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The Naive Patient

By Jody Smith

pixabay-teddy-bear-windowAbout 10 years ago I began looking online for information and answers about my mystery illness. At that time, my sleeping and waking hours were upside down. I would sleep most of the day and be up throughout the night till dawn. I spent many disturbing hours online looking for answers.

Back then, most of what I could find was pessimistic at best, terrifying at worst. Implications of heart disease and brain damage, irreversible hormonal disruption, malfunctions of the heretofore unheard of hypothalamic-pituitary-adrenal axis, and plenty more that I could not translate into language I could understand.

Confusion and growing despair

Most of what I found was written in such complex medical jargon that I couldn’t tell what I was reading. I suspected that there might have been answers if only I could comprehend what I was reading.

But with no background in science or medicine, no knowledge of most of the terminology, and passing all this falteringly through a riddled ME/CFS brain, I would end up so exhausted and so depressed that stumbling off to bed was the only recourse for temporary relief.

Perhaps the only exception to the jumble of facts and conjecture came on the site of Phoenix Rising, written by Cort Johnson, with his smiling face on each article. His online presence was reassuring, but unfortunately he could not tell me what was wrong with me or what to do about it.

I continued plowing through all the material I could find for some months despite the heaviness this search burdened my already taxed mind, body and emotions with. Eventually I decided to give up a seemingly lost cause, as I reached a conclusion which I now realize to have been spectacularly naive.

I remember at one point laughing at myself, saying to my mother, “Who do I think I am, Sherlock Holmes? What makes me think I am going to come up with answers? I have no background or training. I don’t know what I’m looking for. I mean, if there is an answer out there, my doctor will be the one to tell me.”

She didn’t know anymore about it than I did, and so she agreed that asking my doctor would indeed make sense.

Innocence waiting to be crushed

I had great faith in my family doctor back then. I hung on to this trust stubbornly, in the face of growing indications that he was not there for me.

We’d had a congenial relationship for about a decade before I got sick. He was in the avant-garde of young doctors I thought, when our relationship first began. I didn’t go to his office very often in the years before I became this ill, but I was always comfortable with him. I felt like he was on my side.

All that changed with ME/CFS. It was a gradual change, so gradual that at first I thought I was imagining things … being too sensitive, too paranoid. But eventually there was no denying the complete reversal that had taken place.

Seven years ago, I came to see him, thinking I was having a stroke. He smirked and told me I wasn’t. Then he took my blood pressure which was dangerously high, uncharacteristic of me, and the smirk disappeared. He sent me to the hospital for tests immediately.

He sent me for some blood tests and some other tests, which I’ll give him points for, but when they all came back “normal”, he had no suggestions. I guess I was lucky that if I asked for a referral to this specialist or that one, he always sent me.

But he made it clear that he knew nothing about this mystery condition, or where I might find possible treatment; and he was not going to try to learn about it. He was not going to help me.

He asked me one day if there were any things that helped my symptoms. I told him about the only thing that at that time made any difference: I said, “Going to bed.” He said, “Well, do that then.”

I did not say, but felt this reaction strongly – “I am not going to spend the rest of my life in bed!” My passion, of course, stood upon no basis in reality at that time. Every indication was that I would indeed spend the rest of my life in bed.

The fact that my doctor was perfectly fine with that really stuck in my craw.

Some good treatment but it was a very mixed bag

The neurologists and the ophthalmologist that I asked for referrals to, treated me well. Though all they could do was perform tests whose results showed that I was right as rain.

One neurologist really touched me when he said that he wanted me to understand that just because he couldn’t find anything did not necessarily mean that nothing was wrong. He said that this often happened, because the study of the brain was a relatively new science and they didn’t know enough about it yet.

He also offered the interesting reassurance that the fact that since this thing was already of a long duration, it was probably not going to kill me, because if it were going to it probably would have by now. I was actually comforted by this statement. And comforted by this response from one human being to another, so different from what I’d become used to from my own doctor.

I made an appointment with my family doctor after I’d gotten a letter requiring my participation in jury duty. I was completely crashed at that time.

Just going to my GP was enough to leave me wrung out and bedridden for days afterwards. It would have been impossible for me to drive the hour into the city and sit in a court room all day, even once. Who knew what kind of self-destruction would be awaiting me if I tried?

I took the letter in to my doctor, to get his official endorsement that I be released from this Herculean task.

This man who I thought knew me, knew the kind of person I was, knew the ordeal I was grappling with, looked at me with an unfriendly stare, and said, “And what possible reason is there that you can’t do jury duty?”

I stared back. I said, “Well, for starters, I can’t stay out of bed all day!”

