Today in Prime Minister’s Question Time, a Member of Parliament raised a question about one of his constituents who, like me, has neck instabilities caused by EDS and is also having to crowdfund for treatment overseas because there is nothing available on the NHS for us. There are thousands of people in the same boat. Just hearing this question raised in parliament was incredible. I’ve been consistently ignored by my own MP so it was refreshing to see this.

Mum has immediately sent off an email to the MP that asked the question to tell him about me and to ask him to keep us up-to-date on any developments or if the government are going to set anything in motion or if he can help in any way.

It would take years to train up neurosurgeons in this country and get the specialist equipment into our hospitals in the UK (there’s no hospital in the UK with the equipment needed to determine the amount of intraoperative traction needed for complex EDS patients). So it’s unlikely that this will help my situation personally but it’s great that the process has potentially been started for people like me in the future. I’m guessing that the government are not going to financially contribute to individuals currently fundraising because there are so many people who need these operations overseas. It’s unlikely. Given that there’s no help available to us on the NHS, I wish that they were legally required to fund the treatment that we need abroad. We’ll see what happens.

So I’ll still have to raise the money by myself. This MP seems willing to fight for his constituent. I’m not his constituent so I don’t know if he’ll be able to help me but we’ll wait to see if he replies to our email to see if he can help at all. Meanwhile, we keep fundraising (at gofundme.com/savejenny)

To see the question in parliament and the Prime Minister’s answer, go to time stamp 13:15 of the following YouTube link: https://www.youtube.com/live/aJ-x3Qy1WhA?si=MFiNmC7qm-fwU-Zm

Thank you to Simon Meadows for bringing these PMQs to my attention. We would have completely missed it otherwise!

Here is the video that explains what is wrong with my neck, details of the surgery that I need, my everyday bed-bound life as I fight to stay alive, and why it is getting more urgent that I get this neurosurgery as soon as possible:

<p>The post A question raised in parliament about EDS patients with neck instabilities who have to crowdfund for treatment overseas because there’s no help available on the NHS first appeared on Jenny Rowbory.</p>

Back on 9th May, the proceeds from the first night of Lee Mack, Rob Brydon and David Mitchell’s tour ‘Town To Town’ were going to be split between our fundraiser and another worthy cause. We are happy to report that we have received news about how much was raised and it now has been added to the GoFundMe total. A massive £16,317.17 was raised! A big BIG thank you to all involved, especially Lee Mack, Rob Brydon and David Mitchell. We are ever so grateful and are thrilled that in total so far we have now raised just over £200,000 out of our £750,000 goal on GoFundMe.com/savejenny. It’s an incredible achievement and has taken non-stop fundraising for over two years to get to this point. There’s still a long way to go but nobody thought we’d ever get this far! We can do it!

Unfortunately, the longer that Jenny is left without surgery, the more damage to her neck occurs and she is fighting so hard to keep hanging on in the midst of unimaginable suffering and deterioration. In the news recently, an historic bus was restored for £500,000. If they can restore a blinkin’ bus for £500,000 it must be possible to save Jenny’s life for £750,000. A person’s life is far more important than a bus. It just goes to show, that sort of money is around so we will keep on keeping on and plugging away. For Jenny’s sake, we hope it will happen sooner rather than later.

We hope that you’ve been enjoying following the Journey of Jenny the Giraffe (#JourneyOfJennyTheGiraffe), who is a very very large toy giraffe, being passed from person to person across the country to inspire donations towards Jenny’s surgery. You can follow her journey’s progress through photos at each new location along the way on:

• Instagram: https://www.instagram.com/journeyofjennythegiraffe/
• Twitter: https://twitter.com/journeyofJtheG
• A map here on this website: https://www.jkrowbory.co.uk/journey/

There have been some stunning photos and some funny photos and some incredibly moving stories that come along with them.

You can see a video of some of Jenny the Giraffe’s summer adventures here on YouTube:

A lot of people were telling us that we were going to need more than one giraffe to help raise the money! So there are currently two giraffes in circulation, hopefully soon to be three. Jenny the Giraffe has assured us that she is telepathically linked to the other giraffes and they are in essence all the same giraffe with the same memories and thoughts.

Thank you so much to everyone who has been taking such good care of Jenny the Giraffe and giving so generously of their time, energy and talent to taking photos of her and aiding her on her journey across the country. Word is gradually spreading.

Take heart. We can get there. We must. Jenny needs these surgeries so very desperately; she needed them two and a half years ago and things have only got worse. It’s torturous to see her enduring the sort of suffering that is rarely experienced by anyone on this Earth and to know that money is the only obstacle to helping her.

Thank you so much to everyone who has donated and/or helped spread the word of the cause and shared about Jenny’s story on social media, along with the fundraising page. We are so very grateful. ONCE MORE UNTO THE BREACH, DEAR FRIENDS, ONCE MORE.

<p>The post Some good news first appeared on Jenny Rowbory.</p>

If you want to catch up with the full evening of entertainment, you can watch it in its glorious entirety in the video above. Settle down for a two and a half hour viewing of delight.

It’s a warm hug in a time where hugs are scarce. HOWEVER, if time is not on your side this season or if you just want to watch certain acts and miss out others, below are videos which should start at the timestamp of each individual act. Enjoy!

If you do enjoy any of them, be sure to donate to save Jenny’s life at GoFundMe.com/savejenny Be sure to add the fundraising link to any video you share.

