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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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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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Note: Ash’s Advice is written by, me, Ash, a long-time patient with CFS/CFIDS/FMS/Chronic Lyme, etc. I am not a doctor, and nothing written here should be construed as medical advice. These are simply my musings – what I wish I was able to tell my younger, healthier self: the person I was before CFS/FMS pretty much destroyed my life. A series of letters to my younger self, and to anyone suffering through the “living death” that is Neuro-Immune Disease: CFS/ME/FMS/Chronic Lyme, etc.

Part 2: Your Life Is In YOUR Hands

You were healthy & strong. You ate the right foods, were probably active outdoors, perhaps a hiker, camper, runner, or maybe just a normal person who never had to think much about your health.

Then it all changed. You’re overwhelmingly tired all the time. You wake up feeling more tired than when you went to sleep. It takes everything you’ve got just to go to the grocery store, and you are even more exhausted for days afterward. You have headaches, perhaps constantly, and possibly migraines. You have pain… everywhere. Some spots are worse than others. No amount of Advil, Tylenol, or aspirin helps. You might have sore throats more days than not, with swollen lymph nodes. Nausea and light and sound sensitivity may be a near-constant. You might not be able to tolerate heat, or cold.

And perhaps most distressingly, you are suddenly having lapses in memory, difficulty concentrating, trouble spelling or finding the correct word. You might get confused or overwhelmed in stores.

You feel like hell. Like you’ve been run over by a Mack truck. Like you have the flu, only it goes on and on and on. Some days might be a little better and others a little bit worse, but you never, ever, feel like you used to. You start to forget what it’s like to wake up full of energy and excitement about the day’s activities. Everything, even taking a shower, is overwhelming painful or exhausting to do.

You’ve either been diagnosed with CFS/FMS/CFIDS/ME/etc.  or you have a strong reason to believe you will be.

Where do you go from here? The answer may not be the one you want to hear.

Chronic Fatigue Syndrome, Fibromyalgia Syndrome, and other Neuro-Immune Diseases,  are syndromes, a series of chain reactions in your body. There are many, many theories about the hows and whys. Your primary care provider (PCP) or family doctor has ruled out all the obvious things, likely handed you a prescription for Cymbalta, an antidepressant, for the fatigue, and Lyrica, for the pain/fatigue, and told you to live with it.

But how do you do that? How do you explain this to friends and family, who tell you that you look fine. Or who wonder why you can be somewhat active one day, and then spend the next three days in bed.

You have one job from here on in: Education. You must educate yourself as to the many theories about CFS/FMS, etc., learn all about the politics involved (and there’s a lot of politics), and find a doctor who knows what is going on but who won’t take advantage of you by pushing you into weeks, months, or years of experimental treatments (much harder than you might think).

You must become your own doctor, in a sense. Give that a moment of thought. Your PCP probably has hundreds of patients. They may have only one or two with CFS, etc. They can’t spend their down-time going to conferences to learn about the latest developments, and tracking down the latest studies and scientific research papers  about CFS/FMS/Lyme, etc. You can’t count on them to understand what you’re feeling, because unless they’ve gone through this, or had a family member with CFS, etc., they have no way of understanding it. It’s out of reach.

So despite the “brain fog” or “fibro-fog” you’re experiencing, you must do the work for them. You must find the doctors with the most experience, but not the ones that will exploit your pocketbook unnecessarily. You must learn about the side effects of every medication you take, and the longer you’re sick, the more the cascade of system failures progresses, the more medications you are going to find yourself taking.

Neuro-Immune Diseases like CFS, FMS, Gulf War Illness (GWI), etc., are serious illnesses. They are progressive. Very, very few people recover. Some people may make a partial recovery, only to relapse later. Having one of these puts you at a much higher risk of dying at an earlier age, possibly from leukemia, lymphoma, one of the other cancers that often show up in patients ill with these… and also because it puts you at a much higher risk of suicide. When you lose pretty much everything, and are isolated & in pain constantly, suicide can start to look mighty appealing.

My Story

I got “unofficially sick” in around 1992, after a martial arts class mishap. I had a headache for six months. It slowly passed, for the most part, and I regained some of the strength & energy I had lost. But then in late 1998, it came back with a vengeance, following a very stressful divorce & months of sleep deprivation (these were the “triggers”). I thought I was having a series of sinus infections. Took multiple antibiotics. But the fatigue and headaches persisted. Finally, in early 1999, I was declared to have “CFS/FMS,” given a prescription for Zoloft & Gabapentin (Lyrica’s predecessor), and told this was just what it was.

