https://www.justgiving.com/campaign/TeamDiamond

Team Diamond: Jessica's Fight For A Life, Cheltenham (2025)

07/11/2023

Hello all! The last time I updated all the way back in January I mentioned my tentative plans to launch a newsletter documenting my journey of surgical recovery. I’ve spent the last ten months trying to make that a reality, only to be thwarted by life at every turn (including trying to post this – I wrote a whole draft and then my computer crashed). 2023 has been an Annus Horribilis for me so far, and everything I had planned and hoped for myself has been unattainable due to various misfortunes, especially with my health.

Despite that, I had worked incredibly hard to get the first edition of the newsletter ready to launch in October. However, unfortunately at the end of September I caught covid for the first time which made launching the newsletter, and doing much of anything else, impossible.

I am determined to not let 2023 pass me by without starting this project that I am so desperate to bring into being, and so I have decided to launch it despite not having any pieces of writing to share beyond the first edition which is just an outline of the project. The newsletter is called Notes From the Fallow Field and the first edition will be posted on November the 13th. Beyond that, I don’t know if or when I will be able to share. Right now I am having to take life one moment at a time, not even one day at a time, so I do not know what will be possible for me with this project. But I refuse to let a terrible year prevent me from at least starting it.

If you would like to subscribe, you can do so here: https://fallowfield.substack.com/

Alternatively, you can DM me your email address and I will add you to the subscriber list.

From now on, most of my updates will be on there, so do subscribe or check the website if you would like to stay in the loop. I hope to do one last post on here for the 2-year anniversary of my big surgery, after which this page will lay dormant unless I need it again (hopefully not!).

Otherwise, thank you so much for your support over the past few years through the fundraising and the surgeries. The impact of the surgeries has been incredible and none of it would have been possible without the support of this community. I am forever indebted and hope to pay it forward when I am able.

Love,
Jessica xo

Image description: an illustration of rolling fields with a tree in the foreground and mountains in the background. Overlaid are the words 'Notes From the Fallow Field' in Jessica's (messy) handwriting.

30/01/2023

Hi all! On the one-year anniversary of my first surgery I said that I would update further soon, on the anniversary of my second (and bigger) surgery. I also intended to do a series of more in-depth and specific thank yous to the people who got me to this side of the surgeries.

Well, not long after that I caught a virus which wiped me out for over two weeks, and then spent several weeks playing catchup and trying to rehabilitate myself from that. Just as I was beginning to make some headway, I had my first fall since surgery and broke my big toe and damaged the other toes on that foot, which has meant a massive slide backwards due to all of the knock on effects. This month has been jam-packed with medical appointments, and two weeks ago one of those appointments culminated in a new and somewhat unexpected diagnosis which has knocked me a bit psychologically. So after that rollercoaster of events I'm feeling completely burnt out and exhausted. And that's alongside my ongoing rehabilitation, regular treatments, and existing conditions. And of course Christmas! It's been a lot 😩

All of that to say, I don't think I'm going to be able to do a proper update for quite a while. Not that I think anyone is refreshing this page daily, desperately anticipating it. But it's a weight on my shoulders as I said I would do it and I know that people are keen to know how I'm doing. I still want to do those posts at some point, but I'm going to have to delay it until I feel like I'm back on solid ground and not drowning.

In the meantime, I want to reiterate my eternal gratitude to everyone who donated and supported the campaign in any way. And to all those who care how I am doing: Both surgeries were a success and (fingers crossed, touch wood 🤞), I have had no major complications so far. Each operation did what I hoped it would do and more. The bulk of my issues now lie in dealing with my ME, which while helped by the removal of the symptom load from the CCI and OTCS, is still an absolute beast of a disease which I have to go to battle with every day. Mentally I'm grappling with how to balance my gratitude for the improvements from the surgery with my grief over not being able to have the life I dream of (or even a normal, average life) because of the ME holding me back at every step.

