Practical Tips for Chronic Pain & Activities

“Hey Mama…will you take us bike riding tomorrow in Chattanooga? It is supposed to be beautiful and then rain is moving in for a few days and we need out of this house!” This is what my kiddos asked me Wednesday morning. And this is what I would love to do with them!

Bike riding along the river in downtown Chattanooga has become one of our favorite activities. I can cruise along in my power chair and the kids can ride! My chair will last 10 miles before it runs out of battery which gives us a full day. You can rent the bikes very affordably and we love to pack a picnic. It makes a wonderful day!

And then…I wake up feeling pretty cruddy. Pain and spasticity have taken over in the night and I am struggling just to get blankets off of me and to sit up. What to do?

This scenario happens more than I wish: Plans are made. Excitement is generated. Mom wakes up feeling awful. I have no control over my body and how it will feel, but the guilt over disappointing my family, and being the reason plans get cancelled is heavy.

Here is what I have learned over the years….

Try anyway. Start with one step and then take another. See how far you can get. That’s it.

When you are in a lot of pain, what you WANT to do, is to go curl up in a ball and stay in bed. The last thing you FEEL like doing is to go transfer over and over and be away from the comfort of your home. But what you NEED to do, is try.

I will always start with saying to my kids, “Let me go take a shower and see how I feel after that okay?” The hot water can calm my pain levels down and loosen my spasticity so that is my starting place.

After my shower, I get dressed. That takes energy…especially when you are fighting your body so. I need some energy for the rest of my day if I am even going to drive safely. Neurological fatigue is nothing to mess with and I am not joking when I say I have had to pull the car over before and take a nap from spiked pain levels.

After I get dressed, and don’t feel like I need a nap, I make my decision. If I am able, in any way, to push myself to be out for awhile, then I do.

Many times, this can depend on the activity. For example, a day of shopping is in and out of the car over and over and over. That is a LOT of transfers! That wipes me out very quickly and increases my pain levels. So, on days I feel really bad, and the kids are just wanting out of the house for awhile, I would suggest a short version of shopping (y’all, pick a couple stores), or go to the mall or a shopping center where I don’t have to load and unload so many times. Or, I will suggest we go to the park or something where they can get fresh air and a change of scenery, but I am not having to do as much work to be out.

A day of bike riding, is actually pretty therapeutic for me…especially on days I feel rough. It is fresh air, sunshine and miles of just rolling along. The kids are ahead of me riding their bikes and there is much time for me to just have the quiet time to think, pray, engage and smile and talk to other people out enjoying the day, take in the beautiful scenery and listen to the birds sing. Yesterday, a dear friend called and we were able to chat and it felt like we were on a walk together. The kids and I have our spots we like to stop at and just hang out at and enjoy.

I always know that a long day out typically means another rough day for me the next day; but, I also weigh that out and plan for it. A day out today absolutely means a low key day the next. I have learned that if I push myself for days in a row, I will pay for it by having to be in bed way too much for a couple weeks and that is no good for my family either. Balance is necessary.

I decided long ago that I cannot change this life I have been handed. And if this is my life, I don’t plan to stop living it. Rough days are rough…no doubt about it. But what would be even rougher on me, is to stop living life with my precious children.

Truly, there are still times when I have to say, “I’m sorry guys…maybe tomorrow”…because I just can’t get it together and need to be home. But I make myself be very honest, disciplined and challenged to make sure that is true. It is too easy to let my body be the boss so I keep myself in charge of those choices and don’t allow myself to take the easier way out. I owe that to my children!

Yesterday, I woke feeling awful. I showered. I got dressed. I decided I would take the kids bike riding. We went all day. It was so beautiful. So relaxing. Such a sweet day of memories, ice cream, people watching and Caleb was even able to join us after work since he was close by. I am so thankful that I was able to go. We came home. I made supper. I was in my bed by 8:00 exhausted, in pain, and very content with our day.

Today it is raining, I feel awful and I can stay home nice and cozy in my home…and very probably my pajamas…all day…and can rest from yesterday. The kids will be tired too and I expect us all to enjoy our “pajama rainy day” today. Oh the perks of homeschool!