I knew I couldn’t live that way, so I moved to Virginia, back home with my mom, bringing along my 3 year old daughter (born at home with a midwife, so opposed to the “medical establishment” was I), my teenage daughter, and my home-based internet business.

I saw specialists: an internal medicine specialist who said, yep, you have CFS/FMS, learn to live with it.

Then a visit to Johns Hopkins (which I arranged myself) showed Neurally Mediated Hypotention (NMH, sometimes called POTS). This is classic CFS: the dysfunctioning of the autonomic nervous system. I got so dizzy whenever I stood up that I’d nearly faint. I got another pill for that: Florinef.

I saw rheumatologist #1, who ran a few tests, then said, yep, you have CFS & FMS. She switched my meds around a little, and said come back in six months.

Finally, I managed to get in to see Rheumatologist #2, who specializes in CFS, FMS, Lyme Disease & other tick-borne diseases, etc. She took a very different approach. First, there was an interview/exam that lasted nearly two hours. Then a series of x-rays. Finally, a tremendous number of labs, for what the internist & other rheumatologist laughingly called “zebras” – things so rare they are very unlikely to be an issue, so they aren’t tested for.

But guess what? Rheumatologist #2 was right. I had positives to a lot of zebras – very high levels of antibodies to human parvovirus, Epstein-Barr Virus (EBV – the virus that causes Mono), mycoplasma pneumonia, several varieties of herpes, and more that I’ve forgotten over the years. (Internist, reviewing the results, said “No wonder you feel so bad!). X-rays showed “reactive inflammatory arthritis” in multiple joints & spine – a type of arthritis caused by the body’s inflammatory response to viral infections. And Myofascial Pain Syndrome.

She was certain there was more – she thought I had “chronic Lyme,” a subject of great debate in the medical community. But the Lyme tests were very unreliable in those days, so we tested again and again… and in the meantime, I got prescribed more medicines than I have fingers. I also started my education in “chronic Lyme,” CFS & FMS.

With her help, I improved enough to move away from my mom’s, into a home of my own, nestled in the Blue Ridge Mountains I’d loved since I was a child.

But the challenges continued to pile up: severe bloating sent me to the hospital several times, ending with my gallbladder being removed. That caused the IBS (Irritable Bowel Syndrome – also common in CFS, FMS, etc.) to get even worse, so one more prescription was added – digestive enzymes. The constant sore throats & throat infections were addressed with a tonsillectomy – something you really don’t want to do as an adult.

I learned, and learned, and learned more, about the way the human body works, how it responds to infections, how the cascade failures of different systems happens, what all the latest theories and experimental treatments were.

And I’m still learning something new every single day.

It was about this time that people started mistaking me for a doctor, because my language had changed – I used medical terms more and more frequently; while hospitalized with the bloating, the patient next to me – in for the same issue – was relieved by my understanding of how an MRI works and explanation of what she should expect. She asked my mother where my medical practice was located. Ha!

Here’s what you have to understand: most doctor’s have little training or experience with CFS, FMS, “chronic Lyme”, tick-borne disease progression, etc.

It is all very, very complicated, there’s conflicting evidence for all the primary theories, and very little funding for the study of these illnesses. So unless you are fortunate enough to find a center or doctor who specializes in these – few & far between – it’s now your job, for the sake of your health, your family, your future, to learn everything there is to learn, from mitochondrial dysfunction to XMRV, Lyme & it’s cohorts, supplements that might help or might hurt, and exactly what effect each and every medication is going to have on your body. You will probably become ultra-sensitive to medications, and need dose adjustments. You may have some of the more rare side effects associated with some of your medications, and your doctor may not even be aware those side effects exist – how could they possibly remember the side effects for every prescription out there?

There are many websites that give good explanations of the mainstream concepts of Neuro-Immune Diseases like CFS, etc. There are many websites that promise a “cure” if you only give their nutritional supplements a try – and those can be very expensive. The latter can look like websites based in facts & studies, but may not be. There are blogs of the many victims of these illnesses, just like this one, all offering their own ideas. There are groups that post the latest medical research papers relating to your illnesses, and you need to join those groups, and read – and read again, however many times is necessary in order to understand and retain the information, quite the challenge when you find it hard to recall what you ate for breakfast.

You also have to learn about labs: what labs are done for what, and what the results might – or might not – mean. Some are interpreted one way by one doctor, and another way entirely by a different doctor.

