FLASHBACK:
It was Sunday morning at around 3.30 am. As I drifted back into consciousness, I realised I was lying on a concrete floor. I was outside, on a footpath, curled up in the fetal position. I was alone.
There was a plastic sick bag in my hand and suddenly the waves of pain washed over me again when I heard the sound of rapid footsteps moving away from me. There was no other sounds – it was a perfectly still night – not a car, not a person, not even a bird – NOTHING.
Within moments I was fully awake again and the pain so severe that I had to reach for the sick bag and saw the neon sign “Hospital” – I started hyperventilating again.
“How the heck did I end up here – AGAIN?”
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.
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!
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?”
3 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:
- 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.
- 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).
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 about 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!
Glad do hear you finally found out what had been causing you so much distress. A very valuable lesson we can all learn from indeed. All the best.
I can certainly identify with that, but for a different reason.
To give you a little background, I have only recently self diagnosed by googling my symptoms (this is something unrelated to my CFS), carefully weighing up the facts, and then by performing a simple dietary test and mentally taking note of the changes, I believe I’ve come to the right conclusion.
Why this article resonates with me is because I was considering going to the doctor to get a professional opinion and possibly a test or two, but the effort just to get there put me off. Most of the time it’s not safe for me to drive due to the cognitive dysfunction and inhibited reasoning skills. This makes me rely on others for my transport.
I think you get the picture here.
Thanks for the lesson, Dan 🙂
I absolutely have become reluctant to go to a doctor. I was diagnosed with fibromyalgia, ibs and have suffered flares and symptoms for the last 4 years. Every time I experience something new i am reluctant to see my doctor. They do blood work and tell me I’m constipated and send me on to another specialist. You start to think it’s all in your head and the doctor thinks your a hypochondriac. I get really depressed and feel nobody understands.
I think most of us feel like that – it’s very frustrating.
I had similar experience in pain recently. I made cookies and even though I knew better, I ate too many cookies and too much of cookie dough. I was thinking I’ll just get this over with and not do again. All throughout the night I was in huge pain, wishing for diarrhea and hoping to vomit. Pain overwhelming thinking I’m dying, wishing I would! Relief did come next day, but was more of body resetting than anything else. Dan, you’ve given me a wake up call. If it happens again I will be aware it could be more than constipation or mere stomach upset and seek medical help. I get your point and agree…we are weary of seeking medical help, when it is usually not effective….but it might be different the next time.
Glad it resonated with you!
It’s easy to fall into the trap, not just with acute symptoms, but also chronic ones.
As I mentioned in the article, it also happened to me when I had CFS/Fibro – I thought it was ‘just’ a flare up, but I actually had serious food poisoning!
Totally relate to this post…in fact you are the worst case scenario that I often wonder “what would I do if that happened” as I have become so phobic about seeing the doctor, for any reason, after 12+ years of FM, CFS and chronic pain etc, and all the negative experiences I had, that I stopped visiting them years ago. My one time of relenting resulted in me taking an antibiotic that almost led to an emergency in the middle of the night as I had an extreme reaction and it turned out this drug was obviously contra-indicated for the severe neuralgia I have but the doctor didn’t seem to notice the small print or care..so I felt like that was a “never again” scenario. Lately…perhaps its getting older, having more “other” health issues arise…I’ve wondered how/if I can face a future of never again seeking medical help; a future that feels littered with scary “what if”s like the one you just described if a very-severe health issue arises and takes me out of my depth. My health journey has taught me a lot and I like to think I am balanced enough, these days, to take the best from the conventional medicine mixed up with the more hollistic approaches; in fact, it is kind-of down to those of us with these “fringe” illnesses to lead the way and show how this can be done rather than becoming as entrenched as the doctors are. I think your post has provided some pointers, even for those situations where it feels “just like…” a previous episode; take each one case by case and, if you need the help, seek a second opinion whilst not agreeing to be bulldozed into anything that feels untrue for you (no one knows our body quite as well as we do). There’s a lot of food for thought in this post, thank you.
Goodness, I so get where you are coming from.
I feel that I ‘should’ say, just do it – be responsible – yada yada – but then of course I totally understand how you FEEL! Those feelings are powerful – I still struggle with it so many years after recovering from chronic illness – and frankly, I still have those feelings after my health scare described above!
Seriously, I think many of us could do with psychotherapy to help us get over these strong feelings of resistance – just look at what I wrote above – it seems totally crazy that I resisted going to the hospital so long!
Hi Dan – so glad you are recovered. Although my experience isn’t anywhere near as serious as yours, I can relate to it. I had a blood test a few weeks ago which showed an elevated platelet count. My gp referred me to a hematologist. I thought I’d just trot along and be told it was my fibromyalgia causing it, but the consultant didn’t think this was the case, so I’m waiting for more blood test results before I start medication to lower the platelet count. I had convinced myself it was caused by fma because I had googled it. Lesson learned: get medical advice before googling! and not everything is caused by fma.