TANYA MARLOW’s introduction to the evening

OLIVIA COLMAN’s message

MATTHEW GOODE

Matthew contributed two segments. The first one is his message and his bedtime story reading of The Wind in the Willows:

Matthew’s second performance of the night was the poem ‘A Visit From St. Nicholas’ (T’was the Night Before Christmas)

LEE MACK

This exclusive interview with Lee Mack was divided into three parts. Part 1:

Part 2:

Part 3:

SONORO CHOIR

‘The Lord Bless You and Keep You’ by John Rutter, which Jenny used to sing in the choir at St. Felix School:

Comedy from PAUL KERENSA

Poetry from World Slam Poetry Champion HARRY BAKER

Poetry by JENNY ROWBORY read by the actor ANGHARAD PRICE

Angharad Price performed two of Jenny’s poems. The first one, ‘For Right Now’:

Jenny’s second poem, ‘Gethsemane’:

Singer-songwriter GRAHAM KENDRICK

With a song that is special to Jenny, ‘Crucified Man’:

ADRIAN PLASS

BARTHOLOMEW DOBSON

With a magnificent rendition of The Wompom Song:

JUSTINE ASHFORD

Jenny’s English and Drama teacher from her years at St. Felix School, Justine Ashford, reads a scene from ‘The Lion, The Witch, and the Wardrobe’. Jenny played the role of Mr. Tumnus in a school production.

A GAMESHOW starring SIMON ROWBORY, KEITH ROWBORY, TANYA MARLOW, JOE CASSELS AND VICTORIA HOCKING

The premise: All television shows face being deleted forever from existence. Only one can be saved. Each player has to make the case why their favourite TV show should be the one to be kept.

This gameshow was shown in two parts. Part 1:

Part 2:

HOME AND AWAY

Two of the cast sent a message:

ANGHARAD PRICE

Angharad performs Jenny’s favourite poem, ‘Caged Bird’, by Maya Angelou:

A sketch starring JO MARTIN, RAKIE AYOLA, LAURA ELPHINSTONE, EMMA LOWNDES and MARTINA LAIRD

This sketch is ‘A Group Therapy Session For People Addicted to Using Film Lines in Their Everyday Speech, written by Jenny Rowbory

MICHAEL HIGGINS

Michael performs an exquisite, magical and moving piano solo of ‘Clair de Lune’ by Debussy.

Thank you so much to everyone who watched and to everyone who has donated so generously. It is all very gratefully received. We still have a long way to go though to reach the fundraising target. If you haven’t donated yet, you can do so here: GoFundMe.com/savejenny

<p>The post Catch Up with the #SaveJenny Evening of Entertainment first appeared on Jenny Rowbory.</p>

It can be watched on YouTube here: https://www.youtube.com/watch?v=kld5_rNCe7M&list=PLQojWy4LtIok9AwWr0YmMUW9gir5krUsv

It will be raising funds to #SaveJenny. All the details of what’s wrong with Jenny and why she needs saving are on her fundraising page here: gofundme.com/savejenny

Please donate and give what you can.

<p>The post #SaveJenny: An evening of entertainment to raise funds to save Jenny’s life first appeared on Jenny Rowbory.</p>

‪In the meantime, the only thing I’m able to do, while desperately trying to stay alive, is listen to audiobooks. I love reviewing things, so here are my continuing audiobook adventures. Let me know if you listen/read any of them as a result of my reviews and if you enjoy them.‬

The Other Bennet Sister by Janice Hadlow

⭐️⭐️⭐️⭐️⭐️ – 4.75 out of 5 stars

This story is told from the point of view of Mary (the middle of the five Bennet sisters in Pride and Prejudice). Brilliantly and satisfyingly done. It’s a faithful retelling in tone and spirit, yet it’s also refreshing and fascinating. You see events and characters from Pride and Prejudice in a new light and it makes you think twice. Mary Bennet may even become your new favourite Bennet sister, believe it or not. Thoroughly recommend this book. Delightful and engrossing. Didn’t want it to end.

The Frieda Klein Mystery series by Nicci French

⭐️⭐️⭐️⭐️ – 3.5 out of 5 stars

I’ve only listened to the first three books so far (Blue Monday, Tuesday’s Gone, Waiting for Wednesday) and am currently listening to the fourth (there are eight in total in this series). Having watched so many tightly-written, expertly executed crime TV series that also have heart and humour (Rizzoli & Isles, Castle, White Collar, Elementary, Person of Interest, Sherlock, Criminal Minds, The Mentalist, Pysch) it was a bit difficult to adjust to a crime book at first. Sometimes I wanted to scream HURRY UP AND GET THERE ALREADY when you’re impatient to know the truth or when you can see things coming a mile off. But after the first book, I started getting into this series a lot more and there were even a couple of things I didn’t see coming. The cast of characters involved becomes something that compels you to want to start the next book as soon as the last one has finished. The tension of the mysteries is built up well. You’ll predict some things but maybe there’ll be some things that surprise you too. Or things that you suspected at first but then dismissed because of the clever way it was done, only for it to unfurl to be correct, in a more fleshed out way.

Throne of Glass series by Sarah J. Maas

⭐️⭐️⭐️⭐️ – 4.25 out of 5 stars

Genre: Fantasy
I’m so glad that I carried on reading after the first book. Although the first book was good, sometimes the dialogue and writing made me cringe a bit (the perils of it being written specifically for a teen audience, maybe) and at the time I also felt the main character was a tad irritating. I wasn’t sure whether to read more of the series and didn’t understand how there could be enough plot to fill six more books or for it to interest me. But oh my goodness, I’m so glad I read the rest of the series. The restraint the author showed in barely letting the breadth or scope or progression of what she planned be apparent in the first book at all! The plotting is, in fact, masterful and the series is so much more than what you think it is from the first book. The surprises and sudden reveals are joyful. It just becomes better and better and by the last book, Kingdom of Ash, when all the threads and characters are coming together, I was LOVING it. Another one that I didn’t want to end.