Your doctor’s job is not to save you from the living hell of Neuro-Immune Diseases like CFS, FMS, Lyme, etc.

Their job is to give you the best medical care they are aware of & agree with.

Your job, from now on, is to become your own best caregiver, to learn about all the processes of these diseases, stay abreast of new developments & research, and bring something you think might be relevant to your doctor’s attention.

Your job is to listen intently to your body, to try to unravel the mysteries within, to figure out which medications are helping, and which might be making things worse.

Your job is to be your own patient advocate: to make hard decisions on things like experimental treatments or participating in a study if you are lucky enough to find one; working collaboratively with your doctor on your care; asking for labs you think might offer clarity; and asking for medications you think might help, even if they carry significant risk.

And finally, your job is to explain your situation to your family and friends as best you can.

This is a very complicated and controversial illness, by whatever name. And, it’s an “invisible illness.” You might feel like you’re on the verge of passing out, but the people around you might think you look fine, and therefore are fine. Families can fracture in all directions over this illness. Some people will never admit that you are really sick. You will find yourself isolated, because you are too damn tired & in too much pain to go to family gatherings, or have people over. You will try again and again to explain it, but sometimes, it’s a losing battle.

But, there is hope. There are new developments all the time, and science is taking more of an interest in these illnesses because of the discovery of XMRV, and because the number of people afflicted is soaring. And with the internet, you have an opportunity to network with others who are as sick as you, those who are even sicker, and those who have been sick for much longer. We are something of a new family. We support each other. Cheer our achievements, and work for greater research to take place. You have a huge job ahead of you. But you are not alone in it.

Welcome to the distressing world of Neuro-Immune Disease, CFS, FMS, ME, chronic Lyme, and GWI.

You are in for the fight of your life – the fight for your life.

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Those of us with severe CFS/FMS/chronic Lyme, etc., face some unique choices that the healthy population doesn’t face. Anytime we do something, beyond laying in bed or the bare minimum of necessary actions (going to the bathroom, taking the dog out, making a cup of tea), we do it knowing there will be a price to pay. How high a price depends entirely on how much energy we expend, and it really doesn’t matter  whether that energy is physical, emotional, or mental – it all comes at a cost.

We live in a world where we have very little energy to expend – we must stay within our “energy envelope.” Our bodies no longer make energy on a cellular level correctly – there are long & very complicated reasons why, but that’s beyond the scope of this post.

Suffice it to say, even taking a shower can be completely exhausting. A simple shower is usually so exhausting as to be all we can accomplish in one day.

But sometimes, we have to do something, go somewhere, and we have it within our means to accomplish that, knowing fully that we will pay for it in greatly increased pain, and agonizing fatigue, and overwhelming weakness,  for days or weeks afterward. So we face these very unique choices: do I take a Nuvigil (an anti-narcolepsy medication), which will give me the illusion, for about 3 hours,  of having energy, so I can… take Rhiannon to the grocery store for milk & stocking up on food? go to my doctor’s appointment without risking having an accident from driving while exhausted? go see my mother? go out to dinner with my eldest daughter & her husband? or maybe, if I want to do it very badly, even go camping with Rhiannon at the camp run by our spiritual community?

The Maypole Dance

Make no mistake about it: the Nuvigil & I have a serious love/hate relationship. Just as I did with the Ritalin that preceded it.

Doctors give us patients these meds because they recognize there are indeed times when we need to leave home, go shopping, have a life outside our bedrooms. But we patients know only too well that while they grant us the ability to do these things, that we will pay a steep price afterward. These things are only within reach through illusion: the illusion that our energy envelope is bigger than it really is. Our bodies have extremely minimal reserves of cellular energy. Act outside our energy envelope, drain our reserves, and we PAY.

It has a name, a stupid name: Post-Exertional Malaise or PEM. More like Post-Exertional Hell. Take the worst hangover you’ve ever had, add in being run over by a semi-, and you might be able to imagine it.

PEM is one of the most distinguishing features of CFS. This is not your garden variety “wow, I did a lot today, and I’m tired.” No, this is different, both in severity, and in how  long it lasts… two days, four days, a week, sometimes much longer, depending on how long we operated outside our energy envelopes. And, depending on how long we’ve been sick, how entirely dysfunctional our bodies are.

For a long time, I was able to keep up my business by taking a dose of Ritalin or Provigil (Nuvigil’s predecessor) when I woke up, then another when I took my afternoon rest. When they wore off, I crashed, and often went straight from computer to bed. Come Friday afternoon, I was dragging, as the meds found less & less reserves to draw on. I often slept through the weekend, barely budging except to pee & swallow a few bites.

