A Youthful Flirtation

This isn’t the first time I’ve danced the tango with an ME/CFS- like illness. I was only 18 years old when my first episode struck. It lasted a ‘mere’ 10 months (approximately), compared to the almost 2 year ongoing slog of this current episode, and I had an extraordinarily lucky 25 year grace period in between them both. 

Photo by Pixabay on Pexels.com

It’s important to discuss it though, because ultimately I received a ‘medically validating’ diagnosis for my first illness, which is different from my current experience on this diabolical ME/CFS merry-go-round – and yet there are striking similarities between each sets of symptoms, as well as important differences. 

It’s important, because one of the key arguments used to denigrate the validity of the physical disorder/disease component of the ME/CFS experience, is that “organic disease (ie “real” disease) would show up on tests/investigations if it existed/were present”. 

There are HUGE flaws to this argument/belief. 

First of all, despite what people (including other medical professionals) may think, there are actually relatively few investigations needed to be carried out, before ME/CFS sufferers can be shuffled into the ME/CFS diagnostic box. And once entrenched there, it’s all too easy to have every new symptom dismissed as merely part of the ME/CFS baggage. (To do this topic justice, I’d like to discuss it in further detail in a later blog). 

Secondly, we vastly overestimate the accuracy/sensitivity of some of the tests we do perform in finding what we imagine we’re looking for. Take CRP/ESR* for example. They’re common blood work investigations and are generally used to pick-up/measure/monitor ‘inflammation’ anywhere in the body, from a vast number of different causes/effects, in a huge number of different conditions (including bacterial, viral or fungal infections; rheumatic and other inflammatory diseases, malignancy; and tissue injury and necrosis). They’re immensely useful when used in the right context. 

A CRP/ESR test will undoubtedly have been performed on a ME/CFS patient at some point in their diagnostic pathway. And if such a test is performed, and the result is ‘normal’ (which it probably will be), then this is generally taken as evidence that the body is not undergoing an inflammatory process. 

This leap of assumption is important because:

  • once a patient starts to accrue ‘negative/normal’ test results, their doctor, either  consciously, or subconsciously, may start to becomes suspicious about “made-up symptoms” (I’m absolutely not saying this should happen, but unfortunately it’s often what does happen), and 
  • once a doctor has decided there’s no sign/evidence of inflammation, then they are falsely reassured and will probably stop looking for it. 

So, why do I feel that I need to particularly discuss this issue? Well, during my first illness in 1994, all my repeated blood tests, including inflammatory markers, were always ‘normal’ (except once, a very small, non-repeated, elevation in my white cell count). My symptoms back then, were similar to recent symptoms, but in addition, during my first illness I also developed high nocturnal fevers and cervical chain (side of neck) lymphadenopathy (swollen lymph nodes). At the time, there were concerns that I may have Hodgkin’s lymphoma. I went on to have a lymph node excision and my biopsy was reviewed under a microscope. It showed that, on the inside, my lymph node was ‘necrotised’ (full of dead tissue). My experienced surgeon said that he’d never seen anything like that before.

There was some unknown process going on in my body, severe enough to cause necrosis of certain tissues, and yet inflammatory marker blood tests were normal

How is that possible? 

I honestly can’t tell you ‘how’ it’s medically possible (perhaps if my brain weren’t currently so foggy, I could at least have a good-going attempt to explain it), but because I can see both sides of the picture, my responsibility, as currently both a patient and a doctor, is to say that it IS possible. To say to all my fellow professionals, who have come to rely on tests/investigations to diagnose illness – and who make assumptions about what is, or is not, occurring inside a person’s body based on numeric results, – it IS possible to have significant disease processes going on, without being able to pick it up with the tests that we currently have commonly available.

I also want to say: 

“to all those medical professionals that I have already met, or will meet on my current CFS/ME journey, I do know the limitations of available tests and current medical knowledge. It’s OK. I don’t expect, or need you (as my doctor and normal human being) to necessarily know all the answers - to know what is causing my ME/CFS symptoms. It would be really nice (*understatement*), but it’s simply not currently possible. What I do need is for you to be understanding when I tell you my personal details. To have an awareness of the limitations of the tests that you perform. To truly listen when I speak. To support me through this extremely difficult experience (by simply doing the above - it’s not rocket science and won’t take more than the care that you would normally, hopefully give any patient) and don’t give up on me simply because I’m not getting better, despite the time and care that you’ve already given me”. 

Life, in all its forms, truly is a miracle, and the workings of the human body contain countless, unsolved mysteries. We don’t know all the answers yet (I doubt we ever will), but if you’re putting together a jigsaw, you don’t throw away the pieces just because you can’t get them to currently fit, or because you can’t make out the final picture yet. That would be pretty daft, wouldn’t it. 

I was ultimately diagnosed with Kikutchi’s Disease as an 18 year old. “Diffuse necrotising lymphadenitis” (whilst having normal inflammatory markers). I had to take a year off medical school and restart my first year again the following year. At the time it felt like a disaster. Now, it feels like a gift. 

*CRP C-reactive protein  https://en.m.wikipedia.org/wiki/C-reactive_protein

*ESR Erythrocyte Sedimentation Rate https://en.m.wikipedia.org/wiki/Erythrocyte_sedimentation_rate

Wow – I also found this really interesting article when looking for your link to ESR!! The jigsaw pieces are out there. We just have to find them and put them all together. 

https://ashpublications.org/blood/article/132/Supplement%201/4874/262252/Erythrocyte-Deformability-As-a-Potential-Biomarker

https://rarediseases.info.nih.gov/diseases/6834/kikuchi-disease#:~:text=Kikuchi%20disease%20is%20a%20benign%20disease%20of%20the,in%20the%20neck%2C%20which%20tend%20to%20develop%20suddenly.

