Severely Moderate to Moderately Severe and Back Again

Just getting around to reposting this from Facebook. Also, my blog (such as it is) is still here!!! And I got into it! Hi! 

I had the great fortune and shame to be busy enough to forget that today (technically yesterday) August 8 was Severe ME Remembrance day. 

To quote one of my dearest friends:  “This day is necessary because we are suffering greatly, dying, often forgotten even by the medical establishment,  and we have no chance of getting better without social, medical, and scientific understanding and help.  We need you to know that we exist.”

I have friends on the verge of death and others whose suffering is so great it is impossible to believe that they are not. You will never see them. They’re tucked away in darkness and silence at home.

For years I met the criterion for Severe. I still meet it on bad days/weeks. 

 BUT

I am outside every day. (Almost) I’m under a pile of eye masks and sunglasses and two pair of earplugs (huge thanks to Dylan Burns for that tip back at Reed). But I am outside all day until cold or mosquitoes drive me in. 

Today I floated in a pool. I walked from room to room, without stopping. I packed a few things and rode in a car across town (more blindfolds, earplugs and drugs. Tomorrow will be ugly. )

I’m always one screw up away from Severe. Many of us are. And I never know if this is the time I stay there. For a week after an MRI in June I was curled up in the dark hallway outside the bathroom in an eye mask, unable to converse beyond “yes” and “no”. I couldn’t look at my phone. I spent many days that month and some of July in darkened rooms, closets and earplugs. 

For most people the sun is something that just happens. For others it is something they can only dream of. I have been both of these people. Every day in the sun I am 

awestruck.

What Happened with that MS Diagnosis Anyway?

This is not the post I was writing for the May12th Blog Bomb, but it's the one I could finish and accidentally posted early.  So here we are complete with practical demonstration of limited capacity and brainfog.

Thanks to Sally at http://sallyjustme.blogspot.co.uk/ for organizing and hosting again in honor of International ME/CFS Awareness Day. To find more ME/CFS blogs use #May12BlogBomb on Twitter and Facebook. Or see the list.

(The backstory on my MS and ME situation and the experience of having both is here.)

My immune system is attacking my brain and spinal cord. There are lesions everywhere. Dozens. This, 10 neurologists in two states, 4 MRIs and a spinal tap agree, is Multiple Sclerosis. And it's aggressive.

MS treatment—Disease-Modifying Therapy (DMT Slows MS advancement by slowing lesion development) appears to be greatly exacerbating the ME. But I have to treat for MS because... potential quadriplegia among a host of other serious things. The medication to slow lesion development is working astoundingly well on the cluster of symptoms that appeared around the time as the lesions. (A testiment to what can happen in a few short decades once pharmaceutical companies realize there is a huge population with unmet need that is actually not faking it.)

There are a ton of MS drugs, especially from my perspective, having lived with a disease that has zero. But, they all modify the immune system extensively so doctors refuse to change DMTs unless there are severe side effects. I lost eight months and six appointments trying to persuade an MS clinic and a CFS clinic to talk to each other. The MS clinic defers to nobody and the CFS clinic is the red-headed stepchild of the institution, so neither were willing. I tried to educate the MS clinic about ME and convince them that my increasingly severe, limiting symptoms that worsened with each infusion  were connected to my DMT. "That doesn't happen to our patients," was the universal response. When I finally found a doctor willing to prescribe a new drug, it was more to do with patient consent than a belief that this was happening. The second DMT turned out to be worse. But it's a pill and doesn't require a monthly trip to a bright, loud infusion center. In terms of total detriment to health this is probably a draw.

I've been in the dark 24/7 since August. I haven't been able to use a computer since then. In December I lost audiobooks. Around that time I started to lose the ability, for weeks at on end, to have short conversations. Sensitivity to stimuli is out of control. I can't be in a car, even on amounts of medication I won't confess in print, for more than a few minutes without eroding my baseline. I don't know how I'm getting to my mandatory MRI next month. On bad days I have to hide under blankets with earplugs when my mom brings my food because having another person in the room is overstimulating. In between I wear an eyemask to block out the slivers of light that seep in around the blackout curtains though they are nailed to the wall. I keep a bottle of water and an applesauce tub under my pillow for when I am too weak to roll over and reach for the nightstand. There's antiemetics there too. Sometimes I spend hours fading in and out, holding onto my water before I can move. I recently and serendipitously got a combination of meds that suppresses photophobia enough to look at my phone sometimes, for a bit. I'm still crashing like crazy, though. Writing an email destroyed the following week. (Yeah, I shouldn't be writing this.) We all know this is bad. We know this is not sustainable. This is what very severe ME looks like. But the medical community does not. My doctors either don't believe in ME, don't believe I could have both, or don't understand the immediate and irrevocable consequences of not treating MS.