This first year of rehab I've really retreated into myself and become a lot more private. I've shared very little of my health journey online, in stark contrast to my previous oversharing. I've not actually been online much generally. This has felt like a necessary step to ensure my wellbeing in an incredibly vulnerable and challenging time. Rehabilitating from neurosurgery is not a quick, easy, or simple process. It's definitely among the hardest things I've ever had to do, which if you've followed my story for a while, you will know is really saying something!

However, this level of privacy means that I think people are a bit in the dark about what it is like to recover from two back to back major surgeries in the context of ongoing severe illness. I hope to shine a light on my experiences to help people understand the complexity and time-consuming nature of this process. And just to give people a perspective that they wouldn't otherwise have on a kind of life that is very different to their own. My tentative plan is to create a newsletter where I can document my thoughts on the rehab process and update people on what I've been doing.

I will let you know if this idea comes to fruition, and of course share it here if it does. As for the update and thank yous, I hope you will bear with me and know that I will get to them when I can. I don't have a timeline on that, but I think it probably won't be for quite a while, at least not until I've had a chance to catch my breath and process so many hectic and stressful months.

For now, thank you again for your support and for following my journey. I hope to have more to share in the future, when I am able.

Image description: Jessica smiling at the camera in a periwinkle jumper.

03/11/2022

A year ago today I was on the operating table, having the first in a series of two major neurosurgeries. I'm so grateful to everyone who made those surgeries possible, and for my surgeons who gave me such a good outcome.

I'm at a lifelong high risk of re-tethering due to an abnormality they found in my spinal canal intraoperatively, and have spent the last year terrified every time I had a flare of symptoms or a near-miss.

But I've also spent this year reveling in the fact that I'm not in an unfathomable amount of pain every second of every day. Of course I still have quite serious chronic pain, but the level of pain I was in before my surgery is incomprehensible to me now.

This time last year I could barely walk, had severe tremors, was rapidly losing control of my bladder, and was dealing with excruciating nerve pain, because my filum terminale (and we later found, a lot of nerves) had adhered to the wall of my spinal canal.

It makes me very angry and sad that I was being left to suffer like that when there was a solution, and that I have permanent nerve damage as a result. But I am so so grateful that as well as stopping the degeneration, the surgery brought some symptom improvement.

I will do a proper update on the 1 year anniversary of my fusion, which is 3 weeks today. But I wanted to mark this day because the support of my community on here enabled me to be where I am today. Thank you all 💗

07/10/2022

It's weird to think that this time last year we were in Spain for further testing and to find out when I might be able to get a date for surgery. On the 6th I had my first day of the traction trial. We couldn't get a good position and the brace was choking me, as well as exacerbating my tethered cord symptoms. It wasn't the nicest way for my mum to spend her birthday!

This year, we were able to go out to an arboretum and look in awe at the gorgeous colours of the Autumn leaves. Such a stark contrast to last year, when my sensory sensitivity was so bad that any such activity would be impossible. We joked as I was driving over bumps yesterday that a year ago those bumps would've caused a paralysis/apnoea episode. I haven't had a single one since surgery.

On the 7th I had the second day of traction, we got it right, and I wrote in my notes 'I am myself again'. I don't think I've ever been so happy in my life as how I felt when the traction freed up my brainstem, veins etc and I felt myself come back to life. Now how I felt in that brace is how I get to feel every day. Of course, life is still very hard and everyday life doesn't compare to that initial high, but the symptom relief is pretty damn close .

On the 8th my surgeon told me to come back in 3 weeks for the first of the two operations. What a hectic three weeks that was! But tomorrow, instead of facing the most difficult decision of my life (how far to fuse) and a mad rush to pack and prepare, I'm starting my week of events at the literature festival.

My mental health has been very bad recently, and I'm overwhelmed by how far I have left to go on this road of surgical recovery and rehab. I think I had hoped I could get all of the rehab under my belt this year and resume 'normal' life next year. But one of the many lessons from the pandemic is that you can't quickly return to normal life after something life-changing has happened, and nor should you.

