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I went to my PCP (that’s Primary Care Provider for those who don’t know) last week for my monthly visit, and a new nurse takes me back to the room. It went something like this…

Her: “You’re here for a follow-up for…?”

Me: Chronic fatigue Syndrome.

Her: Oh, fatigue. So you’re tired a lot.
(As she starts looking for the computer’s questionnaire for “fatigue” patients…)

Me: No. Chronic. Fatigue. Syndrome. It’s an illness, and it’s in there.

She continues sorting through, finally finds it, where I helpfully point out it’s listed as just “Chronic Fatigue,” but reassure her it has the right questions. The screen is huge, and I’ve done this so very many times…

She begins reading through the questionnaire the computer provides:

Her: And when did this start?

Me: 1999
(by now I know she’s NOT in the right place, she’s doing a new patient questionnaire, not a follow-up…)(sigh)

Her: And what brought this on: stress, viral infection, accident, yada yada yada…

Me: (hard stare)
Me: (thinking: do I really want or need to get into this with this ignorant nurse who couldn’t care less? I have a blazing migraine and ear infection and just want to see my most excellent doctor. I am not in the mood to patiently educate yet another nurse today.)
Me: Possibly a lot of things, but even scientists don’t know for sure what causes it.

Her: (she looks up briefly, startled)
Her: Oh… Is it relapsing, constant, or getting worse?

Me: Constantly getting worse.

Her: Are your symptoms worse after physical activity?

Me: Oh, are they ever.

Her: And do you have: unrefreshing sleep… impaired cognitive ability… decrease in activity level that interferes with normal activities… migraines or other headaches… muscle pain… weakness… gastrointestinal pain or bloating… etc etc etc

She glances over and sees me nodding my head, yes, to everything.

Her voice has gotten softer and lower as she’s moved down the list, and she trails off before she gets to the end. She wound up not asking me all the questions, and I should know, having done this once a month for years.

Me: I can make it easy for you. I have every single one of the dozens of symptoms on the list, with exception of diarrhea.

She looks at me with surprise.

Me: Next section: Yes, medications help, to some extent, but not enough.
Me: Yes, they cause lots of side effects, such as nausea, heartburn, headaches, etc. I take meds to deal with the side effects of my meds, but no, it’s not nearly enough. I’ve been housebound since 2007.

Me: Next section: yes, I’ve tried supplements and they do help, as does meditation, massage, and physical therapy. Acupuncture was questionable.

She is busy clicking boxes.

I really couldn’t tell, when she left, if she was upset at the thought of an illness that she’d never heard of causing such issues for such a long time, if she was overwhelmed, or just didn’t care. She didn’t look up when she stammered, “I hope you get to feeling better soon.” But as I reflect back on it, her shoulders were hunched, and she kinda looked like a dog who has been beaten… or maybe like someone about to cry. I honestly don’t know. I wasn’t mean or snippy, I was just matter-of-fact.

This is what it is.

I rested my blazing head down on the edge of the table, closed my eyes against the too-bright lights, and practiced my deep breathing while I waited for my doctor to come in. I couldn’t wait to get back home, away from the lights, the ordinary sounds of life, that brought such searing pain to my oversensitive brain, back into my girl cave and the dark and quiet… one breath, one moment, at a time… but how I longed to set foot in a store, or just ride in the car without sunglasses and a scarf over my eyes…

But, This is what it is.

And what it is, is known as Chronic Fatigue Syndrome in the U.S., although in other countries – and by the WHO – what I have is ME: Myalgic Encephalomylitis.
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In my last post, I said I wanted the fire, the passion, back in my life. Over the last few weeks, I’ve done a lot of deep thinking and reflecting, while struggling every day just to keep my ship from sinking.

Well, I’ve come to some harsh realizations and conclusions, and I’m feeling pretty damn passionate.

It has become quite clear to me that the time has come for a full scale war.

A take-no-prisoners, risk-it-all, war.

It is that desperate.

My body is that desperate.

Ravaged by years of chronic illness, my muscles have withered away to nothing.

Pillaged by viral invaders, my immune system doesn’t know which end is up.

Overwhelmed by colonizing microbes and leaky gut syndrome, my gut doesn’t know food from foe.

Every resource in my body has been drained, thrown into the war effort against ME/CFS for long year after long year after long year… I was diagnosed in 1999, but sick well before that.

Hasn’t there been full-scale war before now, you ask?

Yes. At times.

But also times of resignation; of trying just to hang on, hopeless of ever improving, just patiently awaiting the seemingly inevitable. The slow, slow, spiraling downward, so slow as to not provoke a passionate response. Too tired to hope, sick of changing my meds, or trialing this alternative therapy or that.

You could call it “patient burnout,” and I suspect many of my fellow patients know just what I’m talking about. The year after year of trying to hit on a combination that would stop the downward slide without success, until you just stop really giving it your all.

But the last few months, the slide hasn’t been slow. It’s been alarmingly fast.

