Happy Easter. Unless you’re living with ME.

Chocolate eggs? No. A roast dinner with the whole family around the table? No. Binge-watching movies on the sofa? No. Going out drinking and partying? No.

Happy Easter for many of you, I’m sure. But not if you’re living with an illness that’s ‘all in your head’.

Myalgic encephalomyelitis

As I previously wrote for The Canary:

Myalgic encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. It affects an estimated 17 million people worldwide and around 250,000 people in the UK. While symptoms vary for every person, people living with it often experience:

  • A worsening of symptoms brought on by physical activities, mental activities, or both. Often referred to as post-exertional malaise.
  • 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.

But ME has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelievedstigmatised, given incorrect treatment, or told it’s ‘all in their heads’.

You can read my full body of work for The Canary on ME here.

Nicola’s story

As I’ve previously written, my girlfriend Nicola Jeffery lives with ME, along with a host (now ten in total, as it happens) of other conditions, diseases and illnesses:

She is also now under clinical investigation for:

• Hypothyroidism.
Sheehan’s Syndrome [pdf].
Hypochlorhydria.
Chronotropic Intolerance.

I’ve written extensively about her story to this point. You can read that work here.

So, what does our Easter look like? Probably a world away from many people’s. But also very similar to Easter for millions of chronically ill people.

Just another week in the Jeffery-Topple household

Around 5am on Wednesday 17 April Nic started vomiting. This was followed by diarrhoea. This continued until around 2:30am on Thursday. For the rest of the day she fell in and out of sleep. It’s now Friday 19 April at 1:30pm and she’s eating something for the first time since Tuesday. But only half managed it and has gone back to bed.

Her blood pressure fell to 78/33 at one point, which is worryingly low. During this time she also had three suspected focal seizures. I say “suspected” because no medical professional is able to explain what they are, except they present like them. No tonic clonic this time, though. So we’re grateful for small mercies.

“Why didn’t you call an ambulance?” I hear you scream down your devices.

For numerous reasons. Not least because this bout of unexplained sickness has happened countless times before. But also because we know that a hospital would do little that we weren’t doing at home. In fact, they may in the long term have made the situation worse. If you’re wondering why I think that, check out the reasons why we’ve switched to a paleo-keto diet. All will be revealed. Plus the likelihood of mental health being brought into the equation. Our glorious NHS, hey…?

We’re now weaning her back onto food, and will start reintroducing the 17 different tablets/oral/intravenous solutions she’s on a day, in time.

So, Easter has gone out of the window for us. But for Nic, and millions of people like her, it was never actually in the window in the first place.

Sunday roast? No chance.

If you’re non-disabled, you probably relish the thought of a huge Sunday roast with all the family. If you’re living with ME this could be your worst nightmare.

Maybe explain to people why you can’t eat half the food on your plate due to your socially damaging, highly restrictive diet.

Try eating all that when you have impaired digestive transit. Or if you’re struggling to swallow. Maybe if you have hypersensitivity to taste.

Also, try eating all of that while numerous people talk around a table and you’re hypersensitive to sound. Then try it when your cognitive function is so impaired you can barely follow one person in conversation, let alone a whole group of people.

This, of course, all presumes your family hasn’t effectively disowned you because they think your illness is ‘all in your head’ and you just need to ‘pull yourself together’.

Enjoy your lamb.

Easter eggs? Jokes.

If you’re non-disabled, the best part of Easter may be chocolate eggs. If you’re living with ME, they could be torturous for you.

Histamine intolerance may mean you can’t even eat chocolate. Mast cell activation syndrome could mean it will trigger an allergic reaction in you. And if you’re on a socially damaging, highly restrictive diet, we’re back to the sugar problem again.

Meanwhile, you have to have the strength in your hands to remove the foil wrapping and then break the chocolate in the first place.

All that of course assumes that you even have the money to buy Easter eggs. Try getting the Department for Work and Pensions (DWP) to give you benefits when your condition is still considered part-psychological by much of the medical community.