Is my MS actually MS? Maybe not. But it looks like MS. It is behaving exactly like MS. The description “textbook” is being thrown around. MS treatments are affecting it as expected. Is my MS caused by an infectious agent involved in ME? Maybe. Is all MS caused by such an agent? Maybe. EBV is a theory among MS researchers. Lyme disease is a candidate in the outer reaches of the "contested disease" community. No one knows because we do not know what causes MS. We don't even understand it very well. For all of their bluster, MS specialists can answer very few of my questions. Is my MS a downstream consequence of ME? I think it's possible, but have no evidence. These are all answers other PwMEs or ME specialists demand when I try to explain my situation. Debate ensues.

But It's not “academic” to me. I have to decide what to put into my body today. What I put in my body and when will ultimately determine how and at what speed I deteriorate. The goal is to stay alive and in the best possible condition so that when better treatments are developed I will be able to benefit. And I'm doing it exhausted, almost entirely without guidance, largely unable to process and recall information, and often unable to communicate or google. The extremely sick person whose medical training is AP Biology (I dissected a ginger tabby!), “used to read abstracts for fun” and "I've been sick a lot" is not the ideal candidate to oversee this situation.

Bottom line: my immune system is destroying my central nervous system. Rapidly. Every day that I am not on MS treatment this becomes irreversibly worse. On the meds, ME is my biggest problem. Off the meds, ME is still my biggest problem but MS very quickly becomes my most urgent problem. The deciding caveat? If I don't treat the MS, I lose the support of the medical system that prescribes the medications and devices I need to function in a daily basis. We're talking about things I need in order to sleep and urinate.

Lack of acceptance of and knowledge about ME have urgent, possibly irrevocable consequences for me, immediately. I do not have another 30 years to wait for the NIH to get funding, projects and physician education  rolling. I may not have 30 months before I unknowingly agree to the wrong combination of medications. Right now I’m hoping that treating for infectious agents associated with ME will help somehow— offset the unwanted effects of MS DMT suppressing my immune system or simply improve the ME in an unknown way. The research that exists is not definitive. Most of it is not replicated. I don't trust the diagnostic criteria used in most cases and it was all done on patients able to get to a clinic, much less ill than I am. Also, I can no longer process and recall the information. Yet, this is the option that currently exists so I will do it. I feel as though I am standing before a roulette wheel and the currency is not only my central nervous system but the pieces life it will allow me to have.

Year 34

September has always felt like New Years to me, the one in January simply a technicality. It's when summer turns to winter in my hometown. The overpopulation of tourists suddenly disperses and the lake becomes frigidly unswimable in a matter of days, wool socks and shorts in the same laundry load. School's just started. There's a nip to the evening air in Portland. I've been gone ten years but I'm sure it's still there. September seemed like natural punctuation. But maybe that's because it's when I began.  

My birthday is also my sick-iversary. Well, the sick-iversary of when I went from able to live a normal life, if managed, to unable to work, pay my rent or reliably get myself to a grocery store. The first birthday I spent in bed was my 23rd. Everyone deals with sick-iverseries differently: celebrate strength, grieve, treat themselves. I ignore it, go AWOL, and try to make my birthday as fun for my mom as I can. And I take comfort in the messages on Facebook from people I haven't been able to talk to in years. Even if it's something wrote they do everyday for all the birthdays, it's a reminder that I am still here, and was once out there. 

This year instead of checking out, trying to go numb and avoid looking at the mile marker of another year gone, I'm staring it down.

My 34th year, the balance sheet:

Neurologists: 8

Internists: 6

Various other specialists: 6

New diagnoses: 2? 1 for sure. 1 maybe (bringing us to a possible total of 8)
Nurses: dozens. Many amazing advocates and wonderful people.

IVs: 16

MRIs: 3

Hospitals: 3

Spinal tap attempts: 3 (unsuccessful:1, successful :1, botched:1)

Teeth filled without anesthetic: 3

New medications: 10

Unprecedented/disbelieved adverse medication reactions: 4

Precedented adverse medication reactions: 3

Physician tantrums: 2

Physicians attempting emotional blackmail: 3

Journal articles thrown at me by a Physician: 1

Chart note errors that compromised subsequent care: 3

States: 2

Towns of temporary residence: 3

Moves: 7

Dinners eaten in bed: 365

Family members displaced:1

Skills gained: 

Smart phone operation

Cheeking pills (see above re: disbelieved adverse reactions) 

Advanced IV pole navigation (sedated, in the dark, with ataxia. Woo hoo!)