The surgical recovery itself is a years-long process, and then there's the attempt to undo 10 years of progression of ME severity (insofar as is possible), reverse deconditioning from years in bed unable to do any exercise, and get through the mammoth backlog of paperwork, tasks etc that built up while I was too ill to function.

That's a huge undertaking and I'm overwhelmed at the scale and timeline. My rehab routine, medical appointments etc take up most of my time still, and I'm still very unwell compared to how I've been in the past, let alone compared to a healthy person.

But so many symptoms are gone or improved, my quality of life and functionality are infinitely higher, and I'm heading in the right direction. It's an incredibly difficult journey, but one that I'm so grateful to be able to make, thanks to the generous donations of so many kind people, and the support of the charity. I am doing as much as I can to address remaining symptoms, support my overall health, and maximise the benefits of surgery.

I hope one day to be able to do things that make you all proud, and show the impact of your donations. Until then, I will keep putting one foot in front of the other and trekking up the mountain of recovery. It's a steep climb, but let's enjoy the view along the way.

I'll update properly at the 1 year anniversary (next month!). Until then, I hope you enjoy these photos from our trip.

Love and gratitude,

Jessica 💗💎

Image descriptions: a series of photos of trees, with leaves ranging from bright red, to almost neon yellow, to an ombre effect with red into orange into green. A short video of yellow and green leaves gently fluttering in the wind. In one photo a blonde woman (Jessica's mum) stands in front of a tree smiling.

24/05/2022

Today is the 6-month anniversary of my skull to T2 spinal fusion. My life has changed a lot since the surgery and so I’d like to do an update for the people who made those changes possible. I already covered a lot in the last post, so just a brief one this time.

Firstly, I have really positive news! Last week we travelled back to Barcelona for a post-op CT scan and a consultation with my surgeon. As I mentioned in my last post, at 6 months post-op we are looking to check that the hardware is okay, that the bone graft has not been resorbed by my body, and that my body has started building new bone using that graft as a foundation.

Well, it turns out ‘started’ is not the right word, because at 6-months post-op I am nearly fully-fused! My surgeon kept having to double-check that my surgery was in November because I am further along than what he’d expect at this stage.

There a large chunks of bone at C1, C2, and T2, which are the really key areas, with lots of sections of growth in between, and a lot of what my surgeon described as ‘bridges’ between the old bone and the newly-grown bone. He was able to show me this on the scan and it is fascinating to see. I have labelled a slice of my CT below so you can see it for yourself!

This is fantastic news and better than I could have hoped for. I have been so concerned about my body swallowing the bone graft after people so kindly donated their bones to medicine to help people like me. But thankfully my body took that gift and made the most out of it! I am so grateful for the donors whose bone enabled me to grow a whole new neck, and I hope the life I go on to live will make them proud. I can now rest easy knowing that my hardware is okay and I am well on my way to a very solid bone fusion.

My surgeon was really pleased with my progress. He said that if he saw me on the street he would not recognise me or know that he had operated on me because I am a completely different person. Other consultants have echoed this sentiment recently. There is no way of telling whether I will continue to improve or plateau at this level, and currently I am still dealing with a setback due to issues caused by my EDS and ME, so have lost a bit of the improvement in some symptoms. But despite this, I am still so much better than I was before surgery, which I think speaks to how life-changing it has been.

Like I have said before, I will always be ill and disabled, and I still need a lot of support from my PA and family, use a wheelchair etc. But each of the surgeries has improved my quality of life and functionality, which was my goal. I am now able to leave the house every day (with support), am spending time in nature, reconnecting with friends, am more mobile and active, am awake most of the day and upright a lot of it, have less pain, and am beginning to see signs of getting back to a full and balanced life.

I am immensely grateful to everyone who has enabled this through donating, sharing, and fundraising, and to the charity for supporting us throughout. I will continue to focus on my rehabilitation as there is still a long way to go with the surgical recovery, and a lot that can be done to improve my overall health and my underlying conditions to maximise the benefits of surgery. Some point this year I hope to do a series of more in-depth thank yous for people who went above and beyond to help me. But for now, I will leave you with this photo of me in Park Guell (without headphones!), something that would not have been possible before surgery!