Hope you have a good sugar rush.

Binge TV? Out of the question.

If you’re non-disabled, you many plot yourself on the sofa and watch endless movies for much of the weekend. If you’re living with ME, this could be near-impossible.

Try being in any other position except lying down for a long period of time when every part of your body aches, you feel like your walking under water and you have a constant fog of light headedness.

Maybe try and sustain your concentration for more than just the news when your cognitive function is so impaired you can’t remember what the weather is going to be like from one day to the next.

Then have a go at enjoying a film when the slightest laugh, scream or groan from people feels like the noise of a high speed train right next to you. And throw in the noise of the television and the strain on your eyes for good measure.

I do hope you have fun watching your Hollywood brain-bleach.

Get ready to party? Not here.

If you’re non-disabled, you may go out over Easter to the pub or a club. Or, like me and Nic were, put on the guest list for a concert by a rapper like Lowkey. If you’re non-disabled, this would be impossible.

Attempt to get showered and dressed when your body is so weak that even going to the toilet exhausts you for hours afterwards. Try putting your make up on when your hand to eye coordination is screwed. Not that you’d be able to sustain the holding up of your arms for that long, anyway.

Try drinking alcohol when you know it will leave you even more bed-bound than you were already. Oh, and try affording alcohol under the DWP.

Maybe you’d like to go to a venue where there are going to be hundreds or thousands of other people, exposing you to their germs, which could make you seriously ill. Hundreds or thousands of people all ready to brush past you or bump into you, but in doing so leaving you in agony.

Or try dealing with the same issues you had eating your Sunday roast with a small group of people all in intense conversation – but multiply it by hundreds and throw in extremely loud music for good measure.

Oh, and try all of this when you can’t use public transport due to the infection risk, the danger of physical damage and the lack of accessibility for chronically, invisibly ill people. And if you want to try and get a taxi to and from where you’re going to, we’re back to the DWP issue again.

I hope your hangover is worth it.

Happy Easter.

Ultimately, try doing all of these things when you constantly feel like you have the flu, never have any energy nor have the cognitive function to decide whether to even do them or not.

Then try doing them when much of the medical profession and state systems disbelieve you, leaving you with no support except other people in exactly the same boat. Even friends and family will only tolerate your inconsistency, the consuming nature of your disease and your inability to do what most people consider ‘normal’ for so long. Gradually, knocks don’t appear at the door. The phone slowly stops ringing. Messages are left unreplied to.

And ultimately, trying doing all of this with the overwhelming feelings of guilt your disease leaves you with.

So, no. There is no Happy Easter for millions of chronically ill, disabled and sick people. There’s just another long weekend, spent fighting not only their own bodies but also a system and society that’s not designed for them to fit in to. Let alone live in.

I’ve given up writing full time to support Nic. Most of her medical treatment now has to be private; a challenge in itself with no income.

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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The reality of living with chronic illnesses under our arrogant NHS

If you’ve ever broken a bone, or god forbid had cancer, then I’m fairly sure your experience of the NHS has, on the whole, been positive. Sadly for millions of chronically ill and disabled people, our out-of-date, arrogant factory farm health service is probably making them even sicker.

How much going on…???

My girlfriend Nicola Jeffery is quite the medical thing. Disabled, chronically ill with multi-systemic diseases and illnesses, she ain’t that well. But to look at her, you’d probably think there was nothing wrong. That’s what it’s like to have ‘Invisible Illnesses‘.

Here’s my helpful attempt at collating all her symptoms through the medium of art. I like to call this work part of my “For Fuck’s Sake Period” stylistic phase of painting:

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You can read Nic’s journey so far here and here. But in short she’s currently living with:

Out of all these, POTS, Polycystic Ovary Sydrome and TMJ were diagnosed on the NHS. The two viruses were found by accident in an NHS bone marrow trephine biopsy.