Parable of the Sower by Octavia E. Butler

⭐️⭐️⭐️ – 3 out of 5 stars

Genre: Collapse of civilisation, survival story.
Slow start and not nearly as deep as it thinks it is. But well written, nuanced and well observed. Some people may think it’s too depressing but I enjoy stuff like this, especially the survival elements.

The Shelf by Helly Acton

⭐️⭐️⭐️ – 3.5 out of 5 stars

Genre: Contemporary Fiction
This was billed as a feminist takedown of reality TV. If so, it’s a rather low bar of what constitutes as feminist but I wasn’t bored once; it was fun and pacy. The concept was entertaining: a woman thinks she is going on holiday and that her boyfriend is going to propose but instead is dumped live on TV and must compete in a series of humiliating and obnoxious tasks in the hope of being crowned ‘The Keeper’. Not a genre I’ve had much experience of before but I looked forward to listening to it every day.

<p>The post My Audiobook Adventures first appeared on Jenny Rowbory.</p>

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

<p>The post April 2020 Health Update and Other News (I’ve been quoted in the New Statesman!) first appeared on Jenny Rowbory.</p>

Jenny immediately knew after the operation (an occipitocervical fusion and also a posterior fossa decompression) that something was very wrong but wasn’t able to communicate it for a while, especially while in the Critical Care Unit after the operation and having lost so much blood during the operation.

Her head and neck immediately felt more unstable, not less, but more critically than that, it felt that the place on her head/neck that she had been going on about for ages, was blocked and closed up (the place where, before the operation, if it was lifted and supported, she suddenly felt something open up at the base of the skull/top of the neck and blood/lymphatic fluid would start entering her head and neck and whole body in much larger amounts (normal amounts for ordinary people); the results were tangible – you could see her skin change colour and turn pink, and red streaks would appear on her skin that looked like blood vessels, where blood vessels that were used to having a reduced amount of blood were suddenly opening up from an increased amount of blood. She would also regain feeling in her tongue, nose, head, mouth and lips when the blood reached those points, regaining her ability to taste and smell; and her vision would also become less blurry when it reached her eyes). Jenny was always trying to find a way to find this place on her head/neck (it sometimes took her hours to find and it all depended on finding the correct angle to access it), that when lifted and supported slightly, had this effect. She assumed that she would wake up from surgery fixed in this position – with that specific spot supported by the fusion and blood flow returning to its correct amounts.

Not only was this not the case, the place on her head/neck where she used to lift up and support to get the increased amount of blood flow back had disappeared. Or at least, the surface area of the specific spot had been reduced to such a tiny dot that even when she does find it now, it doesn’t have the same effect and she doesn’t get that sudden ‘bam!’ of blood coming back. On top of this, whenever trying to sit up now, her skull feels jammed down and crushing against something, trapping the specific place in her head/neck that used to open up. It’s painful and feels like it’s doing damage.

After waking up after surgery, she was able to communicate that she had lost a substantial amount of her vision. She thinks this is because the previously mentioned place on her head/skull that, when lifted and supported, more blood used to get through to make her vision less blurry, is now more blocked and so the proper amount of blood isn’t getting through to her eyes. She’s no longer able to see more than blurry images so she’s not really able to use her phone to go on social media or watch television or films, which were her lifelines. She’s currently experimenting with font sizes to see if she can just about make out words.

Not only this, but now, whenever her head and neck aren’t supported in a specific position against a pillow/raised hospital bed, (i.e. whenever she tries to lift or move her head and support the weight of her skull and neck by herself), her head and neck begin uncontrollably, involuntarily jerking and twisting and yanking violently and rapidly in all directions, which not only is immensely painful and dangerous after surgery, but she can’t support her head or neck and they flop and jerk all over the place and she feels that her skull jams down on the wrong place on her neck, which feels like it’s cutting something off and also doing immense damage, grinding against something it’s not supposed to. Every time she moves her head or neck at all, she can hear a sort of grinding sound in her head. She’s described it as sounding like teeny tiny fragments of bone or “bone dust” crunching away, or maybe scraping metal.

Because of the violent uncontrollable movements when she tries to support her head and it crushing downwards whenever she tries to lift her head or sit up, she is no longer able to use the commode, which she used to do easily and unaided before the operation. This is a big blow to her and has affected her a lot. She now has to use bedpans, using them while lying down flat, and is dependent on other people to go to toilet. This has also made caring for her a lot more difficult, as she frequently needs to go to toilet throughout the day and night.

The trouble is, the supine MRI and CT venogram aren’t showing anything wrong with the operation, according to the neurosurgeon and radiographer. So Jenny has had to fight hard, while extremely ill and incapacitated after the operation, to try to get them to believe/understand that something is wrong. Unsuccessfully. The neurosurgeon is happy with his work, according to what he can see on the scans, and is convinced he has performed the operation perfectly.

They have sent Jenny home from hospital, saying that there’s nothing more that they can do for her. So we are suddenly left with a much more disabled daughter. At least she is now away from the hospital noise and trauma.

The degree of numbness that she experienced before the operation has increased all over her body and there are places on her head that she can’t feel at all now, which is distressing for her. We don’t know if maybe a nerve was nicked in the operation.

Jenny is frightened and keeps communicating “please help me”, “please fix this”. She is also mentally diminished (not so much that you’d notice if you’d never met her before but compared to what she was like before, for her it feels like a gaping chasm). She’s struggling with comprehension, finding the correct words for things and basic maths. This is very upsetting for her. It’s a huge loss on top of all the other losses.

