heart and know that I will still face many struggles and trials, but still, love and be the person I am because God has placed Joy in my heart or I can choose to live without joy and be miserable always.

Over the weekend, the fibromyalgia flared up and reared its ugly head. The constant pain that never fully leaves, but some days are so rough, that just breathing and moving, make you question if getting out of bed was the right thing to do. And knowing that if you choose to remain in your bed, how many things will face you to take care of once you arise.  Most of us that have fibromyalgia know that sometimes the best we can do for ourselves is to stay in our beds or the comfy places we have carved out in our homes. We do not have the energy to get dressed, shower, or do any extra. Getting up takes every ounce of energy just to be able to spend time with our families, and going anywhere is totally out of the question. That was me on Saturday. I showed up, in my nightgown and I stayed in my nightgown all day. I KNEW I was not going out into the cold for any reason and I saw no point in causing myself more pain to get dressed simply because that was expected of me.

I have dealt with FM for 10 years. And for the past year, it has been manageable. But for the past several months, I have noticed since stopping the natural supplements I was using, my inflammation throughout my body and the pain levels have been increasing again.  I choose to work through my pain in prayer and time with the Lord. Limiting what I do. Staying in more than going out and while dealing with my own health battles, helping our grandson through his.

He has come a long way in the past two years since being diagnosed with Autism Spectrum Disorder. He talks now. He is becoming very independent, but also very demanding. He is four. When he wants something, he wants it now. And even though he asks for something correctly and always says please, he does not understand when he is told no.  He tries again, to word it differently or even smile and say please and sometime’s the answer is still no. I know it must be confusing, because he is being polite, and saying please, but simply does not understand that even if you do everything right, sometime’s the answer will still be no.

So imagine being in such excruciating pain, that you do not want anyone touching you; let alone a four-year-old jumping on you, bouncing into you, climbing on you, but you don’t dare say no because you don’t want to make him feel unloved. He doesn’t understand what it means when I say “that hurts” or “please don’t do that”. And he loves to give big hugs, he loves deep pressure. He loves climbing behind me on the sofa and me leaning back on him, but all I want to do is cry because every amount of playtime for him is pain time for me. But I do it because this brings him comfort and joy. Love is powerful that way.

I left my home on Sunday to go to church. I needed that more than I knew. I didn’t realize how much I missed the interaction with others until I was there. I interact with people daily through social media and texting, but it just isn’t the same as being able to see smiles, receive hugs and just be loved on for simply being you. By the time, my husband and I arrived at the church with our grandson in tow, we were both emotional. My emotions were creeping near the surface, ready to spill out in the form of tears. My husband was frustrated because our grandson is a runner and any chance he gets, he bolts. Even though he had his safety harness on, and my husband was holding onto the strap, he wasn’t ready to go on a run with him.

And Tyson has learned that if we are trying to pick him up from the ground, and we want him to stand, all he has to do is bend his knees when we are lifting him and he becomes heavier to maneuver.  He is big for his age. He’s four, but weighs 50 pounds and is over three and a half feet tall. Carrying him for any length of time is strenuous to us “old” folks. Wrestling him into his car seat so we can go anywhere is an everyday battle. Once in the seat, he does ok, but getting him in the seat is a battle, every single time. And he has to be in a five-point harness because otherwise he would be climbing all over the vehicle and exploring.  Safety and danger are words he does not understand. He always wants to sit in a regular seat with just a seatbelt but we know that won’t happen until he is much older.

Walking into the church lobby, as we were greeted, the tears started welling up, and I just didn’t have the strength to hold them back or hide behind a pasted-on smile and pretend everything was good. I was tired. Tired of my own pains, tired of always struggling with Tyson when we need to leave the house. Tired of always being the positive one. We all have our breaking point. Yesterday was mine.  I know the devil will do anything he can to try and break me. For the past three weeks, I have opted not to leave the house on Sunday. I’ve made excuses, stayed home, watched our church’s live stream of the sermon and remain isolated because that was so much simpler than struggling with him to go anywhere. In doing that, though, I lost out on connecting with other people and being surrounded by people that love us through all our struggles; people that are compassionate and caring and offer to help in any way they can.