But I did it, put myself through that, so I could afford a house, vehicles, clothes & computers & things for my girls. I made the unique choice, because I’m a mother, and wanted to provide for them as I’d never been able to provide before. Because I love them.

Staff In Hand...

Things are harder now. I’m sicker. The choice is harder to make, because the Post-Exertional Hell is worse, comes sooner, lasts longer. But still, there are times, and activities, that are worth it.

Last weekend we went camping, at the Beltaine (May Day) gathering that is a tradition for us. We had a great time. And while I had to retire earlier than I would have liked, sat down more than I would have liked, had to lay down & rest more than I would have liked, and the drive back home was somewhat dicey, seeing as it was day 3 on Nuvigil, I think I managed it better than I expected to.

I socialized – actually had conversations with people  other than Rhiannon or my doctor (that alone is quite rare) . I laughed & smiled. Dressed up a little, in a snazzy tank top & flowy skirt (instead of a nightgown). Got to watch the Maypole go up & be braided with ribbons amongst much laughter. Walked slowly amongst the Standing Stones, my antler-topped staff in hand.  Many of the Stones I’ve seen go up – they are old friends.

At least as importantly, Rhiannon got to get out amongst other people, see old friends, laugh & smile & dance.

The Wreath

The post-exertional Hell has been bad, and I’d be cursing a lot more were it not for my pain meds. I lifted too much with my still-healing torn rotator cuff (shoulder) and it’s giving me a lot of grief, as is the trashed knee. My whole body is giving me a lot of grief.

I made the unique choice, to go, to do something outside the confines of my home, and even if payback is truly Hell, I don’t regret it, not even for a minute.

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Recently, friends have suggested that though I may be sick in body, I’m still a good writer, and that maybe through my writing I could find a way to help other people, especially other women, who are going through the trials and tribulations of chronic illness, whether it’s called:

  • Chronic Fatigue Syndrome (CFS)
  • Myalgic Encephalomyelitis (ME)
  • CFS/ME or ME/CFS
  • Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)
  • Fibromyalgia Syndrome (FMS)
  • “chronic Lyme”
  • Virus Induced CNS Dysfunction (VICD)
  • or… the list goes on!

Not all of these are exactly the same thing, but many of us out here receive a diagnosis of at least two of these, if not more!

And there are all the things that go along with the above:

  • Neurally Mediated Hypotension (NMH) which is also called
  • POTS (Postural Orthostatic Tachycardia Syndrome
  • Adrenal Stress Syndrome
  • Reactivated EBV (Epstein-Barr Syndrome), or HHV-pick a number (Human Herpes Virus, of which there are quite a few varieties)
  • XMRV (Xenotropic Murine-Leukemia Related Virus) – the new retrovirus that seems to play a part (or not, depending on who you believe)

It’s not bad enough that you get really sick, you’re exhausted constantly, in pain pretty much all the time, and suffer from cognitive impairment (“brain fog”), but you have to learn all this new medical lingo, while suffering from short-term memory loss, and become your own Patient Advocate!

A Patient Advocate is someone who represents the patient, goes to doctor visits, keeps track of meds & their side effects, tracks test results, tracks down new doctors and investigates new treatments, studies the latest developments and passes this information on to doctors, arranges for tests and appointments, keeps lists of symptoms, etc. An excellent discussion of what a Patient Advocate does is at the CFS Patient Advocate’s Blog.

But most people will not have a Patient Advocate – they will have to learn the lessons the hard way.

There are many websites out there that give good information on what CFS, etc. is, though, really, that is a constantly changing thing, as scientists are learning new things all the time. And the shear number of sites can be overwhelming – especially since many of them are really supplement companies trying to peddle some herb or other nutritional supplement which they claim will cure your illness.

So, I decided to start a series of posts in a new category: “Ash’s Advice,” which is not an attempt to replace the many comprehensive, medically related, websites, but to pass on some of the often hard-learned lessons of being a patient with any of these illnesses.  I’m going to try to keep these posts short, since 1.) It really makes my back hurt to use the computer, and 2.) If you’re a patient, dealing with cognitive & memory issues as I am, info needs to be short and to the point.

