I have no wit, no words, no tears;
My heart within me like a stone
Is numb’d too much for hopes or fears;
Look right, look left, I dwell alone
~ Christina Rossetti
My last health update at the end of my ‘Best and Worst of 2018’ blog post was over nine months ago. It’s been so long because I’ve been too ill but also partly because I haven’t had time* (*I’ll explain why in this blog post) and I’ve been struggling to find words to describe what’s been happening to me. I still don’t have the words; what I’m experiencing is rare and there isn’t a vocabulary for it. I’ll do my best but unless you’re experiencing it yourself, I’m guessing it’s going to be a bit incomprehensible.
Since the beginning of January, on top of the involuntary head movement (where my head was repetitively moving from side to side by itself and being pulled in other directions too), I started experiencing the same sort of involuntary movement throughout my whole body, being pulled in different directions. I was able to stop the movements if I tried but if left to relax, my body would start moving if I let my limbs and hips, shoulders and trunk (in addition to my head) follow where my body was pulling them involuntarily, sometimes with great force.
I have come to understand why my body is doing this. I have two main points on my spine that are causing the problems that I have described previously in blog posts in relation to reduced blood and lymph circulation in my head:
1. where the base of the skull meets the neck (both the atlas (AAI) and the degenerated vertebrae below the atlas (CCI), which cause my neck to not be able to hold up my head properly and thus my occiput crushes downwards and causes my head to sink)
2. where the neck meets the top of the shoulders/back.
Both of these things are causing a disconnect in my spine and a blocking/interruption of normal lymph and blood circulation throughout the whole body. Basically, that area is such a crucial one for many body functions and what the body normally does for itself naturally without us ever having to think about it in regards to circulating lymph, it has stopped doing. So with the movements that my body is doing, it is trying to circulate the lymph by itself by using my muscles to move the lymph fluid manually. If I don’t let my body follow where it is pulling me and use those muscles how it’s wanting me to, the lymph fluid stops moving and stagnates. It feels as if it turns solid almost or pools and my whole body goes numb and heavy.
Even though I am doing the movements/exercises approximately 18 hours a day (the rest of the day is for the essentials: 2 hours down on the pillow for sleep, 4 hours in which I try to space out and eat a whole day’s nutrition (these 4 hours are also the time that I have to just use escapism by watching TV shows on my Kindle Fire because if I thought about the reality of my life and the enormity of what I am having to do every day to stay alive, I would be in a constant state of panic and terror so I have to escape into TV or social media), it is never enough. I haven’t recovered feeling in most of my body in a long time (everywhere is numb to a degree). The body isn’t meant to have to do this manually and it is pretty ineffective compared to what it does when it is functioning how it’s meant to.
I actually now have a massive exercise mat in my room to move around on (to get to it, I have to swivel onto the commode and then swivel off it the other side onto the mat), which gives me a bit more space to do the movements and exercises that my body is pulling me to do. The mat is necessary because I don’t want to accidentally roll off my bed and hurt myself while moving around. Even though I’m just following where my body is tugging me, it requires a lot of concentration and effort and strength from me. As you know, my M.E. gets a lot more severe from even slight exertion, so you can maybe imagine how much more weak I am, how much more exhausted I am and how badly my heart is doing. My poor poor muscles. I don’t think I ever stop shaking from the exertion.
It’s very difficult to prise my head away from my shoulders because my neck is so crushed and compressed both by my occiput crushing downwards because its not able to be supported by my unstable and subluxing cervical spine and also by my shoulders being WAY too high and curved the wrong way, which pulls my neck into a strange angle, which worsens my ability to hold my occiput up even further.
If I were able to hold my occiput up with my neck properly, and thus restore normal blood and lymph circulation to my head and body, I’m pretty certain that all the involuntarily (but currently necessary) movements/exercises would stop because my body would no longer have to manually do what should be happening naturally. But no matter what I do to strengthen the neck muscles (I’ve been doing exercises to strengthen them (at great great cost because of the M.E.) for over two years now), the muscles only seem to get weaker and the exercises can’t fix the many structural issues at various places on my spine, shoulders and hips, all of which contribute to not being able to not being able to change the wrong position of my neck in relation to my body and my skull in relation to my neck, no matter how many exercises I do to try and change the posture and structure.