Silence. I could see him back down a little. Saw the aggressive attitude ease just a bit. Saw his mind register — “Oh, right. This is her.”

No apology for being rude. He did explain himself a bit, saying he’d had a number of relatively able-bodied people that morning waving similar letters, trying to shirk their duty. Like he had just implied I was doing.

This, incidentally, is when I got my “official” diagnosis of ME/CFS. Not because he’d been intensively doing the work, but because he had to write something on the form about jury duty, he had to name my condition. I suggested ME/CFS and he wrote it down.

After our tete-a-tete about jury duty, I never went to see him again. And when he retired a few years later, I was grimly delighted to hear he was gone, and this meant I could see the new doctor who would be taking his place.

Teddy, heart and patchI have been in once to meet the new guy, and he seemed like he was alright. He did not scoff, and he was honest about the fact that he didn’t know if he could help me. He was also glad – perhaps relieved – to hear that I was seeing a naturopath who had been helping me to make progress.

My old doctor had been quite put out that I had been seeing a naturopath, and said in a sulky tone that “they use drugs too you know.” I didn’t bother engaging with him about this, I no longer cared what he thought.

I just took a deep breath, put a smile on my face and said, “She has been making me better.” Surprisingly he looked a bit abashed at that, and said, “Well … we don’t know everything.”

I thought but did not say, “You’re not kidding!”

For the most part, I have turned my back on conventional medicine. If I were to be in an accident or need surgery or some other quick intervention, I’d go to a conventional doctor. But my experience over the last decade and then some has been that for anything chronic, I would be wasting my time.

What has your experience been with the conventional medical community?

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{ 69 comments… add one }

  • Jody September 21, 2013, 12:06 am
    MeSci

    'Interesting', indeed! o_O

    So if it had been heart disease…?

    I did a quick search for how quickly various chronic illnesses kill, as I know that it can take well over a decade for many, and didn't find any clear statements on this in the time I had, but this Australian page gives useful stats.

    Great article, by the way. I do hope that some doctors read these pages. The more they realise that we prefer honesty and humility to pomposity and 'reassurance' the better.

    MeSci,

    It would be great if doctors would read our reports of what we go through. I think many of them would find it quite eye-opening if they spent a little time.

  • Snowdrop September 21, 2013, 7:25 pm
    Victoria

    As you know, Jody, I have been lucky enough to have 'normal' everyday health conditions which show up on tests, so I have faired far better than most people with chronic pain, fatigue & other miscellaneous debilitating symptoms.

    But one thing that hasn't been resolved is my lack of deep restorative sleep (despite 8-9 'sleep' hours each night).

    Unable to type or do much last week with my broken arm in plaster, I stayed off the computer 99% and you would not believe how well I slept for 3-4 nights. Even my high blood sugar with my recently diagnosed Diabetes II was almost normal (despite poor diet & little exercise over the winter months with flu & then an ongoing ankle prob).

    In my particular case, lack of deep restful restorative sleep seems to coincide with high blood sugar.

    I might suggest that EVERYONE with a sleep problem (who has cut out caffeine and any other stimulant) tries staying off the computer for one whole week (not even email or blogging) and seeing if the over-stimulated mind calms down.

    Everyone is unique and responds to different treatments, but in my case, I still believe 'sleep' and 'stress' are my biggest problems. Diet (whatever works for you), exercise (slow walking in fresh, unpolluted air), keeping the body well-hydrated and getting enough deep sleep are paramount as starting blocks to resolving some chronic health issues. (notice I said 'some', not 'all').

    People tell me they can't sleep, but when I see them on the internet spending lengthy hours researching, scrolling through lengthy articles and having lengthy conversations on forums, I can't quite believe they haven't tried staying off the computer (tv etc) – I mean literally, not turning the computer on at all.

    I am also very lucky in having a supportive GP (who believes me and follows up every request or test I ask for, even though he, personally, can't offer much help).

    Hello Victoria

    I understand your confusion with regard to PWME and lengthly computer time. I have no real knowledge of your specific level of functioning but from my housebound and cognitively compromised position I might be able to help you with your confusion regarding lengthly computer use.
    As I'm sure you know, most people want to be engaged with the world outside themselves.
    There is a level of functioning among us where one is too mentally and physically sick to engage normally but not so sick that they can rest quietly for lengthly periods because their mind is wired up and wanting release. If you can't do more than be on the computer the alternative is to lay there doing nothing at all, which I have discovered is a lot harder than it sounds.
    There is a problem with going too long but some of us have discovered that the alternative doesn't really bring relief either. I've tried. I don't sleep more or better, I find it more depressing because of the lack of distraction.
    Hope that helps explain.