Topics I hope to get to will include:

  • The importance of finding a good doctor, and how to find one. And what makes one good and another merely sufficient.
  • Dealing with your doctors
  • Lab tests you should insist upon – and what to do if your doctor disagrees
  • Learning the lingo
  • The Best Sites for Info on different topics
  • The usefulness of blogging & Facebook
  • Helping your family & friends understand
  • And lots of other things that don’t come to my currently mostly-blank mind.

And that’s the end of part one!

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There is a part of my life that only one person sees and understands: Rhiannon. I call it “The Aftermath.”

Today we ran errands. We left at 3:30 & were home by 7. Three and a half hours, made possible by ritalin (a stimulant to give me a false sense of being functional) and my pain meds (so I don’t notice the “issues” in many parts of my body).

If I had run into you at the grocery store, you would have told me how good I looked, how I must be doing better. You might not have thought I was chronically ill at all.

We race through errands, picking up prescriptions, dropping off trash, getting groceries. Often, I sit in the car while Rhiannon gets a head start on things, to minimize my time actually moving. We race, and cram in multiple things in one trip,  because the clock is ticking: when the meds wear off, that’s it. I’m done. Crashed.

Three hours is about my limit.

Then we get home, and I go directly to bed. Taking the brace off my wrecked knee, it begins to swell & ache. My back is next: it knots in spasms of exquisite pain, and  the inflammation between my ribs intensifies so that it is hard to simply breathe through the pain.

The wave of exhaustion is beyond most people’s comprehension.  Too tired to move, every muscle aching, I lay in wretched misery.

But I cannot sleep. Too much pain, and too much ritalin left in my system. I do the only thing I can do: counteract it with muscle relaxers and sedatives, and focus on continuing to breathe through the pain. The heating pad, my best friend, sometimes helps.

Today, I am distracting myself with blogging, though just moving my thumbs slowly over the keyboard on my cell phone causes me more pain in my back. Lifting my cup of tea, kindly brought to me by Rhiannon, is almost more than I can do.

But I’m blogging for a reason. I want you to understand The Aftermath. This is the dark, painful truth of Fibromyalgia & Chronic Fatigue Syndrome. This is the part you don’t see, you cannot comprehend: that the person you saw in the grocery store an hour ago is now struggling just to breathe through the fog of overwhelming, radiating pain and utter exhaustion. I can only form the sentences slowly, my brain slowly grinding to a halt in thought. Words are hard  find, sentences hard to form.

The Aftermath. And because of my illnesses, I will continue to suffer through increased pain, exhaustion, utter misery, for several days. But you won’t see that, because I do my damnedest not to go out more than once a week. The Aftermath from such foolishness can last for many days.

I do not want your pity. That is not why I am writing this.

I’m telling you this because very few people, even in my own family, understand or accept my limitations, the depth of my illness. That is one of the harshest parts of Fibromyalgia & Chronic Fatigue Syndrome. That is what splinters families. What leaves people saying “I saw her out shopping and she looked fine.” What leaves people thinking there’s nothing really wrong, that you just need to get out and do more, or that you are exaggerating your desperate situation.

It is hard enough to be ill, to feel like hell all the time. But feeling, knowing, that others don’t believe you, think you’re making it all up… THAT is even harder. It leaves you feeling isolated, misunderstood, and trapped in an illness that has destroyed your life.

I’m lucky. Rhiannon has grown up watching my steady decline, bringing me tea & making sure I eat, have everything I need, in a strange & sad reversal of our mother/daughter relationship. She listens to me note what hurts, tiptoes quietly when the migraines strike, watches the way I drive when The Aftermath starts but we’re not home yet.

Other people with Fibromyalgia and Chronic Fatigue Syndrome are not so lucky. The struggle to get a diagnosis, struggle to get their family and friends to understand, and many times find themselves alone, living, if you can call it that, with overwhelming exhaustion and incomprehensible pain. They die younger than they ought to, struck down with the heart attacks, strokes, or odd cancers that strike us. Or, they get tired… sick & tired of being sick & tired, and take their own life. But their “life” was really long gone, stolen by the misunderstood illnesses called Fibromyalgia & Chronic Fatigue Syndrome.

If you understand just a little more about what we go through, then this blog post was worth the hour, and the pain, it caused me.

I hope you do. For the sake of everyone out there suffering through these terrible illnesses.

I hope you do.

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They say you shouldn’t blog when you’re angry. And I’m angry. Probably mostly from the amount of Ritalin I’ve taken today, but also a lot of built up anger. Built up over years.

I need you people, my family, to understand something. And it seems like, with one exception, you don’t.