The only plan of action that we had was to try to get an upright MRI instead of a supine one, because it’s when she lifts her head and sits up that all her problems increase even more and things are even more blocked and jammed at the back of her head/neck and the rapid involuntary movements start. But we heard back from the upright MRI scan place today and they say that it’s too unsafe at this moment in time after the operation for them to agree to do the scan, given the flexion and extension positions that they need patients to sustain during parts of the scan. So we’re stuck, unable to prove that there’s anything wrong.

We have all been left reeling and just trying to cope with the basics of surviving and her increased care needs. Jenny feels like she has lost everything and is distraught. She feels like she has let everyone down, especially after the incredible kindness and generosity that was shown to her during fundraising. She feels embarrassed.

We don’t know what to do now. There are only a few more neurosurgeons in the world (none of them in the UK) who do these operations on EDS patients. But it’s hard to know who to trust now. And turning to any of them would cost vast amounts of money. We would need to raise even more than we did before, by a very significant amount.

The only bright moment since the operation for Jenny was when she was attempting to “watch” (listening and trying to make out some of the blurry shapes) the episodes of Doctor Who that she missed while in hospital. In the most recent one, when she heard the beginnings of Captain Jack’s voice all of a sudden, she was smiling with joy and excitement at the surprise. He was back! So thank you Doctor Who and thank you John Barrowman.

<p>The post Post-surgery update on Jenny first appeared on Jenny Rowbory.</p>

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

<p>The post Health Update October 2019 first appeared on Jenny Rowbory.</p>

BOOKS

Top 5 favourite audiobooks that I listened to for the first time in 2018 (I’m unable to read books due to my illness so I have to listen to them):

The Explorer by Katherine Rundell
I’d recommend this book to everyone. Technically it would be labelled as a book for older children but it’s such a good read. Immersive, brilliant and beautiful.
 

Taken on Trust by Terry Waite
I’m slightly cheating by including this one on the list because I first read some of it before I became ill. But I didn’t finish it back then and I’d forgotten a lot of it so listening to it afresh this year was a pleasure and of course it has much more significance to me now, given my situation. I think this book might now be in my top 10 books of all time.
 

I Know Why the Caged Bird Sings by Maya Angelou
Although Maya Angelou’s poem of the same name as this book has been my favourite poem since I was 10, I’d never actually read the book until this year. Gobbled it up.
 

The Lone City trilogy (The Jewel, The White Rose, The Black Key) by Amy Ewing
For most of my life I’ve always said that fantasy is my favourite book genre but in recent years I’ve struggled to find any new fantasy books that I don’t get bored with and so I often don’t finish the audiobook. Dystopian YA books have replaced fantasy as my favourite genre for many years now. This trilogy is the first time I’ve enjoyed the fantasy genre in a long while (although it does have dystopian elements too). It’s not high fantasy and it’s not exactly going to win any awards for literary merit but the trilogy was very enjoyable. I didn’t get bored once!
 

Harry Potter and the Cursed Child Parts I & II Script
I’m only including this because I’d been waiting to read this for so long and, given that I’m a big Harry Potter fan, I was so frustrated that the play had been inaccessible to me because it isn’t available on audiobook. It still technically isn’t available but my older brother found a recording of it for me. I was so excited! I’d managed somehow to avoid all spoilers, so thank you to everyone who kept schtum. Stop reading now if you want to avoid any spoilers! So what did I think of it? At the end I was sort of left thinking “is that it?”. I was simultaneously both relieved and disappointed that nobody big died. When the original Harry Potter books were still coming out, part of the fun and anticipation/excited-dread was guessing which major character was going to die in the next book. I’m very relieved that Hermione wasn’t killed though (well, in the real timeline).
As a whole, the play was nowhere near as good, satisfying or well-plotted as a JKRowling-written Potter book but I guess it has to be seen in the theatre to appreciate it at its best for what it is.
I found Albus annoying. And Hermione would have been a far better Minister for Magic than what was depicted but I’m glad she was the Minister for Magic, like I always said she should be. She would never have hidden the time turner with such a simple riddle though; she’d have made it much harder. It’s a shame we didn’t get to know what had happened to more characters too (Hagrid, Luna, the rest of the Weasleys etc). I especially wanted to know how George was faring without Fred because, even though it’s fiction, I worry about him! I was pleased that Neville ended up a teacher at Hogwarts though as that’s what I always said thought he would be. I think that Hermione and Harry especially would have been at a much higher skill-level of magic than they were shown as in the play and most of their spells would have been nonverbal by that point, especially Hermione, but that wouldn’t have worked on stage, I guess. Overall, I found it fun but a bit insubstantial and anticlimactic. And I was more insterested in the old characters than their children. I might just stick with my head canon.

 
FILMS

Last year was such a bumper year for films that I really loved (see last year’s list of favourites here). In general, this year’s crop hasn’t been as great but here are my favourites out of them.

Best 10 films that I saw for the first time in 2018:

The Guernsey Literary and Potato Peel Pie Society – this was my favourite film of the year

Black Panther [This comment is irrelevant to the film but it amuses me that the sign that they make with their arms crossed over their chest when they say ‘Wakanda Forever’ is the same sign that I use when I’m signalling to Mum that I’m locked in and unable to move my hands to signal/sign to her more and unable to point at letters on my alphabet card to spell words out. Very different meanings!]

Dumplin’

To All The Boys I’ve Loved Before

Star Wars Episode VIII: The Last Jedi – after not liking The Force Awakens so much, it was great that this film was much better.

The Greatest Showman – I’ve still got the songs stuck in my head!

The Princess Switch – DON’T JUDGE ME. THIS FILM IS EXACTLY WHAT I NEEDED.

Kubo and the Two Strings

Swimming with Men – charming little film. Worth it for the joyous, feel-good ending.

