Another week of wobbling my way through work and questioning all my life decisions. Not much to report but here we go:
Sunday May 9, 2021
Sunday was Mother’s Day, and I originally planned to have my husband take the kids away so I could just rest my legs after my first run... but I didn’t feel terrible, and knew he’d take them somewhere nice and I’d get jealous... so we just all went together. Mother’s Day was a disaster. Kids were terrible in the car, Maebel fell while we walked up hill and cried about the tiniest speck of blood on her thumb, and Raea complained all day that there was no such thing as “Kids Day” ... but generally when we take them outside things improve. In this case Maebel peed her pants, so that was fun.... and then we got ice cream for the way home and accidentally bought a pint with almond milk-which I’m allergic to, and Raea was mad that I took the other ice cream. She didn’t want to share-wanted the whole thing, and kept saying I should eat the one I’m allergic to. Nice. Then when I told her the day wasn’t about her she lost her first tooth to prove that, in fact, it was. #momlife #biggirl
The walk in the woods seemed like a good idea. During my Saturday run, it became very clear that the big issue moving forward was going to be a lot of stability. I can tell that there’s a delay with my brain. It’s like it sends a message for muscles to move, then the message kicks back when it doesn’t work and then it sends another one until it works and then when my foot hits the ground that process repeats. Over and over again my brain sends a message that gets kicked back and then sends another. Everything is slow and delayed and frustrating... and risk of other injury is high... it’s not just impacting my calves, because my quads and core are going to be bearing extra load too, plus I gained a significant amount of weight so... it’s a lot. To improve these “messages” I need to be moving. Walking on trails is perfect because it’s a bit harder than regular walking which was going fine, but low impact and low risk. It is probabky for the best that we had to turn back early, though.
Monday May 10, 2021
Monday is Matts day off from running. It was a nice day and I decided I’d try a return to run program. Now that I had the 15 minute run I knew the treatment was working, I had a good sense of what my weaknesses were going to be, and could proceed without doubt in my head about if it’s “working”.... but I knew I wasn’t ready for continuous running. The return to run program I follow and use with my athletes starts with a walking warm up, then 3 minutes of walking and 1 minute of running. That all went fine. I committed to going very slow and trying to move very consciously. It required such intense focus. Usually you can zone out a bit when running but that was not the case! Unfortunately in the walking cool down I had to walk up a big hill and it just was too much. My right calf got more cranky than normal fatigue. I’m not 100% sure if it’s fPAES related or if it’s just too much too soon... but typically my left leg is the problematic one so that makes me feel good... ??.... but definitely a set back I’m not thrilled about that impacted the week moving forward.
Tuesday May 11, 2021
I basically only rested today. I had to go to work though so rest is relative and it was crazy. I had to take several kids to the nurse and not a single one required a Covid test even though we know that kids are more likely to be asymptotic cases... or have mild symptoms. Symptoms are all over the map, headaches, stomach aches, coughing, etc... my frustration for this school year is at an all time high. There’s no real way to social distance with the special needs in my class for one, so I feel this immense pressure to keep everyone safe even though I can’t teach and abide by CDC guidelines, and my feelings on testing are better safe than sorry... but that’s not the requirement. Secondly, I probably should have taken time off for my legs, but it feels like it’s too late for that even though I think it’s the right thing for my legs... I just didn’t want to do that when some of my students I hadn’t met in person yet and they just started on May 3rd. Just some days the sacrifices feel too large. I really think work is setting back my recovery... yes I’m supposed to be moving, but I should get to dictate the movements a little better. I spoke with my staff and for the time being I’m likely to take every Wednesday off because I can do 2 days on one day off. They see how much I struggle by the end of the day and it’s really really hard. The whole Covid thing is just icing on the cake. Less that 25 days 😩. So needless to say, I took Wednesday off.
Wednesday May 12, 2021
I rested today, but also spent the day catching up on a lot. Lots of cleaning! Matts friend we visited in Colorado is coming to Massachusetts for work so we’ll get to see him twice in 30 days. He hasn’t seen our new house yet so I want to keep it clean! Challenging feat when walking normally is a struggle and.... kids.... Raea went to school, but Maebel was home. I FaceTimed my sister who lives 2 hours away so Maebel could have a virtual play date with her cousin, and I was able to get a lot of cleaning done while sitting.