Hi Mary
Hope everything turns out to be OK.
Yes, not everything is caused by Fibro – even though the list seems never-ending at times.
I can totally relate to this! I rarely go to the Dr because they do very little to help me. I may not be as totally adverse to it as you were in the story, but I do avoid many Dr visits and think to myself, what’s the point?
Happy to hear that you are feeling better now! I actually had my appendix removed about 6 years before I experienced da pots! I was lucky though that I was in surgery to get a benign tumor off the ovary and they saw my appendix was full of stones and removed it before it caused me too much issue.
Thanks for sharing! Very helpful reminder!
It was good that you described your experiences and I am impressed by the self-critical way you reflected on what happened and made some observations about what to do if it happens again that could be very useful for us all. Yes, I recognise the reluctance to consult a doctor who has not always been able to help with – in my case – fibromyalgia. I tend to anticipate what they will say -I expect that they will just offer more pills – based on past experience, rather than any knowledge about any new condition or of any advances that have been made in recent years.
As I get older – I’m 73 – its not always easy to distinguish what is part of ongoing FM and what is some other failure in the body system. I think we get acclimatised to a certain amount of pain and one of my strategies for dealing with it has been to ignore it as much as I can and get on with stuff. But clearly you were ignoring some pretty drastic signs – we are so used to dealing with our own symptoms that it becomes a habit and we don’t appreciate all the things that doctors can do- a bit of hubris?
It is easy because of our success with self- help to think that medication of any kind is ‘bad’.
I suppose like many others, i have become prejudiced against allopathic treatments and prescribed drugs because the side effects have been unacceptable – but I try to keep certain pain medications in mind that I don’t presently use, but which my doctor will prescribe immediately if the symptoms become unbearable.
I am new to your website – just a few days – and I am encouraged by the success stories, particularly those of older people. I have a great deal more to say but am starting by going systematically through your programme. Already I plan to bring a bit more discipline into my habits.
I am interested in how FM affects all the other illnesses one is predisposed to in old age, how they are related and how people have dealt with them.
So thanks again for sharing and many thanks for the work you are doing. I like the rigour of your approach, and its positive programme.
all the best
Pen
Dan–first of all let me say that I’m glad you are OK. You are an invaluable resource to me (Mary B) and others. If I didn’t have the wonderful, integrative doctor that I have now I would absolutely be reluctant to get help. My previous doctor just gave me a hug and said to keep a stiff upper lip when I first presented my symptoms to him. Your story is a wonderful reminder that all of my symptoms may not be due to ME/CFS. Thanks so much for putting yourself out there. I also absolutely know that I will draw on your experience if I am ever in your predicament. Best wishes and hope you recover quickly.
Thanks for the well-wishes Mary.
So glad you are saying this – there are of course many wonderful doctors out there and I think it’s important to remember that it’s mostly the situation and not the doctors’ fault (although I hear some shocking experiences)
Doctor gave you a hug – I love it – perhaps that’s the best medicine sometimes. 🙂
Thank you for sharing this important lesson, Dan. I relate deeply to your having become treatment resistant. Not only have I been avoiding doctors for quite some time, but I too had the emergency room experience whereby constipation was the diagnosis, accompanied by muffled laughter. I’m glad you were taken seriously by your medical team on the second go-round, and glad your wife was there to see you through.
Thanks Margaret – it’s not fun exercise – glad it all resonated with you!
Wow Dan what a terrifying experience. I am so happy you are well now. Thank you for being open enough to share this with us. Many blessings to you and yours !
Thank you Melissa – it’s not easy sharing these things, but I felt it needed to be said. 🙂
Thanks so much for sharing your experience Dan – so glad it turned out well in the end. After 15 years of seeing multiple doctors and being told I have various ‘incurable’ conditions I can definitely identify with doctor fatigue! However this is an important reminder that conventional medicine can be life saving, especially in acute cases. Again it seems to me to be about balance and listening to the inner voice that knows what’s best for you, without too much critical/judgemental thinking 🙂
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DAn I can totally relate to that experience and you are not daft to have felt so hospital adverse. I had tachycardic a fib for two days before I bothered to contact a GP and was admitted to hospital. I am so used to being made to feel like a hypochondriac and symptoms improving as soon as I actually get to the doctors that even though I knew precisely what was wrong, I waited for it to go, I was sure it would pass, that my heart would normalise and I did not want to be belittled by the medical profession ever again. Sadly leaving it means you are more likely to have formed a clot and so can’t have the usual treatment without blood thinners. EVentually my heart did flip back into sinus rhythm all by itself whilst I was in hospital waiting for the warfarin to kick in. However the next time it happened I went straight to the doctor who again sent me to hospital and this time they were able to get my heart back into sinus rhythm.