Sailing Life

I think for most of us that live with autistic individuals it’s not that we don’t welcome the offers of help or hope that someone will be willing to help, it’s that we don’t know what kind of help to ask for. Our home is “proofed” for him. We have specialized gates, taller than him to keep him safe and confined to an area of the home where there isn’t danger. We have learned not to have “pretty” things that he can break. We know if he is outside, he must always be (1) holding your hand tightly (2) have his safety harness on (3) be secured in his specialty stroller with a vest and five-point harness or (4) be in a fenced-in area where no escape is possible. We know he has food aversions and sensitivities. We must always have his emergency seizure medications at the ready and available. And the list goes on. Going anywhere, we must still take a change of clothes bag and appropriate necessities, because he isn’t potty trained yet. And if someone opts to take him for a few hours, what if he hurts himself, has a seizure, breaks something, gets sick. Yes, he is verbal now. Can he communicate everything he needs to? No.

The one thing I can offer to those willing to ask: please don’t stop asking. For me, it’s hard to ask for help for anything for myself, Tyson or our family. But I am learning to accept it. Accepting prayers from others is easy. I love to pray for others too. Accepting offers of helping with Tyson is getting easier, but I know how challenging his behaviors can be and I know that we never know from one moment to the next what he understands and what he doesn’t, but we do know he is very smart and intelligent in many ways. And letting go and accepting help may not be in my nature, but being part of a community of people that love us regardless of our challenges does truly make all the difference in the world.

May you know how much Jesus Loves You~right now~right at this moment and always.

Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith

Blessings until next time~Carlene

 

 

Living with an Invisible Illness

Psalm 28:7 New International Version (NIV)
7 The Lord is my strength and my shield;
my heart trusts in him, and he helps me.
My heart leaps for joy,
and with my song I praise him.

 

I am so thankful Jesus is with me daily. His Holy Spirit resides within me. He keeps me focused when the pain is too much. When the bed seems like the best place to spend my days, he reminds me that whilst I can spend an unlimited amount of time with Him lying in my bed, it’s more difficult to share His love for others from that position.

A little over a year ago, I was in a different place, physically. I was feeling pretty good, my fibromyalgia was held at bay with amazing supplements I was using to heal my body from the inside out.  I truly had forgotten, although I can’t imagine how I could ever forget, the all-encompassing pain that runs through your body when you live with Fibromyalgia. I was walking and moving a lot faster than a snail’s crawl which is how I feel now. It was my hope back then when the pain wasn’t as noticeable, fatigue was held at bay and I felt like a normal person, that I would never endure this painful condition again. I wasn’t afraid to go places and try new things for fear of a flare-up and intense pain that might last for days and weeks.

fibro3

I’ve thought long and hard about posting any of this because I truly believed I didn’t have to deal with it anymore. It was a thing of the past. Unfortunately, I know in my mind, as well as my body, that if I am not consistent in using the supplements, eventually my body would go back to what it was and the supplements alone were not enough for the change to take place. I was eating healthier and getting some exercise. As much as I knew this was inevitable, I had hoped and prayed the muscle aches, the pain, the fatigue/insomnia would not come back. Instead of having the sheer exhausted feeling of fatigue, now I am plagued with insomnia. It’s crazy!

But, I push through. I will not quit or give up. That’s not me. I’m not wired that way. Thank you, Lord, that I am not. Thank you Lord Jesus for giving me the strength and determination I need to keep putting one foot in front of the other, no matter how difficult or slow I may be. And watching people much older than me zoom by me in the grocery store or in a parking lot, makes me realize how slow I am moving. However, I AM moving. So very thankful that is the case and I am not in need of a wheelchair.

And because I guess my hand/wrist felt left out of the pain equation, the carpal tunnel is back with a vengeance. I’m back to using a night splint and sometime’s using the night splint during the daytime so I can function again. I never did learn how to use my non-dominant hand to write with. I wonder if that is even possible at my age? OR if I am too set in my ways to take the time to learn?

My internal temperature gauge is stuck in cold mode. I am rarely warm, no matter how many layers of clothing I wear. This totally sucks. I tried to think of a better way to say it that didn’t sound rude or unbecoming, but it sucks. Plain and simple. That’s why I always try to get my hubby to drive everywhere; his vehicle has heated seats.