Self cauterization

Blacking out windows without putting holes in walls

Ability to cry tears of gratitude 

Activities lost:

Watching the wind in the trees 

Laptop operation

Outside

Microwaving food

Looking out the window

Sunlight

Phone conversations

TV

Netflix

Occasions on which two separate friends took us in for literally weeks at a time: 2

Friends taking off work to care for me so Mom could go home: 3

Friends and family that helped us move: 6

People who tracked down my current address (no easy task) to send me mail: 10

Outpouring of support and well-wishes online from friends, family, people I haven't talked to in years and people I didn't even know: unquantifiable. Dozens? Hundreds? I lost track. 
And my sick friends with chaos and disasters of their own, no spare energy, who banded together to offer unconditional support in the worst moments when everyone else became overwhelmed. 

And the last paragraph is all that really matters. More tears of gratitude flowing now...

Comorbidity: ME, MS and Exile in Silicon Valley

The following post is written for the Myalgic Encephalomyelitis Awareness Day, May 12th, as part of the #May12BlogBomb effort to unite bloggers and spread awareness.

***

After 12 years of ME and numerous clean MRIs I began to develop new clusters of symptoms last year. I thought it was simply a new ME decline, the beginning of a long slide into oblivion, into very severe ME. Nothing to be done. It was encouraging, then, when my MRI scared the wits out of the ER doctors in my small-town hospital on a Sunday afternoon in November. An ambulance ride, admission, second MRI, a unpleasant neurologist later ("I don't believe in that" he spat, regarding ME/CFS.), I was diagnosed with Multiple Sclerosis. I demanded a second opinion, spinal tap, everything I could think of. I didn't trust these people not to misread ME.


Eventually I folded in the face of overwhelming medical evidence. After six months of disease modifying MS treatment I have some feeling back in my feet, most of the function back in my left hand and a return to normal excretory functions. Be late with a treatment, though, and they start to creep back. But the PEM, lack of stamina, cognitive impairment, the core of my ME symptoms remain unimproved.

There are lots of pamphlets and articles about coping with a new MS diagnosis. They say you will feel a range of emotions or perhaps one emotion in particular. Mine is anger.


I felt a tremendous amount of anger and rage. Not because I had suddenly had my life as I know it taken away from me by a progressive illness with no cure. Not because my future became uncertain and I would have to grieve the loss of plans I had made. I was angry because all of these things a newly diagnosed MS patient is supposed to lose, experience losing, fear losing, instability, I had already lost. Stripped away slowly over the course of 12 years, not with the support of the medical community and disease modifying treatment, but alone and under fire. And I was angry for everyone I knew and loved because our lives didn't have to be that way: in MS diagnosis I was experiencing an option we had been denied. The contrast was deeply upsetting


Now I had a "real" diagnosis and I was getting all sorts of privilege my people are still denied. I have the option to shed my CFS label (or SEID, whatever), legitimately say I have MS and receive kind and caring, even sympathetic, medical treatment. But every time I do this I am so angry for all those years of being ignored, dismissed, verbally abused. I am furious on behalf of my community that is still being neglected and abused as I betray them by hiding behind a privilege they do not have. I realize I am surprised by the lack of disgust and contempt in my clinician's expression.


People who knew me well were amazing, supportive, and the outpouring of love was humbling and touching. Beyond that, though, no one wanted to believe I could have both these diagnoses. As I searched for someone in a similar situation I no longer felt at home in the ME community. I can understand the reticence. I have always found it insulting that people with other primary illnesses pad their resumé with "CFS." To have ME/CFS is to be abused by medicine, left on your own for health solutions, to become a pariah as one's body undermines one's ability to take care of oneself. It's not a mantle one gets to wear because one is chronically fatigued while being taken seriously and receiving appropriate treatment for another primary illness. That is an insult to all of us. And I want to shout "But I've done my time! I suffered and was shunned as my body fell apart and I watched my world fall away. I am one of you! It's just that this other thing eventually also happened." Some were rude and condescending and I'd feel petty. "Yeah? That cure you're raving about? I tried it twice before you even knew ME existed," I didn't say. So many people have been sick for so much longer, I feel this is never okay.


