As previously written in other posts, I have struggled this past year with my strength. Let me start with saying how thankful I am for the function that I have!! My spinal cord was injured at the C5-C7 level and I have SO many friends with that same level of injury that would LOVE to have the function that I have! So, I am not trying to sound pitiful so please don’t read it that way. However…for me, I can tell a major change in what I was able to do and how much effort it takes to do it now. I have lost some pretty major upper body strength and so it has affected my daily functions. Physically, I need some help in the mornings with my morning routines, and even more at bedtime because I am very tired. Home chores take me SO long and most of them I cannot even reach so my family takes care of most things. Since I am the manager of this home, and I need much more help physically from them, I want to make sure that they are not being dumped on too much.

So, how do you know if you need attendant help or not?

This is a very personal decision! Trust me on this…it has taken me a really long time to get to this place. Like, 9 years to be exact and I have been paralyzed 9 years. 🙂 I am just at a different place this past year with my needs being redefined, and I feel my family is also at a different place. I need more help with some of my care. My oldest daughter went to college, my son is working a job, my other son has become a hobby farmer and that will be extra time he will need. My life is very full and I love it, but it drains a lot of energy from me. So, I am personally at a new place and feel this is the time.

I have friends who need 100% physical care for dressing, bathrooming and showering and to be put in their chairs. Once in their chairs, they drive to work and work all day and then come home and have assistants to get them in bed. Others, have assistants who come to work with them and take care of their needs while there. Others only have assistants come in a couple times a week to help. It is very personal to your disability and needs. Only you know your needs.

Some questions to ask:

• Do you feel that things are piling up because you just don’t have the ability to keep it up? Is your house messy? Is your bedroom/personal area out of control? Does deep cleaning ever happen?
• Do the daily things that always need to happen (meal prep, light cleaning, personal hygiene or health care) get put off because it is so extremely difficult?
• Do you spend more time in bed because getting up and ready is so difficult?
• Do you eat well because meal prep is too difficult?
• Do you find yourself not ever wanting to leave home because of how hard it is to maneuver out in society alone?
• Do you have family members who are happy to help, or do you feel that you cannot ask them because they make you feel like a bother? (mine do not, but I have heard awful stories that really hurt my heart)
• Do you withhold asking for help simply because you don’t want to be a bother?
• If you plenty of money, do you feel you would hire someone to come help you?

If you answered yes to any of these, you probably need to think about trying to get some help! Depending on your disability, your income and your insurance, there should be something out there to help you find help. I live in SC and because I am on Medicaid (for the aged, blind or disabled), I was able to apply for the HASCI waiver. This is all new for me, but we are almost through the entire process and I just applied at the beginning of this year. Hopefully, I will have help within a couple more months!

If you have anything to add to this, please share in the comments for other readers!

Chronic. Intimidating word isn’t it? Whenever I hear that word it gives me a mental picture of someone curled up in a hospital bed dying! However, that isn’t always the case. Chronic means “persistently for a long time or constantly recurring.” For those with long-lasting health conditions that just do not go away, life can get very discouraging.

When I woke up paralyzed in 2009, unable to feel or move anything from my upper ribs down, my arms extremely heavy and fingers slow to respond, I had entered the world of a chronic health condition. Caused by a virus, the swelling around my spinal cord had permanently damaged it. This wasn’t going away.

Nine years later, I am still here and living life from a wheelchair. There are hundreds of small things that constantly pop up as secondary conditions to paralysis and each time they do, it is an opportunity for discouragement. However, I am happy. Life is precious to me. I am still on the journey and learning each day, but may I share some things I have learned to combat discouragement and offer some practical help?

Emotionally

• Cling to Jesus!

I know we say it, but really DO it! I have spent many a night in fear of the future, in horrific pain, crying and having a panic attack…and I just ask Jesus to please come and hold me. I tell Him I am a scared little girl and I need my Daddy to hold me. I just pray. Do you know that most of the time I fall asleep praying? I KNOW He has rocked me to sleep comforting His girl.

• Keep your eyes on the bigger picture!

When you are in the moment of discouragement, it hogs the lens of life. Everything looks dark and gloomy. But step back. Take in the whole picture. God has been faithful; He will be again! Don’t get sucked into the emotion of now. Keep an eye on the reality of our tomorrows.

• Look for the fingerprints of God all around you!

When I see the sky, I remember how big God is, and He is in control. When I hear birds sing, I remember that He cares for the sparrows and He cares for me. When my heart is moved watching others show compassion, I remember that God is full of compassion for me! Intentionally look for ways to let life and others encourage you! Don’t look for the huge things. Look at the million little things that go on every single day. It could be a smile, a song, a hug, a call or text, a cuddly animal…anything good! Notice them. Appreciate them. Together they become huge!

• Dwell on what you can do!

There are many losses that can come with long-term issues. Grieving those losses is a natural process, however, don’t wallow in them. Instead, make a list of what you can do, or even what you can learn to do. Find your new niche and do it well. Find a sense of accomplishment that makes you still feel like a productive citizen. We all need purpose in our lives to thrive. Discover it and dwell on that!

Physically

• Quit Worrying About What Others Think

This was hard for me and took me several years to get to this place. Unless others live in your body and know what you deal with daily, their opinion of what you should or should not do cannot have much weight. My husband knows me more than anyone, and he is also the first one who will tell me his feelings. Sometimes that has been to say no to others, or to go to bed. He has also been a voice that has told me to stop pouting and to go do something. Learn who these people are in your life and give your ear to those who truly know your situation. If they do not, then ignore them.

• Prioritize!!

Having just said that people don’t understand, I must also say that we DO understand. I know when I want to skip out on something and blame my disability vs. knowing that I really cannot do it without serious consequences to my health. Some of this has been learned easy, and some of this has been learned because I have failed to prioritize. A rule I live by: If I can do anything else today, then I can do this. Meaning….am I too tired to go to church on Sunday? Will I also be too tired to go out to lunch? If I am too tired for Sunday, what did I do Saturday that wore me out? Did I have to do that Saturday? Can I change my schedule to make Saturday’s lighter, so I can attend church on Sunday?