I know the a fib is a symptom connected to my m.e/Lyme but of course the doctors just ignore that connection, finally they have something they can measure so it can’t be connected to all the other symptoms and heart problems they never manage to measure can it?
So I totally get it, just really glad you made it! My m.e started with a necrotising septic uterus so do take it easy and give yourself the space to recover!
Thanks for your comment.
Dan, I am so relieved that you got the essential, diagnostically correct and life saving medical care you needed, and of course, all PEC’s properly need and deserve from our medical systems, but often do not receive. In addition to honoring your intellectual rigor, I am deeply touched by your emotional honesty and willingness to share for the benefit of others who are smilarily caught in cycles of suffering and forging a viable pathway into greater ease. Thank you.
Thanks for your kind comment. 🙂
I AM AN MD & have been treated JUST as DISRESPECTFULLY as you describe so many times that I developed PTSD DUE TO ABUSE BY DOCTORS so your experience is NOT unique. I’ve gone thru this since I was 12 with abdominal pain in 1968 when my Dr had difficulty diagnosing Crohn’s Dz with the technology of the day. My mom stood up to him & demanded a referral to a different hospital where I was diagnosed by an out-of-the-box thinking radiologist. At 25 I felt God call me to become a physician. I began med school at 33 w/kids 4, 6 & 9. I maintain He called me to do so because I knew how people DIDN’T want to be treated. Recently I’ve developed some serious problems. One was clearly the result of MISTREATMENT by a Dr practicing outside his knowledge base which caused my blood pressure to skyrocket which he didn’t recognize & THEN had the nerve to document I was acting in an abnormal psychiatric manner! I got off the medication & the problems it caused began to reverse. I told him of this BUT he denied all responsibility and threatened legal action against ME if I ever contacted HIM again! Another Dr confirmed his INaction to take me off the medication upon my return to his office (he never even checked his chart notes) HAD caused my problems. No, I don’t trust Drs when I know EXACTLY what is wrong with me and they won’t listen to me. Afterall, I went to med school long before most of them did and am very objective in evaluating symptoms. Most of all, I know ARTHRITIC PAIN CAUSES ELEVATED BLOOD PRESSURE & if they’d just treat that, my blood pressure would normalize again as it had been when it was treated before.
Wow – that’s quite a reaction to get from your MD – quite troubling.
Sadly we hear these stories quite often, but of course there are also many wonderful stories which seem to get shared less often.
The impact of negative experiences unfortunately can effect us for many years, as the article hopefully pointed out.
Thanks for your comment.
So glad you have recovered Dan and thank you for your advice. Like you and others who have commented here I have become reluctant to seek help from mainstream medical doctors for many of the same reasons. It results in a lack of trust. Part of the problem I have found is the lack of sufficient time to discuss matters with the G.P.- the only person who can refer one to a consultant, if that is necessary. (Private doctors are a another matter) During my last visit after 5 minutes I was literally shown the door. There has also been a mistake in referring me for an unsuitable programme later found to be based on inaccurate blood tests. I have been a hospital patient several times since early childhood and have worked in hospitals too. Procedures have sometimes been traumatic, not always pain free and staff have not always shown tact. There have also been bad reactions to drugs. Someone else said that sick people make poor judgements and I am inclined to think that doctors do too. After all no-one can know everything there is to know about everything especially when year after year even month after month knowledge is updated to reflect the latest research. There is much discussion here (U.K) about the degree of stress experienced by doctors and nurses which is understandable. It therefore follows that under strain they too will make poor judgements, like us. Much of the literature I have regarding ME/CFS etc. relating to mind/body medicine of various kinds often places emphasis on following ones intuition or “gut reaction” (forgive the pun) but one cannot always trust ones own instincts either. It may just be the “luck of the draw” as to whether the right person is there to help at the right time. What does help Dan is reading about your experience and those of others and knowing I’m not alone.
Indeed you are not alone!
Yes, the conditions Doctors have to work under are sometimes nothing short of ridiculous, it’s hard to understand why this should be the case (there are plenty of people available to study medicine!). It strikes that perhaps a cultural shift is required.
So Doctors make mistakes, patients make mistakes – it’s part of being human. Perhaps it really highlights the importance of having positive advocates for ourselves. (if it wasn’t for my wife stopping me taking the wrong medication, goodness knows where I might have ended up!)
Hi Dan,
Thanks for sharing. It takes courage to be self-critical, especially when you are coaching other people and giving advice. I’m glad you are ok, for you, for your wife and children, and for us, that benefit from your help.
Lesson taken.