  • xchocoholic September 21, 2013, 8:22 pm

    Well said Snowdrop. Some of us are here too because we feel best when supine.

    And some of us find staying up on the latest health info soothing. Once you get familiar with the medical
    terminology it's not overwhelming or stressful.

    We have a lot of incredibly intelligent, kind and well versed people here so hanging out here is
    comforting. tc … x

  • rosie26 September 21, 2013, 8:56 pm

    I agree Snowdrop, PR provides a necessary and positive distraction from the intensities of ME. I now have arranged a set up where I can lay in bed with laptop on my lap. I can close my eyes for awhile if I want to.

    I don't feel so crazy alone in my illness, others here are going through the same thing. I miss work and all the day to day interactions with others. I did deteriorate when I first bought my laptop 18 months ago, the reading and using the keyboard inflamed my ME terribly. Fortunately I discovered D Ribose and that has helped eased some inflammation.

    For me it's a toss up, computer or insanity. I choose computer. x Interestingly I have been sleeping better since having the computer, along with my melatonin tablet. I feel more positive in dealing with my ME symptoms and connected to the world from my bedroom.

  • Firestormm September 22, 2013, 1:48 am

    When I was worse than I am now, but had emerged from the very worst stage and could again tolerate a computer – and [shiver 😮 ] forum interactions – I found them preferable/more tolerable than face-to-face conversations or even telephone calls: which I found to be very demanding and very draining.

    I still think that personal interactions of that nature – quick-fire thinking etc. – are the most draining and demanding. Of course now it is all about balance – though I guess it always was really, but in different ways.

    There does come a point – reached sooner for some than for others perhaps – where the stimulation (whatever the source and with varying (I think) predictability) becomes too much and if we persevere it can indeed result in less chance of a good sleep – or even a period of relaxation and some better chance of recharging.

    We are all different but all rather sensitive to stimuli in whatever form from light to heat to mental input etc.

    What a very strange but beautiful bunch we all are :)

  • xxRinxx September 22, 2013, 2:08 pm

    My doctor was quite similar except that he did feel genuinely bad he could do squat to help me. He threw everything but the kitchen sink at me, and nothing..had every test done and somethings would be off or strange and he'd be scratching his head. His PAs were royal asses though..everytime my main doctor was busy and I had to see them, they would say '..Well you're probably just depressed, heres some anti depressants' or 'I can't find anything wrong with you' and stare at me like I was making it up! They did everything in their power to hurry me through the office and shove me the heck out. They figured if antibiotics didn't help, I was just a big fat liar.
    It wasn't until we saw something on freaking Oprah that we thought '..hey..this might be what I have!' and presented it to the doctor..and he went 'Oh..You know that sounds about right'. I just thought..'WHY DIDN'T YOU COME TO THAT CONCLUSION BEFORE!?' and he sent me to get a tilt-table test and FINALLY had a 'good'(meaning I failed the hell out of that test) result that sealed the deal.
    I dislike conventional medicine with all that's in me. I don't even take Ibuprofen for headaches. I take the three medications I /have/ to, and the rest are holistic. I take natural cures for colds and viruses, and I refuse to have another anti-biotic get anywhere near me. I will forever dislike Doctors with everything in me!

  • Valentijn September 22, 2013, 6:26 pm

    Being online gives me a way to regularly interact with people in a manner which I can handle. If I get too exhausted, I can simply say "bye!" and disappear for a while.

    It also gives me a way to do something constructive. For a while I was a moderator here, which I stopped when my OI was too bad and unpredictable for me to continue. It felt very good to be doing something to help others, while others were also helping me.

    When I got my OI treated, my ability to engage in intellectual pursuits increased dramatically. Instead of going back to moderating, I've spent my time reading reams of research, working on letters to be published in scientific journals regarding ME/CFS, writing articles for this forum, and designing a program to analyze 23andMe results to show rare genetic results or results regarding the functioning of specific genes.

    I still have trouble with novels. I can manage them once in a while but am usually a bit wiped out afterwards. Same with most TV programs that aren't very simple or something I've seen before. On good days I can sit in the garden for 10-15 minutes and pull weeds or pick strawberries.

    If I weren't online, what would I do all day? Lay there and try to sleep? Watch the birds? Think about all the things I can't do? The internet is what we do because we can't do the things we'd rather be doing. It might not be ideal, but it's the best alternative that many of us have available.

  • MeSci September 22, 2013, 7:00 pm
    Valentijn

    Being online gives me a way to regularly interact with people in a manner which I can handle. If I get too exhausted, I can simply say "bye!" and disappear for a while.