I have had to learn to look at my life a week at a time. I must look at what needs done that week, what is most important that week, and structure my week accordingly. It is imperative that I schedule rest days, or I end up in bed 2 weeks at a time. Sometimes, a certain activity will absolutely cause me a tremendous amount of pain later and the entire next day. I avoid those things like the plague if I know I need to do something the next day and need to be able to move around! Other things, with my disability, are invisible secondary things that I cannot control. If my stomach is messed up, I will need to stay home where my accessible restroom is…and quite frankly, clean clothes. To deal with all of that while out and about is extremely difficult and embarrassing. Although I may look great and feel great (except for my stomach being messed up), I cannot leave my home.

There is not a one-solution-for-all when dealing with prioritizing for your chronic health condition as we are all unique. But, I would dare to say the unifying statement for all of us is that it is VERY easy (because things are so much more difficult for us) to use our chronic health condition as an excuse when we really wouldn’t have to if we prioritized and were wiser with our planning.

• Challenge yourself each day

I was told early on, to push yourself to do one thing each day that you just do NOT feel like you can do. Some days, this is honestly just getting up, getting a shower and getting dressed! It takes all my strength and I am done. Thankfully, this is not every day! Other days, it is taking on a project with the kids, a day of work, or a day out with a friend. Regardless of what that one thing is, do it.

The hardest day of my week is always Sunday. I must get up early to get my body ready for the day, and I am already worn out by the time it is time to go to church! I am in my wheelchair chair for hours, which make my nerve pain very close to unbearable. I don’t always feel well, but so desire to be an encouragement to others! So, I play this little game with myself. I start with the hard and just try to do it. I know that at any time I truly can’t, I can stop. But I push myself to try…one little step at a time. These are my thoughts to myself:

1. Get up. Literally, get yourself set up in bed. Don’t lay. Sit up. That is a job just sitting up with my morning spasticity! (Transfer into wheelchair)
2. Once up, go to the bathroom (transfer to toilet) and prepare to shower (Transfer back to wheelchair from toilet, and transfer from wheelchair to shower chair)
3. Take a LONG hot shower and get your body feeling better for the day. (When done, transfer from shower chair back to wheelchair)
4. Get your clothes and get back on the bed to get dressed. (Transfer from wheelchair to bed) Don’t just lay there or you will go back to sleep from being so exhausted from all the transferring already! (We are now up to 6 transfers!)
5. Immediately start the process of getting all your clothes on (thankfully, most of the time with help from my sweet hubby who cannot stand to watch me struggle doing this) and I gladly let him because I am beat!
6. Transfer back into the wheelchair to go blow-dry my hair and put on my makeup.
7. Unlock my door and let my kiddos rush in to show me how handsome and pretty they are and just hang out. This always makes my morning brighter!
8. Time to go to church and roll out to my van where I transfer again from my wheelchair to my driver’s seat, drive to church, transfer from my driver’s seat to my wheelchair, and wheel in the church ready for breakfast and a smile!
9. Want the truth? If I did what I “felt” like doing, or what is easy, I would have never left my bed!

This is not to say my life is so bad. This is totally my normal and I don’t think of it like “this is so awful”, but it is my reality. I just know what is important that day, and one step at a time you do the next thing you don’t always feel like doing. But would you like to know another truth?

Even though Sunday is the hardest day of my week, it is also one of the happiest!

 I am encouraged by serving and doing valuable work, I am encouraged by seeing others who I know suffer and are so faithful, I am encouraged by the singing and the preaching and teaching of God’s Word, I am encouraged by the friendship and fellowship of my church family and I am encouraged that I was a part and didn’t miss out because it was “hard.”

A lesson for me is that many times what has been physically difficult has been extremely rewarding emotionally.

You must find the balance. There have been times I have had to say “no” to afternoon company because I need to go to my bed all afternoon and rest so that I can go to the evening service. There are times, like this past Sunday, that I wondered if I would even be able to go Sunday evening. I woke up with a red pressure area on my tailbone that can quickly turn into a pressure sore. I went to church that morning with both Jimmy and I worrying it might get worse at church. I came home and stayed in bed all afternoon and by evening, it was looking better. Had it not looked better, I would have stayed home in bed and not went to church. Not because I felt bad, but to keep me from getting a pressure sore that could keep me in bed for months at a time!

The point of all this is to say that you know what your hard is. You know what you need to do to challenge yourself a bit more. We are always easy on ourselves. It is called self-preservation! However, when a long-lasting condition is part of your life, you can’t always live on easy. You seek the necessary and find the strength to push yourself from easy to necessary. It is a challenge we need to have for ourselves.

I have belabored this point, but I feel it is SO important for those of us who have health challenges that do not go away. This is our life, so we must fight ourselves with this very point, or it is just too easy to become lazy which leads to discouragement which leads to depression and it is a vicious cycle that is hard to get out of.

Chronic health conditions do not have to mean that life is over. It doesn’t have to mean you are dying. It means that life is not as it once was, and you must think through many things to deal with your own issues.

For most things, the quality of our lives is dependent on the quality of our choices. Therefore, we must choose wisely to help us emotionally and physically.

If you have thoughts to add, please comment below and let me read them! I always love learning what has helped others.

Here we are again – March 12th. This day, 9 years ago, I woke up from a 24 hour nap…completely paralyzed. No feeling or movement from my upper ribs down, my arms SO heavy and stiff and slow to respond. One day you are fine, and one day you are not. Just that quick.

Today is my anniversary. The day our world turned upside down. The day I choose to remember and to reflect on where this journey has taken me. Will you join me?

I think if I could break down the last 9 years it would look like this…

Year 1 – I barely remember! Becoming paralyzed while 5 months pregnant, a million doctor visits, hospitalizations, the birth of my healthy baby boy, multiple complications, and finally the start of therapy. It is all a gigantic blur with lots of tears – sad and happy.

Year 2 – Therapy!!! Occupational therapy, physical therapy, repeat over and over and over. This year was driving 500 miles a week with 6 children, 10 and under, and a precious hubby who would sit for hours in a waiting room with all of those kids while I had therapy. I couldn’t drive so he drove me. We didn’t live near family and you don’t want to ask people to babysit your 6 children (including a baby) 3 times a week for multiple hours a day. We drove  1 1/2 hours to therapy, were there for 2-3 hours, and then 1 1/2 hours home. I would be so worn out, I would sleep all the way home and the rest of the day once home. I was absolutely exhausted. I worked so hard in therapy trying to get every ounce of return I could. It did help and I learned so many new things and much independence to take care of myself. But…not much physical return. Which led to year 3.