The Post
 
Honourable mentions:

Justice League, Home Again, I Feel Pretty, Incredibles 2, Paddington 2, Jumanji: Welcome to the Jungle, Solo: A Star Wars Story, Skyscraper, A Quiet Place, Rip Tide, Ocean’s 8, Jurassic World Fallen Kingdom, The Baby Sitters Club, Avengers Infinity War

The most disappointing films that I saw for the first time in 2018:

Thor: Ragnarok
I loved the first two Thor films (Thor is my fave Avenger; well, him and the Cap) but this film almost felt like a spoof of a Thor film. It was way too meta and there wasn’t a good flow to the story; it felt bitty, fitful and cluttered, more similar in feel and humour to the Guardians of the Galaxy films, which I don’t enjoy quite as much as the other superhero films.
I was a bit thrown by Jane Foster, Erik and Darcy not being in the film. Without them, the film didn’t feel grounded and it felt disconnected from Earth. I also didn’t like the random, dismissive one line explanation of Jane’s absence (apparently she and Thor broke up), especially since Thor’s mother saw their love and died to save Jane’s life in the previous film.
The quick and offhand killing off of all Thor’s closest friends was weird. They deserved better. And where on earth was Sif? No explanation as to where she was.
Thor himself seemed to have had a personality transplant from the previous films, almost a completely different person. It was disorientating.
Potentially the idea of Hela could have been interesting but she turned out to be a rather one-dimensional villain.
Plus there seemed to be a case of ‘how many famous people can we get to cameo or star in our film’. I mean…Matt Damon…whaaa? It just got ridiculous. The Benedict Cumberbatch (as wonderful as he is) part felt superfluous too.
Genuinely would like to know the reasons why you all were raving about the film, other than ‘there were some funny lines’ and ‘Jeff Goldblum’.
I did enjoy the Thor-Loki interactions though. Their relationship was always at the heart of things. So I enjoyed those bits.
Overall, I’m glad I saw it but it just wasn’t as good as I thought it was going to be, which is why it’s on this list. Disappointing. Why did you all like it so much?
 

Ready Player One
Terrible adaptation of an enjoyable book.
 

Mamma Mia! Here We Go Again
[SPOILER WARNING] This is only on this list because I was looking forward to it and it wasn’t what I was expecting or wanting at all. I was really disappointed with what they did to it. People watch Mamma Mia to cheer themselves up, not to be sad and depressed. I HATED that they killed off Donna. Why why WHY. It was too sad for what I was hoping to be a happy viewing experience that would lift my spirits. Was Meryl Streep just not available for most of the filming or something? Otherwise why WHY would they get rid of the main (and most charismatic) character (young Donna doesn’t count; it’s not the same). Realism is not something you’re looking for in a Mamma Mia film. Just give us happy endings for goodness sake!

The worst film that I saw in 2018:

20th Century Women

Films that I’m most looking forward to seeing in 2019:

The Crimes of Grindlewald
A Star is Born
Bohemian Rhapsody
Mary Poppins Returns
Aquaman
Ralph Breaks the Internet
Captain Marvel
Avengers Endgame
Toy Story 4
The Lego Movie 2
Aladdin
Isn’t it Romantic
What Men Want
The Lion King
Dark Phoenix
Shazam!
Dumbo
Wonder Woman 1984
Frozen 2
Star Wars Episode IX
Little Women

TELEVISION

Best of the TV that I saw for the first time in 2018:

Brooklyn Nine-Nine
Lost in Space (the new 2018 version)
Alexa & Katie
Brothers and Sisters
Scandal
Vanity Fair
The Circle

Best TV that I continued to watch new seasons of in 2018:

The Good Fight
Madam Secretary
Masterchef Australia
Elementary
Michael McIntyre’s Big Show
Hunted
Star Trek Discovery
Would I Lie To You
Richard Osman’s House of Games
The Graham Norton Show
Agents of SHIELD
Sense8
The Big Bang Theory
Crazy Ex-Girlfriend
University Challenge
Home and Away
The Handmaid’s Tale

Most disappointing TV that I saw in 2018:
 

 
Doctor Who – apart from two exceptional episodes (‘Rosa’ and ‘Demons of the Punjab’), this series has been poor. ‘Kerblam!’ was fun but the rest of the episodes were pretty dire. It was the first time that I’d ever been bored watching Doctor Who. Sad times.
I was really looking forward to a female Doctor but I think she’s been let down a bit by the showrunner. I also don’t like that they’re treating her differently to male Doctors; she seems to spend a lot of the time, more so than previous doctors, not having a clue what’s going on. Plus she keeps saying things like “I’m not sure who I am myself yet” (during the period of getting to know a new Doctor, there will always be an element of this, but hers seems to have lasted longer than previous Doctors) and she seems to be taking a lot longer than male Doctors to get used to the new Tardis controls. This all rubs me up the wrong way and along with her character not seeming as clever as previous Doctors (they seem to have made Jodie more of an action hero than a cerebral, intellectually brilliant character), and not being as commanding/authoritative as previous Doctors, it all feels a bit sexist. But I’m hoping for the best as she has the potential to develop into a great Doctor once the writers find their feet with her…hopefully.

Best TV documentary of 2018:

Burma with Simon Reeve

 
SPORT

My favourite Sporting Events of 2018 that I thoroughly enjoyed:

The World Cup – what a World Cup it was! My favourite matches were probably England v Colombia, Spain v Portugal, France v Argentina, Belgium v Japan and England v Panama.

The Commonwealth Games

Gymnastics World Championships

VIDEOS

These are some short videos/clips that I’ve seen on Twitter this year that made me smile. I hope that they make you smile too.

