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Dan Neuffer had a severe case of ME/CFS/FM but after extensively researching the illness, Dan came up with his own protocol and eventually fully recovered.  Since then Dan has produced a website, and a book, and offers a coaching program that seeks to assist others to find their own pathway to recovery. 

 

Dan is recovered but this time a series of mistakes he attributed to his aversion to doctors and his tendency to self-diagnose – two possible consequences of ME/CFS/FM – almost cost him his life. Thanks to Dan for allowing Health Rising to reprint his blog

Lessons From my Life-Saving Surgery That Might Save Your Life!

PERSPECTIVE:

Life with chronic illness can be challenging to say the least. Not only do chronically ill people have the normal challenges that everyone has in life, but they are amplified as your capacity to deal with them diminishes.

 

Of course there are lots of additional challenges for a chronically ill person, and as time passes, the way we deal with all these inevitably changes. These changes in our decision making process are not just problematic, but they can be potentially life threatening. What is so surprising to me, is that I am still dealing with these changes after having experienced seven years of chronic illness, even though I have been fully well for over eight years now.

 

What is so surprising to me, is that I still fall into the very trap that I advise people every day to avoid. Looking back, I feel a little silly. I feel a little embarrassed, but I am going to share it all with you anyway and hope you can understand how and why it happened.

 

Last month was perhaps the second or third time when this impact of years of chronic illness and consequent changes in my decision making, seriously risked my life –

 

“it could have happened at any moment, the chances of survival would have been 50%”.

 

I recently joined the chronic illness bloggers network. People blog for all kinds of reasons, but I started writing to help others and to inform. For me blogging is a way to reflect on my experience, to learn from it and to share those learnings with others.

 

It seems that I have been a little slow in learning this life lesson, so my hope is that by sharing it with you,  that you will get there much quicker. So rather than just ‘telling you’ the lesson, I will share my experiences in a bit more depth.

 

Ask yourself; how do you progress from moment to moment and make your decisions?

 

How could I make this crazy mistake that could easily have cost me my life?

WHEN IT ALL STARTED:

My “how the heck” moment actually started around two years ago. The kids had a pretty nasty stomach bug and eventually I got sick also.  After three or four days of little food and lots of diarrhoea, I finally turned a corner. I had been eating normal (albeit plain) meals for about a day and treated myself to a banana and a generous piece of dark chocolate.

So I was surprised to suddenly experience gut pain that I judged to be constipation.

I ate some fibrous food with the hope it would pass, but the pain worsened. However, it was in the evening and I wasn’t inclined to seek a Doctor.

confused doctor me/cfs

Dan’s negative experiences with doctors when he had ME/CFS/FM left him understandable wary about seeing them again. That reluctance and an attempt to self-diagnose, however, almost cost him his life.

If you have been ill for a while, perhaps you can understand me. During my 7 years of illness, I had what seemed like several lifetimes worth of doctors’ appointments and treatments. Somewhere along the way, I had become a reluctant patient – a very reluctant patient.

 

But as the pain worsened, even at 9/10, I still hoped it would pass. Sometime after midnight, I finally relented as my pain levels hit a 10/10 (I think it was actually more like a 11/10 as I felt I had hit 10 a little earlier) My wife took me to the local hospital.

I will summarise my experience to say that the final diagnosis was constipation.  They did the physical test for appendicitis and also bloods which showed no infection and also took an x-ray to check for a bowel obstruction. None of it including further physical examination showed any real issue, but I was in absolute pain and distress.

What upset me about the experience was how degrading it was. The pain had gone so high that I was completely unable to cope. Vocalising this in the hospital and in front of my wife was one of the most degrading things I had experienced. I am not saying that as a man, I should manage to be completely stoic in the face of such severe pain, but I was ashamed at going to pieces like that.

What made it all worse was that I felt largely ignored despite the severity of my pain in the hospital. I felt like I wasn’t believed, like the tests and diagnosis didn’t justify my level of pain. Eventually a hand unceremoniously plonked a small plastic cup containing 2 or 3 pills in front of my face onto a small tray, but by this stage, I was in such a state, that I was unable to take the pills on my own. So they sat on this little table for over an hour until my wife was able to be by my side!

Eventually, the next day I was given laxatives and eventually the pain started to ease.

Was I happy to finally be rid of the pain? Sure.

Was I happy to be finally discharged from hospital? Absolutely.

If I had my time again, would I have gone to hospital again? Absolutely NOT!

If I was a reluctant patient before the experience, I was RESOLUTELY reluctant afterwards!  My thinking was, unless I have a problem that needs a thread and needle, I am never going back to hospital!