Year 3 – one of my toughest years. Therapy wasn’t seeing anymore progress in me so I was done. And I was ready to be done. I wanted my “normal” life back with my family. But that normal was a new normal and now it felt really permanent since the paralysis hadn’t gone away after all that therapy. Emotionally, this was my toughest year although I was feeling much better physically. I was learning how my new body worked and how to read the signs it gave me. I learned how to deal with many of my physical challenges and some of the fear and anxiety had really calmed down. I also finally got a very good neuroimmunologist  that year that completely understood my spinal cord injury that had been caused by Transverse Myelitis and he taught Jimmy and I so much. I think Year 3 was a year of emotional transition for me from the old “able-bodied” world to becoming a full-fledged member of the disabled community. It was a rough year of getting through that process, but I finally found peace in that future.

Years 4-7 – Life continued. We moved from OH to TN to SC as Jimmy’s pastorate changed. We made new friends, kids kept growing up, we had victories and failures in our marriage, our parenting, and our Christian lives. Emotionally, things were very good. I became much more involved in the disability community and made many dear friends. Opportunities to speak and share my testimony started pouring in and kept me very busy! Physically, I had a few things come up that is common with spinal cord injuries but nothing major. Life is beautiful and we love living it!!

Year 8 – Some physical changes. I have always dealt with spasms, nerve pain and fatigue, but this past year has been the worst. And…it has really affected my upper body strength. My spinal cord was damaged at the C5-C7 level which is in your neck. It was caused by swelling and so I am considered an incomplete injury – which means some nerve signals DO get through. They can go through really slow, or really confused, or really painful, or they might even actually work!! If I had a complete injury and NO signals went through, I would have very little use of my arms at all. So, I am very thankful for all I can do with my upper body! But, I can tell a big change in me this year. It has been very troubling for me as we have been trying to figure it all out! Is pain causing the fatigue and weakness? Is fatigue causing pain? Is something going on in my body I don’t know about (because I can’t feel normal) and that is causing spasms? Are the spasms causing the pain or is the pain causing the spasms? Am I fatigued because something is wrong or because I am not sleeping good because of spasms and pain? See how confusing it is?!!! It is also really frustrating!

This past year has had me in bed way too much just because I cannot physically sit up in my wheelchair for too long. I can’t even sit in my living room chair because the nerve pain and spasms just get so bad. The only thing that eases it up is laying down. Thankfully, it is not every day!! But it has put a major damper on longer activities because I just cannot tolerate it.

My arms (especially my left wrist and fingers) are much weaker. So…my activity level has been down because I just haven’t been able to lift weights or do too much active because it causes such pain and just flat out wears me out and I am shot to do anything else. So, that has been a bummer. When I try to push myself and power through it, I end up paying dearly for days. So, Year 8 has been a year of many doctors visits and tests trying to make sure things are okay and trying to figure out what is going on and what we can do about it.

I am happy to report that that this year ending has been much more encouraging than it began with a wheelchair seating evaluation about 3 months ago. We finally feel that we have some answers. Also, I have a dear friend who is a physiatrist (a spinal cord rehab doctor) and he has been working with me to figure some things out. Dr. Chris is retired now, but is a wealth of knowledge and has helped me sort through some problem solving and solutions to try and work through with my family doctor. My family doctor has also been so supportive to explore all avenues.

I already wrote about what the physical therapist/seating specialist felt was my issue with my current wheelchair no longer giving me the support I need and this leading to overuse of my already weaker upper body muscles. This was backed up by what Dr. Chris told me he thought was going on. I felt that with both of them telling me, they were probably on to something. (You can read the full post about it here)

So, this year, Jimmy and I decided that I needed to take this year off and just rest. He has been saying it, several dear friends had been telling me to slow it down, and then my own body. No speaking engagements (other than 1 in the fall when we have family vacation and 1 local) this year. I think I have said “no” more this year than I have in my entire life! It has been hard, but SO wonderful! Our church has been amazing to just jump in and take such a load off of me. It is VERY hard for me to not be in the middle of everything, but it has been SO nice to not have to. 

The other change is that I have also started using a power chair more if I am outside on rougher terrain or for a long day or evening. Dr. Chris and the therapist both strongly recommended it. I was gifted with a very nice power chair that reclines and has a tilt feature. This may sound silly, but when you are in SO much pain you cannot endure sitting one more second (I feel like I am sitting on a huge pile of sizzling hot shards of glass from my lower back all the way to the heels of my feet) and your only option is to get in your bed, the power chair has been wonderful!!! I just tilt back and get all the weight off of my backside for a little while and it is just like laying in bed! The pain starts easing up to where it is bearable again and I am good to go! NO BED!! It has really been quite amazing for me. And…I can tell it has made a HUGE difference which further proves what the seating specialist says. I do believe that when I get my new manual wheelchair with better supports to hold my body in place that it won’t take such a tremendous amount of work to get me from point A to B which in turn should help my pain, which I now think causes my spasms to get worse,which makes sleeping very hard, which exhausts me. It has been a vicious cycle this past year but I truly feel there is a light at the end of the tunnel!!

So, to Year 9, I want to say….

• The first year of this ride, I didn’t think I would even live to see this year, so I am thrilled I did!
• I am okay with this being 9 years. It’s such a wonderful journey – even through the rough times. Life is a precious gift!
• You and I are going to make it just fine, Year 9, if the Lord wills.

Thank you, dear readers, for following my journey with me. Thank you for your friendship and support. Thank you, most of all, for your prayers for me and my family!

When I was first paralyzed, we lived in Ohio. The winters there were long and cold. We didn’t get huge amounts of snow at a time, but many little ones that just seemed to keep the air wet and the ground a frozen sludgy mess. I used to not mind winter at all. I enjoyed the slower pace, and bundling up with the kids to go play.