    It also gives me a way to do something constructive. For a while I was a moderator here, which I stopped when my OI was too bad and unpredictable for me to continue. It felt very good to be doing something to help others, while others were also helping me.

    When I got my OI treated, my ability to engage in intellectual pursuits increased dramatically. Instead of going back to moderating, I've spent my time reading reams of research, working on letters to be published in scientific journals regarding ME/CFS, writing articles for this forum, and designing a program to analyze 23andMe results to show rare genetic results or results regarding the functioning of specific genes.

    I still have trouble with novels. I can manage them once in a while but am usually a bit wiped out afterwards. Same with most TV programs that aren't very simple or something I've seen before. On good days I can sit in the garden for 10-15 minutes and pull weeds or pick strawberries.

    If I weren't online, what would I do all day? Lay there and try to sleep? Watch the birds? Think about all the things I can't do? The internet is what we do because we can't do the things we'd rather be doing. It might not be ideal, but it's the best alternative that many of us have available.

    I so agree. I would be bored out of my mind if I couldn't use the computer. In any case, my business involves selling things online, I buy a lot of essentials online, and I moderate/co-moderate 3 forums as well as participating in others. I get lots of campaigning emails and forward them to relevant email groups.

    I have a great thirst for knowledge, and learn a huge amount online – things that help me and others. If I want to identify an animal or plant, I look online, and sometimes post photos on ispot to check the identity for my nature diary.

    I take photos and videos and edit them on my computer. I'm trying to develop a business making nature videos, and the internet has been vital for learning how to do things, getting video and audio software and using it.

    I have copied all my favourite vinyl music onto the computer and created mp3s.

    Computers are a huge part of many people's lives, and thank goodness for them!

  • xchocoholic October 2, 2013, 11:36 am

    I Googled why are doctors jerks and found some interesting
    articles. One by a doctor caught my attention. He suggested
    we thank our doctors for taking care of us. That really
    opened my eyes as far as how I looked at the doctor
    patient relationship. I had been looking at this completely
    from a job angle, not human interaction. I thanked
    my doctor yesterday. : )

    fwiw, the more I learn about our bodies and
    how different we are, I appreciate how complicated
    working in health care must be.

  • MeSci October 2, 2013, 12:40 pm
    xchocoholic

    I Googled why are doctors jerks and found some interesting
    articles. One by a doctor caught my attention. He suggested
    we thank our doctors for taking care of us. That really
    opened my eyes as far as how I looked at the doctor
    patient relationship. I had been looking at this completely
    from a job angle, not human interaction. I thanked
    my doctor yesterday. : )

    fwiw, the more I learn about our bodies and
    how different we are, I appreciate how complicated
    working in health care must be.

    I'm a bit puzzled. Maybe it's a national thing, but I always thank service providers, shop assistants, etc., when they provide a service, unless they have already started serving someone else.

    What do you say when you leave the doctor's office (which we call a surgery in the UK, rather irrationally, I think!)? Just 'goodbye'?

  • xchocoholic October 2, 2013, 1:36 pm

    lol. MeSci

    I see you're a very literal person and I can appreciate
    where you're coming from. I used to write tech info
    as part of my programmer analyst job. Every letter
    had to be exact. I look at
    what everyone writes on a message board as informal
    communication. Imho, that's a big part of what makes interacting
    interesting.

    I do normally thank my doctors, etc etc etc. I was just keeping
    my post short since I'm using one finger and saw
    no need to elaborate.

    I thought the doctors point of view was interesting.
    I've been looking for more positive comments by
    healthcare professionals to try to understand their
    perspectives on how they do their jobs. I learned it's
    not a job.

    tc … x

  • Astrid13 October 15, 2013, 3:10 am

    Please watch "Under Our Skin" a documentary about Lyme Disease. It may help you find all the answers you've been seeking for so long. Best of luck!
    Love, Astrid

  • Banksy October 24, 2013, 1:04 pm

    im moderate affected. i can put my self in shape to work with people hour, two and sometimes more. my friends dont understand, some are even doctors(13 bloody years i have cfs) but when get back home i have wife that understand. only thing i regret is i cant take her out to see the world. made the money meanwhile but still dont have strength. i still consider my self lucky. my message is: dont forget to live because u aint gonna get rid of this shit. u will have better or worst days but that's it.

  • Wayne November 8, 2013, 6:07 am
    Victoria

    Unable to type or do much last week with my broken arm in plaster, I stayed off the computer 99% and you would not believe how well I slept for 3-4 nights. Even my high blood sugar with my recently diagnosed Diabetes II was almost normal (despite poor diet & little exercise over the winter months with flu & then an ongoing ankle prob).