03/05/2022

The last time I posted on this page I said that I was going to take a break to focus on my recovery, and I’ve been doing just that. But today marks six months since my first surgery, and I thought it was about time to do a brief update on my progress since then.

Thankfully I have managed to maintain the improvements from my tethered cord surgery, despite a few blips wherein symptoms flared. I am at very high risk of re-tethering due to the abnormality that they found in my spinal canal, and this will be a risk that will continue for the rest of my life. But to have made it six months without re-tethering is a cause for celebration! 🎉

Recovering from the fusion surgery has been a lot more tumultuous and challenging. Any cranio-cervical fusion is a major surgery with a long and difficult recovery, but being fused from skull to T2 is even bigger and consequently all of my energy these past 5.5 months has gone into rest and rehabilitation. I can’t quite believe that I’m 3 weeks away from my 6 month anniversary, as it is all such a blur and that time has flown by. In some ways I feel like I have done nothing, but I have been very busy recovering and healing, and that takes time.

After my initial dramatic improvement, as the swelling and inflammation kicked in and I tapered off meds, some symptoms came back, and I was dealing with very low energy. The amount of physiotherapy I have had to do was also really exacerbating my ME. There were times when I felt like I was worse off. I have also had to contend with the grief about the loss of movement in my head and neck, which while not as bad as I had imagined, has obviously altered my life massively and made me more disabled in some ways.

However, throughout that period there were some clear and consistent improvements, which have only built as my recovery has progressed and the swelling and inflammation have calmed down. My more serious and worrying symptoms, such as central apnoea and intermittent paralysis, have been completely gone since surgery. Many other symptoms are improved, ranging from a mild improvement, to near cessation. In particular I have noticed dramatic improvements in noise sensitivity, light sensitivity, and most of my cognitive symptoms.

The latter have improved to the extent that I have read 70 books so far this year, which is more than I read in the past 3 years combined! Anyone who knows me will know how life-changing this has been for me, as my cognitive symptoms are the ones that affect my quality of life the most. Even through January and February when I could barely manage more than a basic rehab routine, I was reading voraciously.

I spent the first few months after surgery building up a rehabilitation routine and sticking to it diligently; even when I felt absolutely awful and was beginning to lose hope of improvement, I kept plodding along, putting one foot in front of the other, and taking it day by day.

By mid-March I was starting to feel really good and felt like I had turned a corner in my recovery. Then we had to deal with a covid scare and I have had some issues with my underlying conditions which I feel have set my recovery back quite a bit. But I remain hopeful that I can return to the path of improvement. I don’t think I have plateaued yet, and I sincerely hope that the best is yet to come.

But as it stands, I am significantly better off than I was before the surgeries, in terms of functionality and quality of life. I am no longer bedbound or housebound. I am able to be awake most of the day. I am consistently leaving the house (with support) most days. I am in less pain. My mental health is much better and more stable because I am suffering so much less.

There is still a long way to go. The recovery from fusion is 1-2 years, and I am just shy of six months. I hope to build on my improvements and eventually regain a full and active life where I can contribute to my local community and society at large. My life will never be normal and there are some things that just won’t ever be possible for me, but I would love to be able to resume my voluntary work, hobbies, and social life.

In two weeks we fly back to Barcelona for my six month check-up. I will have a CT scan to check for bone growth, and then a consult with my surgeon to assess my recovery and progress, and discuss the scan. This scan is very important, as the hardware acts as a kind of ‘scaffolding’ upon which the bone fusion should hopefully grow. However, there is a risk that the implanted bone graft may have been resorbed by my body, which would mean an incomplete fusion. There is a higher risk of this with my conditions. My surgeon did everything he could in the surgery to ensure optimum bone growth, and I have done everything in my power since to the same end. Fingers crossed we will see some bone on that scan!🤞

I realise that I said I would keep it brief and have already written a lot, so just a final note to say thank you to everyone who made this possible. I intend to do a series of in-depth thank yous on here at some point, but for now: thank you from the bottom of my heart to everyone who donated, ran a fundraising event, spread the word, and offered support. Particular thanks to the charity Just 4 Children for their continued support. You have changed my life immensely, and for the first time in a very long time I have hope the future, and my life feels bearable and worth living. I am forever grateful.