Until my spinal cord injury…

The cold just isn’t the same anymore. At all. It is absolutely unbearable and it isn’t just me. It is very common within the spinal cord injury community. So, what’s the big deal?

Here is a brief description of why the cold is not only miserable for us, but even dangerous:

“Thermoregulation is impaired with spinal cord injury, resulting in poikilothermism (adjustment of the body temperature to the environmental temperature) because the peripheral temperature sensations cannot reach the hypothalamus, which controls temperature. Additionally, the ability to sweat or shiver to control temperature is impaired below the level of injury. The higher the injury, the greater the problem with thermoregulation. Temperature must be monitored carefully and the environment adjusted as needed. Subnormal temperatures and hypothermia (<35 C/95 F) are common. Warming blankets may be necessary to maintain adequate temperature but heavy covers should be avoided. If fever occurs, cooling blankets may be necessary. Overexposing the body, such as during bathing, should be avoided.”

If you scroll to the bottom of this post you can see a few sources I have linked to and you can read a lot of good info. But I want to keep it simple here.

Simply…it is not that we don’t like the cold. It is that our bodies literally cannot help us with getting too cold or too hot anymore.

When I get cold, my nerve pain goes through the roof. My spasms and spasticity get really bad and my body gets hypersensitive. Meaning, if you touch or move my legs wrong, you will probably get kicked and I have zero control over that. My spasticity makes my body feel like I am wrapped in very tight rubber bands from my shoulders down and makes moving extremely hard and very painful. I lose all fine motor skills.

I. Am. Miserable! Sunday morning, it was very cold here. I only left the house to go to church! Just from the that, it took me until 4:00 p.m. that afternoon to get warm! Just in time to go back out for our evening church service at 7:00! 🙂 I don’t like getting cold.

Here are some tips that we do in our family to try to help me from getting too cold. I am also providing links so you can see what I am talking about!

Inside:

• Electric Blanket. This is my very favorite “warmth” tool. It is large enough to wrap my body up like a cocoon, but small enough to handle and not get stuck in.        Sunbeam Fleece Heated Throw, Assorted Colors and Patterns
• Layered Clothing. Because you can overheat (even in the winter with all the trying to stay warm), it is best to dress in layers. Multiple thinner layers are much better indoors where you can add to or take away as needed to help keep your body temperature in the comfortable zone.
• Thermostat Settings. In my dream world, my house would always be about 75 degrees. But, I live with my family and I am very outvoted! However, we do have to keep our thermostat on 70 degrees. That is the absolute coolest I can stand in my own home without feeling very bad. And even at that, I ALWAYS am sitting underneath a blanket – summer and winter. It may cost a little more in electricity, but keeping home temps bearable are very important.
• Space Heater. I keep a space heater in my bedroom on my side of the bed. My hubby is hot blooded and many times needs the overhead fan on to sleep. That air hits my body like knives so I keep the blankets over my nose and a space heater in my face!  Lasko CD09250 Ceramic Heater with Adjustable Thermostat Tabletop Or Under-Desk, Black
• Fuzzy socks/ Furry slippers. During the day, I wear warm fuzzy socks or furry slippers all the time. I rarely wear shoes if I am going to be home all day and I find the fuzzy socks provide more padding than regular socks to help not get pressure sores. Of course, they are both also warm which helps keep my feet warmer. (Make sure to buy at least a size larger to accommodate for the extra fur and for feet swelling throughout the day). Cozy Niche HomeIdeas Women’s Faux Fur Lined Suede Comfort House Slippers, Anti-Slip Autumn Winter Indoor/Outdoor Moccasin Shoes (5-6 B(M) US, Brown)
• Hot Tea. A hot drink warms up the insides and really helps to take the edge off the intense cold. I also like coffee, but try to keep my acid levels down. So, I mostly drink hot tea. Any herbal tea is delicious. My favorite daytime usually has a mint in it and at night I enjoy drinking a Sleepy Time Tea with valerian and chamomile to help relax my body and spasms.
• Hot Showers. If I am absolutely miserable, I will go take a hot shower. It is a lot of work to shower so I have to be really, really cold to go to all that trouble.
• My Hubby. Even if I am warm all evening, when I lay down at night, I will freeze for about 20 minutes. My theory is that the cold blood that pools in my feet and legs all day from bad circulation suddenly circulates when I lay down. It truly does feel like ice water running through my veins as it is a very deep freezing chill. My sweet hubby will put my legs and feet against his warm body heat and rub them until they get some warm blood flowing back into them! After about 20 minutes, I eventually warm up.

Outside:

• Stay In. This isn’t realistic for most of us, but trying to avoid extreme temps for long periods of time is the best prevention. When you have to be out, try to make the outdoor time as short as possible.
• Warm Your Vehicle. If possible, have your car started and the heat going before you get in. The metal of a car holds in the cold and it quickly seeps in! Get the car warm before you have to get in!
• Scarf. This has been my newest find this year and I am in love! The neck is the most important area for cooling down or warming up, and I have always tried to keep my neck covered, but this big scarf has been wonderful! It is such a large scarf, I can wrap it over my head, or I can bunch it up around my neck, or I can pull it around my shoulders like a cape, or I can lay it on lap as a blanket….did I say I love this scarf? I will never have a winter again without one! Get one already! Achillea Long & Wide Scottish Tartan Plaid Large Cashmere Feel Blanket Scarf Check Shawl Wrap 80″ x 29″ (Red)
• Furry Boots. I have a very warm pair of fur-lined winter boots that zip up the side so that I can get my feet in them easily. If I know I am going to have to be out in the weather, I always wear these boots to help keep my legs and feet warmer. Regular shoes don’t seem to keep my feet as warm.
• A Blanket. If I will be outdoors, or in any place I think I will be cold (like a movie theater or something), I take a lap blanket with me. If I forget, I always regret it! I also have one in my vehicle when we travel, as my family and I don’t agree on car temps either!
• A Hoodie. I don’t do well in coats as I feel very restricted to push myself in my chair. I always wear multiple layers, and wear a large hoodie with a front pocket to keep my hands in. If the wind is blowing at all, I love having the hood to put up around my face.
• Gloves. This is the first winter I have not had to worry too much about gloves. I bought RibGrips as my wheelchair handrims. They are soft and rubbery and provide a tremendous amount of grip to push my chair. Since I don’t have a strong hand grip to push myself, these grips have been a game changer for me! When I had other handrims, they would be extremely cold and very slick in the yucky weather. When I have needed a winter glove, I have always enjoyed a football receiver glove. It is full fingered and has a rubber side which provided much-needed grip. Now that I have the RibGrips, I don’t need a rubber glove for grip. A glove for warmth if I am out is enough. www.ribgrips.com (use code AR15 for a discount!)

