A video I released only tells part of the story

UPDATED ON THURSDAY 14 MARCH WITH YET ANOTHER DIAGNOSIS. SEE THE END OF THE ARTICLE.

SOME PEOPLE MAY FIND THE FOOTAGE BELOW UPSETTING

This is the second part of the story of my girlfriend Nicola Jeffery’s medical journey, and why I’ve stopped writing for The Canary because of it. You can read part one here, which I suggest you should:

https://mrtopple.com/2019/03/07/the-real-reason-ive-stopped-writing-for-the-canary-watch-this-video/

It tells Nic’s story up to this point: childhood systems, her illnesses disbelieved and dismissed by the system to the extent she was sectioned, then a breakthrough. But the journey was far from over. It had actually only just begun…

Continued:

Living off adrenaline

By this point, I think Nic was essentially running of adrenaline due to the extreme stress of her everyday life. She was in constant battles with the education system, as her son was displaying similar symptoms to her as a child. She was living in social housing, with all the problems that presents. And on top of that she had to fight tooth-and-nail with the DWP for her entitlements.

But the real stress which led to all of the above, and what so many medical professionals and other chronically ill and disabled people don’t understand, is the constant threat of social services hanging over council estate, working class single mums. Nic never knew when a knock at the door might come. There was the constant fear of her son being taken away due to her ill-health. So, she fought on until I turned up in her life.

The following section is not to blow my own trumpet. It is merely a statement of fact.

“A change in circumstance”

Nic had little support prior to our relationship apart from her mother. So, with someone now living with her who had a full time job and was used to juggling hundreds of balls in the air, she could finally be as ill as she really was.

The adrenaline disappeared. And so to did the last sparks of health in Nic. We’ve been together two-and-a-half years, now. And for the last 18 months she has essentially been bed-bound for most days of the week. She has about one day where she can actually do what the system would consider ‘normal’ things, like housework, or shopping, or going out. Not all of those things in one day, mind. Just one of those a week. Then, due to the exertion, the rest of the time is spent sedentary.

But what’s also changed since we’ve been together is her diagnoses.

Now we know…

We pushed for the EDS diagnosis, and got it. Initially it was classed as hypermobile EDS (hEDS). This then changed to a Hypermobility Spectrum Disorder (HSD), although the consultant said it’s either one or the other.

Common symptoms include (but aren’t limited to):

  • Chronic fatigue.
  • Easy bruising and scarring.
  • Constipation/diarrhoea.
  • Bacterial infections in the stomach and gut.
  • Subluxations.
  • Joint pain.
  • Vitamin and mineral deficiencies.
  • Cognitive impairment.
  • Lack of spatial awareness.
  • Visual impairments.

She also now has a diagnosis of Myalgic Encephalomyelitis (ME). This debilitating, systemic, neuroimmune disease is characterised by:

  • Post Exertional Malaise, brought on by either physical or mental activities, or both.
  • Flu-like symptoms.
  • All-over pain.
  • Sleep disturbance/problems.
  • Cognitive impairments.
  • Impairments of the body’s autonomic systems, such as nervous, digestive and endocrine.
  • Hypersensitivity.

She also has a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) – issues with the regulation of blood pressure and cardio function. Nic has deformities in her left foot. She still has the seizures, Polycystic Ovary syndrome (which has been left untreated) and the Temporomandibular Joint Dysfunction. She also has the presence of the Epstein Barr Virus (EBV) and the Cytomegalovirus (CMV). If you’re an ME boffin, I can feel your ears pricking up as I write that last part…

We have recently just got a diagnosis of Atlantoaxial Instability (AAI). This is in some respects the most serious. In layman’s terms, her top two vertebrae do not function properly. This causes the surrounding joints to partially dislocate every time she moves her head from left to right. It also causes complex manifestations neurologically and autonomically, possibly affecting nearly every system in her body. It is potentially progressive, with the most extreme cases leading to paraplegia or even death by self-decapitation of the spinal cord.

Yup. All of that. Which she was told for years was “all in her head” or Fibromyalgia. Just think on that for a minute.

Cock and balls syndrome

But the journey to this point has been bizarre to say the least.

Suddenly, medical professionals are taking notice. For a decade she was ignored or not listened to. Yet her symptoms have been consistent. Then suddenly I come along, and within two years she has five new diagnoses and has seen (on the NHS) some of the top neurogastroenterologists, haematologists and dermatologists in the UK. Something to do with my lack of colloquial accent, use of big words, passive-aggressive demeanour, verified Twitter account and the cock and balls between my legs? Make your own minds up. More on this in another article.

Current positions

So, where are we at?

Well, none of the past two years to get to this point have been easy. We have now exhausted the limitations of the NHS. Nic has tried the treatment options it offers for EDS and ME, and all made her symptoms worse. AAI is not recognised on the NHS, so no treatment options are available.

I have been taking her to private consultants since last year. Not least because the NHS is too slow, but also because of the severe lack of knowledge and understanding within our health service of all of Nic’s diseases and illnesses. So far, just to get testing and diagnoses, it’s cost £2,500. She hasn’t begun any treatment yet apart from a change in diet and an intensive regime of vitamin and mineral supplements.

Oh, and a neck brace for fear one of her vertebrae may chop her own head off unexpectedly:

Nicola.jpg

What’s more, this journey has exposed the systemic failings of the NHS for chronically ill people. Again, a separate article on that. But we’ve also gone down a rabbit hole when it comes to all these illnesses.

hEDS/HSD, ME, POTS and AAI are all subject to intense debate. Because there is no agreement on the causes of any of them, they all fall under ‘chicken and egg’ discussions and all present in often confusing manners. All are subject to the notorious PACE trial, either directly or indirectly (read my work on that here). They are all often cluster syndromes. But ultimately we believe all are severely under or misdiagnosed. This is a rabbit hole I’ll be writing on at a later date.