The HSD, the ME, the CCI and the AAI were diagnosed privately. We did this for the HSD because the waiting list for the NHS was two years.

For the ME, Nic is having groundbreaking tests which aim to identify the viruses that are active in her body – the ones the NHS would say are dormant and benign. If you know about ME, you’ll know where we’re going with this. If you don’t, you may like to read this.

Neither CCI or AAI are even recognised on the NHS, and the former was diagnosed by a doctor in Barcelona.

Two years of change

All of these diagnoses have happened in the past two years. Before that, Nic was told it was ‘all in her head’, sectioned because of this under the Mental Health Act (and discharged with no mental health diagnosis), then told she had Fibromyalgia, given antidepressants, told to think happy thoughts with some Cognitive Behavioural Therapy (CBT) and told to pull herself together with some Graded Exercise Therapy (GET, pdf).

What changed? Read about that here.

But ultimately, what’s held Nic back for so many years is sadly the NHS.

Because, in terms of people with multiple chronic illnesses, the NHS is simply not fit for the 21st century. In fact, I’d go so far as to say that for many it is actually detrimental to their health.

The National Health Service

These are Nic’s medical history folders. The middle and right ones are for the NHS:

DSC_0133 (1)

This is the problem. The NHS, which I fully believe should be free for everyone (not free at the point of use, completely free without contribution) is a wonder for cancer patients. It’s a miracle for trauma injuries. Our health service is a blessing if you have leukaemia. But it is broken for people living with complex, multi disciplinary diseases and illnesses.

The NHS fails Nic and so many people like her.

Boxing you off

Medicine is extremely compartmentalised, partly due to an increasingly out-dated view of health, also due to the influence of pharmaceutical companies and moreover due to the increasing involvement of private firms in public health.

It’s sadly also due to medical professionals who are more interested in their own paychecks, and mortgages, than what is best for the patients. Interestingly, we find the lower down the NHS food chain you go and the more ‘everyday’ consultants/bods you see, the worse the self-serving attitude and disinterest gets. The health service’s top professors and consultants in our experience have been the most understanding, honest and helpful.

As Nic always says of the compartmental nature of the NHS:

I’m just keeping people in jobs…

One thing leads to another…

While this currently works for ‘mainstream’ illnesses like cancer, it is beyond ineffective for people living with diseases like ME and Lyme and illnesses like EDS, CCI and AAI. Because these conditions affect every part of the body, the response from the medical profession should be an overarching, holistic one. One professional or centre should deal with everything. Because, for example, the intersections between the autonomic and digestive systems would then be dealt with together – like how AAI can cause colonic motility dysfunction. That’s NeuroRheumaGastrology. Google it. It doesn’t exist.

Great Ormond Street, for example, deals with hypermobility. But when the NHS doesn’t even recognise conditions like CCI and AAI then it is effectively like putting a sticking plaster on a broken leg. You’d think alarms bells would ring when research shows [pdf, p3] nearly 50% of EDS patients report headaches. But no, CCI and AAI are outside the realms of the NHS.

An admission

Admittedly, the NHS ties consultants hands somewhat. As one of the most respected doctors within the EDS and chronic illness field of research told us:

The NHS is like a circle. There’s a white area in the middle where we always sit. Then there’s a grey ring outside of that, and a dark grey ring outside of that. We can sometimes go into the grey ring. But we’re never allowed to enter the dark grey area.

This conversation was in the context of diet and high intakes of vitamin and mineral supplements as partial treatment options for ME. The consultant categorically stated that outside of the NHS:

Our research is leading us towards this holistic approach, away from pharmaceuticals, physiotherapy and pain management. But I can only tell you what is in the white, and possibly grey, areas. That’s in the dark grey area.

He then had to revert back to his NHS script. It was one of the most telling conversations we’ve ever had with a NHS medical professional.

Fuck the GPs

‘Go to your GP!’ I hear you cry. ‘LOL!’ I yelp back at you.