I must be one of the few people to have never seen this before today. It is truly joyous. Watch with the sound up. pic.twitter.com/bAm06CRM8R

— Nick Harvey (@mrnickharvey) November 29, 2018

When New Yorkers hear a violin 🤣🔥🎻 pic.twitter.com/HEjW3D3pge

— Junebug (@juneelite) August 4, 2018

 
https://twitter.com/kwilli1046/status/1055528063906267138
 

I’ve watched this about 10 times and have belly laughed every time. I now share it with you to do the same. 😂😂😂 pic.twitter.com/gEj0FaNTV7

— Thomas J (@TJ_Hewitt) December 17, 2018

 
https://twitter.com/AMAZlNGNATURE/status/1020643243829030917
 

Faith in humanity = restored 🙏💞 pic.twitter.com/moWO4wIADG

— The Dodo (@dodo) November 25, 2018

I love this moment in Christoper Lee's This Is Your Life when it dawns on Lee that Vincent Price is there and this joyful "my god, they flew over the big man?" surprise dawns on his face. Price then proceeds to balance charm, sincerity and self-effacement perfectly as only he can pic.twitter.com/RussRV79mE

— Marty Punkhouser (@NoChorus) September 24, 2018

This otter teaching a human how to pet it gets me every time pic.twitter.com/wzC7hSAkJ2

— Dr. Anna Hughes 🍂 (@AnnaGHughes) November 27, 2018

“He loves me unconditionally, I count my blessings every day.”

The loving bond this man has with his dog helped take him off the streets – and even saved his life. pic.twitter.com/NyDRkiApKY

— Channel 4 News (@Channel4News) December 20, 2017

Top Tory Trolling from Andy Serkis 😂 pic.twitter.com/3jShDqyRjV

— Gerz (@GHNeale) December 9, 2018

 
https://twitter.com/harleivy/status/1073569172536393728
 

This made my day! https://t.co/lcNRMG4fSa

— Eddie Arthur (@kouya) January 5, 2018

This is just so very Cher! Both amazing & utterly bizarre! https://t.co/iCTSzg4Ba8

— Liz Clutterbuck (@LizClutterbuck) October 2, 2018

A first snowfall for Eritrean children new to Canada. #NewcomersWelcome #WelcomeToCanada #RefugeesWelcome #privatesponsorship #BVOR pic.twitter.com/XaWTDGAxfg

— Rebecca Davies (@RebsD) November 10, 2018

WATCH: Here's what a boy did when he was too starstruck to meet the Queen pic.twitter.com/Q5rFrX0BIp

— Bloomberg Quicktake (@Quicktake) December 7, 2018

Physics is visually SATISFYING.

Ice––on a trampoline. pic.twitter.com/8XvVRaDyiH

— Josh Wolfe (@wolfejosh) December 13, 2018

 
https://twitter.com/lntolisa/status/1077395206654357504
 

Very Smart 😎 pic.twitter.com/6uUz81FTZq

— Capt.Harry (@Captgorowara) May 23, 2018

 
OTHER STUFF

It’s been the year of the fun t-shirt for me and it amuses me to wait and see if any doctors, nurses, ambulance crew or radiographers comment on them. Here are a few:

I got some more tops for Christmas that I look forward to wearing in the year to come:

Things I’m most proud of doing in 2018

* Doing the impossible every day. Somehow surviving with only 2 hours out of 24 hours with my head down on my pillow. FOR A WHOLE YEAR NOW. Working and working so hard that my whole body shakes with the exertion of holding my whole body in difficult and strained positions that very gradually return a bit of blood to my head and neck over 22 hours (if you’ve read my blog posts this year, you’ll know what I’m talking about), in order to stay alive and in order to get vaguely enough blood back to go down safely on the pillow for 2 hours of the day.

* The wonderful Tanya Marlow published some of my thoughts on God and suffering that she thought might be helpful to others and put them into an interview format on her blog. This meant a lot to me and made me feel like I was maybe helping some people too. You can find it here if you would like to read it: http://tanyamarlow.com/jenny-rowbory-suffering/

* I launched the ‘Five By Five’ challenge to raise money for M.E. research and vEDS. Thank you to everyone who participated. If you didn’t quite get around to making a video or said that you would do one and then forgot about it, there’s still time if you want to make me happy. The #FiveByFive challenge is this: video yourself declaring your top 5 favourite things in 5 different categories (books, films, TV shows, sports & songs). Share your video then donate here https://mydonate.bt.com/fundraisers/fivebyfive to raise funds for vital medical research. Nominate 5 others to do it too. Here’s my video explaining the whole things and declaring my own favourites:

 
Happiest moment of 2018:
I SAW MY NEPHEWS YESTERDAY. Felix for the first time ever and Caspian for the first time since he was a baby. I can’t tell you how happy this made me. Destroyed but happy. I’ll hang on to those memories to keep me going.

 
Worst things of 2018:

Where to start? I’m not going to bore you by repeating myself; you can read about what I’ve been going through this year in my other blog posts. Every day I don’t know how to keep going and everything continues to deteriorate but I somehow have to find the strength to carry on. It’s getting harder.