Collateral Damage

Obviously, I’m only pretending to be unwell, because my goal in life is to “live off the state”, whilst “free-riding on the backs of hard-working tax-payers”. I mean, it’s not as if there are any downsides to my current position, are there? No ‘collateral damage’ shall we say? Never-mind living with the physical symptoms, which of course I’m just “making-up”, it’s not as if:

  • It’s any particular hard-ship to lose my paediatric medical career. One that I’ve spent years striving so hard to hold onto, whilst attempting to balance the demands of single-parenthood, working and child-care needs.
  • I’ve lost good friends.
  • I’ve lost the respect of past colleagues and other people I value.
  • I live in the knowledge that a large number of people in the UK (including some medical professionals) will verge between either secretly, or openly, loathing me (and other sufferers) for ‘having’ ME/CFS – which they believe is a made up condition with it’s roots in pure, unadulterated laziness.
  • I’m pretty much financially ruined and will most likely have to declare myself bankrupt when I’m unable to renew my mortgage on my small home (which is in slight negative equity), simultaneously making me and my son homeless.
  • I try not to live in fear of unexpected (but inevitable) bills: the leaking roof, cracked walls, boiler which mysteriously loses water, temperamental fridge/freezer, balding car tyres, new spectacles, etc.
  • Time is slipping away as I pass most days ‘existing’, rather than truly living.
  • I’m no longer as good of a mother as I would like to be.
  • My situation puts extra strain/stress/worry on those people that remain close to me.

It’s not as if any of the above are true, is it? Those and many more? Nope, of course not. Far more probable that I’m just “a malingerer, living the high-life whilst getting some kind of sick buzz out of this pathetic, fake-illness charade”. I mean, trying to live off Universal Credit is an absolute joy isn’t it. A non-stop holiday. Oh, yeah!

“Hip, hip, hip, horray! 
Malingering is here to stay!”

Time to “paaaarrrrrrtttttyyyyyy!!!!!!”

One-Time
Monthly
Yearly

Make a one-time donation

Make a monthly donation

Make a yearly donation

Choose an amount

£1.00
£2.00
£3.00
£3.00
£9.00
£60.00
£3.00
£9.00
£60.00

Or enter a custom amount

£

Your contribution is appreciated.

Your contribution is appreciated.

Your contribution is appreciated.

DonateDonate monthlyDonate yearly

Catch-22

I wanted to write a book about Medically Unexplained Symptoms (MUS), basing it around ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). I was going to attempt weave together my own experiences of MUS – both personally and professionally – with facts, research and other relevant information, in a way that would speak to all manner of people. From those struggling with MUS themselves, to friends/family members of sufferers, the general public, health care professionals, medical researchers etc. I even hoped that such a book might one day find its way into the hands of those making decisions about where public money, especially research funding/grants should go.

Did I also mention that it was going to be fabulously witty and all-round, bloody brilliant?

Ha. Fat chance. Grand intentions aside, it’s pretty obvious that I can’t write any such thing. Possibly because I’m neither funny, nor any good at writing? Both could still be the case of course, but in addition, I’m stuck in a bit of a ‘catch-22’ situation. I actually have ME/CFS and one of my core symptoms is ‘brain-fog’. When at its worst, I have real difficulty reading and making sense of words/sentences. A cruel blow when books have always been one of the core, dependable ‘loves of my life’.

#I Love Books

Now, before anyone says anything along the lines of, “oh well, it can’t be that bad if she’s writing this”, consider for a moment certain points:

  • I’m currently (as in today and at this hour) in somewhat of a better place brain-fog wise. A window of relative wellness shall we say. Not back to my pre-illness self, but definitely improving. For most of last year, writing like this would have been absolutely impossible. 
  • You don’t know how long it’s actually taken me to write these few measly sentences, nor how long I’ve spent re-reading, or attempting (and failing) to grammatically correct them (I’m not telling you how long – its too embarrassing to admit). And let’s not mention punctuation (arghhh).
  • As I write this, I do it with the sure knowledge that there will be energy ‘pay-back’ and the debt collector is not friendly. For instance, at this moment I can feel that I’ve just about reached my current limits of focus and concentration – my thoughts and movements are getting increasingly ‘sludgy’ and I’ve now got a horrible headache that will probably last all day. Oh the joys. But I strongly suspected this would happen and I’m still glad I’ve done it. I also plan to do it again and again and again. Why? Well, partly because I don’t want this illness to define me, but also because I don’t want the prevailing inaccurate beliefs about MUI to define how you see me, and the millions of others similarly afflicted. I’d like to share what I’ve learnt and experienced on my journey so far and hopefully change the world at least a teensy bit for the better, even if it’s just one world, one blog at a time. 

Gratitude

I’m anxiously sitting here on a children’s ward waiting for a telephone call to say that my son is ready to come back from theatre. We’ve met loads of lovely people in the hospital today, all doing a bloody amazing job. I’m reminded once again of how brilliant our healthcare system is and of how it’s made so by the fabulous people who make up its staff. Truly wonderful people who work damn hard giving their absolute all, often without much (or anything) in the way of recognition or thanks (and no, doorstep clapping doesn’t count).

Not that I need much reminding. I worked ‘in’ the system for almost 20 years and had the privilege of working with some of the kindest, most hard-working, inspirational and compassionate people I know. So I’m just taking this moment to ‘thank you’.

From the bottom of my heart…

“Thank you”.

#Gratitude