I had a gallbladder surgery a couple of years ago, and I totally relate to the lack of enthusiasm to go to the hospital and everything related. But in my case, I felt that something was wrong in a different way, like a different set of symptoms, not related to CFS. I was lucky to get proper diagnosis and fast response from the doctors. It can be too a serious mistake to let it go uncontrolled. Recovery was painful, because my low threshold to pain and the exhaustion of the stress of the surgery and the long hours in the hospital, not to mention the antibiotics and all that. When I was post-surgery, I was feeling awful, so I told my doctor I was very sensitive to antibiotics, for her to evaluate if was possible to use the minimum amount of them that she considered safe, and she agreed. I didn’t mention the CFS because they just don’t get it, so I “translated” to them my needs in terms that they could understand.
Anyway, Dan, I’m so glad you are ok now. Thanks again for sharing.
Thanks for your kind comment and insight.
Yes, translating in ways that make sense is really interesting when we are talking about conditions that are poorly understood.
Like “I am sensitive to pain” or “I can be sensitive to medications” etc. – I like it!
Totally agree – I see this as a product largely of the inadequacy of the current medical system in addressing chronic illness. We often end up having to become our own detectives precisely because doctors are not able to help us, short of medications. This has consequences for us as individuals and for society as a whole.
Thank you for sharing your story. You are an inspiration and I admire your honesty. Because I have been unwell for so long, I do believe I know my body better than my doctors and oftentimes they agree with me. With that said, I am of the mentality “what’s the point in going”. Moving forward, I will be more open to the value of Western medicine and its positive benefits such as saving lives.
Great to hear you took the lesson on board Leslie ??
Dan,
First let me say that I am so happy that this turned out the way it did, and that your appendix didn’t rupture and that you didn’t fall into that other 50%. That said, I can say that this is such a worthwhile lesson for you to have shared. I understand your feeling humiliated, but I can also really understand how your decision seemed logical based on history. I have not had any terrible hospital experiences like some other ME/CFS/FM patients, but I have become complacent with seeking medical care because I’ve seen so many specialists, had so many treatments, had SO many abnormal labs and images requiring follow up, most of which turned out either to be benign cysts or a diagnosis that is also benign or has no treatment. I don’t get flustered easily anymore.
What I have experienced are many terrible hospital emergency room experiences with my elderly mother and father. I once spent over 24 hours in the lobby of the ER with my 89 year old post-stroke Dad, with a history of heart failure, triple bipass, angioplasty, stents, kidney disease, COPD, complaining of severe abdominal pain and did not receive compassionate care for him. At the time my 87 year old mother had been receiving chemo once a week for almost a year for stage IV ovarian cancer. We waited miserably, and a year later, after my mom passed away I took my dad to the same ER again for pain. This time after waiting for many hours in the lobby (surrounded by drunk people and sick babies), when it was already 10 PM and they called us to the triage room wanting to insert an IV after which we’d still have to wait hours, my dad refused and said he wanted to just go home. Several months later, after he moved with us to Arizona and into our house he fell and hit his head. On the surface it didn’t appear serious, so we didn’t go the the ER. Four days later he suffered a grand mal seizure and over the next few weeks declined until he passed away from a brain hemmorage because his blood thinning medication dose was too high and the housecalls staff hadn’t checked it in a timely fashion. I made a wrong decision, and I will never know if I could have saved his life by taking him to the ER right away.
My point is that the problem is complicated by a broken medical system, (at least here in the US), in which the ER has become primary care for many people with no insurance, causing overcrowding, long waits and exposure in waiting rooms. Staff are lacking compassion because they are so overworked, so in some cases patients are not receiving the care they deserve.
FYI I had to take my Mom to the ER once for severe constipation. Remember she had stage IV ovarian cancer and NEVER once complained about pain, didn’t want pain medication. She screamed from the pain of constipation and begged them to pull it out, which they eventually did. So I think severe constipation pain can be quite brutal.
Thanks for sharing Claudia.
Yes it can be brutal, hence my acceptance of the situation as being due to constipation.
We live in an imperfect world, all we can do is take the steps that are within our reach to encourage the best outcome.
I wasn’t clear in my comment regarding my Mom’s “constipation” pain and I didn’t mean for it to seem that I was saying this level of pain can come from constipation. That just doesn’t seem right. Her level of pain was likely due to cancer that was unknowingly growing inside her. Perhaps the first time that happened to you two years prior you were actually having early symptoms related to your appendix. One can only speculate. I’m really sorry this went down the way it did for you, and that you find yourself having residual coping mechanisms getting in the way after so many years. I can only imagine how shocking and frustrating that must feel. No doubt you will conquer it though!
hi Dan, I’d just like to say that i dont think you need feel too silly. I really understand why you didnt go to the hospital. Really, your first visit confirms that. I reckon a good lesson is more that we should always get more than one opinion. It sounds like you’re pretty clear that your FIRST visit was ‘identical’ to the last one, so maybe its not so much that you ‘should’ have sort medical help sooner this time, but rather, got a second opinion back then. I have had and hear so many stories of misdiagnosis, not to mention the harm done by prescribing drugs/anti depressants, that I think we DO need to not simply trust the medical system. And those of us with a history of cfs etc know that we need to learn to trust ourselves, to listen to ourselves. And, yeah, sometimes we might get it wrong. But, Im so glad it turned out ok !