GP’s are often ineffective. Our current one cried when Nic first broke the situation down to her. She cried because she felt overwhelmed by it all.

Try fucking living with it.

But as Nic describes, GPs are like car drivers. They take their test once, then it’s up to them if they keep up-to-date or not. Her GP, the most proactive one she’s had, doesn’t know anything about CCI, AAI, EDS, POTS or ME. We had to direct her to the information.

But still, as one person living with ME pointed out on Twitter, arrogant medical professionals put signs like this up:

Fuck you and the middle class, educated-beyond-your-intelligence horse you rode in on.

That may well have been my response if I’d seen that. There’s an arrogance and classism that pervades the medical profession, along with misogyny. Once again, Nic is a prime example.

Left for dead?

For a decade she was ignored or not listen to. Her symptoms have been consistent. Then suddenly I come along, and within two years she has six 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.

But still, despite all this, Nic has no conducive treatment plan. At this point I suggest you read my work on PACE trial. If you know about it, then contrary to popular belief it doesn’t just affect people living with ME. It has implications for EDS, Fibro, “MUS“, “MUPPETS” (yes, “MUPPETS”) and other groups of people. It is this, in part, which has made the NHS so toxic for Nic.

Sorry, sorry and sorry again

So, her and countless others like her are left with folders like the middle one in the picture. They’re crammed full of letters, diagnoses, repeated “sorry’s” (the most infuriating word for many chronically ill and disabled people) and metaphorical shrugging of shoulders from every single NHS department. Because there is not one that deals with her health as a whole. Therefore no one is able to see the answers to her apparent health conundrum.

As a leading immunologist and microbiologist recently told us:

[The NHS] may as well have ‘Big Toe Consultants’…

The implication he was making is that the NHS and its structure is so broken up it’s pretty much broken itself.

What they are also often left with is incorrect diagnoses like Fibromyalgia and huge amounts of chemical painkillers. Or medical professionals tell them mental health is playing a major part, and shove them on antidepressants. It is terrifying to think how many people could be living with ME, CCI or AAI, but are eking out their existence with ‘Fibro’ and heavy doses of meds.

Into the devil’s lair

Currently only private medicine offers anything near an effective approach for someone like Nic with her cupboard full of different diseases and illnesses.

But what it also offers is an understanding of chronic illness that stands in stark contrast to the arrogance of the NHS, with it’s sneering signs about “Google”:

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There’s a reason people with so-called ‘rare’ illnesses are called “Zebras“. It’s because medical professionals are taught to think that the simplest diagnosis is the correct one. That is, they’re taught that:

When you hear the sound of hooves, think horses, not zebras…

We see you, fellow Zebras. You’ve got this.

Interestingly, as a senior neurologist at one of the most respected NHS hospitals in the UK (who had never heard of CCI) told us:

Chronic illnesses are going to be the new cancer and heart disease.

Truth to power. They are. Yet the 21st century NHS, a 20th century factory farm production line where sick people go in one end and healthy people are supposed to come out the other (or have palliative or management care), is in no way equipped for this growing epidemic.

So, that’s why I’ve already spent £3,000 privately to get Nic to this point. Money I don’t really have but money I’ve found because I’ve had to. It’s already run out and we’re not even on treatments, yet – just diagnoses.

As rabid, far-left, borderline anarchist troublemakers, it has been a moral conundrum for us. But for me, it’s one that was quickly solved.

Nicola: changing the world

I cannot stand idly by and watch the NHS catastrophically fail the person I love, when I know the solutions are out there. Yes, I’m playing into the very system (corporatist capitalism) that I despise. But my love for Nic is too much to have allowed this to continue.

Moreover, by fixing her health to the best it can be, we are creating weapons in our armoury to continue to fight the system. The more evidence the chronic illness and disabled community have, the better equipped it will be to fight back. Nic’s medical journey is part of that.

I’m convinced she can help change the world. So, we’re going to get her well. But it will sadly be without the NHS.