Now I have this looming sense of being back-against-the-wall, it’s-now-or-never. Live – really live – or die.

Because I know my body simply can’t go on like this.

It can’t sustain the fight much longer the way it has been this Summer: the periodic adrenal crises and crashes; the repeated episodes of diarrhea; the weakness and shakiness; and continued loss of muscle mass. I have only to look in the mirror, or to look at the deepening indentations in my hands, feet, or wrists, to look at the starkly showing breastbone, collarbone, and ribs, the sagging skin, to know that this is simply unsustainable.

I’m not being overly dramatic.

I’m being realistic.

And it’s not sustainable – or fair – for my youngest daughter, Rhiannon, either.

My elder daughter, Terra, is 29. She has worked hard and built a life for herself, with a career she loves in the military, and graduated magna cum laude from college while working full-time. I’m couldn’t be more proud of Terra and her many accomplishments. I’m also relieved that she has established such a rewarding and fulfilling life for herself, and that she is an extremely strong and independent woman.

Whatever happens to me, Terra will be okay.

But Rhiannon has been carrying the weight of being my primary caregiver for 7 years. She is only 18 1/2 years old. Rhiannon has mild ME/CFS herself, but more urgently, her life is on hold right now. Because of me. Because I am so incompacitated, and as I have gotten even more so over the last few months, her burden has gotten even heavier.

And that is simply unacceptable.

It breaks my heart, every damn day.

Rhiannon deserves a life, too, one where she can go and do things without worrying I am going to literally die while she is gone. Without worrying that I am going to die before she has gone to college, gotten married, and established a life for herself. Without worrying that she is about to become an orphan – her father died just over a year ago. And without the stress of my illness making her even more ill.

And you know, I would really like to have some years of life back that aren’t being lived out of bed.

I want to garden again. Walk in the woods. See my grandchildren be born – and they are not planned for a number of years yet.

Rhiannon promised me a trip to Chincoteague & Assateague Islands, to see the wild ponies, something of very special signifigance to me. We were supposed to go this Summer, to celebrate my 50th birthday.

But I haven’t left the house for the last 3 months except to go to the doctor.

Issues like these, they help bring the Fire back into your heart.

So what’s there to do that hasn’t been done in the past?

Plenty!

REFUSING to surrender to the Living Death is a start. Attitude is important!

Get this, ME/CFS! I’m not done living my life yet! I’ve got things to do, people who need me, and I’m not just going to go quietly into the dark!

Every War Needs a Good Stretegy

Strategy is vitally important, and at this late stage in The War, that means pulling out all the stops, and a lot of thinking outside the box.

It means research, reviewing all my labs, running my clinical history over again, and connecting all the dots.

If the majority of rx meds have failed to do much to make a difference, this is where I look elsewhere for answers – and for weapons to add to my arsenal.

In May, I found one big clue, one big fat juicy hint at the Enemy’s original weapon, the one that caterpaulted me into this mess, a toxin we’ve all been exposed to. Knowing that, I know how to undermine it, and begin to repair the damage.

If the invading hordes of viruses and microbes are resistant to the meds I’ve taken for years, then I hit them with something new and unexpected – this is guerrilla warfare, and the weapons I need come from the land, from the Earth, the trees and plants: Herbal Anti-Virals & Anti-Fungals.

Heal the gut and my body can absorb nutrients again. Just as importantly, my immune function can be restored to proper functioning. Since my own army of beneficial bacteria has been annihilated, I’ve recruited new ones – with something far beyond yogurt or standard probiotics, and have already had a “healing crisis,” showing that my immune system will respond.

When reviewing my labs, I was reminded I have both MTHFR mutations – and the full ramifications of those are something I’m just beginning to understand, but they sure are one big piece of the puzzle (and one many of us have in common).

There is a LOT that needs healing, a lot of systems in disarray, and if I’m neither eating correctly because of PAWS or digesting correctly because of malabsorption and leaky gut, then there are a lot of things that need to be supplemented. I’ve been researching into those, with my doctors’ help.

I’ve already found one supplement that has helped tremendously with cognitive issues, much to my shock and surprise – I wouldn’t have been able to write this post without it, and highly recommend it (I need to take it early in the day or it keeps me awake): SERIPHOS.

This is sink-or-swim.

I either figure out exactly what my body needs, thru careful research and with my doctors’ guidance, and get it and take it, or The Enemy is going to chalk up another victory.

And that’s just not acceptable.

I will not go quietly.

I want my Life back!

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I called Rhiannon, a touch of panic in my tone of voice.

I have screwed up. She made me a power smoothie before she left for shopping, and I drank it too fast.

“I didn’t even drink the whole thing, only half!” I explained.

Now, the icy drink sits in my stomach, and its chill spreads throughout my body. I have gone from warm to cold to shivering to teeth chattering to shaking all over.

It is 70 degrees outside. Two hours ago I was sitting out in the warm sun, lightly dressed. Now, I have my winter coat and fuzzy boots on, and I have hypothermia.