Thanks for your interesting comment.
The thing was, the symptoms cleared up the first time after I had the laxatives, which seemed to confirm the diagnosis. So whilst it might have been coincidence and a false diagnosis, it might also have been correct. I guess one cannot say for sure and I don’t blame the doctors for a ‘wrong diagnosis’ the first time round. I do think that a better diagnostic tool (ct scan vs x-ray) might have been helpful the first time around, but cost is a factor in the public hospital! My real grievance was with the lack of response and attitude when I was in such severe pain.
Wow, Dan, that is such s sobering read. Thank heavens your here to share your wisdom after this experience.
I totally empathise with you as I have made frequent trips to Emergency with “heart symptoms” and they always dismiss it as “anxiety”. I know deep down it’s not. But important to remember the lesson in your experience.
Thanks so much for sharing. I feel relieved & traumatised all at once!
Here’s to a long & healthy life!
Thank you Jo 🙂
Wow Dan! I could not believe what I was reading!! I am so glad that you are well and recovering from such a confusing and horrendous ordeal. I felt your pain every step of the way in those paragraphs. It was truly gripping. I’m glad that the ending was in your favour as you obviously have much more work to do on this planet 🙂
Thanks Elaine – I certainly wondered about succession planning for ANS REWIRE when it all happened. 🙂
Thank you for being able to be humble so that you allowed yourself to learn and on behalf of others. Can very much relate to your story. A good reminder.Is our mindset serving us? ?
Thank you once again Dan for your generosity in sharing this nightmare with us. The shock of reading it may save our lives. We learn more from adversity than from the good times.
Your negative attitude towards hospitals and doctors matches my own precisely. In my case, so far, it hasn’t been put to the test. But I do wonder how I would have responded in such an emergency. By spelling out the horror of your experience – and it must have been a huge effort reliving and writing it down – it is now fixed firmly in my head. Others too. “Remember Dan’s appendix!”
Finally, I hope you’re feeling better. Bless you, your wife and your children.
Hi Colin
Thanks for your kind words.
Glad that the lesson resonated with you – it’s such an easy trap to fall into!
Lieber Dan
Ich bin sehr froh, dass du die richtige Entscheidung getroffen hast. Ich kann deine Erfahrungen mit Ärzten und die Rückschlüsse die man daraus zieht wirklich gut nachvollziehen. Jahrelang kriegt man kaum oder keine Hilfe also geht man irgendwann nicht mehr hin und versucht einfach durchzuhalten. Es ist beängstigend und ich hoffe immer, dass ich nicht noch eine zusätzliche Krankheit habe.
Herzliche Grüsse
Sabine
Liebe Sabine
Ja, es hat eine Weile gedauert – aber am ende habe ich es geschaft! 🙂
I hoffe das alle die das lesen bessere Entscheidungen, FRUEHER machen.
PS: Hier ist das erste mal das ich Deutsch schreibe in ueber 30 Jahre – gute uebung ?
Hi Dan. This definately resonated with me. Last December I had a similar experience and put off going to hospital. At first I thought the pain and vomiting was a sickness bug. But within a few hours I was doubled over in pain. But I refused to seek medical help. I too had previously received poor medical attention and really didn’t want to feel humiliated again. But the pain was making me feel very sick and by this time I was crawling to the bathroom. My partner took control and rang a call centre for advice with no reply. Thankfully he immediately rang for an ambulance. By this time I was incoherent and was relieved to be took to hospital and I was very scared! It turned out I had a twisted bowel which could have ruptured. This time I was given all the care and attention needed to get well again. It taught me a big lesson that I should never hesitate in that type of situation again. I have suffered with FM and IBS for 15 years now and of course had become reluctant to seek medical advice. Never again! Thank you for highlighting this. Regards Susan. x
Goodness – it’s so easy to fall into this trap isn’t it – your story sounds just like mine!
Thanks for sharing, I hope others are taking it on board.
Yes, this has been on my mind. I don’t want to address my deforming fingers, joints due to a lousy experience with rheumatologist. It was horrible. I can see exactly why you fell into that situation! …all the years of nothing-appts make me the one who knows best, and I have realized this is dangerous-only recently.
Thank God you’re OK!! We can’t lose you!
Wishing you a complete recovery!
Thanks Terry for your kind words. 😉
Thoughts and prayers are with you and yours. Thankful that you recovered and are able to articulate your processing. After 25+ years of chronic, debilitating/painful illnesses I have become very reluctant to seek medical care although my life, like yours, could be in jeopardy. My choices in going forward? Your experience will definitely be kept in mind. Thank you for your willingness to share/enlighten and share hope to all.
Great to hear you are taking it on board – it’s a sobering experience!