* I lost count of the number of ambulance journeys this year; I think it’s probably thirty something trips. Just one ambulance trip would have made me deteriorate, let alone this amount. It’s been a gruelling process of finding out little bits of new information from different doctors/medical professionals with different specialities and trying to piece it all together myself because there’s nobody who has knowledge of all the different medical disciplines involved and nobody who has heard of this particular thing I’m experiencing. It’s been hard being this ill and still having to figure it all out by myself and trying to find solutions. Scans showed that the blood pathways in my head are much altered; the cervical veins have a very abnormally large circumference. Nobody can tell me why this is happening but they think it’s my body trying to compensate for something very wrong. We’re hoping that it’s all being caused by the atlas bone (at the top of your spine/base of your skull), which scans show is abnormally rotated upwards and to the left. The trouble is that everyone has different ideas about how to correct the atlas. There’s the horrific option of surgery, which in my condition is likely to be extremely dangerous, and nobody can tell me for sure whether it would definitely fix the problem with the blood flow, so I’m exhausting all other options first before I even consider it. In November I went to a special chiropractor for Atlas Orthogonal adjustment, which did move the atlas slightly (but didn’t correct it completely or make it straight) but it barely made any difference at all to getting blood back in my head, though it did stop the torticollis. I was told that it takes a while for blood pathways to change after the adjustment so I was still hopeful but the adjustment sadly hasn’t held (it clunked out of position in the early hours of Christmas morning when I twisted my head too far one way while I was working on my head in the extreme positions that I have to hold to bring even a small amount of blood back) but I don’t think it was making much difference anyway. When I continued to deteriorate and become physically weaker after the adjustment (because of the trip there and the exhaustion from a whole year of 22 hours a day of physical exertion of holding my head and neck in difficult positions and from not being able to lie flat like I need to be and not being able to touch my head and neck to anything, including my pillow), we decided to follow another lead. The chiropractor had shown me in my x-rays that my jaw was very misaligned and rotated and mentioned that it might be part of the problem because where the jaws go, the atlas follows. So when, as a teen, I had my four teeth extracted because of overcrowding of the teeth and a brace put in to close the holes up, the jaw was pushed into an unnatural position and not allowed to grow properly. I had the jaw-moving stuff done by an orthodontist while I was at university at around the time that I became ill. So the jaws might have moved he atlas out of alignment and the rest of the spine followed (I have mild scoliosis). If this was the case then this change in the spinal column and atlantoaxial misalignment and subluxation would have wrecked my neuroimmune system and left me unable to get rid of viruses (which is when I first became suddenly ill when I caught a nasty virus in the first term university). This theory is very appealing because it potentially means that I could maybe improve somewhat if I can somehow fix the jaws and if the atlas follows suit and corrects gradually by itself. So in December, way too soon after my week spent with the specialist chiropractor that made me deteriorate from having my body being moved by an ambulance to and fro plus other things, I travelled by ambulance to London again to a dentist/orthodontist who specialises in this jaw-atlas-spine connection theory. It was pretty disappointing because he said that I would feel some difference immediately when he put the brace in but so far nothing has happened and it’s been a few weeks of having the brace on. The brace has also moved my teeth/jaw so that not a single one of my teeth fit together anymore so when I take the brace out to eat, it’s very difficult and painful to chew. Also, when I take the brace out now, not long afterwards I start gasping for breath so I have to try to wolf down soft food quickly in order to put the brace back on as soon as possible. Maybe it has to get worse before it gets better? I don’t know. I have to go back to him in early January to see what’s going wrong, which, if it doesn’t help, will absolutely physically wreck me again. It might be trial and error. I really hope this theory is correct but I just don’t know.

* Moving house (another ambulance) early in the year.

* A pneumatic drill and roadworks outside our new house for weeks when we first got here so we had to move to temporary accommodation (more ambulances!) because the noise was agony and destroying me.

* More gaslighting, trauma, disbelief and abuse from doctors and nurses

* Hospital stays and all that they entail

* New scary diagnoses: AAI and CCI

 
BLOG

Blog posts that I’ve written in 2018:

You (yes, you) need to read what I have to say about the plastic straw ban

Let me tell you a bit about my parents…

The launch of my ‘Five by Five’ challenge and how I managed to do it

A Lot Has Happened

Update on October’s hospital visit and current health

How has your year been? I love hearing your news and how you are. What were your favourite and least favourite things (films, TV, books etc.) of 2018? Let me know.
 
[As an aside, please don’t contact me via Facebook Messenger; I don’t have Facebook Messenger and since about April, the normal facebook app no longer lets me see messages that were sent to me via messenger. So if you’ve sent me a private message since then, I haven’t seen it I’m afraid.]

<p>The post Best and Worst of 2018 first appeared on Jenny Rowbory.</p>

In case you don’t follow my twitter or facebook feeds, the following was posted on them on Friday 19th October:

As of yesterday, Jenny is in hospital again. It’s the worst place for her but after over 9 months of only being able to put her head down on her pillow for 2 hours per 24 hours because any pressure/touching of her head causes increasingly deep numbness and blood reduction to the head, causing her to start to black out unless she takes her head off the pillow, she couldn’t carry on anymore and is completely broken. That level of sleep deprivation is unliveable. She’s been superhuman to carry on as long as she has. The trouble is no doctor has heard of these particular symptoms before and can’t understand what is causing them; she is a rare and unusual case so they’re a bit at a loss. They’re going to try a cervical-thoracic back brace to see if that helps, as it’s a less drastic option than the surgery that the specialist doctor in Spain (one of the only doctors in the world who specialises in these problems in patients with Ehlers-Danlos Syndrome) thinks she needs (but that surgery means she would lose 100% movement in her neck for the rest of her life), but the brace will take a while to be ordered. Jenny doesn’t have time as she’s struggling to hold her neck up to keep her head off the pilllow so that she doesn’t become severely mentally incapacitated or braindead from blood being cut off when her head touches the pillow. The Spanish doctor and neurosurgeon here also want another upright MRI to see if the cervicocranial instability, reversal of lordotic curve and Chiari malformation have deteriorated since the MRI in February. They also want to see further down her spine to see if there are additional problems there. But an upright MRI is specialist equipment and booked up months in advance so we’re waiting to see if it’s possible to get an emergency appointment or not. It’s a dire situation and Jenny is in a bad way. The ambulance journey and loud hospital environment is too much for her but she had no choice. She has never been able to sleep at all while in hospital so she’s not even getting the two hours per 24 hours. She’s really struggling to keep going on and keep her head off the pillow while on no sleep at all and is not very with it. She no longer can put in the work of holding her spine and neck and head in certain positions which she had to do for 22 hours a day for the last 9 months, which returned just about enough blood to her head to safely go down on her pilllow for two hours. But she has no strength left to do all that anymore, which is why she had to go to hospital, although there’s no help with this yet. Medicine just doesn’t have the answers to this yet. She is a very rare case and there are no doctors in this country who specialise in it. It’s hard to get the head around that the chances are far far more likely of winning the lottery than of having what Jenny has.‬

