The Crash (II)

Desperate for a way out

I was going to fly to the US soon and be all on my own without my family to help me with the condition. So, in the last 1 or 2 months I did a last round of checks with doctors and also did last attempts towards dealing with this problem, because if not I'd fly in a really bad state. Those were very crazy months in which I obsessed with trying techniques, desperately looking for something to work. My first attempts involved mewing and in general variations of tongue positioning. In some tongue positions, leaving it there for some time, I could get some very cool jaw and tongue release effects which felt very fresh and alleviated my TMJ sometimes, but it was temporary. Eventually I couldn’t get those releases anymore and the TMJ persisted just as badly, so I stopped. The next attempts involved the usual PT, as in stretches and soft strengthening with bands, also icing joints and using a tennis ball for massage. I would try to massage and do stretches for as many parts of my body as I could, but none of it worked much except for alleviating my plantar fasciitis with the tennis ball (hard) massages.

The interesting bit comes after this. When I massaged with the tennis ball, I didn't feel like the muscle being pressed was being relaxed. It felt like I was pressing on something hard as a rock, and if I pressed more it'd hurt, not feel "released". I thought maybe the position of the joint was not ideal, and I could find a better one in which I could press and feel an actual release, trying to mentally feel the muscle (in the place I knew it was). For example, in massaging a calf muscle, I would first variate the knee and ankle positioning until I felt a release at the desired calf muscle. This strategy was mostly a failure too, except for a handful of notable cases. The first of these happened when I was trying a calf stretch to fix duck feet. While doing a tennis ball release in a very specific ankle and knee positioning, I felt a good pull at the muscle which flowed into my foot. I suddenly obtained an arch, which was very odd, because I wasn't looking for flat foot fixes. Until then I assumed flat feet were genetic, but this suggested that it was probably something fixable, and a problem tied to all my muscular issues (by the way, I looked on the web and found some physios who also know how to do this temporary flat feet correction as part of their tricks, it's nothing unknown). I could walk a bit with my foot arch, the support was phenomenal compared to what I was used to, but the arch collapsed in less than a minute. I tried to get the arch again but in vain, I didn't know very well what I had done to get it.

Another event occurred when trying to press on my suboccipital region, which felt excruciatingly bad to say the least. In order to feel a suboccipitals release, I tried different head alignments and also different face contractions (which could look weird). Then in one attempt of pressing with the tennis ball, I felt a "pulse" that started at the suboccipitals and flowed all down the spine to the lumbar, releasing the hip too. That pulse event had an enormous effect in diminishing the excruciating brainfog and also the lumbar pain, the clarity and pain relief was like being in heaven. That event revealed that what I was used to live with was much worse than what I thought, it was the first taste of "normality" I had. It was totally unexpected and felt almost superhuman compared to how I felt before. However, the effect lasted less than a minute too, and I got back to the chronic fatigue. From feeling "normal" for some seconds to fatigued again was a soul crushing event which left me in tears. I tried to get it again but in vain.

Those two experiences with the "connective pulses" were so unique, I thought I was going in the right path. There was something right in trying different joints and muscles variations, even if it was extremely hard to find the "correct" alignment that produces a proper release event (and without a seeming logic behind it beyond luck). Following the same logic, when I tried to stretch the serratus and rotator cuffs normally, I would feel nothing but tightness, not the muscle stretching. But if I tried different blade positions, in very few cases I could feel a good stretch at the muscle itself. I thought if the blade could be responsible for my extreme left neck tightness which didn't let me sleep, since it is connected to the neck by the levator scapulae (which in my case was extremely stiff). In one night where I couldn't sleep, I tried the same strategy of variating blade positions until I felt a release at where I knew the levator was. It mostly failed but just at the very end, I felt a pulse going from my blade to my left neck which eliminated the feeling of left neck strain. I was tired from many hours of testing but I could prove my point: the blades are tied to neck strain, and I could sleep well that night.

As a side, I also tried to use this idea of variating joints while strengthening, to feel the muscle contracting and stretching properly (instead of feeling fatigue), but with minor results. I could temporarily, weakly stabilize my left shoulder doing band work like this, which was a success back then, but the effect was so weak it would dislocate again easily if I made a harsh movement, so overall it was pretty useless. I also noted that when I did planks, my pelvis would clench as soon as I wanted to lift myself up from the floor. Also, I didn't feel my abs whatsoever in the planks, only a burn, which I assumed was normal before but now I thought the core wasn't activating properly. I thought the dependence on the pelvis clench prevented the core from activating, so I tried to do planks evading the clench (so the pelvis was relaxed all the way in the movement), but realized I couldn't even lift myself from the floor in this way. This stark difference between the "normal (strained) mechanism" for contracting and the "relaxed (unstrained) mechanism" was interesting but I didn't do much beyond that.