I guess the hardest part of living with Fibromyalgia is you never know from one day to the next how you are going to feel. Knock wood, the osteoarthritis in my knees and hips are manageable at this time. The degenerative disc disease in my lumbar spine is worse. And the spill I had a few weeks ago, trying not to fall mind you, hasn’t helped.

Because of respiratory problems I live with, I cannot take pain medications to help with my pain. This causes problems with my breathing. Slows it down too much. So I rely on Jesus to carry me through the pain. I spend a lot of time sitting, with my legs propped up as much as possible and I long for the times when I was able to be an active participant in the lives of my family and grandchildren. I have four amazing grandchildren, one lives with us and I am blessed to see him grow and bloom before my eyes. The other three are several years older, involved in extracurricular activities and I haven’t been able to attend any of their outdoor events this year.  It makes me very sad. I love them so much and as much as I know they try to understand, I feel as if I am cheating them somehow and I HATE this part of this disorder/disease.

The other three have known for years that I can’t run and play with them the way their grandfather does. But I have always been able to go before. Now the cool weather is just too much for my body to handle. But I am so very proud of them for everything they do and someday when they are much older, I hope they will know without a doubt that if I could I would have been to every single thing they were involved in.

I push myself many days to get up and get dressed. Put on my “happy” face and “fake” it. I know living with me when I am in pain, is not a walk in the park. I become irritable and grumpy and short with others. I do my best not to let this side of me come out from behind closed doors, but it is so difficult because some days just getting dressed wears me out. The thought of running to the store to grab a few things is exhausting just thinking about it. It’s great if the store you go to has electric carts for customer use, that actually work and will last for the entire time you are in the store, but many are used so much they never have a chance to fully charge and the only thing worse than not having them available is using them to shop and the battery dying in the middle of your  shopping trip and then it’s like being stranded on an island in the middle of nowhere. Now you have a full basket of goods, but no cart in sight to transfer them to.

The single most agonizing part of the widespread pain returning is the muscle spasms that come, out of nowhere. I turned my head earlier to look at something, not quickly, but as I turned my head, a sharp muscle pain and I just had to wait for it to pass. And I get these spasms throughout the day, everywhere. Many you cannot just walk out. Most of the time you just have to wait until your muscles relax. It may be myofascial pain. I’ve been reading about it. This is something I will have to ask my physician the next time I see her.

I have many friends that live with Fibromyalgia and as much as we can be there to support one another, all of us live with it and have varying symptoms to varying degrees. Many of my fibro friends, can’t stand the hot weather or warm temperatures, drains them and all their energy. For me, I am completely the opposite. I love the heat. The hotter the better. Cold weather sucks the life right out of me. There isn’t a coat or blanket warm enough to keep me comfortable. And of course, I live in a state that is known for unpredictable weather.  One day it’s 80, the next it’s 40. It’s no wonder I feel so cold, right?

2 Corinthians 1:3-5   New International Version (NIV)

3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 5 For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.

I am thankful that I have Fibromyalgia because then I know how to extend comfort to those who deal with it too. I know that God allows us to go through many things in life as a way to be a testimony to others that put their hope in Him. I can still be a light to others by encouraging them, no matter the type of physical pain they experience because our earthly bodies are temporary. This is not our home. We are citizens of Heaven. But I also know that He does not expect us to suffer alone in silence. We are all made for relationship. Relationship with friends and family. All of us have a need to be part of a community, that is loving and supportive. And while all of us can be less than loving and supportive at times in our lives, that is where grace comes in. God gives us grace because He loves us, not because of anything we can do to deserve it. We all fall short in that area. All of us.

Be kind to others. Love them. No one, except for Jesus, knows the internal struggles and battles each and every one of us faces daily. And for each of us, no matter the battles, they can be debilitating if we forget to lean on The One who gives us life. The most important relationship you will ever have in this life is the one you have with Jesus. In my opinion.

Psalm 100:5 New International Version (NIV)
5 For the Lord is good and his love endures forever;
his faithfulness continues through all generations.