Looking to the future

So, for the future?

The NHS is giving her an insole for her foot deformation. Hurrah!

The hEDS/HSD is pretty untreatable. And yes, she’s tried everything the NHS recommends.

We are currently seeing two private doctors for the ME, with the approval of Nic’s main NHS neurogastroenterologist. Again, she’s tried everything on the NHS… blah, blah, blah.

The POTS, in my opinion, is a symptom of the AAI. And again, there is little the NHS can do. Although we are exploring treatment options.

The seizures are symptoms of the AAI as well, in my opinion. If you want the technical jargon, in Nic’s case I think it causes pre-syncopes and syncopes which present as tonic clonic seizures (not true seizures).

The Temporomandibular Joint Dysfunction is a symptom of the AAI… Yes, you get the idea. Many roads lead to AAI we think. But again, more on that later.

For the AAI, we’re under a private clinic in Barcelona. If she wants an operation at the latter to correct this, that’s €60,000 please.

So, in other words – the NHS is done with, for us. We have no option left but to go private.

Enough is enough

I came to this decision because I refuse to let Nic’s life be wasted.

She is too intelligent, perceptive, smart, funny, insightful and compassionate to spend the rest of her life in bed, on the sofa or having one day a week where she can do something. She has a son that needs her. And Nic is a force of nature who I believe could do great things and help change the world.

She needs the opportunity to realise her potential. So, that’s what I’m going to give her. But as I previously wrote, to do this I need to focus on her and little else.

Nic has gone through enough already in her 33 years. She now needs full time support, not just with day-to-day living like taking her medicine regime, cooking meals and cleaning the house (all of which she is unable to do, now). But she needs the support of someone to take her through the next stages of her recovery. That person is me.

I’ve been doing all this while also writing 15 articles a week, recording and editing a podcast, doing a weekly YouTube show and other TV and written work. But it got to the point where it was becoming apparent something had to give.

I love Nic with all my heart. I’d walk through fire to protect her. So the choice was easy. Changing the world via journalism can wait. Because if we can get her better, then we can start to change the world together.

I often joke with people that if Nic is like she is now while so unwell, she’s going to be scary when she’s in better health. Because I do believe we can get her better.

So, that’s Nic’s story and a bit of mine. But there is still lots more to come. If you can see yourself in her journey then feel free to get in touch. Thanks for reading.

UPDATE, THURSDAY 14 MARCH:

Yes, Nicola now has yet another diagnosis. It’s Craniocervical Instability (CCI). This is in many respects similar to the AAI. But it means that the whole of the top of her neck is unstable and the implications for the rest of her body more complex.

We were startled to find this out (via a neurosurgeon in Barcelona, whose diagnosis was seconded by the professor who analysed the Upright MRI in London). But it actually makes sense. Most people with AAI also have CCI.

That’s of little comfort to Nic, whose mind is currently blown by all of this.

Most of Nic’s medical treatment is now private. If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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6 comments

  1. A6er · March 8

    Reblogged this on Britain Isn't Eating! and commented:
    So sorry you are both going through this.

    Stay strong mate

    Like

  2. Mark Catlin · March 9

    Reblogged this on Declaration Of Opinion.

    Like

  3. Celandine · March 15

    I think it’s a major ethical problem that the NHS picks and chooses who it will help. If you spin the roulette wheel of disease and come up with the “wrong” one you will not get the help you need no matter how debilitating the illness. I’ve known several families of children who were flown to the US for specialist radiotherapy for cancer. This included all travel and accommodation for the family and treatment costs (in the US, so it wouldn’t have been cheap). I don’t begrudge them this in any way. These are kids with cancer and they needed help. It just shocks me that you can have that level of treatment on the one hand and absolutely nothing for another patient who is bed bound, in daily pain and at risk of death due to their condition. ME patients like Merryn Crofts and Sophia Mirza died from ME and its untreated complications. This is utterly unethical.

    Nic’s life has been destroyed by her illnesses. I have had to research relentlessly and at the expense of my own work (I’m also a writer) to get my daughter who has ME, POTS, all kinds of autonomic symptoms, and mild hypermobility the diagnoses and treatments she needs. As there is so little legitimate help on offer–we turned down the ridiculous offer of OT from the ridiculous Medically Unexplained Symptoms Clinic–I’ve been put in the position of devising my own treatment plan for her using herbals, manual therapies and some traditional medicine from her POTS consultant (the only NHS medic who has been of any help thus far). I’m not a doctor! I am, however, educated and a dogged and determined advocate for my daughter, as you are for Nic. What happens to all the patients who don’t have someone like us in their corners? You’ve been able to scrape together the money for private treatment. What happens to the thousands who don’t have those kinds of resources? I think about those people every day and am filled with rage and resentment on their behalf.

    Like

  4. Pingback: The reality of living with chronic illnesses under our arrogant NHS | Mr Topple
  5. Kiahuna · March 16

    I commend you sir, for your incredible support of Ms. Nicola. She is lucky to have you as an advocate. I don’t believe the NHS is necessarily to blame, as we are being ignored all over the world. The medical community in general does not do well with any maladies that are not “obvious” (like broken limbs) or that require much effort to find the cause. Best to you and Nicola in your battle! Aloha.

    Like

  6. Tracy · 17 Days Ago

    There is a woman in Manchester with this and she is being treated by the Mayo clinic, I believe. Is this something you could look into? Expensive, though 😞 https://www.manchestereveningnews.co.uk/news/greater-manchester-news/mums-life-saving-neck-operation-15736608

    Like

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