The kids had yet another snow day on Friday which meant little rest for me. The weekend was crazy as Saturday it started to snow heavily. Thankfully we were ready for it and had no plans to venture out. It helped that Josh and I were working an Ingress Global Anamoly in Austin remotely with Josh as head operator and myself as one of the cluster operators. It was fun but also meant constant adjustment on my part so my joints didn't lock during the nearly five hour event. What was cool about it that our team won by quite a bit which made some of my discomfort worth it.
Sunday we woke up to Joseph throwing up due to eating a bad Clementine we think the night before. This meant no church for us which wasn't a good thing but I used the time to get some much needed rest before heading to 3 hours of soccer training. Monday the kids made it back to school, thankfully, which allowed me to go to my hour long Actemira infusion without any tag-a-longs. Afterwards I had no choice but to crash since we were headed to a STEM (science, technology, engineering, & math) seminar at a local roller skating rink put on for the cubscouts. It was great fun watching the kids learn some new things while getting to skate for an hour while having the rink with maybe 25 other people at most. The kids were thrilled I put on some rollerblades as well to join them since it was so deserted. We figured less people meant less chance of someone running into me and since I rollerbladed all the time in college, I am fairly stable on my blades. It was really great to see the kids reactions to having them watch me skate around the rink fairly well. Yes, I can skate and do some active things instead of always having to be on the sidelines.
Unfortunately the skating is what brings me to my topic of "What you see and don't see". What my kids saw was mommy joining in on the family fun and skating around the rink for 45 minutes or so instead of sitting on the sidelines. What they didn't see was the severe pain I was in last night due to my body not liking on the activity. I knew I wouldn't hurt myself rollerblading but also knew I would pay for it later. It is the constant give and take that shapes my decisions. In this case, seeing the kids smiles and being able to show my kids a glimpse of how active I used to be made the pain later worth it. Others might think this was a stupid move and that I should have stayed just watching. They may be right but I wanted to feel normal for just a little while and having low turn out at the scout event allowed me to feel normal.
Late last week, we had to do a typical grocery run to Giant Eagle. We parked using my blue handicap placard and I walked seemingly normal into the store. People around the truck at the time probably thought "why is she using a handicap space, she looks fine." What they didn't see was about half way around the store my knee decided to give out making walking very painful. Fatigue also started to hit around this time so I started using the cart as a walker in order to finish what we needed to do, Josh knew I was hurting so we slowed down. By the time we checked out I could barely walk so that handicap spot proved essential to me when it was time to leave the store.
When I drop my kids off at Calumet Christian each morning, I often times stay with them in the lobby so they don't have to stand outside in the cold. On Thurday mornings, I help in the first grade classroom as well for an hour. What people see is me with a smile on my face, walking without much of a limp and appearing totally healthy. What they don't see is how long it took me to get myself out of bed that morning and how hard it was to take those first steps due to severe stiffness or how hard it was to open a simple bottle do to weakness in my hands. After I get home from drop off or home from working the classroom, what they don't see is me crashing on the couch for the remainder of the morning because I just spent what little energy I had at the school. On good days, I come home and get a few chores done around the house but inevitably my body gives out on me and forces me to stop what I am doing and take a nap. Yet, despite all the challenges, I enjoy being involved in the kids school and helping out in the classroom.
What people see is myself being a driver for a field trip or my family going for a short hike in the woods. What they don't see is how much planning is involved to allow me to participate in those activities. How I have to plan ahead how much I need to rest up so I can participate with minimal negative impact to my body. Sometimes despite all my planning, I still end up struggling to participate but sometimes it works out and God gives me the strength I need to finish out the activity with a smile on my face.
Reading this blog people may think that all I am doing is whining about how hard my illness is and complaining about the constant pain and adjustments constantly needed. What people don't know is that I thank God every day for the things I can get accomplished that day. Sure I get frustrated and there are lots of times I don't want to have to think about living with several chronic illnesses. I vent to God and vent to my husband but ultimately come to the same conclusion each time. I don't know why God allowed me to have all these health issues but he must have some reason. I have to trust his plan for my life and just try to live each day the best I can . It is not all bad. These past 10 years I have learned how to adapt, be flexible and have more empathy for others. Still working on how to ask for help when I need it but I am trying. More importantly my illnesses have allowed me to be more understanding to my youngest's joint issues.
Until tomorrow....
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