As you would have gathered from the post-surgery update (you can read it here), I desperately need another operation to fix what happened in the last one and being fused into the wrong position without the correct amount of intraoperative traction. I’m fighting for my life every day.
It’s not only the stagnation of lymphatic fluid and reduction in the volume of blood flow to my head and body that continue to be massive problems now (though those are my main problems), but also the operation doesn’t seem to have fixed the dangerous instabilities of my atlas and all the cervical vertebrae below it. Every day brings new deterioration with loud snaps/cracks issuing from my neck, bringing with them further movement/subluxation and a new position of my skull and vertebrae. My skull is sinking further and further into my neck, being pulled downwards with a force so hard that it’s too strong to pull back against. My atlas and skull are constantly clicking in and out, subluxing. It’s the same with the vertebrae below. They also feel bent and buckled beneath the fusion and metal plate in my head and can’t hold the weight.
Most importantly, all the workarounds that I used to have for getting a little bit of lymph moving and getting a bit more blood through to my head have disappeared. The “magic” place on my head/neck (as described in the last update), which when lifted up, used to bring blood flooding back, has been swallowed up into a place that I can’t reach, due to the operation. If I get lucky, I can just about find a place as close to the Magic Spot as I can reach, where I can feel a small sharp spike, then use the edge of my pillowcase to press on the tiny tip of this spike and lift it slightly, allowing a bit more blood to get through. But I then have to stay extremely still, not even swallowing, otherwise I get moved off that tiny pinprick of a spike and the blood and lymph stop moving again. Most of the time I can’t even find the spike though (and it depends on what angle I’m at) and it seems to be getting swallowed up too as my skull sinks further into my neck.
That edge of the pillowcase and that spike are the things that have been keeping me alive for the last few months. Thankfully I have a hospital bed so I can raise the top of it up at an angle in the late afternoon, with my head still attached to the pillow as it rises, so that I can get some food down me and watch a bit of a TV show or film or listen to an audiobook.
I’ve struggled to breathe and swallow for over a decade but recently though, after the biggest crack and movement of my neck to date, it feels like something sharp is pushing hard in a line all across the front of my neck at the top, against the airway, pinching it almost shut. I think it’s because my skull is crushing downwards hard and so the structure of my neck at the front is being jammed up into things it wouldn’t usually be in contact with. In any case, whatever is causing it, I’ve never struggled this hard to breathe. It’s relentless and horrible to try to live through. I feel like I’m being strangled and choked.
As you can tell, I really need an operation. But everything has been held up by the pandemic. We can’t even have the initial video consultation with the new neurosurgeon because he needs new, more recent MRI scans and we can’t get them done for him because Shrewsbury hospital are only allowing ‘urgent’ issues to use the MRI, given the pandemic. So we’re currently in a battle to get them to categorise my situation as urgent.
So the next step will be the MRIs, then the first consultation with the new neurosurgeon (one of the only ones in the world that I would now trust to fix me, after the last disaster) via video, as he’s in New York. Given how hard New York has been hit by the pandemic, if the new neurosurgeon agrees to take me on, I don’t know when it would even be safe to go to New York for an operation. This is all assuming I’d be able to fundraise a very ridiculous amount of money to go there and get the operation. The amount I’d need to raise (though we don’t know how much until we’ve had the consultation) seems impossible and everything feels a bit hopeless.
I’m just focusing on trying to stay alive every day, with new levels of disability, new levels of complete exhaustion and weakness ever since the operation, the like of which I’ve never experienced; it seems that my M.E. has deteriorated.
You may have seen me around on twitter and facebook a bit more than usual. I tend to use them as distractions when I’m most scared. However, it has come with a hefty price and the muscles in my arms and hands are pretty destroyed and weakened by the increased use. They’re seizing up, cramping, twitching and spasming, so I may have to force myself to cut back on the social media. It’s just such a lifeline though that I use to pull me through. But I don’t want to lose the use of my hands completely so I may have to be more sensible and not reply to people who tweet me or who leave comments on my facebook posts, even though I desperately want to.
In other news, I’ve been quoted in a New Statesman article! Three weeks ago I was asked to give a quote in response to the question ‘how does it feel to have everyone suddenly enter the same space of social isolation as you and doing stuff online?’. I sent a really long quote to the journalist, but, understandably, she was only able to use a couple of sentences of it in the actual article. In case you want to see my full quote, I’ve included it below:
At the beginning of the lockdown, when there was a massive influx of people coming online, over and over again I saw many saying ‘I’m so scared’, ‘I feel lost’ or ‘my anxiety is bad’. My initial reaction was: ‘is there anything I can do to help them? Is there anything I could say that would make them feel even a tiny bit better in this situation?’. That night, words and phrases started echoing around in my brain and wouldn’t relent. In the morning, this is the poem that poured out of me as a result, which I put onto my website immediately and shared the link on social media: https://www.jkrowbory.co.uk/2020/03/new-poem-for-right-now
In the next few days, with the majority of people at home and suddenly available online, I was excited at first to have more people around. But then I felt lonelier than ever when I realised that I was still excluded because of how ill I am (I can’t speak so I can’t do phone or video calls; I also can’t keep up with any text communication for long (or sometimes, at all) because my hands and arms get destroyed and damaged quickly and people don’t understand when l don’t reply or only reply once or twice and then fall silent). Unlike me, everyone else still gets to keep in contact with their loved ones, their family and friends. They get to chat with them via calls or messages. I knew that it was a big change for them, going from face-to-face, physical contact to this, but to me, it wasn’t isolation; they still could have the communication and love that human beings crave and need.
Suddenly all the things that I haven’t had access to while bed-bound and for which I have been asking for years to be made available to all those who are bed-bound or house-bound, were suddenly magically possible, now that abled people wanted them. Those who are ill and disabled have always been told ‘tough luck; that’s impossible’ or ‘that’s too inconvenient’.
Online classes and so many other resources (that I’m personally too ill for, but which I know other disabled people need), both for adults and children, became available to watch online; some theatres made plays available to stream; Universal Pictures are making cinema releases available to watch at home. It was upsetting because before Coronavirus, there was already a whole population of people, bed-bound and house-bound, who needed these things. But we weren’t considered important enough or of value enough; nobody cared about us in our isolation or if we had access to things.
A more trivial example is that film plots always got spoiled for us before they finally got released digitally or on DVD because everyone else had seen them at the cinema already and it was almost impossible to avoid spoilers online.
I’d been asking a couple of authors for years when their books were going to be made available as audiobooks (I’m unable to read physical books or e-books), only to be fobbed off repeatedly with ‘soon’ or ‘I have exciting news on my impending announcement on the audiobook very soon’, only for them never to emerge and years passed. Then suddenly, the day everyone went into lockdown, one of these authors announced that all his books were now available on audiobook. Funny that. It does make you feel worthless though and like nobody cares about disabled and ill people.
Plus everyone else in self-isolation (those that are healthy) have so many options available to them. They can write as much as they want (a book if they so choose) without their hands seizing up, they can watch as much TV or as many films as they want without it being too much for them and they can read as many books as they like. They can dance or jump around, sing, do creative things, learn new skills or knowledge, exercise, make silly videos to share online, walk around the house etc.
There are so many new things popping up online for people to join in with to feel less alone, but they are still inaccessible to me and make me feel even more different to all the “normal” people.
I’d give anything to have the type of freedom that everyone else in self-isolation has. It feels like an embarrassment of riches to me.
You can find the full New Statesman article here: https://www.newstatesman.com/science-tech/coronavirus/2020/04/isolation-covid-19-coronavirus-lockdown-disabled-ill-elderly