These are my tips and helps for staying warm this winter – inside and out! If you have any of your own tips, I would love to learn them so please share in the comments!

Stay warm!!

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Sources:

http://www.rn.org/courses/coursematerial-10006.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4654076/

http://www.spinalcordinjury-paralysis.org/forums/viewtopic/11775/54840

Several years ago, I had a new friend and she had an adorable little girl who was trying to wrap her mind around my paralysis. She touched my leg and said, “So you can’t feel that?” I said, “No.” Then she rared back and kicked my leg – very hard!! And then she said, “Well, could you feel that?!!” Horrified, her mother scolded her for kicking me and informed her that I most certainly could bleed and get hurt. I just started laughing because in the mind of that little child – if I couldn’t feel something lightly touching my leg, than surely I could feel a big kick! She was disappointed as I told her I could not feel that kick either!

Apart from little children, I do get asked quite often exactly what I feel and do not feel, and what I can or cannot move. Since the general consensus seems to be “oh…you are paralyzed and therefore you don’t feel or move anything” is incorrect, I thought it would be fun to educate a little!

NO TWO SPINAL CORD INJURIES ARE ALIKE

One thing we must get straight, and has been mentioned in other posts on this site, is that spinal cord injuries are like snowflakes – there are no two that are just alike. What I am going to tell you describes me, but that doesn’t mean another person with a spinal cord injury will present with sensation and movement like mine.

UNDERSTANDING NERVES IN THE SPINAL CORD

I want to clear up something. It is incorrect to say that we have no feeling or movement. We are much more neurologically complicated than that. There are sensory nerves (that control sensations such as touch, pressure, pain and temperature) and there are motor nerves (that send the signals to move to different areas of your body depending on where they are located on the spinal cord). When the spinal cord is injured it affects both the sensory nerves and the motor nerves. But how much is affected? Why can someone move a toe but nothing else? Why can they feel vibrations but not a pin prick? Why can they feel deep pressure but not light touch?

MOTOR VS. SENSORY NERVES

Since the sensory nerves control so much varied sensations, a person with a spinal cord injury can have a variety of “feelings”. Also, when a spinal cord has been damaged, the nerves get very confused and they do not carry the appropriate signals back to the brain. So, at times, if someone taps my leg and says, “Can you feel that?” I cannot feel the tapping of their finger on my leg, but 9 times out of 10, I will feel a sudden electric shock down my opposite leg. My confused nerves have the wrong leg (called reciprocal pain), and it has interpreted a light touch as a bolt of lightning. Others may feel different as all of our nerves interpret with their own language.

The question “what can you move” is valid, but a word should be added. The question should be, “What can you move voluntarily?” If you could see my legs move at times, I would never be able to convince you that I am paralyzed. When my legs decide to move involuntarily, and on days of my worst spasms, my legs jump and thrash and kick wildly. My body stiffens up so tight and my legs will cross and my strong hubby cannot get them to bend no matter how hard he tries. Y’all…I have some powerful leg muscles!! But they are not in my control at all. They do their own thing and I watch them, totally disconnected, except for the pain they are causing me in that moment. It is very surreal to me – to see all the power that is had in the times of spasm and still not be able to connect it to my brain for voluntary movement. So, what can I voluntarily move?

My injury is high (C5-C7), but I am an incomplete injury which has left me with an unusual body (most incomplete injuries have weird nerve interpretations). If I was a complete, I would have very little use of my entire arms. However, I am not a complete. The difference in my sensory and motor nerves are varied all over my body.

If you look at this chart, you can see what areas a C5 level injury would affect. It would affect that level and everything below it.

However, if you look at this image, you can see how simplified the above photo is. This photo is all the sensory and motor nerves that are within that same level.

I think you can see now why spinal cord injuries (as most are incomplete) present as unique as snowflakes.

• What signals get through to which nerves?
• Which nerves are they – motor or sensory?
• Does the signal go through as supposed to or does it get a scrambled message and do what it wants?
• Does it then create normal sensation and voluntary movement? Or abnormal sensation and involuntary movement?

For me, I have better motor nerves in my arms and hands than I do sensory nerves. On my right arm, I cannot feel pin prick or light touch and I have decreased sensation for hot or cold. On my left arm, I can feel light touch but not pin prick. On my chest, I do not feel pin prick or light touch but can feel deep pressure. I lose all sensation from my chest down with the exception that I remember feeling some vibration in my legs when I was in therapy and they used high levels of electrical stimulation on my legs. I can also feel a little deep pressure on the tops of my feet when Elisha jumps on them. It doesn’t hurt at all, but I can usually tell he is on them. Other than that, my sensory nerves are pretty shot.

My motor nerves are better though in my upper body. I have good movement in my arms and hands, although they tire and get very heavy and burn horribly if used too long. There is not a time that has went by when I play the guitar or piano that my arms do not feel like someone has been sanding them with sandpaper. The longer I play, the worse I will play as my fingers will no longer go where I tell them. I cheat on many chords because my left pinky will not do much against resistant. There are weird moves I just know not to do or have learned to compensate. If I bend my wrist, it makes the grip in my fingers tighter and they work better. If my hand is facing down and I am trying to pick up or grab something, it is very difficult for me to do without bending my wrist to compensate. I have learned to grab and flip my hand over quickly to keep from dropping things. However, dropping things is a norm for me too. 🙂 These are really very minor in light of how it could be, however, I do feel these deficits daily.

The muscles in my back and stomach are very weak and I can have days where they feel like they are firing better, which makes all my transfers, rolling over in bed, getting dressed, toileting…much easier! And then there are days where they are just not having it. I need more help on these days and these are the days Jimmy helps dress me and gets me in and out of my chair. Typically, at the end of big days, Jimmy always has to help me undress and get me into bed. I welcome that help!!