Most people don’t know that many of us with ME/CFS suffer from some form of dysautonomias. These are malfunctions of our autonomic nervous system – things that our bodies should handle automatically. These can affect many parts of our body. For some it affects how our body regulates – or fails to regulate – our body temperature.

Some of us also have muscle wasting or atrophy.

I have lost too much weight; most of my muscle mass, and I am struggling not to lose any more. At a hundred ten pounds, I cannot afford to.

And I cannot afford to be in hypothermia.

The shivering and shaking of my muscles is using up the valuable nutrients and energy of the high protein, RX, smoothie I just took in. I need every calorie I can consume, and every ounce of energy that I can hold on to.

Besides which, hypothermia is not a good condition for my struggling body, nor very pleasant.

I tell Rhiannon I have to get in the shower. This is beyond what a heating pad will fix.

I don’t like to shower when no one else is home. My blood pressure tanks regularly (and by “tanks” I mean 82/47, for instance). It would not do to pass out in the tub. But it’s the only thing I know to do.

Dysautonomia can also affect our blood pressure and even the amount of blood in our body – our blood volume – making both too low. This results in conditions such as Neurally Mediated Hypotension (NMH), POTS (Postural Orthostatic Tachycardia Syndrome) or OI (Orthostatic Intolerance).

During a NMH episode, the blood pressure can drop very low, often very fast, and fainting can occur. Usually, at the same time, the pulse rate goes up, putting the heart into tachycardia. There are a several different medications for NMH, POTS, and other blood pressure related dysautonomias, but they can come with some very nasty side effects.

Climbing in, I seal the shower curtain, anxious to keep every bit of warmth inside. I sit on my shower stool. I hate it, but it is necessary. I’m too weak and in too much pain to take a shower standing up.

Many of us go days or sometimes even weeks without a shower. Taking a shower or bath uses up an incredible amount of energy. Some of us cannot bathe ourselves at all anymore.

My skin is cold to the touch, cold and clammy like that of a corpse. I huddle over my legs as the hot, hot, water runs over my body.

It seems to take forever before I stop shaking enough that I can slowly wash my hair. It was certainly in need of a wash.

After 37 minutes, the hot water is running out. I’m still not sure I’m warmed up enough. I have no choice but to get out.

The skin on my thighs, on my butt, and arms, is still cool to the touch, but not as cold as it was.

One aspect of having NMH is having very poor circulation to the limbs and skin.

Emerging from the shower, I wrap tightly in a thick towel. I sit on the stool, with my head in my hands for 10 long minutes. The blood pounds in my head, and I am breathing hard.

I am dizzy and exhausted, drained and in pain. but I think I am starting to be warm again.

Too tired to move, I reach for my fone, and dictate this post, still wrapped in my towel, still sitting on the shower stool, head resting wearily on folded arms.

Now the question is, am I too warm? I listen intently to the signals coming from my body.

It has forgotten how to regulate itself. Up and down it goes: fevers, chills, sweats,  night sweats that go on all night long…

Like so many, I can’t go out on summer days when it’s over 80 because I overheat and get a fever far too fast. Getting in a car that has sat in the Sun can cause an instant fever – and an instant crash.

In winter I must bundle up extra warm against the cold.

And it seems that even when it’s 70, I must drink my protein smoothie either slowly, or on the heating pad. I felt hot when I started drinking it today.

Sure didn’t take much to change that.

These are the things that daily life with ME/CFS is made of…

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Note: Ash’s Advice is written by, me, Ash, a long-time patient with ME/CFS, FMS, Chronic Lyme, etc. I am not a doctor, and nothing written here should be construed as medical advice. These are simply my musings; a series of letters to my younger self, and to anyone suffering through the “living death” that is Neuro-Immune Disease: ME/CFS, FMS, Chronic Lyme, etc.

Part 3: On Doctors

One of the most frustrating, exasperating, and occasionally, yank-your-hair-out-and-scream, aspects of having ME/CFS, FMS, and other similar neuro-immune illnesses, is finding really good doctors or medical clinics.

Ideally, you’re going to have a Primary Care Physician (PCP) who knows enough about your condition, whichever it might be, to be there for you when you have the flu or other unrelated issues, but who also understands your symptoms, your meds, and what’s going on in your body.

Most importantly, you’re also going to need a specialist in your condition, which may be a Rheumatologist, Neurologist, etc. Rarely, the specialist can also act as the PCP, but most are far too busy.

You may “acquire” other doctors along the way – unfortunately.

About Doctors…

You will inevitably run into Type A:

They are Arrogant. And, callous, and actually fairly ignorant of your condition (although they don’t think so), and not interested in expanding their understanding.

They spend precious few minutes with you, don’t have time for your questions, and they sure don’t want your suggestions. They could care less about your feelings, and allow you very little say in your own treatment.