What I need you to understand, and fully comprehend, and ACCEPT, is that I’m really, really sick. And I didn’t ask to be this way, nor do I want to be this way. I’m doing everything I can think of or learn of to get better. I wouldn’t be shooting a quart of coffee up my ass every day if I wasn’t trying my best to get better.

But I don’t feel like you really understand this. So here it is, plain and simple:

You know how you feel when you have the flu, the really bad flu, where you’re in bed for two weeks and it’s a huge effort just to get up to go to the bathroom, and you’re so tired you don’t even feel like watching TV? And you have a constant headache, and fevers & chills & sweats, and you just plain ol’ ache in every bone & muscle of your body, and nothing helps it feel better? You just want to lay there and not move at all because you’re so tired?

Can you remember being that sick?

That is how I feel every damn day. Some days are a little better, in that there’s a little tiny bit less pain, or a little tiny bit less total exhaustion, and some days are worse, where the pain takes over and is so excruciating I can barely stand it, and I’m so tired, so physically exhausted, that it’s an effort to even breathe.

Every. Damn. Day.

For years.

The docs give me all these meds to try to make it better, but they help only a little bit. My adrenal glands are burned out.

On days when I just HAVE to do something important, like go to the grocery store, there are meds for that: Nuvigil, a drug used to combat narcolepsy, and Ritalin, which acts like speed in the body of someone who doesn’t have ADD. I hate them. I hate taking them. They make me feel wound up and ache even worse, make me agitated and emotional and generally a wreck, but they do keep me awake, for a little while, and moving, as they flood my body with something, god knows what, to get it going. To get it to burn the little tiny bit of cellular energy I have managed to store up after days of doing nothing at all but laying around feeling like I’m too tired to move.

The other down side of these stimulant drugs is that they give me the very false sense of being able to do things, to move around and be active, go shopping, or drive, or go camping once in a blue moon, or clean my room. But this is a false sense: when  the drugs wear off I crash, hard, like a car going full speed into a brick wall. My body just quits.

And then there’s the payback. See, one of the distinguishing features of Chronic Fatigue Syndrome (CFS), is that exertion causes a worsening of symptoms – a worsening of exhaustion & pain – that lasts days, weeks, sometimes months. A flare.

So here’s the thing. I feel as if, despite my being ill all these years, that I am being BLAMED for being sick, for feeling like crap. BLAMED for being too ill to go somewhere, or it taking me 5 hours to make a round trip to home because I have to lay down and take a rest once I get there.

My mom lays in a hospital bed and reports being short of breath, being weak, and we all listen and are concerned.

I mention being really tired, and how it’s going to take another dose of Ritalin to keep me going (which I’m not supposed to take at the same time as Nuvigil, BTW, but desperate times call for desperate measures) and suddenly I’m accused of laying a guilt trip on people.

WTF? Sorry, folks, but I just don’t get it. She’s sick, we all listen and commiserate. I’m sick, and I feel like no one believes me.

Maybe it’s the Asperger’s in me. Don’t know.

But what I need you all to know, and understand, is that I’m still fucking sick as hell, and instead of blaming me for missing things, and laying a huge guilt trip on me about that, or acting like I’m just goofing off, when it takes me a long time to get something done, I need you to listen when I say I’m tired, or I have a migraine, or I just can’t do any more, and understand that I don’t want to be saying that, that I want more than anything in the world to be well and full of energy.

“Whatever doesn’t kill you makes you stronger.”

Right. Well, this damn CFS, Fibromyalgia, Lyme, Epstein-Barr, etc., hasn’t killed me. What it has done is make me strong enough that I at times, with the dubious help of Nuvigil and Ritalin and caffeine, FORCE myself to do things that need to be done. That HAVE to be done.

And you see me doing that and think, gosh, she looks well, and she must be doing better. And I am doing a little better, since starting the coffee treatment and stopping the damned florinef. But the word “little” is the key. Instead of spending every moment of the day in bed, I can force myself to get up, occasionally, and do things. That doesn’t mean I feel well. In fact it virtually always means I feel worse.

And it means I’m going to feel worse for days… weeks… or maybe months, depending on how hard I’ve been pushing myself.

Frankly, I’m terrified of what is to come after the last two weeks, of taking those wretched meds nearly every day, taking more than I’m supposed to take, DOING more than my body should be doing.

There’s going to be hell to pay. For every moment I’m up and taking care of something, and driving myself to keep going, there’s going to be hell, and it’s going to last a long time.

Because I’m sick, family, and it’s time you understood it and stopped treating me like I’m just lazy or something.

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