Fast forward 2 years

Two years after that experience, my resolve not to return to the hospital was finally tested again. Remember my experience, my reluctance – let’s have a close look at my decision making process:

 

  • Friday afternoon: Mild pain in my abdomen started niggling at me. I had just had a treatment for my back that has been a bit troublesome and thought it might be referred pain somehow – I ignored it.
  • Saturday morning: The discomfort was more pronounced. I wondered if I might be constipated again, so I was mindful of my diet. (no bananas and chocolate this time)
  • Saturday afternoon: The pain had escalated – I was really feeling uncomfortable. I couldn’t understand why this was happening, I hadn’t really eaten anything unusual, nor had I had any stomach/gut issues recently. I ate with the sole purpose of relieving the issue and tried to relax with the expectation it would pass shortly.
  • Saturday 7pm:  Things had worsened again, I was still hoping for it to pass and started to eat prunes now.
  • Saturday 9pm:  Things had worsened again, I was still hoping for it to pass but pain was at a 7 or 8 now – it was over my threshold and the pain was driving me to take more action.  I found some laxatives from a couple of years before and started taking them – surely I would get relief and the pain would ease soon.
  • Saturday 10-11pm:  My pain tolerance is really diminishing – I am starting to question my judgement of whether the pain is getting worse or whether I am simply not coping so well any more. One thing is for certain, this is EXACTLY the same experience as 2 years previously – I am doubling up on laxatives!
  • Saturday Midnight:  My pain is now at what I think is 10/10, I have started vomiting, not due to any nausea, but as a response to the waves of pain. My wife is urging me to go to hospital, but I insist that I don’t want to go given my previous negative experience and lack of any support or treatment beyond the laxatives they gave me.  I can take laxatives myself at home, so I don’t see the point – I don’t see what else they will do to resolve the constipation.
  • Sunday around 1 am: I am on my own in the bathroom when I ‘pass out’ for the first time.  I don’t actually fully pass out, it’s like I am passed out but I am still awake – my body goes limp, my breathing normalises and for a short time, the pain doesn’t seem to reach me – until I become fully conscious again. I am feeling desperate now and my judgement is seriously impaired – I manage to rouse myself to get off the floor and go for the medicine cupboard to take ‘additional constipation pills’.  My wife intervenes and gets on the phone to a nurse, the pills I was trying to take stimulate peristalsis, not a good idea whilst still constipated. My wife again talks to me about going to hospital – I point out that beyond laxatives, the hospital had nothing to offer for this problem last time.  I have a bowel movement – I get no relief.

A shift in my decision making paradigm!

help me/cfs

Dan held out until the very last moment before he went to the hospital again

Sunday some time after 2 am: 

My pain is now at a “13/10” – my frame of reference is shifting.  Whenever the pain peaks, I am oscillating between that 95% unconscious state and vomiting.  I am still refusing to go to the hospital – “THERE IS NOTHING THEY CAN DO TO HELP ME!!”  I am angry. I am uncertain. I hate being pushed to go back to the hospital, I don’t want to go! There is no point! I just have to get through this.  I have periods of hyperventilating and I am not coping at all. The pain is now so bad that I am shaking and getting pain in my chest. The distress is so severe that I consider the serious possibility of having a heart attack.

 

NOTE: As I type this, I cannot help but wonder what kind of person could be telling this story – I cannot relate to this person – it seems like insane behaviour. However, my previous experience of being in the same pain and distress without any assistance is forming my view that it is pointless to go to hospital.

 

Suddenly I feel a shift in my outlook, I realise that just dealing with it, waiting for the problem to resolve isn’t enough. I realise that regardless of what happens with the “constipation”, if I don’t get help to get the pain under control, I could have an even more serious problem.

I stand up and leave the bathroom and start stumbling towards the car. My wife asks me what I am doing – I say only one word  “Hospital”.

It’s nearly 3am on a Sunday morning – potentially a peak time in Accident and Emergency. Will I get seen to? My wife investigates which hospital has the shortest waiting time and we head straight there.

I absolutely cannot cope.  My wife tries to talk to me in the back seat, but I am unresponsive semi-conscious one moment, vomiting the next.

What really happened!

Without giving you a blow by blow account, let me summarise what happened next.  Just like last time, the physical test wasn’t convincing that it’s appendicitis.  Just like last time, the blood test comes back negative – no signs of infection.

Instead of an x-ray, they want to do a CT scan and advise me of the cost. They have given me morphine and I am temporarily managing with the pain and say I will consider it – do I really need it?  I ask “shouldn’t I be taking more laxatives?”

Three minutes later, the morphine wears off and I am back to 10/10 pain (I am confused and shocked but my wife confirms I have been given morphine) – I immediately approve the scan.

Shortly after the scan, the doctor tells me that the scan shows that my appendix is inflamed and that they have called a surgeon who is coming to the hospital. The doctor tells the nurse to give me as much morphine as I need.