Like a dictator, they expect you to follow their every order to the T. They throw the standard prescriptions at you, and tell you to come back in six months.

What you’re looking for is type C:

They are Caring and Compassionate. Knowledgeable, and constantly striving to understand more about these complicated illnesses. They offer you all the various treatment options, both the standard prescriptions, “off-label” prescriptions, as well as complementary treatments such as nutritional supplements and herbs.

They look at their work with you as a true Collaboration between the two of you and other members of your healthcare team (specialists, PCP, and family members). They value your opinion, always seeking the highest quality of life for you, and are respectful of your wishes and decisions.

Or, of course, anywhere in between these two spectrums.
Even an inexperienced PCP can be okay to work with if they truly want to learn more, and are willing to learn from you & your specialist.

So, how do you find the good kind?

That’s the tough part.

It’s made even tougher because many specialists in ME/CFS & FMS don’t accept insurance at all, because they spend such long periods of time with their patients, rather than the standard 10 minutes insurance will reimburse them for.

So not only do you have to find someone near you, but they also have to accept your insurance, assuming you have any.

Get started…

To start with, you can check with the doctor finder over at my friend, and fellow blogger, Patrick’s blog, Quixotic: My M.E. Blog. It’s on the right hand side.

I can’t vouch for that list, or any of the lists out there. But the second place to look is to Google the words:

  • CFS/FMS good doctor list
  • ME/CFS good doctor list
  • Or if Fibromyalgia is your only issue,

  • Fibromyalgia good doctor list
  • This should return a number of lists from different organizations.

    If you still haven’t found anyone near you, the next place to look is on the forums. If you’ve found my blog, odds are good you’ve found forums, so ask around.

    Still nothing? Then to Google you go.

    I found my PCP by putting in Fibromyalgia and Virginia (my state), and sifting through the results until I found a practice that both accepted my insurance as well as said it had a special interest in FMS.

    ME/CFS is my biggest problem, but there are a lot more people being diagnosed with Fibromyalgia than ME/CFS, and therefor a lot more doctors with experience with Fibromyalgia, and you are far more likely to find one.

    And yes, as you might suspect, it took a very long time, cross-checking doctors with my insurance company to be sure they matched up.

    Interviewing Your Doctor

    When you go to your potential new doctor, keep in mind that you are hiring this person for the most important job there is: keeping you as healthy and active as possible!

    There are 2 kinds of first visits: you’ve been diagnosed & are being treated but want/need a new doctor, or, you think you have ME/CFS or FMS, and want to be evaluated.

    Unless the doctor you are seeing is one of the really big names in the ME/CFS or FMS world, and you are desperate to be seen by them, then keep in mind that you are interviewing them for a job, not just a patient seeing them for an evaluation.

    If your personalities clash, or you don’t like their style, and there are other doctor-candidates in your area, then go ahead and schedule the follow-up (unless they’re truly awful) but before then, try to get in to your next option.

    Do not be afraid to be bold and speak your mind, even at the first visit, especially if you’ve been sick a while and so have a “history.” How they respond will tell you how involved in treatment decisions you will be allowed to be as a patient.

    When I interviewed my PCP, I took her a printed overview of my illness – what I was diagnosed with and when – as well as a list of my meds, and some of my records. I explained the severity of my symptoms, and that I am a “very, very complicated patient.”

    As we talked through it, I really liked her style, how closely she listened, and she clearly understood that I was auditioning her for a job. She was young, but very interested in FMS, and very interested in expanding her knowledge of ME/CFS.

    Then I dropped the bombshell: my health insurance was changing, so I no longer had coverage for my Rheumatologist or Pain Management Specialist. I needed someone to prescribe all my meds, including my pain meds (many doctors simply won’t write those at all). I would continue to see my LLMD, but not nearly as often.

    I looked her in the eye and just asked her flat out, requesting she please be truthful with me, “Do you have the time and interest in taking on such a complicated patient?”

    She looked straight back at me and responded, “Absolutely!”

    I got very, very, lucky – she is definitely Type C. I see her monthly, and things have gotten even more complicated, but she has continued to do a fantastic job with a very “high maintenance” patient. She only has one other patient with ME/CFS, but is one of her practice’s specialists in Fibromyalgia.

    The First Visit – the Evaluation

    Your first visit to a new ME/CFS, or FMS, specialist for an evaluation should be long – a half hour at a bare minimum.

    Many of the best spend an hour or even two or three on the first visit, and at least 20 minutes on follow-ups, with 30 minutes to an hour being common. There are often reams of paperwork to fill out in the beginning about the onset of your illness, and usually, at least a checklist before each follow-up.

    Many specialists will order lots of lab tests, and sometimes x-rays, MRI’s, CT’s, etc, so don’t be surprised. The labs can be extensive. You don’t want to know what my record is for the number of tubes of blood drawn at one time. Just relax and think of something else.

    In Conclusion

    I know a number of patients who drive (or have someone drive them) hours to appointments with the best ME/CFS doctors out there, and they are often offered treatments that other patients aren’t.