I cannot speak for everyone that deals with chronic pain in their lives, but for me, this is what works. This is what enables me to not only live my life, but to enjoy it. That matters!

Try anyway. Start with one step and then take another. See how far you can get. That’s it. Find joy and challenge yourself to get there.

Ice Cream on the Bridge
Happy that big brother joined us!
Starbucks Patio…one of our happy spots.

Balance…Stability…Things You Cannot Change

I was working on a couple new videos for my YouTube channel today and the similarity to what I was “educating” on for spinal cord injuries, and the comparison to real life is too obvious to not mention.

In my 2-part video set, the first video deals with paralyzed core muscles and how that makes us very off-balance because we lack the core stability to keep us upright. It is hard to find your new balancing point and you definitely have to have some external supports in place to be safe.

Does that sound like life at times? Uhm…yes!!

Life can be very upsetting. It can topple you over in a second. You are left very unsteady, and you aren’t even sure which direction you need to head. You are so off balance, you can’t even function in the simplest of ways.

This is where you need external support. Physically, for me, that means special seating and cushions and the angles of my wheelchairs. But spiritual and emotionally, this means our precious Savior and dear friends that love Jesus supporting and rallying around you. It stabilizes. It allows you to stay out of bed each day.

The second video has to do with having a “quad gut”. It happens when your core is paralyzed and there isn’t anything you can really do about it.

And have you ever felt that way? Circumstances that happened that you didn’t choose? You didn’t want? But it happened TO you?

What are you doing to do? Hate it? Detest it? Fight against it?

Or are you going to release whatever it is and just learn to embrace the “less desirable” areas you had nothing to do with and are powerless to change them as a part of the new you?

This new you can hold your head high. Not because your body (or life) is perfect, but because you have learned to accept things you cannot change and live in peace with it.

I hope as you watch these two very “physical” videos, you will come away with the same comparisons to our spiritual and emotional lives and how balance and acceptance are choices that only you and I can make.

Trust me, the rest of your life will thank you.

Video 1: “A Paralyzed Core & Finding Balance

Click to Watch

Video 2: “Quad Belly/ Para Gut – What Is It?

Click to Watch

Getting Back To This Blog!

It has been a difficult couple of years and this blog has taken the hit of it. I am ready to get back here and up my game again. I have continued to write, but it has just been private. For me. Maybe one day, I will share more, but for now, that is how it just had to be. I appreciate all of you being patient with me.

I am kicking off a new look for this blog, upping my YouTube channel activity (you can check my channel out here!) and will probably try my hand at connecting all of this with Pinterest also! I am very excited and ready to roll (pun absolutely intended)!

Alright, here is the new YouTube intro video. Enjoy!

Alicia

Quick Tip To Make Mornings A Little Smoother

My morning begins with trying to roll over first. Then some stretches of my upper body, my fingers and my hands. After I am loose enough to be able to sit up, I do my leg stretches the best I can.

Next on the agenda?

If it is a bowel program (another subject) and shower day, I get that process going. That is about every other day. I will get my supplies, do my thing, get finished, go shower, and either get dressed in my wheelchair (which takes a long time) or I come back to my bed and get dressed. It all depends on the day, the outfit (some are much easier to get on and off), and how spastic my body is or not. That whole morning process takes me about 2 hours or so. And this is why I don’t shower on the days I have an early appointment!

However, on the other days…the days I get to just wake up and get dressed (much easier and shorter mornings!), I have this routine! It saves me a transfer and has made my mornings to be a little easier. I save time and energy!

Here is what I do:

Amazing Transfer Sheet!

Sometimes I wonder why I post videos and write blogs. I know it is therapeutic for me to just write and talk things out…on paper or video. I know it is because I just want to help others. I have learned so much about how to live my life in a wheelchair from other YouTubers, that I wanted to give back also. When I get comments or email from other people with disabilities or from occupational and physical therapists telling me I am helping them, that just thrills my heart!

But this time…I made a video and someone reached out to help me!!

It was about transferring into my bed at night, and my friend Roberta, who also uses a wheelchair, wrote me. She told me about this item on Amazon called a Transfer Sheet ( I had never heard of this) and she told me to buy one and it would be a huge help.