I tried MS communities. Several members chastised me for believing in ME, for being in denial of my "real" diagnosis. They underscored the seriousness again, as if I had somehow misunderstood. Others politely wished me well. I advised and comforted someone whose world was exploding because she had become housebound. People talked about dealing with MS on vacation. I was stunned by the luxury of it, while at the same time recognizing that these were legitimate concerns, just very, very far from where I was.


It turns out many well people feel entitled to be sanctimonious jerks regardless of diagnosis. This is both comforting and disturbing. Socially, my "real disease" privilege is inches instead of miles. True, they look more ridiculous when claiming it can be cured by grapefruit. They can no longer deny it exists. They can no longer tell me its ALL in my head. It's a start. They can't take the illness away in favor or an assailed and denigrated character. Instead they minimize it to assert weak character:

"My daughter's friend has MS and she just had a baby," the dentist says accusingly and then laments modern life and extols subcutaneous B-vitamin complex injections.

"You're going to get your life back. There are people that have MS in town that no one even knows they have it," says the receptionist from my former neurologist's office.

"That's fantastic. Were they already disabled when they were diagnosed?"

She falters, " I don't know. I wasn't there then, but you have a chance to have a life."

"You understand MS medication doesn't undo damage that's already done, it slows down the progression?"

"You have to think positive! Of course you're not going to get any better if you think like this. How you think has a real effect on your health. They've done studies." 

I shouldn't be surprised. Her employer gave me the same speech 9 months earlier while refusing to order an MRI. Has medicine stopped considering magical thinking a sign of mental illness? Careful, there, don't they commit people for that? I managed not to say it. To either of them.


The other problem is that I'm still doing my time. The ME doesn't cease to exist when one receives a "more acceptable" diagnosis. It's still there. Eventually things don't add up. My MS is not severe enough to cause the disability I exhibit. I have severe symptoms and functional limitations, activity parameters that need to be taken into account for treatment, which have nothing to do with MS. An explanation is required.


How can I be disabled? I can walk. The gait is a little off, but I can. The doctors are sympathetic until they do my neural exam, which is nearly normal. And the room changes. Why is this hysteric using a wheelchair? The contempt and disgust return. No one believes "CFS" could do that. They tell me I've had MS all these years and that's why I've been chronically tired. "MS patients have fatigue." No one has a good answer for why my MRI would be clean for a decade while having MS. I am expected to commit to hours of daily physical rehab. I explain PEM and that "CFS" is a misnomer. One doctor throws the ICC at me. Another explains to me that this is very important and without it I will deteriorate, become stuck in my house, trapped in a bed, lose the use of my hands. They are basically threatening me with my own life! This is both very annoying and deeply insulting. I am now a bad MS patient, crazy and clinging to a controversial non-diagnosis out of fear and denial of having MS. It is implied that I am not taking this seriously. But I am. It may not appear so as, to me, this is just another in a long line of health disasters, The confusion, terror and loss experienced by a newly-diagnosed MS patient is expected to be new and even temporary, but it is where I and many other severe ME patients live. It is our normal.



And I am indignant. Disabled ten years, housebound five, mostly bed-bound and this is what is supposed to destroy my life? This? This thing with 100 million research dollars annually and medications, diagnostic tests and understanding physicians?


But I have a spinal lesion in my neck. Doctors' eyes widen when they look at the MRI. They try to hide it and don't tell me that in this place a lesion can cause quadriplegia. I no longer have the choice of shrinking away from the medical world in favor of being neglected rather than abused. I have to take care of that lesion (and the dozen or so others), but I have to do it in a way that minimizes the worsening of severe ME. And I am the only one concerned with the later.


I can't go home. There is no longer a neurologist to treat me and I am too motion-sensitive to make the 60 mile car journey to a neurologist (especially one who doesn't believe in ME or CFS) for every appointment. Even 10 miles is too much. Life has become a string of temporary housing on our way to the Mecca of ME/CFS treatment, where, hopefully, an ME specialist can convince an MS specialist that my "concerns" are real and need to be taken seriously. (Still working on this...)

***

Thanks to Sally Burch for organizing the May 12th Blog Bomb!


Use #May12BlogBomb on twitter and Facebook to find more blogs.

Displacement

November 9, 2014 11pm:

I watch my town shrink away backwards through the ambulance window. The ER doctor had blown off the needs of my extreme motion sensitivity saying "People with CFS, they're just a bit tired all the time." I hadn't recognized her at first. The married surname and 20 years tripped me up. She is the oldest sister of a childhood friend. But she ordered the MRI I'd been trying to get for months. I can only fault her so much. 