    On the other hand, I know patients who got diagnosed by a Type A doctor, and who are still seeing them, still taking pretty much the same meds, years later, when there are new meds out. Sometimes they don’t have other options, but sometimes they don’t realize how different doctors can be, having never experienced a doctor anywhere approaching Type C.

    It’s my suggestion that unless you have a very good partnership with your doctor, and you feel you are receiving truly excellent care and being treated with respect, that you do the work of looking for someone else, and just get a second opinion on your case.

    It couldn’t hurt at all, and there might be things a different doctor would notice that the first one missed – and different treatment options.

    And that might make all the difference in the world.

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    My mother said to me the other day that my brother can’t seem to wrap his mind around the concept that I’m really sick and there’s really very little that can be done about it. He seems to still think that “if I only went to better doctors or the right hospital, they could figure out what was wrong, and could fix it and I’d get well”. He has said the same thing to me. I know he means well, but he doesn’t seem to understand some things.

    We know what is wrong with me. I have (and have had for over two decades) a diagnosis that is shared with at least one million other people in the US, with an estimated additional 3 million who have it but have yet to find a doctor who can diagnose it. It is poorly understood, although there is more research being done, worldwide. We learn a little bit more, get a few more pieces to the puzzle, every year.

    Going to see another doctor would not change anything. I’ve had more than a second opinion – there have been thirds & fourths & even fifth opinions. There have been specialists from every specialty there is to look at my case & weigh in, and everyone is in agreement.

    I have been diagnosed with Chronic Fatigue Syndrome (CFS, or alternately, ME – Myalgic Encephalomyelitis, or ME/CFS), a complicated neuro-immune disease. I also have Fibromyalgia (FMS), and chronic Lyme Disease, diseases that commonly overlap with ME/CFS.

    In July of this year, a group of internationally recognized experts came together to develop a new International Consensus Criteria (ICC) for ME/CFS, which was published in the Journal of Internal Medicine. I’m attaching it here in case you’d like to read it – this is the ICC.

    First, a note from the ICC about the name issue:

    The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).

    Here’s a taste of what they have to say about it:

    Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS)  and immune system, dysfunction of cellular energy metabolism and ion transport, and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomology.

    I more than meet the ICC for ME, which require the patient to have symptoms from several categories, and every possible other cause of my illness has been tested for repeatedly. This is what is wrong, and why I’m still sick & getting sicker all the time. ME/CFS is a progressive illness.

    I have seen:

    • Three Primary Care Providers (at least)
    • Two Rheumatologists plus the Rheumatology Department at Ohio University Medical School
    • An Internal Medicine Specialist
    • An Infectious Disease Specialist
    • An Endocrinologist
    • Two Gastrointestinal Specialists
    • Two Neurologists
    • A Cardiologist
    • An Ear, Nose & Throat Specialist
    • And one literally world-renowned Pain Management Specialist

    I have had every test, every lab (and as the Labcorp tech put it the other day, my doctor orders tests that don’t exist – they do, but only thru speciality labs), CT’s, MRI’s, EEG’s,  EKG’s, a sleep study, cardiac studies (at none other than NIH), and another cardiac study at Johns Hopkins.

    I have over 1,000 pages of medical records & lab results, all of which point to my having as “classic” a case of ME/CFS, FMS, and chronic Lyme, as a person can have. As a result of those, I also have Irritable Bowel Syndrome, Migraines, Hypothyroidism, Neurally Mediated Hypotension, Myofascial Pain Syndrome, and Inflammatory Reactive Arthritis.

    In other words, I am a “typical” late stage ME/CFS patient.

    It is believed there may be a number of different triggers for ME/CFS, which set off a chain of events in the body, similar to a cascading system failure in a computer. Once started, it’s difficult to stop. Very few people recover completely, and if they do, it’s usually within the first few years.

    This has also been called “Post Viral Syndrome.” It is fairly common in patients recovering from mono, which is caused by Epstein-Barr Virus (EBV) – they simply never get over it. Having ME/CFS is like having a slowly worsening case of mono that never ends, and it expands to affect multiple body systems. Most ME/CFS patients have very high levels of antibodies to infections such as EBV and members of the herpes family, and I am typical in that regard – my EBV, HHV-2, HHV-6, Human Parvovirus B-19, and others are off the charts.

    My first diagnoses with “CFS/FMS” was almost 20 years ago. At the time, the illness was fairly mild, relapsing & remitting episodes of fatigue, severe headaches which lasted days & I initially attributed to recurrent sinus infections, and some sleep issues. I had good weeks & bad weeks, and during the good weeks, it didn’t really seem like much was wrong. I “pushed through” the bad weeks because I had to – something most patients do, but unfortunately for us, those who push through the longest & the hardest are the ones who wind up the sickest.