With love and appreciation,

Jessica 💗

Photo description: Jessia smiling at the camera, wearing pink lipstick.

03/12/2021

I've been discharged from hospital 🎉🎉🎉

It was an absolutely wild ride with some of the hardest moments of my life, but also some glimmers of hope for the future, and moments of feeling alive after years of living death. Feels so amazing to be back at the apartment that has become our second home, and now I'm ready to start the long slog of recovery and rehabilitation, to hopefully have a life on the other side. I am so grateful to each and every one of you who made these life-changing procedures possible. It's far too early to say about the second surgery, but the difference I am noticing 4 weeks out from the first is very positive. And that wasn't even the one that was supposed to make the big difference! So I am cautiously optimistic about the outcome of the second. Technically all went well, my surgeons are overjoyed with my recovery and mindset, and I made the right decision to go for the longer fusion. I was an absolute mess in there apparently! Time will tell what difference it makes to my symptoms and quality of life. But for now, we have addressed an issue, and while it is not a 'fix' and doesn't mean there can't be further problems down the line (as is unfortunately all too common with EDS), that's something to celebrate.

I don't know what the future holds, but I see one now. I do know my life will always be very difficult and that I will never be 'normal' or healthy. I am disabled and chronically ill, and that will bring with it numerous challenges that may at times feel insurmountable. But I have made it this far, despite the odds. Despite how many times I nearly gave in. At least now I have a chance of a life outside of my blacked-out bedroom. A chance to stand in the sunshine and feel what it means to be alive. Thank you for that gift. Whatever comes next, I'm sure it will be interesting! I think I've got enough content for a 5 volume memoir at this point. I hope you'll all stick around for whatever this wild journey brings us next. I couldn't have done this without you. In the new year I hope to do some more in-depth thank yous, but for now I need to focus on resting and healing, so probably won't update for a while.

With love and eternal gratitude,

Jessica 💗

Image description: Jessica sat in the sun outside a grand looking hospital flanked by palm trees. She has two thumbs up.

01/12/2021

Today I am one week post-op fusion and four weeks post-op tethered cord release 🎉🎉🎉

Thank you so much for everyone who enabled this to happen. We will do much more in-depth thank yous at some point, along with updates, but just wanted to let everyone know that surgery was a success and that I am safely through the other side. Sorry for not updating sooner; it has been a tumtultous week as I'm sure you can all imagine. But I am very grateful to be on this side of it, and for all those who made that possible 💗

23/11/2021

I have been admitted to hospital and my second surgery is set to go ahead tomorrow, Wednesday the 24th of November. I will be transferred from the OR to the ICU where I will stay for two days before returning to the ward. The first week, but especially those days in the ICU, are likely to be incredibly hard so I would appreciate any good vibes/prayers/well wishes being sent my way in that time. We will update when we can, but it might be quite a while. Thank you so much to everyone who has got us to this stage. See you on the other side!

Image description: Jessica in a hospital bed with sunglasses and headphones on. There is a pillow with her cat's face on it next to her.

07/11/2021

72 hours post-op and absolutely thriving. Tonight will be hard as I'm off my drip and down to just oral pain meds now, but I know that I have what it takes as I've handled everything thrown at me so far. Couldn't have dreamt of such a good outcome. Of course there's been issues here and there, and it looks like some of the damage is definitely permanent, but both of those things were to be expected so I'm just trying to feel grateful for the wins and the improvements, as there are many.

Unfortunately some of my neck-related symptoms are much worse. We'll retry the traction device to be doubly sure I'm going to get benefit from the fusion, and then fingers crossed we get the OR time/space and the second operation can go ahead at the end of the month. It is going to be infinitely harder but the potential gains are greater. I'm equally excited and nervous for what the next few weeks hold. Thank you to everyone who got me here. I promise I will keep fighting to make it all worthwhile.