I bought one that day! They are around $25. Was she ever right!!!! It is wonderful!

I will let the video show you the rest!

Now I Lay Me Down To Sleep

I have a little ritual I seem to go through every night to get my body ready to sleep. If it is a good night, I am able to fall asleep very quickly. If it is a bad night, I tend to doze off quickly but then wake up within the hour with nerve pain and stay awake a lot. Making sure my spasms can get calmed down, using my CBD oil and staying warm under my electric blanket are all ways that help my body calm down so I can rest.

A perfect night…

  1. I transfer good.
  2. My spasticity isn’t bad and that allows me to position my legs and body much quicker because it isn’t fighting me.
  3. I can get on my right hip and rolled to my stomach without triggering a full body spasm.
  4. I enjoy my stomach stretch for about 10 minutes and then roll on my left side, cuddle my pillow and go to sleep!

Those nights only take me about 20 minutes from transfer to sleepy time.

But, most nights just aren’t that perfect..especially in the winter. Tonight’s total time took about 40-45 minutes, and if I would have changed into my pajamas, that would have added another 15 minutes easy the way my legs were fighting me.

It isn’t pretty and takes forever but I am doing it independently!

I have realized being proud of your accomplishments is not the same as having pride. God created the world and every day He would look around and say that “it was good” and He is not prideful.

Even though I truly dislike the “routine” of going to bed and how long everything takes when I…am…SO…tired…I am thankful for the outcome. I am thankful for the ability to do it. I am thankful for my independence still.

Let’s all look at our challenges as opportunities for accomplishments that we can be thankful for.

Here is the video of me going to bed last night!

From Manual to Power

My wheelchairs are like shoes. Depending on what I am doing, that determines which wheelchair I will use. Do I use my manual chair which is lightweight, but takes a huge amount of energy and effort for me if the ground is not perfectly level at all times, or do I use my power chair which is much heavier and bulkier yet preserves my very limited energy and spares me a ton of nerve pain each day?

Well, that depends! My manual chair fits in tight places and until my bathroom is finished being remodeled, it is easier to transfer into the shower from. My manual chair is also easier to transfer in and out of. So, if I will be working and sitting in a living room chair with my laptop, knowing I will transfer several times throughout the day, I will stick with the manual.

However, if I am having a skin breakdown issue (like I am for the second time this winter!), then I don’t sit in my living room chair to work all day. It doesn’t provide enough cushion and support and sits too hard on the skin are that has a problem. My manual chair is similar in that once I am in my manual chair, I can only sit in that exact position all day. My only relief from the continual shape my manual chair has me in, is to transfer into a living room chair or to lay on my bed.

My power chair has a LOT of cool features (future video I guess!) where it allows my body to change positions with the push of a button. The back will recline so I can stretch my back without transferring onto the bed. The legs will lift straight out stretching my legs out. It will lift up around 15 inches which allows me the freedom to reach into my cabinets or turn the fan on. It will tilt completely backwards which takes ALL the weight off of my butt and transfers my weight to my back giving my horrific back, butt and leg nerve pain a welcome rest. All of these position changes without ever transferring out of my chair. The downside is that transferring in and out of my power chair is SO much more taxing and hard for me. Why? I don’t know. But it just is.

Since I do switch chairs often during the week depending on my daily physical needs, I thought I would share a video of how I transfer independently from my manual chair to my power chair.

Click on the picture to play video!

CLICK ON PICTURE TO PLAY VIDEO

2021 – Year of Discovery!

Discovery — The First Stage in Building and Running a Digital Strategy. |  by Franklin Nnah | The Startup | Medium

I share much about my life because I want to be real and open. I don’t share everything because at times it involves more than just me and discretion is necessary. This doesn’t make you unreal. It makes you real mannerly and respectful to other people’s feelings.

So, in a weird vague-like manner that I will apologize for upfront, I will simply say that the year 2020 was again life-changing for me. It has not been a bad year, but it has been a year full of a million emotions. It has been a year of, once again, falling into the arms of my sweet and precious Jesus – many times weeping and even some wailing! It has been a year of trying to keep my nose above the water and just. breathe.