Thursday May 13, 2021
Back to work. Another day of trying to survive teaching remote and in person kids simultaneously without feeling like an epic failure. Make this year end! Anyway... At night I stretched and did a bit of stability. I got some well intentioned feedback on Instagram for using a disc before building up to it in the typical post-injury way. Let me say this: the only expert here is me and this is not typical. It’s my body, I have been begging for this diagnosis for years because a CTA couldn’t pick up what I knew... and some of the greatest minds in the field also couldn’t figure it out... so I trust my judgement..... and yeah, I’m going to make mistakes (already have) that maybe could be prevented if I followed a more gradual protocol... but I learn through movement... and I also learn through mistakes... and that’s largely his I was able to make the assessments that got me to Wyoming. I’m going to learn from all of the way I need to... I was told I need to push myself, and so I will... and *I* will determine when I’ve pushed too hard with the team *I* assemble for myself. This is procedure that only 1000ish people have ever had done and only one person in the world is doing it. No two people are the same... so while I generally enjoy and am not sensitive to feedback, I don’t need anything in my life making me feel like I’m at fault for my own pain. I’ve carried that burden long enough and I won’t do it anymore. I’ve been particularly emotional unwrapping all of my personal history impacted by this condition I lived with for so long and didn’t know I had... I’m a tough person in general, but I’m a bit softened right now, and don’t need a single thing added to the weight I didn’t know I’m carrying that I’m finally trying to set down. ✌🏻
Friday May 14, 2021
TGIF!!! Other than the fact that people in the country are hoarding gas and my tank is literally on zero... pretty standard day. Legs not too bad, but not too good. Right leg more sore than left still. Occasionally things feel fine... then I think I walk funny and irritate some of the compensating muscles probably still healing from the walk/run. Not entirely sure. I got a call from the Nurse Jen at the McGinley clinic yesterday. I somehow missed the call, But called her back today. I mostly just filled her in on everything I’ve just included here. She helped me sort through which things to push through and which to not push through. Some of it is a bit counterintuitive when compared to other returns to sport-so my intuition about the stability is correct... but I think the original 15 minute run was probably just too much and then the cumulative walk/run after... I’m glad I did it though because it felt good to have a concrete measurement. I could tell her a bit more confidently that I feel it’s working since 15 minutes was impossible prior to the Botox... just need to make some adjustments to how I approach it from here now that my head is mostly on board. I did voice a concern I do have- I knew I had issues with my right leg too, but generally didn’t see this as a bilateral problem. I have this weird fear that I was thinking and sending so much energy to my left leg in the scan to MAKE SURE something showed up, that I unconsciously pushed harder with my left than my right and the scan wasn’t as clear for the right? I know the right didn’t get as much Botox, but what if I pushed uneven and it needs more than the scan indicated? Pretty sure I’m over thinking as my shins still feel good, but she sort of just reassured me that it’s way too soon and common to have soreness from using muscles differently. We touch base again week 6. Time will tell. Like I’ve said- I’m confident this is my solution, but not 100% sure this first round will be enough to get me running anywhere near the level I used to. I’m okay with that, I just want to be able to run enough that I can eat cupcakes and not gain 10lbs again. I never had to think about my weight until this got so bad I couldn’t really exercise at all... and I never want to think about my weight ever again.
Saturday May 15, 2021
I really held myself back from doing anything today. I basically just stretched and rolled and tried to keep the house clean. I really want to take more days off straight... 😩 because I think these full days off really help... but Monday is the standardized testing day... so ugh. As much as I wanted to get outside and go for a walk I know I’ll have no opportunity to recover before going back to work. I’m a Broken record here.... but is it summer yet?
Sunday May 16, 2021
Well, my husband’s been gone all day to go run, work, and pick up his friend Jack. I cleaned the house (this weeks theme) and went grocery shopping, and cleaned the house, and cleaned the house and cleaned the house. Just rested my legs as much as possible after that so hopefully next week is a better week.
Good thing I cleaned, right?
Summery: (not editing that spelling error-it’s just a perfect indicator of where my brain is) This is harder than I expected. I still have a long way to go... but I think things will really start improving as school comes to an end. I’m really tuning in to the details of what my body is telling me now that I have some initial success and trust in the treatment. One day at a time.
Welcome to my blog! I've been blogging for a long time on various platforms. My intention has never been to reach the masses, but rather to give myself a chance to reflect and journal. I feel it at least challenges me to be somewhat coherent, however you can expect ramblings and grammatical incorrectness here!
I've recently been diagnosed with CECS and fPAES and had it treated with BOTOX of all things... So I suspect to see more and more people looking for answers with that in the future and hope to continue blogging so there will be easy to access follow-ups as that was helpful for me.
NOTE: Apologies that some of the pictures incorrectly load sometimes. I try to keep up with the glitches, but can't always! Hope it doesn't impact the blog experience for all the PAES visitors.