From my upper ribs down, I pretty much have no voluntary motor nerves…with the exception of a big toe that I can get to move a couple of times on a good day . Don’t know where that nerve comes from!

This diagram shows where my sensory nerves (in blue) and motor nerves (in pink) are gone. However, if all my friends with the same exact level marked their motor and sensory, it would look different from this.

Motor

Sensory

MUSCULAR  AND NEUROLOGICAL PAIN

Apart from what is normal sensation or movement, there are many of us who suffer with chronic muscular and neurological pain. The muscular is from overuse of the muscles that DO work and we overcompensate with them for so many that don’t work. The neurological pain has to do with those confused nerves that fire and shoot and stay confused. Many of those signals get sent as pain. This can change based on our time spent in one position too long (either in our wheelchairs all day, or in our beds all night), the weather, stress, illness, fatigue, spasms and spasticity. A positive is that neurological pain can let us know that something is wrong in our bodies that we cannot feel normally. For example, if something is “off” my legs start spasming and won’t calm down and electricity starts shooting up and down my legs. I know to investigate for something wrong – a tight shoe, a wrinkle in my clothes, a full bladder…or other things. I always feel like I am sitting on sharp gravel, but the longer I sit in one place, that sensation turns into shards of glass and I become extremely uncomfortable and quite miserable. Although I HATE that pain, I am thankful that it reminds me to do pressure reliefs and to reposition myself so that I won’t get pressure sores. My spasms and spasticity has increased the last two years, and I am trying to learn ways to trigger them so that they can help me with other functions. For example, if Jimmy lifts me straight up out of my chair quickly, my legs will stiffen and can hold my body weight for a few seconds. That takes some of the load off of him while he can reposition. However, it is completely unpredictable how long that lasts and when they give in, I collapse so it isn’t dependable. I would love to learn how to make that a little more dependable. I am hoping PT could help me with that.

There are times though, that you cannot find an explanation for your pain and you just have to deal with it.

CONCLUSION

I hope that you have learned that people with spinal cord injuries:

• Can feel things in their bodies. It just isn’t what you normally feel.
• May have movement in their bodies. It doesn’t mean it is voluntary!
• Some parts of the body can have sensation or movement that is somewhat normal and voluntary, but still not be able to feel or move other things as incomplete injuries have confusing nerve impulses.
• Neurological pain can still be felt in areas where there is no sensory nerve signals.

If you have any more questions or comments, please share with me!

The last 2 years have been pretty rough. I have experienced a LOT of pain…that eases up but never goes away. I hate the 1-10 pain scale, but a good pain day for me is never a 1 or 2. I had a friend ask me once where my pain was and I told her that she would have to give me a minute. I had to stop and analyze and scan my body to even be able to tell her. Or what kind of pain? Muscle pain? Bone pain? Nerve pain? Joint pain? Yes! I had pain from my neck to my toes. I have also fought terrible fatigue, which has been since day one but much worse when my pain levels are high.

I have tried so very hard to stay off pain meds. I really, really like how they make me feel and I know how very easy it would be to become dependent on them and as long as I can manage my pain without going crazy, I want to stay off of meds! Having said that, “managing” my pain the last year especially has meant having to get out of my chair and lay down. I absolutely have to get off my backside and stretch out my legs to get any relief. However…that sure stops life!! 

I have struggled not being discouraged and just concentrating on one day at a time dealing with all of this. I try to do what I can and when my body says no, I just have to stop. I try to stay busy to keep my mind on other things, and the days out of my chair, I try to do computer work. But…the thought of many more years of this is very daunting at times.

But, may I share a HUGE revelation to us that just happened last week?

I have been paralyzed almost 9 years. I was in horrible pain, went to sleep, woke up 24 hours later and was paralyzed. Diagnosis? Idiopathic Transverse Myelitis. My spinal cord was damaged by swelling at the C5-C7 level. I saw about 4 different neurologists in Cincinnati, OH. I went to Cleveland Clinic for a week. I saw a neuro-immunologist at Ohio State University who specialized in TM as my follow up care until we moved away from Ohio. I have seen several physical therapists and since moving to South Carolina, I have had 3 different seating evaluations. In ALL of this time, I have never had muscle testing of my upper body. I had sensation testing (pin prick for pain perception, cotton swab for light touch, hot and cold, deep pressure and vibration) on my upper body and we always knew there were sensation deficits, but no one had ever done isolated muscle testing on all my upper body muscles to see what was firing or not.

Until last week…

I have been trying to get a new wheelchair for the last 3 years since living here in SC, but have had fits with my insurance and finding a wheelchair vendor who would accept my insurance. I managed to change insurance, and found a national vendor that would accept it. Then, I had to make an appointment to a seating clinic in Charleston that has a seating specialist and a large supply of cushions and back rests that you can actually try! It took me 6 months to get into this clinic. I went on December 6, and had a seating evaluation with the physical therapist who specializes in spinal cord injuries and does the seating evaluations.

As we sat talking and her asking me questions for about the first 20 minutes, she said, “I can already tell that you have quite a deficit in your upper body muscles and know that your chair is absolutely wrong for you.” Mind you, this is my first custom chair that I have used for 8 years now! I said, “What?!” She said, “As we have been talking, I have been watching you and you are struggling just to keep your balance sitting.” I said, “Oh I know. I always have.” She was horrified and said that we were going to do upper body muscle testing.

As she kept isolating different muscles in my upper body, my mouth just kept hanging open. She would tell me to move this, push against this, pull this way and that, don’t let her pull or push…and on and on! I was shocked at what I could NOT do. I kept telling her to do it again and to let me try again! I just kept looking at my husband in shock.

She explained that there are lots of muscles in the arms and hands and upper body that all fire and work together in “normal working” people. The muscles are rated on a scale of 0-5. 0 is NO muscle movement at all and 5 is what normal working muscles would be rated. None of my muscles were 5 and only one set of some hand muscles were 0, but most of mine were from 1-3. She said, “It is a good thing no one told you that you can’t do things because you have learned to overcompensate with the stronger muscles to take over the very weak ones. I don’t know how you are not in horrible pain and exhausted all the time!” I said, “I AM!!! But, I just thought this is what 9 years in a chair must look like.”