    In late 1998, I seemed to get the flu, except it never left. The headaches were constant, and after three rounds of antibiotics without improvement, with incapacitating exhaustion, I and my doctors realized that something was wrong beyond sinus infections. That is when the formal diagnosis of “CFS/FMS” first shows up in my medical records.

    As the years have passed, it has slowly gotten worse. We have tried (and are still trying) every medication possible, as well as alternative therapies. I follow the clinical trials that are ongoing, and my doctor is more than willing to give me my own trial of medications that might help. Sometimes they do, and sometimes they don’t.

    I worked too long. I should have stopped in 2004, when my rheumatologist told me to. But I’d just bought this house, and had a thriving business, so with the “help” of stimulant medications, I pushed onward, pushed myself beyond what you would believe, to work a few more years. But we know now that it’s the patients who push the hardest who get hit the hardest, who go downhill the quickest.

    Now, I am primarily housebound, if not bedbound. Going out at all is very hard.

    I have incredible exhaustion which is beyond your wildest nightmares, and which gets worse after any exertion, whether physical or mental, and can be worse for days, weeks, months, etc. This has it’s own name, and is one of the defining symptoms of ME/CFS: Post-Exertional Malaise (PEM).

    As is typical, I have severe headaches, which are accompanied by intense sensitivity to light & sound. There are some patients in whom this gets so bad that they must move to an isolated area, and spend their lives in silence & the dark, not even able to speak above a whisper.

    I have pain, in so many places, a generalized ache all over my body, but also knots in the muscles and the fascia (the covering of the muscles), and also osteochondroitis (inflammation & pain in the spaces between my ribs & breastbone). The pain is not helped by tylenol or advil, it takes the strong stuff – opiates – to dent it at all. There is never a time without pain. It’s a matter of degrees.

    I have constant gut issues, commonly called Irritable Bowel Syndrome, but it goes beyond that. I have Leaky Gut Syndrome, where particles from food I eat leaks into the bloodstream. Since it doesn’t belong there, my body develops antibodies & sensitivities to it. It has reduced the number of foods I can eat tremendously, and what I do eat often causes bloating & cramps.

    There is more, but I don’t think I need to go into it any further. Hopefully, you are finally getting the idea that it’s not a matter of finding the right doctor who will magically get me well.

    I will continue to watch the clinical trials that are ongoing, and continue to hope that there will be a breakthru. I’ll also continue to try the complementary therapies my rheumatologist thinks might help.

    But seeing another doctor, getting another opinion, that’s really just not needed. Not at all. And besides, I can’t travel anymore. That’s out of reach. I’m glad we traveled and did cruises as long as I was able to.  I will forever cherish the memories of Hawaii, Alaska, the Caribbean, and the trip to the UK & Wales I did right before it got severe.

    We know the enemy, we know it’s many names – CFS, ME, FMS, Lyme.

    But what no one, anywhere, knows is how to cure it.

    Maybe, one day, they will.

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    Note: On Monday I wrote three messages to my mother, in typical Aspie style – I held nothing back. I’ve clipped a bit here, but it’s mostly intact. I’m posting it here in case you want to know what it’s really like. Be forewarned: my mother spent two days in the hospital after reading this (likely TIA). My fault. No tact. I thought she understood, I thought she knew all this. Maybe it was seeing it all in one big blurb. I don’t know. I’m just very, very, sorry.

    The Harsh Reality of CFS

    We had a miserable evening & night here. I was SOOOO sound & light sensitive, it was terrible. Nauseated, too. Had Rhia bring me my favorite granola with cashews & dried cranberries before it got worse, so I had a full tummy. She put it in a plastic bowl so the spoon wouldn’t make scraping sounds against a ceramic bowl that would hurt my head. That is who she is & how much she cares. Drank a lot of mint tea.

    Around 9 or a bit after I took a 1/2 an ambien. Slept a little, restlessly, having lots of sweats, trying to find a not-soggy part of the bed. Woke up & got up several times. At 1 or 2 am I took the other half the ambien, had woken up with this terrible bone pain in my knees and thigh bones & elsewhere. Have had that a couple times now & its why the doc checked me for the rare leukemia (test negative). Took more pain meds, every vitamin I could stand to swallow, in case the pain was from nutritional deficiencies, and ate a luna bar, which is loaded with vitamins & is a soy protein based nutrition bar. Thought maybe it was my body cannabalizing itself.

    Slept restlessly the rest of the night, up & down, pain better but sweats a lot.

    I see dr z in mid-december, btw, thinking thats a good thing. Something is really wrong, maybe its all stemming from the leaky gut, I don’t know.

    Just to be sure you know this, but CFS does in fact kill people, its a slow process, but there can be damage to all sorts of body systems, not just a fucked up immune system, and also a much higher risk of certain cancers.

    Because I’m me, with the aspergers & all, I don’t want to be beating around any bushes here. I am trying to keep fighting this, to keep going until Rhia is at least 18, and I need you to keep going & taking good care of you in case I don’t make it. Rhia and I have discussed this, that I don’t think its going to be too long now, and I can’t explain it, its just a sense of relief that the fight & struggle is almost over. I’m ready, I’m not afraid, and can feel & see God’s hand in my life.