May you know how much Jesus Loves You~right now~here in this moment and always! Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith

Blessings friends~Carlene

 

 

In the Midst of it All

This week has been emotionally exhausting. For several years now, as we live with autism being part of our everyday lives and trek through the ups and downs, I have been sharing how tantrums are not the same as meltdowns. This week has taught me that no matter how much I try to share a glimpse of what a meltdown is or isn’t, there is no way that you can possibly teach others what one is unless they have personally witnessed or experienced it themselves.

raging fire

I can educate others on the differences. I can post pictures on the autism page I manage on Facebook. I can tell others what we go through, but until you weather the storm and watch them unfold, there just isn’t a way to truly get it. I never did. I thought I understood. I thought I knew even after reading different articles, posts from others going through the same thing, hearing about them, but there is no way for anyone to grasp the degree of how emotionally and physically exhausting they are unless you experience them firsthand. And truly, I pray daily that I never have to go through one again.

I will. We will. It’s inevitable. I know as Tyson gets older and learns a coping mechanism and self-regulating strategies, along with all of us learning what the triggers are and techniques to help him get through them, they may lessen and maybe even stop.

Today we are on our third or fourth day in a row of multiple meltdowns per day. The one commonality is that he is happy and playing and wants to do something and he is told, “no.”  Telling him, “no, not right now” or “no, you can’t have that (fill in the blank, it could be a toy, a snack, whatever it is at the moment)” and it starts out as a simple child tantrum.  He becomes angry and cries. And we ignore him, hoping he will settle down and go on, realizing that just because he didn’t get what he wanted, crying and throwing himself on the floor isn’t going to make it so. But for him, once he starts crying, it sets off something inside of him where he becomes very intense and inconsolable. No amount of trying to hold him close and hug him or redirect works.  In these moments, he is lost within himself. As the meltdown increases, his behavior goes from simply crying out, not getting his way to hitting, throwing himself on the floor, running and banging into the walls, furniture, others, trying to bite you anywhere he can to inflict pain, pain that he is feeling, I presume.  And the only way to get him to help him calm down is to forcibly hold him and hug him tightly, but beware, because then he is closer to you and the headbutting and biting are easier to do.

When he was smaller, holding on to him as he stiffens his body or tried to wriggle out of your hold on him, was harder for him to do; now as he as grown (3 1/2 feet tall and 50 pounds), he is a force to be reckoned with.  He has always had superhuman strength, but when he is in the midst of a meltdown, it is quantified. I joke with others that I don’t need to go to the gym for strength endurance because I have my own little personal trainer that helps me with that.  We can’t leave him to flail around on the floor because he doesn’t care in those moments if he hurts himself or hurls items at us. And that is not acceptable. We also know that yelling at him to stop is futile. By this time, it’s not that he isn’t listening to us, he’s past that point and isn’t hearing us.

Jesus gives me the strength to hold onto him, usually facing away from me, because it’s harder for him to aim his head toward mine. As I become the human papoose to restrain him until he starts to wear down, I silently weep, because I don’t how many minutes it will take to reach him. When he finally starts to relax and cries out for me or his mommy or papaw to hold him, we know he is calming down. He is finally back with us.

He can’t be put in timeout, although this has been suggested because he does not sit still for any reason. So, earlier today I put myself in timeout. As he sat with his mommy, after melting for 30 minutes, I withdrew from the room, just around the corner, locked the safety gate, and sat on the stair steps out of his view and I wept. I prayed through my tears.

I know Tyson is a gift from God. He is truly a blessing in our lives. Even in the meltdowns and they have been more than I care to admit lately. I know that there is a reason for everything that happens in our lives. And I also know that being an autism family, Tyson doesn’t need fixing. He isn’t broken. His brain is wired differently than ours and we expect so much from him to live in our world and conform to the world’s standards of how he should act and behave. I know that he sees things differently and I love that about him, he has taught me so many joys that I take for granted. I just always expect the Sun and Moon to be shining in the sky at the right time of day, but each time he sees them, his heart is full of gratitude that God gives him the gift each day.

Zechariah 13:9 New Living Translation (NLT)
9 I will bring that group through the fire
and make them pure.
I will refine them like silver
and purify them like gold.
They will call on my name,
and I will answer them.
I will say, ‘These are my people,’
and they will say, ‘The Lord is our God.’”

As we walk through his meltdowns, I liken it to the firestorms of life that God allows us to go through so He can refine and purify us into the people He created us to be. Yes, they are painful. No, they are not pleasant for any of us. But they are necessary. Everything each of us experiences during the midst of these teaches us to be a little more compassionate, a lot more understanding and out of the ashes, love for one another rises.