    Hi Victoria, so nice to see your post here; it's been a while! — I purchased an "Earthing Pad" for about $50-$60 or so, and have found it invaluable in keeping me from burning out so badly on the computer. Helped the burnout by as much as 90%.

    Take care! :thumbsup:

    Wayne

  • dannybex November 25, 2013, 10:46 pm
    Wayne

    Hi Victoria, so nice to see your post here; it's been a while! — I purchased an "Earthing Pad" for about $50-$60 or so, and have found it invaluable in keeping me from burning out so badly on the computer. Helped the burnout by as much as 90%.

    Take care! :thumbsup:

    Wayne

    Hi Wayne,

    I remember you getting one of these awhile back. I was interested too, but the place I lived in had NO grounded outlets…not one! :) But I moved since then, so now I can reconsider one, if I can round up the pennies.

    Anyway, I was wondering if you could describe the 'burning out' in a little more detail? Would being on the computer tense you up, increase stress levels, etc.? Or something different?

    Also, do you know if it makes a difference if one is using a flat screen (I have a used Mac), or one of the older PC-monitor type computers?

    Thanks Wayne!

    Dan

  • alex3619 November 26, 2013, 2:02 am

    All power outlets are three plug outlets in Australia, with grounding. I have seen this in at least two other countries as well. Two plug outlets went out with the arc in most of the world.

  • Wayne November 26, 2013, 3:48 am
    dannybex

    I was wondering if you could describe the 'burning out' in a little more detail? Would being on the computer tense you up, increase stress levels, etc.? Or something different? ……… do you know if it makes a difference if one is using a flat screen (I have a used Mac), or one of the older PC-monitor type computers?

    Hey Dan,

    Prior to getting an earthing pad, I would often start feeling my energy draining within seconds of getting on the computer. If I was having a better day, I wouldn't notice it quite so quickly. On bad days, I would feel quite nauseous and it would literally feel like a vacuum cleaner sucking the energy out of my solar plexus area. Headaches were another common problem, flaring up within minutes of getting on the computer. Again, this depended on what kind of day I was having.

    On days where I was doing better and did more, I could easily end up with a computer related PEM, or hangover as I would refer to it (spacey and disconnected). Part of it was likely a part of mental PEM, but the computer hangover was definitely identifiable. I experience similar things when driving from some intense EMFs coming off of the dashboard. I want to learn how to ground myself while driving, as my driveable distances have dwindled down to about 20-30 minutes or so.

    I ran across a video once on how to ground a vehicle, but haven't been able to find it. If you run across anything like this as you do your own research, please let me know. — Thanks. :)

    Wayne

  • dannybex November 26, 2013, 4:53 am

    @Wayne — thanks for your speedy reply — I appreciate it, and of course always good to hear from you.

    I was doing a little reading (or probably too much reading) on the subject this afternoon, and am not sure what to think, as it seems like we're being bombarded my increasing levels of EMF's from everywhere — especially 'smart meters' (?), and the increasing numbers of cell phone towers. There was a site I saw earlier where you could find the number of towers in your area (within a 4 mile radius) and there were over 340 in my 'hood'.Kind of overwhelming, but I suppose there could be a dozen other reasons I've been doing worse since moving here. Nevertheless, I appreciate your input, and will consider a small mat, and maybe some bands…but am trying to find a cheap voltmeter (a guy mentions a radio shack model for $20 on amazon) but I haven't found it yet.Gotta get off the 'puter for now! :)

  • Creamcheese February 15, 2014, 5:56 pm
    Firestormm

    When I was worse than I am now, but had emerged from the very worst stage and could again tolerate a computer – and [shiver 😮 ] forum interactions – I found them preferable/more tolerable than face-to-face conversations or even telephone calls: which I found to be very demanding and very draining.

    I still think that personal interactions of that nature – quick-fire thinking etc. – are the most draining and demanding. Of course now it is all about balance – though I guess it always was really, but in different ways.

    There does come a point – reached sooner for some than for others perhaps – where the stimulation (whatever the source and with varying (I think) predictability) becomes too much and if we persevere it can indeed result in less chance of a good sleep – or even a period of relaxation and some better chance of recharging.

    We are all different but all rather sensitive to stimuli in whatever form from light to heat to mental input etc.

    What a very strange but beautiful bunch we all are :)

    Yes! A beautiful bunch which I have sorely missed the past few years during my absence. It has been a slow motion return to internet activity for me. It is a comfort to know that others do know and try to understand what I express, whether clear or through a foggy mist. Can avoid what may upset me and pay attention to what is supportive and/or interesting. Is good to see that this PRF site is still in motion. _Susan (Creamcheese)