Hi Dan – firstly so sorry to hear how things have been with you and SO glad you are sorted and back on track. I can identifiy with your aversion to go to hospital…. as a 47 year old woman with a congenital heart condition (who also recovered from ME / CFS nearly 8 years ago) and who has been told in recent years of the possibility of having sudden fatal heart rhythms, I have become more tuned in to what my heart is doing!! I have a few ways of dealing with my heart related stuff, which I hope is helpful to share:
1. If I think I am having symptoms, I ask myself – am I feeling well? Is my breathing ok? Is the rest of my body ok? If the answer is yes, then I am less likely to take myself to hospital. I often have odd sensations in the heart / chest area and I could be taking myself to hospital very regularly if I was overly-cautious.
2. I also ask myself, have I received medical advice from my cardiac people that this is something I should go to hospital for? If the answer is yes, then I will take myself to hospital and quite recently had to do this.
3. Another helpful thing to do is ask my husband what he thinks. If I was really in need of the hospital, I am sure he would know.
4. I could also ask myself, if my friend were experiencing what I’m experiencing now, what would my advice to THEM be? This is a really great technique which helps me step outside of myself and generate more useful, level-headed responses!
And on more mundane issues, when I am having routine tests at hospital etc, sometimes I imagine that when we are discussing MY heart, it is actually not me, it is someone else! This follows the same principle of stepping outside of myself and helping me to be calmer and more reasonable. Some people may resist this idea, saying that it is not realistic, I am fooling myself, in denial etc… but what I am actually doing is finding a way to set aside the emotion and stress of the situation and think more clearly and logically and therefore may better decisions for myself.
And on a personal note, your wife is amazing and you are very lucky to have her in your life!!! 🙂
Hi Michelle,
So lovely to hear from you! ?
Indeed I am lucky to have my wife – you only know the half of what she had to put up with during my years of CFS/Fibro (and then some – hehe)
Love your advice – it’s so sound it really deserves a blog post of its own!
I agree with you about discussing it as though it is not ‘MY’ heart – keeps it more objective and much less stressful, that is gold. Also the 4th bit of advice is something I give to people all the time, it is super powerful.
Thank you so much for sharing your wisdom – powerful and wonderful advice for anyone with chronic illness! ? (sending you a hug to the UK ?)
Hi Dan,
I still can not believe what you went through within days of our first Skype consultation where you were fine and happy!!! I am very much relieved that you are OK and recovered and I am curious how the stress of the surgery affected you and if it triggered a flare of your symptoms. I know anytime I have a virus even, I have to be so careful and the stress of a major surgery can certainly be an event. I could not really relate to your experience as I would have run to the doctor or ER very fast at my age. I am always nervous that even the symptoms of my chronic fatigue and fibromyalgia are the start of a Cancer somewhere lurking in my body but now I am becoming more aware that it is my body saying “STOP” and a sign that I need to rest and balance again. Thank you for your honest account of this experience and I will keep in touch. Susan
Hi Susan
You could have been the last person to speak to me from the CFS/Fibro community – yikes.
I am fine, although it took a little while to recover as it was very stressful and there was a huge amount of inflammation in my abdomen. The first few weeks I was quite weak and quickly fatigued. Interestingly, the thoughts of CFS/Fibro never really crept in which felt a little weird having been hounded by such symptoms for so many years. There were a number of specific symptoms which in the past would have been big emotional triggers for me, so it might deserve another blog – but I am pleased to say that CFS/Fibro never dared to rear its ugly head! 🙂
Can so relate to this Dan and it made me smile. After days of acute pain I finally had to give in and go to hospital where a scan showed a mass which was diagnosed as a possible severe case of diverticulitis. I was told to go back in 2 days if the antibiotics didn’t work. I didn’t but on the 4 th day the pain stopped. Lucky for me. No one could understand my reluctance to go in the first place but now I understand it and because of your story I will follow it up with further investigation as they suggest. A bad diverticula pain is similar to appendicitis they told me so it’s shocking how long it takes some of us to give in. So pleased you are restored now. My friend put up with pain for months being told she had constipation when it was later discovered to be bowel cancer.
It’s so important to be investigated thoroughly and to get a second opinion for serious matters.
How long were you on antibiotics?
A week. A heart procedure to cure my racing heart and a knee replacement during your programme has floored me. After 3 months into ANS REWIRE I considered myself 70 percent cured of Fibromyalgia after 30 years. I have the other knee due in September. Not being able to have my proper diet ,meditate etc with this added pressure has put me on hold a little. The pain killers caused problems so have come off everything. Even through the diverticula pain on top. antibiotics also caused other problems then I had a rash on the operated leg but I’m winning. I will be on your success stories. Thanks Dan
Thanks for sharing Anita – it’s tough sometimes when we have these set-backs, the key is to regroup, refocus and gently move towards recovery again. Make sure you always stay under medical advice with all you have going on and I look forward to sharing your story one day soon. 🙂
Sorry to hear of your dice with death Dan but glad that you are still with us! I certainly understand the reluctance, conscious or unconscious, to stop going to doctors, having screening tests etc. I have found myself slipping into that pattern; feeling almost too weary in mind to bother, even if most GPs (family doctors) these days are at least approachable and sympathetic. I have even developed a “devil may care” attitude in which I actively don’t always bother about my health, as what does it matter since I have a long standing illness which no one can cure so why try and look after myself as I used to do. At other times I see that’s ridiculous and change my mind set and therefore my behaviour!