May you know how much Jesus Loves You~right now~in this moment! Jesus can turn any mess into a message of hope. #HopeAlwaysHaveFaith

Blessings to all~Carlene

 

 

Drowning

Psalm 143:6-8 New International Version (NIV)
6 I spread out my hands to you;
I thirst for you like a parched land.[a]

7 Answer me quickly, Lord;
my spirit fails.
Do not hide your face from me
or I will be like those who go down to the pit.
8 Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to You, I entrust my life.

 

HelpMe

 

I am a strong person. I am told that all the time by my friends and family; even people I just met and have yet to form good relationships with. But what no one seems to realize is that I am strong, only because I allow Jesus to be my strength. My strength fails in comparison to that of Jesus.

I believe that all of us have an inner strength we are gifted through the Holy Spirit and it takes patience and requires a trust to tap into that inner strength.  It doesn’t come unless it is put to the test.  I know God will give me everything I need to succeed in every task I am given.  I know He will not set me up to fail. He is good. All the time.

Just as we can become physically exhausted and need rest and rejuvenation, I know my spirit can become emotionally and mentally exhausted and I also need to take time to rest and rejuvenate.  That type of rest and rejuvenation is different for everyone.  And I also know, for me personally, if I do not take the necessary time to rest and rejuvenate my spirit, I feel as if I am drowning and my Lifeguard walks on water, how insane is that? For me to feel as if I am drowning.

I am a “people” person. I am a nurturer, and if I must admit it, I want to be a “fixer” or “people pleaser”. Not in the sense that I have any skill or talent that I can fix anything because Jesus is the only one that changes the hearts and minds of people. I can only make suggestions based on my personal experience and observation.  I am much like my father, who loved being around other people and never met a stranger. I guess that qualifies me as an extrovert, personality wise. Striking up conversations with people, getting to know them, gaining a personal connection makes me come alive.

Knowing all of that, this morning hit me so hard, because as our sweet grandson wanted me to listen to him, about just one more vacuum and how cool they are, I became very frustrated and a little bit annoyed. I could care less, if I hear just one more thing about vacuums, truth be told.  I know I will hear about them though.  He can’t get enough, ever. And I know he can’t control those thoughts. Our brains are wired so differently. I only wanted to go back to bed and shut the world out for the day. Rest, listen to music and some podcasts, fuel up.

Taking time for myself, shouldn’t make me feel guilty or ashamed that I want some quiet. Some peace. And I shouldn’t have to feel bad if I don’t want to hear about it anymore. The guilt in my heart is from the world. Not God. It’s from the fixer in me, that says, “suck it up” you can make it through today, and tomorrow and the next day.

I wonder why we feel so guilty when we want to spend time with ourselves, no agenda or plan, just be. In the Word, God tells us to “be still and know that I am God”. Being still seems so unnatural now.  I used to love being still and days like today I miss those moments. Explaining that to anyone, usually brings a response of “what’s wrong?” And I want to know why does anything have to be wrong? Some days, everyone needs time to themselves, without having to leave the comfort and haven of their own home.

I feel guilty when I think of just me and my needs. How crazy is that? I know it is a very necessary need. I shouldn’t feel guilty, but I feel like I am letting people down if I am not doing everything considered necessary to keep life on an even keel, but I realized today that if I do not take the time for me, the ship will sink and we will all drown.

No one can be an effective teacher or role model in life if they don’t take time to just be.

So, as hard as it is for me, the person that likes to fix things, today I have to take time for me. Drowning, quitting, giving up these are not options. Resting should be the easiest task I have to do, but it’s so foreign to me, I am not sure what resting even looks like.  I guess I will have to keep working on the resting part.

Matthew 11:28 New International Version (NIV)
28 “Come to me, all you who are weary and burdened, and I will give you rest.

Lord Jesus, here I am. You know how weary I am right now. I claim rest in your name and praise you for being the Savior I need. Everyday. Thank you for taking my burdens and bearing them on the cross. Thank you for giving me life. Please help me find the balance I need to not feel so worn. In Jesus name, Amen.

May you know how much Jesus Loves You! Right where you are at this moment in time.

He is always here for you, always! #HopeAlwaysHaveFaith

Blessings~Carlene