    Maybe I’ll be surprised and live to 90 like you will, but maybe not.

    I had a lot of time for thinking last night while I was locked in my room, avoiding light & sound. I’m working on a necklace that will be mine, but as I was sanding amber in the dim light with my eyes closed, I was thinking about getting it so the edges are very soft & rounded, because while its going to be mine, it will be Rhia’s when I’m gone, and it was like I could see her nursing my granddaughter someday, and the baby was playing with it as she nursed, looking to all the beautiful colors hidden in amber.

    I decided as I worked on this piece, trying to focus on it to exclude the pain in my head, that creation is the key – that as long as I can create things, even if it takes me months to do what someone else could do in an hour, that made it worth the pain that comes with keeping going on (that and Rhia, of course). Its so satisfying to know that even if I’m sometimes, often, useless, for anything else, I can still create something beautiful to pass down, and one day it will be Rhiannon’s, as amber & fossil ivory should and often do become family heirlooms. She can re-string it to take out anything she doesn’t like, or to add something new, and in that way, she can feel me around her even if I’m not here.

    (My mother interjected that she thought I should be in the hospital.)

    Nobody’s putting me in the hospital. There is no reason, nothing acutely wrong with me. I don’t have pancreatitis or something like that that can be treated by doctors in a hospital.

    I’m just going down the path here, the long and winding road of chronic fatigue syndrome. I’m not on the verge of dying right now, at least I don’t think so, you can never tell about these things, I’m just slowly fading away.

    And that’s okay. Really, it’s okay.

    It might take years yet, who knows how long, and no one can give me a better place to be than here. Home. With my crazy pecan pie dog and pumpkin pie daughter. With my woods around me, with my stones and beads and my sanding supplies and my dremel, which is very very important right now. With all the strange things I eat, with my soft and snuggly bed.

    Home. This is where I want to be. This is where I’m staying. No one is taking me away from here, there will be no hauling me off to the hospital at the end, WHENEVER that might be, whether it’s a year or two years or ten years – I’m not going down that road of being poked and prodded, stuffed full of drugs, IV’s and god knows what else. NO! Absolutely NOT!

    WHENEVER I pass it will be looking out at the sky, looking at the trees, listening to the animals, at HOME. The way it ought to be!

    BUT I am not dying right now, I’m not saying that – just that my sense is that there comes a point there is no going back to health, and my sense is that we are there, have been there, for some time. I’ve been sick a LONG time. I’ve been struggling a LONG time. I’ve seen every doctor, tried everything anyone coulld think of. But sometimes, nature must be left to run it’s course.

    My head is hurting me & the clouds are sitting on the mountain – we are socked in. That’s about how my head feels, too – too full and pressure building in my ears. I am coming to hate migraines.

    Rhia & I also talked about the diet to heal leaky gut, with all soup & broth for 2 weeks. She thinks we should try it & is more than happy to make the soup. She is the one who has to pick up the pieces when the migraines are really bad like last night, and tiptoes & silences the dogs when they bark, brings me food & tea, and listens to me moan & groan about it. I think she is as tired of them as I am.

    One thing you should understand is that light & sound sensitivity and headaches “of a new and unusual severity or frequency” is one of the hallmarks for diagnosing CFS. There are people with this who get so bad that they have had to move out into the middle of nowhere, and live in their beds in a darkened room.

    There are people – and I know them – who cannot speak above a whisper, because even the sound of their own voice hurts so bad they can’t stand it. People who have to write out what they want on the bad days, and live their lives stuck, in the dark & silence, for YEARS. Where even the sound of a bird singing is enough to make them throw up from the pain.

    You do not know it, but you are very lucky. Because I can still get on fb, still get on the computer sometimes, still send you messages and letters and rants when sound hurts so bad that I CANNOT talk on the phone. Last night you called when it was so bad, and I had it on vibrate, and just the sound of the phone vibrating made me dry heave.

    I know you get tired of typing, and I know you just want to hear my voice, but there are times when that is just not possible, when you cause me pain and increased nausea just by calling, even if I don’t answer. There are times when the phone lights up in my dark room, and just the light hurts so bad it makes me heave.

    There is nothing at all unusual about this, nothing that makes this something to slap a person in the hospital for. This is just how this illness is. It’s what it does. You don’t hear about it much because doctors don’t understand it, and the people with “late stage” CFS are too sick to leave their beds, quite literally, and their families are too worn out from taking care of them.

    This is just what it is.

    I’ve finally come to peace with it, at least a little bit, I’ve finally come to understand that this is how its going to be, locked in the living death of CFS. That’s what we call it – living death. And the end, when it finally comes, is welcome. Is a relief. Because you cannot live this way without going nuts eventually. That is why the level of suicide is so very high – you cannot imagine how horrible it is to be in such pain, such isolation, cut off from your hopes & dreams.