Image description: Jessica sat up in a hospital bed in giraffe print pyjamas, smiling at the camera.

31/10/2021

On Thursday we arrived safely in Barcelona and have settled into our apartment where we will live for the next several weeks while I undergo the two surgeries, and begin the difficult and slow process of surgical recovery.

My first surgery is scheduled for Wednesday the 3rd of November in the afternoon, and is a tethered cord release (section filum terminale). The aim of this surgery is to stop further damage to the nerves that control my bladder, legs etc, by releasing the filum from where it is inappropriately 'tethered', and thereby causing tension and strain on my spinal cord. Because I am having this surgery a long time after the symptom onset, I am unlikely to see improvement in the symptoms. It is more about stopping them getting worse. My urodynamic study showed that my bladder is not functioning properly, and this would continue to get worse without intervention, as it has already done over the years so far. So the goal is stop progression, and any improvement is a nice bonus, but not to be expected.

When we were out here at the beginning of the month, I spent several days in a form of non-invasive traction which emulated what the fusion surgery will do. While many of my symptoms were massively improved, which shows the fusion surgery should help, my tethered cord symptoms were significantly worse. This showed us that we had to do the tethered cord surgery first, as otherwise the fusion would do too much damage to my filum and nerves. I will then have the fusion surgery second, and it is tentatively scheduled for the end of November, pending OR approval. Please keep your fingers crossed that we get a confirmed date!

While a standard cranio-cervical fusion is skull to C2, unfortunately my most recent scans show my instability has spread much further down, despite my hard work in physio, so I have opted to fuse to T2 in order to stabilise the entire neck and not put more pressure on already problematic vertebrae. This is a much bigger surgery with more limitations in my movement, and the recovery is going to be even harder. But this is also the surgery most likely to bring me long-term improvement, after the initial post-op period where I may feel worse for a while.

Which leads me to say, I want to make people aware that these surgeries are brutal, with a very long recovery and rehabilitation process. They are not a quick fix, and they will not resolve my underlying conditions (such as ME and hEDS), but with time and effort on my part, I will hopefully regain some quality of life, where there is currently very little. Please bear with us in the coming weeks and months as we might not be able to update very often, as this is going to be a very difficult process for all of us. But for the first time in 10 years, I finally see a light at the end of the tunnel. Not because I will be cured, recovered, or healthy. But because there is now a chance at stopping the decade-long decline in function and quality of life that I have experienced. Without these surgeries, these particular symptoms would continue to get worse, and while some further decline is somewhat inevitable due to the degenerative nature of EDS, hopefully we can slow the speed of that decline, and relieve the overall strain on my body being caused by these secondary conditions.

It's also important to understand that surgeries of this nature can seemingly start a 'domino effect' of subsequent issues, but that the surgeries have not caused those issues, just that they have highlighted an already existing pathway. As an EDS patient, these will not be the last surgeries I have in my lifetime, but I hope that for now they will give me a level of functionality and quality of life that I have not had for years. I am 24 and have a whole life ahead of me, which in my current state feels unbearable. These surgeries give me hope for the years to come, and give me a chance of having many more 'good' years, whereas currently they are all behind me.

When we set-up this campaign, we chose the slightly cheesy name 'Team Diamond: Jessica's Fight For A Life', because we knew that this journey would be a group effort, and the fight of a lifetime. Your help in donating, sharing, and fundraising has got us to this stage. Now it is my turn to fight like hell to make your effort worthwhile. I promise I will do that. Thank you so much to everyone who has joined 'Team Diamond' by helping in whatever way you could. We will do a much larger thank you post at a later date, but for now, please know that we are forever grateful.

With love and gratitude,

Jessica and the rest of 'Team Diamond'

PS: Thank you to our wonderful friends (you know who you are) for these gorgeous flowers that are brightening up our apartment.

Image description: a bright pink orchid

Team Diamond: Jessica's Fight For A Life

07/11/2023

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07/10/2022

24/05/2022

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