She went on to tell me that pain and fatigue will always be a part of having a spinal cord injury but that she felt confident that setting my chair up with the proper support for my body will help eliminate a lot of it. She said that my overcompensation has really done a number on my body and it just cannot do it anymore. I felt like crying for joy! Then I felt angry. Angry that it has been almost 9 years and NO ONE ever muscle tested my upper body to know what deficits I really had. Angry at how easy it is to fall through the cracks and not get proper treatment. Angry that I have been sitting in a chair that has not been the best for my body long term and has caused damage. It has hurt working muscles and made them weaker. It has caused my pelvis to twist. I have slight scoliosis, and it has contributed to chronic pain for the last two years. My sweet hubby sat there watching me try so hard to move things and said he just kept choking back the tears. It was really a very emotional day for us. But, at the end of it all, we were both thankful. Thankful that we finally saw hope for some relief for my pain and fatigue. Thankful that we had found the right people to help me, and thankful for the education that I most certainly want to pass on!

I know that not all chronic pain and fatigue may be caused by a bad fitting wheelchair, but after sharing my story with my other wheelie friends this week, this is a VERY common scenario and one that I hope we can work hard to eliminate. If we can help anyone else not go through what we have, than it will make it worth it.

For those who are wondering, here is what she is putting me in…

• Tilite TRA – titanium and carbon for lightweight pushing weight. We are bringing in the front of the legs of the chair, so that it will help hold my legs in and keep them from splaying out which should help with hip pain.

• Java Forward cushion – that will hold my hips in place and stabilize my pelvis. Since it isn’t an air cushion, it will also keep me from constantly feeling like I am falling to one side or the other and trying to keep my balance.

• Roho Agility back rest – with medium contour that will wrap around me to stabilize my core and abs so that I won’t have to spend so much energy trying to sit up straight. It should also help the scoliosis to not get worse as it will help hold my spine straight.

• RibGrips pushing rims – I tried a couple other kinds of rims which are supposed to help with my carpel tunnel pain, but they were too slick and I just could not grip them tight enough to get a good push. So, we are sticking with my RibGrips which I have absolutely loved as I don’t have to grip them and still get a great push.

• Smart Drive Power Assist – she wants me to consider a power chair as a second option for outdoor and harder pushing, but she is going to see how I do with using a power assist all the time on a manual chair. She is concerned for my shoulders and arms and ruining them if I continue the current overuse and strain, but she is willing to try a power assist on a manual chair and watch me for the next year. I hope it works!

This is what she thinks will help my quality of life, but that doesn’t mean this would work for anyone else. Our injuries are unique, our needs are specific, and our equipment should be just as custom. So, please make sure you are getting exactly what you need!

I would love to hear your story about this, so please comment and share with me if you have one!

I have always been the happy-go-lucky girl. My solution to all problems growing up was to tell a joke or whistle a happy tune. I have never liked drama or emotional outbursts. I loved making people laugh and when I saw people who were sad or struggling, I thought if I could make them laugh it would be such a help! Because of my personality, I have always taken most things in stride. I know that things will be better tomorrow, so let’s just get through today.

Enter trauma. Personal trauma. March 2009.

I went to bed in a tremendous amount of pain, and didn’t wake up for 24 hours. When I awoke, I was completely paralyzed. My arms were heavy and felt disconnected although I had movement. I couldn’t sit up and I could feel or move nothing from my chest down.

I was 5 months pregnant at the time. Although I was pretty freaked out at what was going on with me, I was more terrified for the baby I carried inside of me. All decisions were made based on his health. I couldn’t get an MRI because I would pass out while laying on my back. The general consensus was that hopefully, after the baby was born, all would return to normal. So, for 4 months, we were just getting through the day…counting the days until my baby boy would be born and I could see for myself that whatever had attacked me, had not hurt my baby!!

I went into the hospital to be induced for a normal delivery. Even though I was paralyzed, my team of high risk doctors were convinced all would be fine. It was, until my little guy decided to flip upside down and sit cross-legged, bottom down. That rushed us straight into the delivery room for an emergency c-section. They ended up giving me the LSD equivalent drug to knock me out in surgery as I was having complications with all other anesthesia medicines. That medicine sent me on a HORRIBLE hallucination trip! I thought I was being suffocated by a mattress and I couldn’t breathe, or move my hands. Jimmy said my breathing was fine, and I held his hand, but that I cried out in pain the entire surgery.

After I came to, and was able to eat my first meal, they brought the bedside table up to my bed. The table touched my chest. When that happened, I immediately felt like the mattress was over my face again! I couldn’t breath! I yelled for Jimmy to move the tray and before he could even get up out of his chair, I had pushed the table away from me so hard it crashed into the wall.

That was my first panic attack.

It had come out of nowhere! I had no clue why it happened and I certainly didn’t know what to do with it! The months following were horrible. Because of the way I became paralyzed, whenever I was having an anxiety attack, I was convinced something else horrible was happening to my body. There were so many times I would tell Jimmy that I needed to go to the hospital and he would say, “Okay, just tell me what is wrong,” and I couldn’t name anything. I just knew something was wrong! So, we would never go because I was embarrassed that I wouldn’t be able to tell the doctors what was wrong.

One day, he came to me and said that he had been talking to his mom and she wondered if I was having panic attacks. I told him I had no clue and we googled them. Out of the multiple symptoms, I had most of them!! I was relieved that it wasn’t something that was going to paralyze me more, but I was still plagued by these episodes of terror that would come out of nowhere!

I started researching…which is what I do…on how to end anxiety!! I found a million suggestions from medications to tapping zones on your body. There were books you could buy, DVD’s you could order and prescriptions to purchase. I would try to learn these things, but when an attack hit…it was almost impossible to implement these things.

So, I just tried to simplify. I couldn’t remember the 37 tapping spots, and I didn’t want to try medication. I have worked so hard to stay off of meds with my paralysis, I didn’t want to start something new. I would like to emphasize that this was for me. I am not suggesting this is a solution for anyone else.