    I coughed – swallowed my tea wrong and a very large puppy came to see if I was ok. To look into my soul until I told him I was alright. Life never ends. The spark, spirit, and soul, that we are never ends. He came back to us so soon so we would understand that.

    I have to go now. My head hurts & I need to rest. I’m sorry I’ve upset you, but you know how I am. Blunt & to the point. No hidden truths. No secrets. No little white lies.

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    There have been a number of questions friends have been asking that haven’t gotten answered, so here goes, in no particular order:

    • Disability: I have appealed my Disability rejection to the highest level in Social Security, about two months ago. They can take a long, long, time to rule on things, apparently – up to 16 months!!! Not making me very happy to just hang in the wind, waiting. But not much I can do about it.
    • XMRV: Yes, I tested XMRV Positive.  What am I gonna do about it? For now, nothing. Because the science is in it’s infancy where this is concerned, and ARV’s (Anti-Retrovirals) are not simple meds to be messed with unless you absolutely have to mess with them. And, because we’re giving the Valcyte a chance right now – we want to be very sure what med causes what response in me. Recently, we got a piece of good news – the first study, ever, that not only confirmed XMRV exists (scientists are fighting about this), but that there is a definite link to CFS.  This comes courtesy the WPI, whom I’m asking all of you to vote for on Facebook as part of the Chase Community Giving program. They won $25,000 in the first round. Now they – the only organization working directly on Neuro-Immune Disease – are in the running for up to $500,000 in a grant in round two. If you haven’t voted for them yet, please do – and fast! Voting is only open one week. And just because you voted for them a couple weeks ago doesn’t mean you don’t need to vote again – it’s even more important that you vote in round 2 as there’s more money at stake. If a cure is gonna come, it’s gonna come from them! So, Go Vote!
    • Valcyte: As noted above, we’re giving this a chance to work, and it is definitely working. At least, I’m seeing cognitive improvement, and sometimes I think there’s a wee little bit less overwhelming exhaustion. Sometimes. But the cognitive improvement is what is expected to come first. It takes 3 – 6 months for the majority of the improvement, and I’ve now been on it 3 months. However, there is a problem: my platelet count is dropping and is low, but not low enough that I have to stop the Valcyte. Yet. I’m finding that very depressing. It’s as if I’ve been in a dark place a long time, and someone has opened the shades… I want to see more, interact more with life, with friends, to write, to be at least a little bit more ME. And I don’t want to give that up. But I will have to, if the platelets continue to drop. At which point we’ll let my body recover a bit, and then start on ARV’s.
    • Neurologist Appointment Report: My neurologist has really changed in her attitude toward me since I told her I was struggling to get on Disability. She not only volunteered to write a letter, she wrote one that night (about 2 months ago) and I was able to pick it up immediately. She seems much more interested in me as a patient, listens more, asks many more questions, spends more time examining me. She ordered a MRI of my cervical spine (my neck), the day I tore my rotator cuff. I put it off a few weeks while that healed up a little, then had it done. Basically, it says there’s some degenerative disc issues, arthritis, but nothing that would be an obvious cause of the migraines & chronic daily headaches. We’re increasing my Lyrica and hoping that might help, since not much else has helped.

    Then there’s the complaining part of this post…

    I’m tired. Really tired. We’ve gotten about 6″ of rain this week as band after band of storms have come through. This has made me have a migraine pretty much everyday this week. Including  today. I took a fioricet when I started seeing twinkling lights in my peripheral vision.

    I’m cranky. Depressed. Frustrated. Part of it likely PMS – that’s likely also part of the migraine issue.

    I’m worried about my platelets dropping and the possibility of having to stop the Valcyte. I don’t want to go back to where I was 3 months ago.

    I’m frustrated with my house, the complete & total disastrous mess that really, only Rhia & I can deal with, since it’s our crap everywhere. I want to clean it. I just don’t feel like cleaning it. I have piles of clothes to sort through, stuff that doesn’t fit anymore, I’ve lost so much weight.

    I’m frustrated with the slow healing of my shoulder. Twice I’ve intensified the hurt – once while camping, picking up something too heavy as we hurriedly threw stuff in the car in the rain. Then there was the “dog incident.” Someone came to the door, I had been asleep, Kasha was barking furiously, on my left, and without thinking I grabbed her collar & opened the door – and she lunged until I told her no. Kasha weighs117#. Or, she did until the Kleenex & cat litter eating incidents.

    My neurologist was surprisingly concerned about my shoulder & the way my ortho blew me off. “How do they know how bad it is if they didn’t do an MRI?” she asked. Good question. If they are guessing based on how much I use it, are they factoring in the fact I’m on pain meds? And doing more than I would, otherwise? Dunno. Will ask my PCP in June – annual physical time.

    *sigh*

    Did I mention I’m cranky, depressed, frustrated, and courting a migraine again? That about sums it up.

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