I took these pictures of the Hawks yesterday afternoon. Not easy when you are having to balance, not look at your feet, have to stay steady and take the picture. It has taken me almost three years to be able to get enough balance and proprioception to stand and take a picture or two. I still lose my balance, but with my LifeGlider it takes the worry out of falling. Most importantly, I also asked God to give me the ability to take the pictures just before I took these. Isn’t He amazing?
These were taken from my back yard. We get a variety of wild life in our area. This time of year brings lots of new life and blooms.
Living with chronic illness often means learning to navigate the daily pain and stiffness changes that can be exacerbated by fluctuation in temperature and sometimes food. It means being aware of what your body is always telling you and doing something about it before it is too late. For example, when temperatures rise into the upper 80’s and above, I must be extra diligent with drinking water to stay hydrated, doing my best to stay in cool shaded or air condition places, and watching for signs my body is may be becoming over-heated. Because of my SCI and Chiari Malformation my body does not sweat normally, I only sweat shoulders up, which means my body cannot cool itself off properly. So, whether I am relaxing in a pool or indoors I must make sure that I do not over-exert and get overheated. In cold weather I must bundle up but make sure I do not become too warm. .Becoming overheated or getting too cold can mean increased headaches, more allodynia which in turns triggers spasms in my back, across my tummy, and down my legs. This usually means having to lay around for the next day or two and/or sometimes longer. So, on high pain days what can you do?
Give yourself permission to recover and accept help
It is not always easy to have to admit that your body is rebelling and that the only thing you can do is find a somewhat comfortable position, take your medication, and just rest. I know for me this is difficult. As a wife, mother, and grandmother I am supposed to be the one that takes care of everyone else not the other way around. Not being able to get up and take care of my family makes me feel down. I hate feeling like I am letting those around me down. But the reality is that our family and friends understand. They only want you to get better. It is perfectly okay to ask for and accept help. Our bodies are telling us Stop! It is time to rest and recover.
Distract yourself from the pain
We are all different and like different things so finds what works best. For me sometimes it is putting on my VR helmet and immersing myself in a game, go swimming with the dolphins in Ocean Rift or use the meditation application. I have used this method on many occasions and find that my pain will drop from an 8+ to 5 in about 15 minutes. After about 45 mins. I can remove the mask and relax some.
Another way to distract myself is find a sitcom or movie to watch. With all the different services out there like Netflix, Hulu, and Fire Tv it is impossible not to find something to watch. I often find comedies, old reruns of I Love Lucy, or a great movie on the hallmark channel often help distract my mind from focusing on the pain as much. Look, when your body revolts find ways to make the best of it. Whether you are engrossed in a game or coloring do what helps you distract yourself from the pain.
Remember this is temporary
When our bodies misbehave it is easy to fall in the trap of beating ourselves up. It is extremely easy to lose sight of the fact this is only a temporary setback. Often, especially when things seem to be progressing, a minor setback like this seems much more than it really is. It can feel like this is going to last forever and then we start playing the “What if game.” What if I do not improve? What if this means I must start increasing my medications? What if the medications start making more lethargic? And, so on and so on. Our minds are powerful and if we allow the negative thoughts in, we risk increasing our pain and discomfort. This usually leads to longer recovery times. It would benefit us to remember this is only a hiccup on journey.
Our bodies are complex and sometimes temperamental. Living with high levels of pain is difficult and can drain our ability to cope and cause us to lose hope. It is important to remember that these setbacks are just temporary, and our journey will resume shortly. It is okay to take the time to recover and accept help. This does not mean that this is going to be how things are from here on out. Let us do our best to allow ourselves time reset and recover.
Dear Lord, thank you for being the light that guides me through the storms. You renew my faith, hope, and my spirit. Help me to always find You even the most difficult of storms and give you praise through it all.
As I awake each morning my body reminds me of how damaged it is because the pain never seems to go away. But the question I continue to ask myself is, Is my pain real or just in my head? I ask myself this because I have been told repeatedly that, your brain controls everything and you have the ability to control your brain. Well, when you have a physical condition that creates pain, how does that constitute that your pain is all in your head?
Over the past few years, I have been to many doctors which deal with my physical conditions of incomplete spinal cord injury, arachnoid cysts in my thoracic spine, Chiari malformation and nerve damage related to the 8 surgeries to decompress my spinal cord. Some of my doctors recognize that my pain is real, and others like to pretend that my pain is all in my head and is going to go away. Regardless I am still left with the “real” limitations that my pain creates.
Some days I can move around with less pain than others. Often, I get asked questions like, why is your pain better? Why aren’t you hurting as bad? Why are you moving better? The response of ” I don’t know” never seems acceptable. Instead I often hear comments like- Well, you’re the only one that tell us why? Or What did you do different? When I explain that I have done nothing different, that I have taken all the same medications in the same order as I do every day it is still not acceptable. The frustration is beyond what one person should have to deal with. Why don’t others get that if I could figure it out, I would duplicate it so that every day would be better?
For now, all I can do is keep moving forward by continuing to deal with my pain by taking my prescribed medications at the same time daily, stretching and doing balance exercises to help strengthen my brain’ s communication with my legs and back. Right now, my brain still doesn’t fully realize I even have legs. For example, if I stand at the kitchen counter without looking down at my feet periodically my brain sometimes forgets I am standing, which causes me to fall. This is caused by the loss of proprioception in both legs.
The communication from my brain to my nerves is also on overdrive causing my nerves to overact. This causes the skin on my back, stomach and upper legs to feel like it is being stretched, sliced and is on fire. Even the slightest touch feels intense and painful. Putting on clothing hurts to the point of giving me the chills at times. It also causes my right leg which normally has very little feeling to feel like there are a million spiders with sharp needles on theirs legs are poking me repeatedly. I am prescribed Gabapentin 700 mg three times a day for my neuropathic pain in conjunction with other pain medications which I take every 4 hours to “help” control the pain. None of this works well. I find that the pain medication takes about an hour to start working then only work at its full capacity for about two hours then decreases quickly. This leaves me in pain most of the day. It is often hard to get motivated to do much or to really want to be around people.
So, is my pain real or in my head? I say both. The pain is real, but it can be exacerbated by my brain response to stressful situations and by physical changes. For example, if my body is fighting a cold my pain often increases until the illness runs its course. Stressful situations often lead to more pain. It is easy for me to start doubting myself and lose my perspective therefore, creating stress and more pain. But because I have hope that I will get better, whether it is via a new medication and/or treatment or answered prayer I will keep me moving forward. God has promised that if we have faith and ask Him to heal us that it will be done. ” And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven” James 5:15. Having hope is what helps me continue each day even though I know I will wake up in pain and end my day in pain. My prayers continue to be answered as each day I improve even if it is only a small bit. I went from being mostly in a wheelchair to walking with a walker in just a few short months after my 8th surgery. Currently, I still walk with a walker, but I can walk some without any assistive devices. I refuse to give up as I know God will keep His promise and we all have a better story we can tell.