There was another idea somewhat related to the variating joints and muscles one. That the alignment of the body was suspiciously symmetric and static compared to what I'd expect in other "dead" systems (like a pencil). For example, you are sitting right now with an upright back and centered neck and head. Out of all the ways in which your body could be, this is an extremely unique one, like seeing a pencil standing on its head. If you were shot in the head, your torso would drop to one direction and would look twisted. If you were standing, your body would collapse to the floor. I thought the dropped or fallen state was the relaxed state. Underlying the upright, symmetric body appearance, the body must always be wanting to "fall" or move itself to another way which is overwhelmingly likely to look weird. But we apply a constant strain to give an "artificial" smooth outward appearance. Also, the fatigue persists even when sleeping. When sleeping we adopt an upright body posture too, and we have to subconsciously keep our fluids from leaking out, something we are taught when we were babies. Babies know what a relaxed state is, they pee and poop themselves. Corpses also do the same. To be able to keep them even while sleeping is remarkable, but again comes at the cost of applying the constant strain.

I tried to get this effect and indeed, I found such an effect for other parts of my body: when left "free", my neck would first drop to a side (as expected) but curiously, it would start doing rotations around, all on its own. The same thing happened with my arm (it would start doing rotations and lifting itself on its own). The left eyebrow would tend to twitch on its own. For the hip, when "left free" it would start doing wobbles from side to side. I’d try to stay standing up next to a wall with the hip wobbled for as long as I could, which was very hard as it’d tend to shift back to neutral, so it barely did anything. When playing with my hip in that way I had another weird event: a pulse originated at the hip and flowed up the spine until it hit my jaw, releasing it. Like in the other pulse events, this felt amazing as my TMJ vanished, but for less than a minute again. This event gave support that this idea was also going in the right direction. A last thing I tried was trying to find the "relaxed state" for sleeping, which I thought shouldn't look upright (and of course without peeing myself lol). I found a tendency for my body to twist itself while doing a sort of spasmic movements. I would try sleep like that thinking it'd relax the muscles, but the constant movements/spasms didn't allow me to, so eventually I gave it up and just slept normally. That was the main problem with this spasmic and twisted/shifted relaxed state. Even tough it seemed there was something onto it, there was no way to make use of it since it couldn’t be held for long, it was too fragile and broke easily, and it looked really stupid.

 

Hitting Rock Bottom

All this was very interesting but the spasms and all looked really weird and naturally, my mom was scared about my mental health. The constant experiments, the weirdness of it all and the frustration that I couldn't find anything beyond a few seconds of relief in rare occasions (tasting heaven and then going back) in fact really hit my mental health. The debacle started when I collapsed in the bathroom, likely because I got intoxicated with too much anti-inflammatory cream (I thought it was Covid at first). Later on, and I'm not sure why (possibly the stretches I did and compounded by stress), the neurological symptoms became much, much worse and were felt in my entire body. I started experiencing a new kind of symptoms that went much beyond pain, like sharp fluctuations in blood pressure and palpitations, abrupt changes in body temperature (freezing), also a feeling as if my bones were freezing, flares and a constant dizziness which left me feeling like dying all the time. Those were the first symptoms that actually made the condition unbearable, as in just existing, every second of it, was unbearable.

My mom was concerned and brought a massagist to treat my pains, instead of me doing it. The massagist experience had good and bad things. On the good side, she noticed that my spine muscles were extremely tight and formed knots so stiff they felt like bone (I thought they really were bone before). Then, in some pressings at the spinal muscles she did, I'd try to apply the same strategy (of variating the joints until I felt a release at the spine), and I felt very dramatic spasmic breathing expansions in a very few cases. On the negative, she applied an electric current to my neck, meant to relax it, but I felt the shock directly in the nerve, and it made me think and dream weird things and affected me badly the rest of the day. She gave me a set of stretches for the neck, which I didn't want to do since it was so fragile (it may have been paranoid, but at that time I was honestly terrified that I could die if I did something wrong there, given the extreme instability I felt at my neck), but she said it was alright to do (for normal patients of course). I did them and in one of them, I felt like a right neck muscle was harshly pulled, and immediately I got skin tingling in my right ear. That night I progressively lost my sense of equilibrium and dropped a lot of things (that was total crap but also an interesting effect). My aunt was visiting and saw I was obviously not good, and she started crying (and I felt terrible for it). Later in the night, my awareness had degraded more and I got an overwhelming sense of dread, and bone chilling, that made existing total torture. That's by far the worst night of my life and I was scared that I would stay like that forever. I went to emergency at a hospital with my mom, I was checked and they found nothing, said I was anxious and gave me an anxiety pill (right???). It was hard to sleep that night, but to my luck I woke up with diminished symptoms. The right ear tingling took some time to disappear. I had to get appointments with a psychiatrist to recover my mental health, which I could do in some weeks.