It has also been a year of unbelievable miracles! It has been a year of overwhelming support of dear friendships and even strangers! It has been a year of watching God move on my behalf…over and over and over. It has been a year of comfort. A year of provision. A year of trusting and obeying. A year of waiting on the Lord and Him guiding my path. A year of courage. A year of strength. A year of being pushed past what I thought I was ever capable of.

In Joshua 4, God told Joshua to set up 12 large stones.

And those twelve stones, which they took out of Jordan, did Joshua pitch in Gilgal.

And he spake unto the children of Israel, saying, When your children shall ask their fathers in time to come, saying, What mean these stones?

Then ye shall let your children know, saying, Israel came over this Jordan on dry land.

For the Lord your God dried up the waters of Jordan from before you, until ye were passed over, as the Lord your God did to the Red sea, which he dried up from before us, until we were gone over:

That all the people of the earth might know the hand of the Lord, that it is mighty: that ye might fear the Lord your God for ever.

In my phone, I have kept a list all year long of my “Rocks of Remembrance” where God showed up over and over and over. I added to that list again today. That is my 2020. It has been my Rocks of Remembrance year.

I have no clue what God has before me in 2021. I feel my word for they year is DISCOVERY! I have no clue what those discoveries will be. My prayer is to discover even more of Jesus and the precious life He has set before me.

If that is accomplished, everything else will fall into place.

2021. I am ready.

Extra Thankful For My Kids & The Chores They Do!

It isn’t because I can’t “do” a lot of chores. I can. There are a lot I cannot do, because I can’t reach them. But, there are still many I can do. So it isn’t that I am not “able” to do them. The question is…at what cost? What won’t happen, or what now will happen because I did?

The kids are gone for a couple days. I am home alone today which rarely happens. The kitchen and living room were messy and I wanted them neat. No problem. I’ve got this.

  • Start a load of laundry
  • Unload dishwasher
  • Reload dishwasher
  • Clean off kitchen counter
  • Tidy living room
  • Sweep both rooms.
  • Get to my computer work.

Done.

If my kids are home, this is how morning chores go…

  • Elisha unloads and loads the dishwasher
  • Macey cleans off the kitchen counters and straightens the laundry room
  • Audrey gathers the kitchen trash and takes it out and tidied the main bathroom.
  • Isaiah tidies the living room and dining room and just recently added sweeping both of these rooms because he can’t stand to watch me sweep (which was my chore).
  • Caleb works full time and does full time college in the evenings so he keeps up his own room and laundry and does whatever odd jobs I ask him to do randomly. He is also responsible for getting the weekly trash to the road for the garbage truck.
  • I am the foreman and keep track of this wonderful clan 🙂 I also do the meal planning, grocery shopping, and much of the cooking!

Within about 20 minutes, this house is tidy and ready for the day! It is a smooth operation and these kids have got their game on!

So…today? Well, it wasn’t smooth at all! My cold has me weaker, my spasms kept getting in the way, and that 20 minute job lasted almost 2 hours! I was tapped out the rest of the day and tonight I hurt all over like I have been to the gym! 🙂

My house does look much better so it may have been worth it.

I just want to say…kids, you are amazing. Thank you for how well you help keep this ship sailing around here! I love you!!

Introducing…Vlogging!

I am going to merge my YouTube channel and this blog and “marry” them a little!

When I make a new YouTube, I am going to throw it over here as a Vlog (video blog). I think it will be helpful to mingle them together. The more others can be helped in their disability journey, the happier I am to share what I have learned and want to help others with.

YouTube has been a huge resource to help me learn new skills, and their is such a great community there. Blogging has been a huge outlet for me in my own personal healing journey. Writing is therapeutic and I have never cared if anyone even read. I just needed to write.

Over the years though, people do read. And I have loved to help educate and teach things in my life that I have been so honored and humbled to learn.

I took the kids Christmas shopping and we were out all day and ALL of us were tired. This Mama was beat though. It was a great time for a “Tired Transfer” video for YouTube. So here is to our first Vlog over here!