Sometime later I meet the surgeon who explains that the scan appears to indicate a tumour in my appendix. He has to be very careful when operating because if not removed intact it could spread to grow in other parts of my body.   The surgeon gave me a high degree of confidence that he would do his best.

The next day after the surgery when I meet the surgeon I am feeling much much better. He tells me that the operation went great, my appendix had quadrupled in size and was ready to burst any second. If it had burst, my chances of survival would have been 50%. He explained that it smelled horrible, but that there was no tumour.

We only speak a few short minutes, but as I explained to him my experience leading up to the operation and that it was just like my constipation 2 years ago he scoffs. When I question him he tells me that constipation doesn’t create that kind of pain.  I suddenly wonder what really happened 2 years earlier!

Not only had my appendix quadrupled in size, but the inflammation had spread to all my surrounding tissues. The biopsy even revealed that the appendix had necrosis, the tissue was actually dead – short of it actually bursting, I imagine it doesn’t get much worse than this.

The real lesson for chronically ill people

OK, so what is the learning for me here?  What is the learning for you given that this experience is actually by a person (me) who is no longer chronically ill?

Perhaps you read this and think me mad for not going sooner (you are right!) Perhaps you have also developed an adversity for going to doctors/hospitals based on negative experiences and saw my perceived logic that there was no point in going when there was no treatment/benefit to be had.

The real problem here was twofold:

  1. I allowed my previous upsetting hospital experience (& 7 years of doctor/treatment visits and frustration whilst I was chronically ill) to make me unreasonably stubborn and treatment resistant.
  2. I self-diagnosed when I am not a medical doctor nor had the benefit of any test results and only my own personal limited experience with constipation/appendicitis. I used the fact that my experience was identical to 2 years previous as an absolute of what was happening.

I hope that by me sharing my experience, you recognise the dangers of becoming complacent, self-diagnosing or being overly reluctant to engage in medical help.

I hope you realise the danger of automatically attributing all your current symptoms in the face of some new ones as ‘just another flare up’ (as I had done during my years of illness when I had severe food poisoning that eventually landed me in the hospital 2 weeks later).

history of negative ME/CFS/FM doctor appointment

Do you tend to self-diagnose? Attribute everything to ME/CFS/FM? Or has a history of negative ME/CFS/FM doctor’s appointments left you reluctant to see a doctor for other things?

People with chronic illness often speak of how they feel they ‘wear their doctor out’. Often the relationship gets strained or breaks down leaving patients frustrated. Perhaps you can imagine how frustrating it must be for doctors also, or maybe not.

However, you might not realise how worn out you yourself have become when it comes to doctors’ appointments.

I understand how you might get sick of going to the doctor if you get no outcomes.  In my experience, most people with ‘incurable chronic illness’ that have been sick for longer periods of time, seem to become disconnected from their GP – often stop seeing a doctor altogether.

But with the constant morphing of symptoms over time, this can be a very dangerous choice!

Whilst I can’t tell you whether the diagnosis of constipation two  years previously was accurate or not, I can tell you with absolute certainty that my symptoms leading up to my appendix operation felt 100% identical. So I had based my decision on this, but I did not have constipation – I had appendicitis.

My decisions could very easily have led to me losing my life – my wife losing her husband and my children losing their father.  I made a terrible mistake and I choose to take that lesson on board.

My hope is that if I am ever faced with a similar situation, that I will be a little less reluctant to seek help.  My hope is that you will take the lesson on board also and that you will make the best choices for you and your family going forward.

What ab​out YOU?

  • Have you become reluctant or phobic about going to the doctor?
  • Can you relate to my choices?
  • How has my experience made you think about your choices going forward?

Please leave your comment below!

More About Dan 

Dan Neuffer’s story with chronic fatigue syndrome (ME/CFS) / fibromyalgia began with an abrupt onset triggered by a vaccination. His symptoms ranged from extreme fatigue not alleviated by rest, bouts of fever and other flu-like symptoms, gastrointestinal symptoms as well as night sweats, cardiac symptoms, orthostatic hypotension, allodynia, excessive urination at night, salt cravings, pain and neurological symptoms such as fibro fog.

After  fruitlessly seeing dozens of doctors, Dan took matters into his own hands and found a pathway to recovery.  He believes that autonomic nervous system dysregulation plays a fundamental role in these illnesses and that a comprehensive treatment approach is critical; when he found the right treatment protocol, treatments that hadn’t worked for him before began to work.

Since Dan recovered he has written two books,  CFS Unravelled and Discover Hopeand created an online recovery program for ME/CFS/Fibromyalgia called ANS REWIRE

Check out Dan’s Health Rising Blogs

 

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