That was a rollercoaster of a month, the worst in my life. After it, I could at least solve the feet bleeding and some of the hip pain which allowed to walk better, but I now lived in a constant state of flares, bone freezing, fatigue and fainting which was much worse than the pains. It felt as if I had messed up some wiring of my brain or body which filled me with constant dread and a weird cognition of the world (due to the constant fainting). It was like existing in a different realm, like living in a nightmare, and I was stuck to live like this every day. In this state, which would only get worse, at best stay the same, my life and future were pretty much over. I thought, if hell exists it must be this. What did I do to deserve this daily, never-ending torture? Will I live my life like this until death? I was put on anxiety pills and antidepressants for an indeterminate time, and was suggested as part of the therapy to learn to live with the condition and not fight it.

I got those few interesting pulse effects, which confirmed to me that the different body strains and problems were all explicitly related (TMJ pain with hip pain, occipitals pain with hip pain, neck pain with blade pain), but at a bad cost. By the end of the month, I could get MRIs and brain scans which showed some spine ligament damage and a lumbar protrusion, nothing else aside from this, despite I felt totally crippled (surprisingly, the scans showed nothing at the neck, despite it felt like my worst part). I was told it was anxiety. I stopped trusting or seeking for doctors and their scans. My therapist suggested to not travel, but since I had already lost a semester due to Covid, I didn't want to lose more time or lose my PhD, so I risked it. Overall, my attempts failed badly and I had to leave in an even more crippled state to the US.

Crippled Abroad

The struggle started at the airport itself. I said goodbye to my family and I was on my own from then on. The dizziness and bone chilling were so bad, my only goal was to arrive to the house without collapsing from the fainting. The 10 hours at the plane gave me horrible lumbar pain which didn't let me sleep, so I arrived terribly fatigued. I was now trapped in this foreign country, borderline disabled and without money to get the (usually expensive) care this condition needed. I had agreed with my mom that I would seek medical treatment in the US, but she begged that I don't try crazy experiments again, fearing I'd have another crash, and to trust the doctors which were better in the US. I agreed as I was also very scared of another crash like in December (which could leave me even more crippled), but I knew doctors wouldn't help just like back at home because I had seen American forums with people just as hopeless as me.

I had appointments with doctors and as expected, I got the same treatments as before, mostly PT, yoga, pills and creams (although now it was much more expensive! But at least they diagnosed me with Hypermobility Syndrome). I got further tests which discarded any hormonal or blood issues, vitamin deficiencies or anything else, so I was totally cleared and "healthy". Since everything else was discarded, it seemed it was all "just" crappy muscles and joints and nothing else after all, something completely mechanical that could possibly be tackled. There must be some way around it, it's just some damn tight muscles, it's just that the doctors' treatments suck. How hard can it be? Still, I stuck to the treatments they gave me for a few months for my mom's sake. All those months until May, I was walking in the streets like dead, in a constant state of fainting, nerve chilling and flares, praying I didn't faint on the street. I couldn't even sit for long before feeling grinding hip pain and strain, so I was bedbound most of the time. I would get horrible fatigue just when I bent down to pick up something, and walking the uphill to my house was a torture I avoided at all costs (the pandemic helped with that since classes were online). I felt sick and in chronic pain every day 24/7 and couldn't even sleep well. The way this thing trashes your body and life in every sense, with not even a second of rest, would be comedic if it didn't hurt so badly. I was under medication like pain killers, anti-inflammatories, antidepressants and so on, but nothing really touched the pain, much less the POTS. There was just no way out of this hell.

Midway through the PT which lasted around 2-3 months, the therapy was going nowhere so I had to take a decision: either follow my mom's begging and keep following the therapy as-is, just give up and accept I'd live like this forever (and give up the PhD and my future and return to my country), or start experimenting on my own again and risk another health crash. After all, I had gotten some really interesting effects in December, and got a hint that total relief was possible, even if it lasted a minute. I wondered if there was a way to make those magical events more frequent, that was my only hope. I thought of doing a compromise and not go all the way into frantically experimenting like last time, but instead to add some modifications to whatever the PTs were doing. Most of it was a failure, but I could get a few interesting effects once again. First, whenever they did mobilization for my shoulders and blades, I sometimes felt sparks at the blades which gave temporary relief. I also found a much better core contraction (instead of burning) if I allowed my (right) foot to be "free", sometimes "oscillating freely" from side to side (it had to be slow, because doing it fast could kill the delicate core-feet connection). Of course, that was very odd for my PTs who said the feet don't have anything to do with the abs, but I could feel the effect very strongly. The core contraction in this way was the first thing that had a longer-term strong effect on my body fatigue and joints stability, lasting a 1 or 2 hours now, much more than the few seconds I had gotten in December, even if weakly and rarely.