.......... At one point the guilt and pain and trauma of it all really came crashing down. I was having an out of body experience. My life was too painful and raw to actually live in my body. I looked down at myself collapsed on the floor trying to catch my breath, sobbing and screaming at the top of my lungs that I needed someone to help me.... Knowing full well this certainly isn't the end of the world, but paradoxically, at the very same time feeling like it very well could be. I could feel the presence of the voice in my head telling me to pull myself together but I couldn't actually hear it and certainly couldn’t listen to it at all. Rock bottom just got lower..... And man, I had to find a way out......
I haven't updated in a while because this experience has been pretty painful. I feel like every time I write about it I need to qualify my pain by telling anyone reading that I know I'm not dying I *technically* know it's not the end of the world or my life... and that there's so much to live for.... but it's not hyperbolic to feel like you're slowly dying or your life is in slow decline when you can't live out any of the things you imagined you could or would be able to do and every direction you turn to try and weather the storm has barriers that are too high...
I've been struggling with depression and despite leaving messages and sending emails to a long list of therapists, it's basically just been me trying to figure this out myself and feeling immense guilt anytime I have to lean on anyone else or burden anyone that doesn't do this for work with my seriously not so serious problems.... But it's also the number one thing on my mind at all times. It's a giant ghost in the room that only I can see.... I know a lot of people think "it's just running"... I know that's how this is all perceived... because not being able to run is the indication that I'm not better... and that I've mostly just put the running aspect of this out to the world, but it's so much more than running.... and there.... now that I've got that disclaimer out of the way I can fill in what I've been up to.
I left off less than a week out from my EMG. The EMG was something sort of on a checklist of things to do to just verify there's not any severe nerve damage. The support group had already warned me it's unlikely they find anything because similarly to finding fPAES in the first place, they can't really assess intermittent symptoms. I'd occasionally be getting these shooting pains walking around but at this point I stopped running or doing ANYTHING that had intense plantar flexion. I walked carefully upstairs and downstairs and asked for help or got a chair if anything was out of reach. No standing on toes for this girl! In my head I told myself that if it *was* in fact nerve, there is literally nothing I can do to make it better except wait... ONE MILLIMETER PER DAY I told myself. So I wanted to do everything I could to not make it worse.... but this was hard. This meant no rock climbing which I was really getting into but felt I should put on hold since it did produce mild symptoms. Meanwhile I set up a virtual appointment with McGinley. I completely trust him, but also need some answers on why this isn't working the way it is supposed to.
The lack of exercise and daily hit of dopamine was really getting to me. The days were getting darker. My favorite season was here and my heart felt deep cutting pangs thinking about running in the trails with the falling leaves.... and whenever I thought about any of this I was reminded of what it was like to breathe. I've forgotten how to breathe. There were things I wanted to get done in our house, but we were still trying to climb out of the debt caused by the McGinley treatments that were working on paper but doing nothing to restore my mental state. So much guilt and feelings that I'm bad for my family followed me. Sometimes they even became self fulfilling prophecies because that feeling of guilt made me feel so badly that I reacted irrationally to many things my kids were doing because I just had no patience and no strength to carry any of it... and then those bad reactions snowballed and snowballed and snowballed.... It got ugly... Really ugly... wanting Matt to take the kids away from me so that they could move on and be happy. Again, It sounds hyperbolic, but anyone that's been in the thick of it quite like this knows that rational thinking doesn't always win. Feelings are powerful and valid and can real; they can really take control if you have no other method of handling the situation. I called a crisis hotline at one point because I was struggling so badly. I'm not trying to take my own life or anything but was feeling really unseen and most people in my life perceive me as very strong and because of that they just maybe don't know what the signs of me needing help look like. I've been treading water for years now... but in the last few months I've been drowning, and ya know... drowning is quiet, drowning sometimes looks like swimming or looks like treading... but I just couldn't anymore. I needed someone to carry some weight for a second... but I couldn't unload that on my family or friends because then I'd just pick up some extra guilt along the way and the cycle would continue.
Probably because I was googling crisis hotline phone numbers an app was advertised to me called "I AM SOBER"... and I do not have an addiction problem but the app was advertised for people that are Suicidal... and they were keeping track of how many days since they self harmed. I haven't harmed myself technically, but I decided to write down some tangible things I do that tend to send me in a spiral, I wont define them here for you because it's personal... but my downward spiral is so entangled with guilt so certain things that I know cause me to feel guilty I pledged to not do anymore. Every morning I get a message to take a pledge... and then my reason why pops up. I'm 29 days "sober".... and it has really helped. I also have something to track progress on…. which definitely makes me feel like my whole life isn't getting worse everyday. Finally... some upward momentum.
