Disclaimer #1: Just because you know someone in a certain situation, it is never a good idea to use that to comfort someone who you deem to be in a similar situation.
Disclaimer #2: This is about as honest as I can be…it still does not mean you understand what it is like to experience it. THIS IS NOT MEANT TO MAKE ME OUT TO BE A SUPERHERO BECAUSE I GO THROUGH THIS EVERYDAY. It is meant to help others who may go through similar things so that they know there are other people fighting their own battles. Quitting is not an option, and you can actually find joy in life (not just making it through). I have a few friends who gave me insight into some things they deal with on an everyday basis, and it has been life changing in terms of my perspective.
A “normal” weekday for me:
5:00-6:00 am- WAKE UP and get moving to stretch out my stiff muscles.
6:00am- Breakfast (so that I can take the laundry list of medications to which I am fortunate enough to have access. I don’t want to hear about someone with MS that you know that cured MS naturally. It has never been cured.) The medications have to be taken with food because they cause major stomach distress (even with food, just slightly severe).
6:15am- Turn on podcast of the day (usually Ravi Zacharias) while the muscle relaxers start to work and continue to stretch my stiff muscles. Prayer has become something I have come to cherish during this time, as it helps to focus my day. COFFEE
7:00am- Get dressed for work. Putting socks and shoes on is the hardest part because my right leg and torso want to straighten out (Morning is the worst part of the day for this). COFFEE
7:45am- Start phone calls for the day. This is a great time for me to catch many of the people.
8:00-9:00am-Depending on the day, leave the house at a time usually between 8 and 9 depending on what is happening and where I am going. Depending on the way medication has impacted me that day, I may have to make a pit stop on the 6 mile trip to work. I also don’t move quickly, so if it is bad enough I may need to head back to the house. (This is not meant to be a TMI, but I have learned way too many times that people are dealing and suffering in silence with this. They will not utter a word of this to anyone. Hearing that they are not alone can mean the world. Thanks Millsy, you changed my perspective). I learned that the combination of my medication, and in essence having a Spinal Cord Injury/Neuro Issue (which can cause muscles and systems to fire without reason) is a deadly combination. If this fact helps one person reading this, you aren’t the only one. I have said that I vividly recall the time when God told me he will make me the most confident person in the room (through His strength). I have no problem sharing this to help others. I love you all…COFFEE
9:00am- Get chair out of the truck. Office work, phone calls, etc.
11:30am- Leave to meet a donor, alumnus, etc for lunch. I leave early so that I can navigate the terrain to get my wheelchair where I need to be. The Americans With Disabilities Act was great, but evidently most places didn’t get the memo. I also don’t want smaller, local places to go out of business being over regulated. I will figure it out.
12:00pm- Fellowship, business, networking, etc over lunch. COFFEE
2:00pm- Back to the office to put things in a good place for the next day. COFFEE
4:45pm- head home (while making phone calls to people I need to touch base with for work) to change and trade out my everyday chair for my Crossfit chair.
5:20pm- hit the Crossfit Box (CFEC) so that I can set up my stuff for the workout.
6:45pm- head home for dinner, family time, and 1st grade homework.
8:00pm- bed time for the kiddo
8:15pm- medicine for the daddio
8:30pm- actual writing (with a pen) for Warrior613 for the next few months.
9:30pm- usually Bible study and prayer.
10:15pm- writing or video for the website
11:15pm- wind it down (MS is supposed to cause fatigue, but I guess that isn’t God’s Plan for me at this time). Also, the amount of COFFEE helps as well. It doesn’t help the fact that MS does hinder you from emptying your bladder fully, so I have a map of every bathroom in the country tucked away in my brain so that I can find one every hour.
This is a far cry from my former “throw on clothes and go” that used to take 15 minutes. It has changed, and brings about challenges for activities that I took for granted. I love the life that God has blessed me with, and the task that I feel he has given me. I wouldn’t trade it, although I am frustrated at times. Keep in mind when you see someone, you don’t get to see everything that they deal with. This could be much longer, and everyday is unique. What I want you to leave here with is the fact that what you see as an issue with my walking is much more than it seems on the surface. Keep in mind that the person who looks like they don’t have a care in the world in fact may be dealing with something that you could never imagine.
I love you all!