 
We were able to get an “emergency” appointment on the Monday for the upright MRI and from there I went straight home as hospital wasn’t an option because not only could they not help me, I got zero sleep there and couldn’t cope with that, plus the level of noise of being in hospital and also the staff constantly coming in and out of the room. There was no point being there, even though I’m in such a bad way. They couldn’t save me.

I was in the upright MRI machine for three hours and after just over two hours of it touching my head, I blacked out and fell forward out of the seat. Thankfully, the radiographer was standing right next to me throughout so he managed to catch me. At least I have proof that I do black out when something is touching my head for about two hours for all the doctors that disbelieved me.

The report from the upright MRI has come and in addition to the craniocervical instability diagnosed from the previous scan, atlanto-axial subluxation and instability (AAI) were also found, which is serious (click here for more information on AAI). There are only 3 doctors in the world (one in Spain and two in New York) who specialise in this in EDS patients. The one in Spain we were already a bit in contact with for the craniocervical instability and when he saw the scans he sent a one sentence email confirming the atlanto-axial instability and subluxation, saying that he wants to operate. The next step would be a Skype call with him for a proper consultation, although I cannot speak so Mum would have to do the talking. The first available appointment for this Skype call isn’t until 27th November so I somehow have to hang on until then. He’s very in demand. In the meantime, we have a lead on one surgeon in the NHS who used to do this particular surgery for EDS patients but we’re not sure if he still operates or has stopped. There is literally nobody else in the UK. It’s so hard to get information and doctors are so difficult to get hold of and it always takes so long for them to get back to us or take action. There is a multi-disciplinary team slowly being set up in this area of expertise in the UK but it will be too late for me and the surgeon has never done this operation before; he’ll just be starting out when/if it does get up and running. I’ve been on the waiting list since January.

It all seems a bit impossible. The journey to London nearly killed me, let alone going to Spain and I would have to raise a ridiculously huge amount of money (probably through GoFundMe) if I were to go ahead with the operation for both the operation and Medevac air transport and hospital stay. It would cost extra as well because the vEDS means the surgeon would need extra insurance because vEDS patients often die during surgery.

Obviously if the surgeon in Spain says that I’ll die without the operation then I’ll do everything I can to raise the money to get it done.

The thing is, even in a previously healthy patient, I think the operation has a 10% chance of complications/death so goodness knows what such a weakened patient from M.E. and the dangers of vEDS would add to that. Another problem with the operation is that usually for atlanto-axial instability, the surgeon would put screws in the head/neck and put metal in to fuse the upper bits of the spine and anchor it to the vertebrae below but because I have craniocervical instability too (right below it) and degenerated discs, he would have to fuse it to quite a long way down (C0 to T1 for those who know about the spine), otherwise it would be too unstable. So I’d lose all motion in my neck forever, which is too permanent for my brain to take in at the moment. I wouldn’t be able to look up or down, left or right. And even then, we don’t know for sure that it’s this atlanto-axial stuff that’s causing the numbness upon touching/pressure on my head (the latest theory is that it’s a severe case of Cerebrospinal Fluid Stasis (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2842089/) when my head touches anything) so if I have the operation and it doesn’t fix that problem, I’ll be in big trouble. And I’ll be much more disabled after the operation and my care needs will be more than my parents can handle by themselves. According to the surgeon, the pain after the operation would be so great that it will feel like you’re in a dark tunnel for weeks, unaware of much else or other people. Which makes sense, given what is being done to the body. It’s likely that I’d be on a ventilator and life support for a while.

We’ve found the most knowledgeable doctor in the UK on this condition (he’s not a surgeon though) and he says that the operation would be necessary in my case to prevent death but did suggest a chiropractor (there’s only one chiropractor in the UK who he would trust to do this dangerous a thing) to try first before having surgery but that any adjustment the chiropractor made was unlikely to stick and stay in place, given the EDS (even though I have vEDS, all these symptoms means that I have some overlap with other types of EDS). We have since been advised though by various experts that with atlanto-axial instability and subluxation, chiropractic adjustment is extremely dangerous (as in dying type of dangerous) and should be avoided at all costs. So the experts are contradicting each other a bit. We have contacted the chiropractor but he hasn’t agreed to take me on yet and wants to see all my scans and all my other medical information first.

So I have a big decision to make on whether to try the chiropractor or go straight for the surgery. I really don’t want the surgery or the chiropractor but I can’t carry on like this anymore (I don’t know even if I can last until 27th November but I’ll try my best) and something needs to be done.

Sorry for this badly-written, muddled explanation of an update. I’ve struggled to find the words with all the head problems I have. I thought it was better to have a badly-written update than no update at all. Thank you so much for all your love and kind messages. Sorry that I’m too ill to reply to you individually.

Jenny xxx

P.S. One of the radiographers liked my t-shirt this time round. Here it is:

He also thought I was 25 and one of the ambulance crew thought I was 22 and refused to believe I was 32, which was quite funny. Maybe it was just the t-shirt or maybe good lighting. It’s weird because I think that my face has aged a LOT this year.

<p>The post Update on October’s hospital visit and current health first appeared on Jenny Rowbory.</p>