20 Things I Monitor Daily To Cope
I need at least 8-9 hours of actual sleep per night for my best chance at a decent day. Generally I spend at least 10-12 hours daily in the bed asleep or awake. Often the only comfortable position is laying on my side. I wear a Fitbit Blaze to keep track of my sleeping patterns.
Periodically this must be adjusted by a professional. I daily look for signs of necessary adjustment. Nausea, racing heart beat and feeling strong unbearable vibes throughout my body can be over stimulation. Not having my stimulator on high enough leads to increase pains and honestly life is not bearable.
Every week I put together my medicine box. I have alarms set for three times a day. I take a few prescriptions, several supplements, and make sure I have emergency medications always on standby. I just carry a backpack with me everywhere I go so everything is with me.
Not supposed to sit longer than 30 minutes straight.
Nor supposed to stand longer than 30 minutes straight.
Any driving can put me in a fix very quickly. With heat steady on my back I’m good at best for a 30 minute consecutive drive. My wife always drives me whenever possible because it’s always such a risk.
Walking is critical to keep any movement in my lower back. If I can’t walk I seek to get to the pool. Either of these things are best to be kept to no more than 30 minutes to an hour. But, exercise must be planned and timed to keep me in balanced and going.
Before I walk out the door I have to do certain stretches due to my extreme stiffness. This is something I try to do a few times throughout the day anywhere.
HEAT & ICE
There has not been a day in a very long time that I’ve not used a heating pad or ice pack. I have every version available. Those for home and away. Heat is my best friend everyday. In general the temperature around me and on me always matters. Cold weather can wreck my entire nervous system.
I spent 90 percent of a 3 year period in the bath or bed. I’ve spent 7-8 hours straight in the tub many times. I spend on average 3-4 hours daily in the tub as the combo of the heat and positioning are my biggest bailout for relief.
WHAT I EAT
I try to eat any foods I can that are supposed to reduce inflammation. I’ve got to consistently stay away from foods that easily flair up nerves. Extra sugar or caffeine intake is a big issue. One poor decision can lead to an absolute day of torment. I’m just at the start of my learning in this area.
WHAT I DRINK
I’m now back to drinking only water daily. I drink at least half my body weight in ounces per day. It is critical I stay hydrated with all my skin and nerve issues.
My diagnosed dermatitis and dermographism are skin conditions related to my nerve damage. You can’t allow your skin to get very dry. Symptoms are flared up by too much water, stress, or high level nerve pain. I keep deep healing lotions near me at all times. Plus take morning and night prescription meds to contain it.
My chronic neurological condition forces me to proactively monitor stress. I only make so many intense appointments per day or week. I can’t spend long around toxic people. I just can’t deny that too high of stress levels makes everything go haywire.
LENGTH OF DAY
Typically I make sure that anything I’m doing is scheduled between 11am and 5pm. Any exceptions call for making other adjustments and literally getting in the bath between major appointments. Really anything more than 4-5 hours straight can cost me for days in extra pain.
LETTING GOD USE IT
For me sharing and writing are healthy. It’s then I know I’m being honest and giving God full use of it to be healthy. There’s never a time I pocket my pain because it never stops. Instead, I’ve embraced that God wants to use my pain to comfort others through their pain.
LEARNING & PRAYING
You can accept things for where they are while still believing God to take things further. I know I have permanent nerve damage throughout my body. So, I keep learning daily from research and others how to best deal with it. I also keep praying for God’s healing in God’s timing. I never give up on God because I know He will never give up on me.
I have to take things daily for energy and focus. Whether it be Mixed Greens Energy by GNC. Or I take something called GFuel. Both you just add to water and both work well. They are way healthier than any market energy drink.
Being positive is a mindset you must adopt. Sometimes it comes easy and other times it’s simply a discipline. No matter what I feel or face I purposely strive to find the good and God Stuff.
Daily I have to get over my pride. After all, who does like to sound like the wimpiest kid on the block. I strive to remain totally real with those inside and outside my home. It frees me to not feel I have to mask my pain or commit to things I know I’m not healthy enough to do.
Well, that’s just getting started on some of the physical and mental things I have to monitor due to my condition. No, you can’t change all your circumstances or condition. But, you can determine to do all that you can while trusting God for all you can’t.