I'll make it over the mountain pass, to the trauma center in the valley, but I don't know what the consequences will be. I feel the beginnings of the pull in my gut and along my spine. The entire length of my digestive tract feeling as if it is trying to compact itself and force an escape up my spinal cord and out the base of my skull. I sneak a stash of chemo-grade anti-emetics and benzodiazepines out of my coat just ahead of all my muscles contracting and weakening in agony. 

I won't code or have a seizure. By the time it progresses to something the paramedics would recognize as distress, it would be an all-out, high-pressure cascade of bodily fluids and excruciating muscle contractions. And they wouldn't know what to do, except drive faster and turn on sirens, the worst thing for someone already having a massive, as-yet-unclassified autonomic reaction to sensory overload. I wait until they're not paying attention and shove the pills in my mouth.

It's a bandaid. The medication won't stop the episode, but hopefully with it I can minimize the damage. I'll still lose irreplaceable function. I just have no idea how much. 60 miles: one mountain pass, 7000 vertical feet, 30 miles up the valley. A little over an hour. I can survive anything for an hour. Knowing this is a one-way trip: whatever has happened to my health is in no state to be coped with on that medically forsaken mountain, I open my eyes and take a last glimpse of my town, bleak and empty on an off-season Sunday night. Then I steel myself against the pain and clear my mind as I throw all my focus into the now-instinctual exercises, coping mechanisms, and mental tricks to keep my body in order and my concentration from breaking.  Life is two seconds: this one and the next. Everything becomes about getting from one to the other, forcing the seconds falling behind and the seconds ahead to cease to exist. 

A Regular?

I'm putting together clothes to wear to a doctor's appointment, trying to decide which sweater and jacket I'll need: checking the weather online and thinking about how October feels here.

It's a few months shy of ten years since I came back to my hometown, cloaked in the shame of failure and an illness that didn't have a name.

Diagnosis came soon after. But there was little help involved and before the year was out, I was shuttered away like a summer cabin.

Rarely do I make it out. I spent more time interacting with this town when I lived in another state than I do now. Stuck in the house, it's years since I've been a regular anywhere but my room.

And yet as I think about October, The Replacements' "Here Comes a Regular" gets stuck in my head.

Despite being the end of a string of generations in this small town, I never fit in here. I still associate it with the melancholy, stifling familiarity I was running from when I left at 17. Seasonal jobs and a rotation of hangouts with shag carpets, faux wood paneling and hard alcohol clutched at my ankles. 

But now everything is inverted, and I yearn for that feeling. It's out there waiting along the highway and tattered back roads. The town, faded and weathered versions of my memory increasingly interspersed with the unrecognizable, though it has forgotten me, is mine.

AHRQ Draft Comments for P2P

Edit: I actually didn't mean to publish this as I feel pretty iffy about the whole thing. "Put it in with the drafts for the blog. Easy to find later," I thought. Yes, well, good job brain fog.

As the goal of the P2P program is to "identify research gaps in a selected scientific area, identify methodological and scientific weaknesses in that scientific area," it is essential that the P2P program be aware of the existing research. However, the AHRQ Report's strident and narrow criteria excluded an estimated 90% of the literature on ME/CFS. Among this excluded research are groundbreaking biological findings (ME/CFS patients' inability to replicate work levels on 2-day CPET, low NK cell function and more) that could be evaluated for diagnostic criteria. Some of this research was done with NIH grants (Fletcher).

Inclusion of the highly controversial PACE trial and focus on CBT and GET as treatments is disconcerting. As is the lack of distinction in the report between CBT as an intervention to assist patients in coping with an organic chronic illness and CBT as an intervention to correct "aberrant illness beliefs."

Noting the "negative effects of being given a ME/CFS diagnosis" while failing to discuss the benefits is highly problematic. The implication would seem to be a concern that diagnosis fuels something akin to hypochondriasis, rather than an organic illness that exists regardless of diagnosis, in which case a diagnosis may be helpful. For instance, staying within one's "energy envelope," pacing and not overexerting oneself are crucial to the patient's prognosis. Once a patient is diagnosed they can begin to implement these lifestyle changers, whereas without a diagnosis they have no way to know that pushing themselves beyond their limits may cause lasting damage (as was my experience).

Although I support the report's claims that current research is insufficient and studies need more participants, I am concerned about the way existing research was represented. Specifically, I am concerned that the authors may have erred on the side of popular bias in misunderstanding the severity, seriousness and organic nature of this illness.