Re-program My Brain

For me, I knew when my attacks started. My dad said to me, “Alicia, you have been holding this all together. You were paralyzed out of nowhere, you had a baby you were worrying about, you had an unplanned surgery, crazy meds, lots of complications and your body has had enough.” That rung true with me when he said it. I was emotionally overloaded.

I also talked to the anesthesiologist and he said the particular meds he gave me caused panic attacks – which made sense to me sense my first one was a day after my surgery. So, I knew I was not only emotionally overloaded, I had been medicinally altered.

Those two facts in my head, helped me to know that something knew wasn’t going horribly wrong in my body. My brain was just freaking out over nothing!! It didn’t feel like it was nothing, but it was. So, I decided I needed to retrain my brain to be okay.

Here is what that looked like:

We would be driving in the van as a family. Out of nowhere, with no warning, would come this huge wave of terror. My right arm would feel very weak, my chin and face would get numb, I would feel hot and cold at the same time, and everything in me screamed that something bad was happening in my body again! My mind would start racing with fear as to what was wrong and what was happening!! But then…I would remind myself that my brain was telling me this stuff, but nothing was wrong.

I would literally start saying over and over and over and over, “Alicia, calm down. You are absolutely fine,” “Alicia, calm down. You are absolutely fine,” and keep repeating that one phrase. In the beginning, I didn’t think it would ever work. The attacks were just as intense – even when I was saying that. But…over time, I noticed that they didn’t last as long. I noticed that my brain would calm down as I told it to. From my research, I had learned that you literally have to retrain your brain to shut off the fight and flight button that has malfunctioned and doesn’t work correctly anymore. So, you have to give it therapy and teach it how to turn back on. I found this to be extremely accurate for me. Be patient as this literally took months for me to be able to calm down a panic attack.

Get My Mind On Something Else

The other thing I learned to do, while attacks were very severe would be to get my mind on something else. One thing that helped me and what I feel is even biblical is that a merry heart is a good medicine. When you are panicking, you are NOT feeling merry and I cannot work up humor in that time. So, I let others do it for me. I bought old comedy shows like the Dick Van Dyke show or I Love Lucy – shows that make me really laugh. I would also watch episodes on YouTube of Just For Laughs which are hilarious gags.

I think it is important to get your mind on something happy – not just get your mind busy. It needs to be brain “light” – not heavy. When I was having a hard day, I would watch episodes that would get me laughing, get my mind on something else, and trick my brain into giving me a break!

Give Up Control To God

Now here is where the rubber meets the road. One of the things I realized about anxiety,  is that much of what I can get anxious about is things I absolutely cannot control. I realized that much of what my anxiety comes from, and can raise its ugly head about, is about control…or rather, my lack of it.

• I can’t control my health.
• I can’t control if I will become more disabled as I age.
• I can’t control how people view me and my disability.
• I can’t control my future.
• I can’t control if health care will care about me or not in the future.
• I can’t control politics.
• I can’t control the moral climate of this world and what kind of world my kids will face.
• I can’t control if my kids will serve Jesus or not.
• I can’t control if broken relationships in my extended family will be restored.
• I can’t control if I will live through the night or not.
• And neither can you.

All of these things can give me anxiety if I dwell on them! So, I have had to learn that I just absolutely have to turn these things over to the Lord and leave them there.

My panic attacks, which I have been told by doctors is PTSD from what happened to me, are pretty limited to night time now. I can be going to sleep and just as I enter that dozing-going-into-a-deeper-sleep stage, I wake up gasping for air terrified! I know now what it is and I know it always hits only at night in that stage of sleep. I know that I am fine in my brain, but my emotions are screaming for the right to be heard and to keep me awake worrying all night long. At this point, I have a decision to make. I can dwell on my fears, or I can give up the control to them.

So, I pray and I quote the passage of Scripture in Matthew 6:25-34:

²⁵ Therefore I say unto you, Take no thought for your life, what ye shall eat, or what ye shall drink; nor yet for your body, what ye shall put on. Is not the life more than meat, and the body than raiment?

²⁶ Behold the fowls of the air: for they sow not, neither do they reap, nor gather into barns; yet your heavenly Father feedeth them. Are ye not much better than they?

²⁷ Which of you by taking thought can add one cubit unto his stature?

²⁸ And why take ye thought for raiment? Consider the lilies of the field, how they grow; they toil not, neither do they spin:

²⁹ And yet I say unto you, That even Solomon in all his glory was not arrayed like one of these.

³⁰ Wherefore, if God so clothe the grass of the field, which to day is, and to morrow is cast into the oven, shall he not much more clothe you, O ye of little faith?

³¹ Therefore take no thought, saying, What shall we eat? or, What shall we drink? or, Wherewithal shall we be clothed?

³² (For after all these things do the Gentiles seek:) for your heavenly Father knoweth that ye have need of all these things.

³³ But seek ye first the kingdom of God, and his righteousness; and all these things shall be added unto you.

³⁴ Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof.

Then I pray. I tell Jesus that I am absolutely terrified. I tell him that I am worrying, but I don’t want to. I tell Him that I know He loves me more than I do. I tell Him that I know that He controls my future and I ask Him to help me trust Him. I also ask Him to come lay beside me and comfort me and hold me close.

I kid you not, but most of the time I fall asleep while talking to my precious Jesus. I know that He comes and helps me. And oh how I love Him for helping me!!

To Summarize:

• Know that outside sources can cause our emotions to get out of whack. So don’t over-spiritualize anxiety. Try to identify what is going on. Marriage? Kids? Bad diet? Not enough sleep? New medications? Church drama? Relationship issues? Try to work on these areas to help what you can.
• Try to get your mind refocused on other things. Laughter is a wonderful medicine. Laugh!!
• Leave with the Lord what you cannot change. Some things we can do – like get rest. But other things we can’t – like get rid of this disability. Give up that control. Let it go!
• Memorize passages of Scripture that comfort and follow the prescription of Philippians 4:8:

Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things.

• CLING to Jesus!! Tell Him everything. He is my best friend, totally gets me and loves and cares for me so much. I dwell on that knowing that no matter what, He is with me.

I’m not sure who this may help, but I just felt that sharing my own journey of trauma and pain and anxiety, may encourage someone else. If you need a prayer partner, let me know! I would love to pray for you on your journey!!