Most of Nic’s medical treatment now has to be 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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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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The real reason I’ve stopped writing for The Canary? Watch this video.

SOME PEOPLE MAY FIND THE FOOTAGE IN THIS ARTICLE UPSETTING

As some people know, I’ve stopped writing for The Canary, for now. One video sums up my reasons for this decision. But the backstory behind it really hammers home why I’ve done this. And it also acts as a testament to the situation for millions of chronically ill people around the world.

The tip of the iceberg

This is my girlfriend Nicola Jeffery having one of her regular seizures. Some people may find this upsetting:

These apparent tonic clonic episodes happen at least once a month. They leave Nic fatigued, with Post Exertional Malaise (PEM) and bed-bound for days afterwards. But they are merely symptoms of a complex web of underlying diseases and chronic illnesses she lives with. And they are also merely a symptom of why I have given up full time work.

But the true illness here is Nic’s long and complex journey to this point. Because it underscores the systemic failings of our society.

It’s the first time I’m properly writing about this. Me and Nic have taken the decision to start documenting her story because we feel there are various important narratives that need to be made public.

No sob story here

This is not Nic’s ‘sob story’. This two part article is acting as the first point of reference in what will be a long and ongoing series of pieces charting her medical, societal and socioeconomic journey. While elements of her story may not be unusual, as the sum of their parts I believe her case to be extraordinary – insomuch that not many people have got to the point she has in her circumstances.

But the reality in our opinion is that Nic and her medical journey are probably not ‘rare’, even though her diseases and illnesses are classed as such. As she always says:

They’re not ‘rare’. They’re just ‘rarely diagnosed’.

The hope is that this can be a small part in the ongoing movement towards change for chronically ill, disabled and sick people – many of whom are probably mis, under or undiagnosed.

For reference, I’m writing it because I’m the writer. If this was a vlog, Nic would be doing it – because she has an acute skill in verbal communication.

Early signs

Nic was born in 1986. A C-Section birth, the umbilical cord was wrapped around her neck restricting her breathing. It was perhaps the first indicator that her health was going to be a complex matter.

Before the age of five, she was told she had:

• Growing pains including head/neck aches, joints, muscles.
• Asthma.
• Left side sinus complications.
• Disturbed sleep.

Of course, we now know that the “growing pains” and “asthma” were bullshit. The sinus complications and disturbed sleep were symptoms of her current illnesses. But everything was either misdiagnosed or dismissed as nothing. The reason? A working class, council estate mother with the wrong postcode ‘didn’t know what she was talking about’ in the eyes of the middle class, medical professionals of the elitist London borough of Bromley.

Aged five, Nic developed Alopecia, possibly the areata type owing to the autoimmune implications, although we don’t know. Her GP at the time told her mother this was due to her “being jealous of the birth of her brother”. Again, we now know differently. It was probably the first sign that her immune and autonomic systems weren’t what they should be.

And so, this constant dismissal, disbelief or downright disinterest in Nic’s health has continued along the lines of her early medical experiences.

Other early symptoms included Nic’s proficiency at karate – she was extremely flexible. Also, she used to wake up in the mornings with unexplained bruises. Her grandmother noted how she used to move a lot sometimes during the night, ‘like she was playing karate in her sleep’.

A complex history

I’m not going to write paragraphs on her medical history. Putting it in bullet points is easier for you to read. So, here it is:

• Suspected viral Meningitis aged 11 years.
Pityriasis Rosea (a viral infection) aged 12 years.
• Put on the contraceptive pill aged 13 years (came off aged 18) for the regulation of heavy, irregular periods. She was not sexually active until she was 16.
Glandular Fever (a viral infection) aged 17 years.
CIN 11/111 (pre-Ovarian cancerous cells, possibly viral) growths removed aged 19 years.
• Birth of first child aged 20 years.
• Suspected H1N1 virus (Swine Flu) aged 23 years.
• Fetal loss at 20 weeks aged 26 years.