My whole body is wrecked, I can barely breathe or swallow and I’m struggling to move any part of my body at all. But I have to keep going and going. The sleep deprivation is hell from only being down on my pillow for two hours every 24 hours. It’s because when I go down on my pillow for my two hours sleep, I relax and my neck and head slip into their natural (very wrong) position, and the occiput (back of the head) crushes down hard on the atlas and cervical spine. This not only causes compression of the brain and various veins but also the subluxing of the atlas and cervical spine. This also causes severe intracranial hypertension, which I was diagnosed with from my MRI. I have a special pillow that has a raised rectangular bump on it so I always try to position myself and the pillow at certain angles so the occiput is held up a little (I try to manufacture a bit of traction for myself) but it is very difficult (it requires a lot of strength and strain of muscles) and even when I manage to get my occiput to hinge on the edge of the pillow bump on roughly the right spot (I know when I hit the right spot because suddenly BAM I feel the lymph starting to move by itself again and feel blood returning to my face and hands a little), if I move even slightly (even swallowing moves my head too much), then the position and traction is lost. So when I fall asleep during my two hours, I always end up losing the position during my sleep and I wake up feeling like I’m about to pass out, losing my vision, numb everywhere in my body from reduced blood circulation and with stagnant lymph that has solidified, making the flesh feel dead, numb and heavy. So I still can’t spend more than two hours down on the pillow per 24 hours. And I have to spend 18 hours of the day doing the movements/exercises in order to get the blood/lymph circulation to vaguely safe enough levels in my head in order to be able to go down on my pillow for two hours the next night.
I don’t know how I’m still going because having two hours of sleep per 24 hours for years is beyond what I can describe. Almost every second I’m overwhelmed with “I can’t do this any more. I can’t keep going” but I have to because I don’t want to die. I’ve been working so hard for so long and my whole body is just broken from the last two years. It’s just gone. I don’t know how I’ve kept going as long as I have. It’s taken superhuman effort and steel. I have to do the impossible for 18 hours every day. Everything in me wants to just lie down forever but my desire to stay alive is still as strong as ever.
When the base of my skull was lifted up by the fingertips of the chiropractor I saw last year, I felt everything open up and I felt blood rushing to my arms and legs and an amazing heat in them – they even started going pink, instead of the usual deathly pale white. It’s a shame that I can’t lift my head as effectively as that by myself. I think traction would be helpful to keep it lifted in the position that it’s meant to be in, but after experiencing the abuse and disbelief from countless doctors last year, I doubt I’d be able to convince any doctor to give me traction. No doctor in this country seems to have heard of what’s happening to my head/neck before. There are only a handful of doctors in the whole world who specialise in this. The neurosurgeon and neurologists at hospital in London last year (they weren’t the worst doctors I’ve encountered but they were still pretty awful to me) had never heard of any of this.
I’ve tried so many things. I’m still on the treatment of wearing a brace to try and correct my misaligned jaws, and also to expand the upper jaw and bring the lower one forward. The theory is that when the jaws are fixed and correctly aligned (scans showed how bad the malocclusion was), the atlas and spine will correct itself, because where the jaws go the atlas follows. So if it works, maybe the blood/lymph will be able to move more naturally. No success yet but it’s a long process. I’ve had a couple of ambulance trips to London this year to have braces adjusted/have new braces made.
So my day looks like this (I keep very weird hours these days); it’s so messed up. It does change slightly every day but roughly my two hours down on the pillow end up being from about 10am to midday, then I work from midday to 9pm, which is how long it takes to get enough blood/lymph into my head in order to safely sit up propped up by pillows, without passing out, to eat while watching TV for my four hours from 9pm-1am. Then roughly 1am -10am working to get enough blood/lymph back to safely (ish) go down to sleep on my pillow for two hours. My poor parents are exhausted. They are both morning people and these late nights are destroying them, my Mum especially. Most nights it’s more like 2am than 1am that she has to stay up to finish my nighttime care routine (giving food, medications, brushing teeth, refilling water bottles, emptying the commode etc). I feel so awful and guilty about it but I don’t see how I can change it at the moment; I’m doing what I have to do to stay alive.
I want to thank anyone who ever interacts with me on twitter or facebook. In the four hours a day that I get for eating while I watch TV or check social media briefly, the interactions that may seem like such small things to you, even if it’s just a couple of sentences as a comment on a status of mine on facebook or voting/responding to one of my silly polls/questions/other tweets on twitter, it helps keep me going. Sometimes I use it as a motivating mechanism. I post a tweet/status and then start work so that at the end of the 9 hour shift I can look forward to checking my phone to see if anyone has voted/commented. That’s the sort of thing that can make a difference to being able to keep going. Having something to look forward to is crucial. Masterchef Australia has been wonderful in this regard for the last couple of months; the thought of having that to look forward to watching during my four hours sitting up (propped up by pillows) is everything. I don’t know what I’m going to do when it ends. It’s my happy place. The wonderful Tanya Marlow has been a lifesaver too.
So that’s me at the moment. Sorry not to have better news but I know that there are people who have been patiently waiting for an update. I hope this blog post is vaguely understandable and that there aren’t too many mistakes or typos or repeated sentiments! It’s hard to write any sense with my brain like this. I don’t think I’ve explained anything very well and there are things happening to me that are too difficult to describe that I’ve had to miss out, but you get the general idea. xxx