It’s a strange experience to go through all that.
Glad you are finding some lovely GPs. 🙂
I was a Radiologist for 39 years interpreting CAT scans of the chest and abdomen on a daily basis. My take-away from your awful experience is this. No one should ever ignore a severe physical symptom such as pain. In the United States, CAT scans are terribly overused but are supremely efficient in including or excluding a myriad of disease possibilities. To have musculoskeletal pain is one thing. Chest or abdominal pain can main something quite different and serious.
The woman who had four questions for herself gave wonderful advice in the fourth. If a friend or relative had the symptom I have, what would I recommend? Unfortunately, many times we would take better care of a friend or relative than we would care for ourselves. Despite being a physician, I too have had difficult interactions with other physicians. Nevertheless, sometimes we must risk further poor treatment in order to obtain what we need when we need it.
Thanks for sharing George.
Another great strategy is to stick to the facts and not our interpretation of things, I think it can annoy Doctors. 🙂
I was rivetted to your story as a similar thing happened to me. I so understand your decision making processes and reluctance. My stomach pains put me inhospital 3 times with every test you can imagine for gall, pancreas, liver and bowel. Nothing came up as to what was causing the exruciating pain. You feel like an idiot.
Any way the last liver specialist said – oh inflammation ( I thought – I could have told you that) anyway he suggested food allergies and i said yes i had them.
Weeks later when the pains were starting to increase again luckily I went to the dietician he recommended. (Once again I had put it off as i was so sick of drs etc) Long story short, they discovered new food allergies to certain chemicals and I am doing great on my new diet.
‘You feel like an idiot’ – that kind of summarise my seven years with the illness!
Glad you got some resolution around your symptoms! – thanks for commenting. 🙂
I can totally relate to this. I’m glad you’re better now Dan xx
Oooh it reminded me my own appendix story but it was absolutely opposite, due to exagerating all physical issues in the past I forced docs into “checking this pain in and out or I am not letting you go home this lovely Saturday” so I got it diagnosed in an hour or so…similarly I cornered all my docs to do all tests and diagnose me with PVFS or CFS in the first months so I can plan my healing. But I can totaly see that after CFS recovery I would feel I know better than doctors and avoid going there, as I can heal myself magically from anything:)
So I guess what I wanted to say, being overly cautious about every bit of your body can lead to too much anxiety for sure, but there has to be a balance, you still gotta listen to your body very well and check any new pain!:)
Well said Kotryna, I absolutley agree, there has to be a sensible balance.
This is why I always caution people to note and report new symptoms to their doctor. ??
Absolutely! Long before I had CFS my experiences at ER’s were always bad and they diagnosed me incorrectly every time. It,s a million times worse now.
I can totally relate to this, Dan. Thank you for sharing and glad that you are ok! I avoid doctors like a plague but if I need to see a doctor urgently, then I will seek one who is recommended, even if I have to pay for him or her privately. I have too many bad doctor experiences to know that ending up with whomever can actually make my health worse, not better.
Glad you got the message Paula – 🙂
I totally relate; I’m very reluctant to go to the doctor for anything that might be “nothing”. But while I haven’t had any experiences like this – every time I’ve gone to the emergency room, it’s either been inconclusive or something that’s easily fixed (for the record, I’ve also had constipation that had me doubled over in pain and barely able to move on my own, and it actually *was* constipation) – I do know other people who’ve had problems that they thought were nothing but were actually life-threatening.
Any time I have a new symptom that’s not going away in a fairly short time period, and I question whether I really need to see the doctor, I just think of the possible alternatives (which of course are much worse than wasting an evening at the hospital or 15 mins of the doctor’s time). My rule is that if it could be potentially life-threatening, I go to the hospital. If I’m sick or in pain with anything and it doesn’t show signs of improvement within about 3 days, I go to the doctor. End of story.
When I doubt going, I think of my friend’s husband in particular. He had had some issues with his digestive system in the past, but had been fine for a couple years. Lately though, he was feeling fluish and had been losing a little weight, but losing it steadily, for about 2 weeks. My friend said he insisted on not seeing a doctor and said he was perfectly fine, it’d pass on its own. One day, she came home from work and seeing him, it really hit her just how much weight he had lost, and he looked really sickly, and so she put her foot down and insisted that he go to the hospital. Which turned out to be a good decision, since he was diagnosed with a bad bout of colitis and a very bad infection in his intestine that was on the verge of causing septicemia. He ended up needing emergency surgery to remove part of his colon, and has one of those bag things now. And to think he could have avoided all that if he had only gone to the doctor sooner.