Now, while none of the above may not seem out of the ordinary to many people (maybe  rather upsetting and a lot to deal with) for Nic all of it was. Because when looked at as a whole, they show the patterns emerging of what we now know are her underlying diseases and illnesses.

Downward spiral

She was a very fit and healthy child until she caught Meningitis. After that, she never fully recovered and her energy levels were never restored. She used to have days off from her Grammar school (going there is a whole other story) due to exhaustion. She had to give up karate. But apparently there was nothing wrong.

The same thing happened after the Glandular Fever, which hit while she had what the ‘system’ would consider a ‘good job’ in the City. She was again left in an even worse, permanent state of health than after the Meningitis.

And repeat this process after the birth of her first child. It was then she was completely destroyed, and the extent of her ill-health became apparent.

She was constantly fatigued. Her muscles and joints ached all the time, with subluxations (partial dislocations). She had dizzy spells. She had periods of extreme vomiting. Her digestive functions resembled that of someone with Irritable Bowel Syndrome. She had partial incontinence. Pins and needles and spasms plagued her body. She was also having the seizures. Her cognitive ability was severely impaired.

But, according to the medical profession, social services and the Department for Work and Pensions, this was ‘all in her head’. Apart from a diagnosis of Temporomandibular Joint Dysfunction they all said she was experiencing this because, essentially, she was a hypochondriac and depressed. Now, her symptoms may be labelled as “functional“, or as is becoming more fashionable in junk pseudo-science and psychology circles, “somatic“. That is, stress, anxiety or trauma trigger actual-body responses. However you dress that bullshit up, it’s still someone saying to you “it’s all in your head”.

What followed is absolutely shocking.

A low is reached

Nic’s first concern over her health was that she felt she was not looking after her young son as well as she should be. For example, she was not waking up when he was crying. So, couple that with domestic violence from the father, and she went to social services for help.

Because no medical professional was believing her, she had no proof she was unwell. Also, there were external forces influencing people within social services. In the end, despite her desperate pleas for help, Nic was sectioned in 2008 under the Mental Health Act, as social services essentially said her desperation about her health amounted to her being mentally unstable.

Funnily enough after nine days in a secure unit, where another patient tried to stab her, she was released with a clean bill of mental health just hours before the tribunal over her sectioning was due to be heard.

So, with mental health effectively ruled out as a cause of her illnesses, Nic began the long road of finding answers to her health chaos. Along the way came homelessness, a two-year court battle for custody of her child, hate crimes, discrimination and misogyny. But that’s all for another article.

First diagnosis…

Eventually, after continued dismissal by the medical world, she was given a diagnosis of Fibromyalgia in 2010. In 2011, she was told she had Polycystic Ovary Syndrome along with Epilepsy (only after her seizures were finally witnessed). For this she was prescribed Lamotrigine. When she fell pregnant with her daughter, her GP told her to come off it immediately. We now know this most likely caused her fetal loss, as she probably had a seizure.

Test, after test, referral after referral and consultation after consultation followed for the next six years. All came back showing nothing particularly abnormal apart from odd bits here and there, which weren’t taken seriously.

During this time Nic was researching for herself, and came across something called the Ehlers-Danlos syndromes (EDS). These are genetic connective tissue disorders, where none of the collagen in your body works properly (eg, the flexibility she had as a child would be due to lax ligaments and muscles). She believed she matched the criteria and finally find a consultant who agreed. So, the path to an EDS diagnosis began.

Also while all this was going on, Nic developed an acute social and class consciousness, joining and becoming active in both the Green Party and campaign group Disabled People Against Cuts (DPAC). Then, in 2016, she also met a certain notorious journalist from The Canary news site…

Part two of Nic’s story is here:

https://mrtopple.com/2019/03/08/a-video-i-released-only-tells-part-of-the-story/

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 are gratefully accepted. Thank you.
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