A little momentum helped me a lot. I managed to get my insurance to reimburse me almost $5,000 which really lifted some of the guilt. I started to think of other things I could do to improve. I looked for convenient ways to workout. Communities to lean on. I signed up for the Crossfit down the street... Part of me afraid of the running community to turn their back on me, or more serious athletes that consider Crossfit to be a joke or dangerous or bad for you, and part of me giving all of that the middle finger because I need running behind me so I can move on. "Yeah, I'm not going to be a runner anymore" I decided, and Crossfit was working for me because I could modify in any way I needed. They know I can't run or can't jump and can't plantar flex in any way, but I didn't get into the reason why, and it's kinda nice to feel no pressure to perform and to just show up and do whatever I can. None of these people know I've been to the National Championships and was training to qualify for the Olympic Trials. I can just be a regular average person trying to improve their health. The change in my mood was so obvious. Staying "sober" was easier, I barely remember to pledge each day because I'm starting to live my life again.... but then comes the news that by 9 days, my qualifying time from 2019 will still count for the Boston Marathon. Because of COVID my time is still eligible. How is this happening? I'm allowed to sign up on Monday November 8. My appointment with McGinley was scheduled for November 11 and the universe seems to keep putting McGinley in my path every single time I have to make a decision about the Boston Marathon.
Monday November 8: 2 miles I had just watched a million posts and VIdeos about Tommy Rivs walking the NYC marathon after nearly dying from cancer. He was a 2:19 marathoner and it took him over 9 hours to complete it. I left my clothes for crossfit at home by accident.... Must have been the time change... I drove home to get them and decided... "ya know what, I have that appointment with McGinley coming up, I should skip crossfit and check if there's been any improvement running" I doubted it because my legs were feeling weird in crossfit, but also I've never done crossfit before. I thought "maybe that weird feeling is a sign things are better"... so I ran... and I made it 2 miles. I haven't done that or even close to that since before the pandemic. Last I tried to run without the alter G I couldn't even make it 2 consecutive minutes. I sobbed. WHAT KIND OF SICK JOKE IS THIS?!?? Just when I was ready to put it all behind me.... it's at my feet again.... I signed up for Boston.
Tuesday OFF- I felt normal my legs felt good all day.
Wednesday: 2 miles- Well I had a whole list of questions to ask McGinley on why this wasn't working and now I feel dumb... Is it working? I'm in disbelief so I was still going to ask my questions: I'm so scared to have hope again it's not a good feeling but also the best feeling....
Thursday: Meeting with McGinley. He says I'm out of the woods. He's not even sure I'll need to come back (I feel I will pretty soon) I asked all my questions, but none of them matter yet. I'm sure it's working now even though for months I was in the dark mad about the whole thing... wishing I got a pool instead. I'm still not sure if I can run the way I want to. It's completely bizzare feeling to run partially paralyzed, I can barely move... but I can breathe! Man, I didn't realize how much I relied on running in order to catch my breath. Weird, right?
Friday 2.5 miles: This is very weird, I'm scared. Two of my neighbors saw me. One knows the whole ordeal and cheered me on at my 11 minute mile pace. Tears welled. Another noticed my stride had changed quite a bit... I gave him the cliff notes version. Damn, I've been through a lot.... I can't even imagine life on the end of this and I'm trying not to.
Sunday 2.5 miles: I had some symptoms but so mild that I have to believe they are on their way out instead of on their way back... This felt better in many ways though. And wow... never thought I'd be so psyched to run tiny loops in a parkinglot... but here we are...
I don't know what the future holds, I certainly don't know if I'll run the Boston Marathon... but this is the first time I've been able to run when I signed up... so that's new. And I know I got pretty heavy with the mental health stuff in this one, but I'm doing okay-ish now. Those moments you're in it are long and dark but when you look back they were much shorter than they seemed.
I'm truly in new territory now... we'll see how this goes from here....... We are still paying off our credit cards so if you'd like to help us out and help me get to my next treatment (ideally february) check out the gofundme linked on the homepage.
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.