So yeah, any time I feel like a burden, or like I’ll just be wasting everyone’s time and resources on something they won’t be able to pin down, I just think of my friend’s husband and his colon removal, and that usually gets me out the door 😛
It’s amazing how powerful these stories are to change our behaviour – thanks for sharing. 🙂
Wow, I bet a lot of us have had really similar experiences! Last summer I had abdominal pain so intense I found myself blacking out and vomiting and spent about an hour crawling to the phone. I called my mom who lives in another state and it took her another hour to convince me to get a neighbor to drive me in to the hospital. As I had feared, the doctors found nothing, scoffed and rolled their eyes, and sent me home with a $2000 bill. I went to the GYN the next day and found that my IUD was becoming embedded and working it’s way towards rupturing my uterus – quite an easy fix luckily! It’s so tricky to make the right choices for our health when so often going to the doctor gets us nothing but humiliation and debt…
Oh Dan I can so relate to this. A couple of years ago after 16 years of fibromyalgia I had been in severe chest pain for a few months. It just felt like an intensification of the costochronditis. The pain was unbelievable but I just ignored it – what was the point in going to the doctor? I had an over-developed ability to compartmentalise as I had worked all those years with fibro and so had learnt to hide and ignore physical agony. Eventually I collapsed unable to breathe, was ambulanced to hospital and discovered that I had a severe cardiomyopathy with an ejection fraction of just 18% which was also causing symptoms of congestive heart failure. I thought I had a bit of a cold! I nearly died from not getting medical support sooner. I eventually completely healed from cardiomyopathy and no longer need heart meds. Now I’m in the process of recovering from ME/CFS and fibro. The work you are doing is awesome -thank you for being so determined!
Thanks for your comment and positive feedback ???
Don’t be hard on yourself Dan,you were not treated properly on your first visit which can be completely disheartening.Even now l go reluctantly to my doc appointment at times as they read my history of cfs/fibro and l get “that look”! The most important thing is you’re ok now!
Thanks Julie ??
For me it is somehow the other way around. Three years before I went to the doctor because I lost all of my energy, wasn’t able to do anything in the house and felt really sick. I wanted him to examine me, but he said that is the depression and sent me to psychiatry. I have a diagnosis of CFS since 2014, I went to a doctor far away for getting this diagnosis. But in my sourroundings, nobody thinks that this is anything else than depression. So now I have the same lack of energy again, not able to sit or stand longer periods of time. I was hesistant to go to the doctors’, because I don’t want to go to psychiatry again. But I made an appointment regardless. We will see what will happen.
It’s frustrating to still hear these sort of stories – clearly much more education about ME/CFS is needed!
Hi Dan. Thank you for sharing your trails and thoughts on the struggle we chronically ill fall into with the medical profession. That sounds like where I find myself, again and again. I have suffered ME/CFS for 30 years. Back then there was no information out there. I still haven’t found a doctor who understands or knows about ME/CFS. I’m in the worse flare Ive experienced. It started about 2 months ago. I have been to several doctors again, with no advice or real help. Even though I know they care for me, and are frustrated. For the first timeI am so afraid I wont recover, if I have one more flare. I am 65 and have blood cancer also. I hope to glean all I can in my foggy brain from your incredible site. Blessings to all of you.
I am a 59 year old woman who has lived in pain for 55 years after a sprained ankle as a young child. I wasn’t diagnosed with ME/CFS & Fibromyalgia in 1998 after a car accident. About 10 years after my diagnosis, my pain was so severe that my ME/CFS & Fibromyalgia doctor told me that I either live in bed or go on extended released morphine daily for the rest of my life. I chose the latter and continued my life. Now, some 13 years later, not only have I added more meds but to keep constipation at bay, I take up to seven stool softeners a night and if I am an hour or two late with my morphine, I start with withdrawals. My main problem is diarrhea and the chills. This has been going on so long that even though I take the pill to catch up, I suffer with stomach pains and diarrhea for a week to 10 days before I get better. At first I went to my doctor but never got answers. Now, almost two years later, I live on bananas, rice and applesauce to stay away from my doctor. I’m sure it’s not the right answer but going to see her is exhausting so I have learned to deal with it. I am hoping to get relief from your book and website.
Hi Lonie
It’s hard to do things to move us forward when we are so poorly.
I would encourage you to get some assistance from relevant health care practitioners to assist you with your recovery using the framework outlined. See if you can shift your focus from ‘being cured’ to ‘feeling better’ – this can take the pressure off and helps us focus on everyday things that improve our condition!
Wishing you all the best.