Monday, March 4, 2019

Spoon Theory, Hit Points, and now, The Money Model of M.E.

Everyone knows money.  Most people know what it's like to come up short.

Based on that, here's a way to explain the energy depletion experienced by people with M.E.

Image: background of assorted coins. 
Text: 
What if you never knew when you would get paid, or how much money you were making? 
Then, what if prices of goods and services varied wildly from day to day,
making it even harder to budget? 

On top of that, what if you were often robbed, or lost all your money?
With finances like that, every time you spent any money it would be a gamble.
You’d never know if you'd have enough money for the next thing you needed.
Think “energy” instead of “money,” and that’s life with Myalgic Encephalomyelitis.
The Money Model of M.E. (or “cfs”)

Budgeting Energy on a Constant Deficit


I never know how much energy I'll have in a given day, so I can't plan ahead.

I never know how much energy it will cost me to shower and get dressed, to cook a meal, or even to make a phone call.

Sometimes, it's like losing money: I might suddenly lose all my energy, with no idea where it went. And I can't even hope to find it down the couch cushions.

Sometimes, it's like I've been robbed: someone negative or a stressful situation comes along and saps all my energy. Whatever plans I had must be scrapped, because I had to use up my energy negotiating with a difficult person or problem.

And then, I never know how long I will have to work, to earn that money back. That is, how long I will have to rest and de-stress before I have energy to do anything else. And let me tell you, resting completely enough actually is really hard work. I have to restrain myself from doing stuff, and retrain my brain not to get stressed about all the stuff I'm not doing.

So, if I said, "Hey, I'm going to take away all your money, but every now and then I will give you some, and then I'll charge you for everything you need, but I'm not going to tell you ahead of time how much anything costs," well, that would be just ridiculous, right?

But that's what it's like to get sick with Myalgic Encephalomyelitis.

Spoons


You've probably heard of the spoon theory. It's a well-known model of the energy depletion experienced by people with various neurological diseases like M.E., Lupus, Fibromyalgia, "cfs," etc.

Basically, you start the day with so many spoons. Say, a dozen. If it takes one spoon to make and eat breakfast, one spoon to shower, one to get dressed, and one to walk, drive, or take the bus, then you've already used up four spoons before you've really done anything for the day, and you only have eight left.

What that doesn't explain is how not only does the number of spoons you get can vary from day to day, but the number of spoons it costs to do something varies, too, and people can rob your spoons.

Image: symbols for various activities are lined up in columns beneath one spoon, two spoons, three spoons, and four spoons. Text: The Spoon Theory is a creative way to explain to health y friends and family what it's like living with a chronic illness. Dysautonomia patients often have limited energy, represented by spoons. Doing too much in one day can leave you short on spoons the next day. If you only had 12 spoons per day, how would you use them? Take away 1 spoon if you didn't sleep well last night, forgot to take your meds, or skipped a meal. Take away 4 spoons if you have a cold. The Spoon Theory was written by Christine Miserando, which you can check out on her website www.butyoudontlooksick.com www.dysautonomiainternational,org
Dysautonomia International Awareness Advocacy Advancement

Hit Points


You might have seen this variation: the hit points model. It uses "hit points" like in a roleplaying game, instead of spoons. That makes sense, since just like different characters at different levels in a RPG, different people have different numbers of hit points; that is, different amounts of energy.

Also, I like how it explains that people can sap you of hit points. But it doesn't explain how you can be a Level 8 Fighter one day, and some other day you're Level 2 all of a sudden, for now known reason.

Image from a tweet by They call me Mister Vimes @mistervimes
Text: Had a conversation on "spoons" and "emotional energy": I use "hit points" instead of spoons. Daily adventures wear down your hit points. Rest restores them over time. Some people are clerics and they help fill your hit points. Some people are vampires and steal your hit points. 9:33 AM, 24 Feb 19, Twitter for iPhone
I like the idea that some people can add to your energy, but really the only way they can do that for me, is by spending their energy to do something I would otherwise have to do myself, like cook for me or wash the dishes for me. Then, not having to spend my own energy gives me more to spend on other things like showering and getting dressed.

Where Shortfalls Come From


So, the way that fits in with my Money Model is that someone can buy something for me with their money, if they want to help me out. But all too often, people cost me money, without even knowing they're doing it.

Then add to this, that I'm one of the people with M.E. who experience intense pain along with the intense exhaustion. The amount of pain fluctuates. Like a day when I've got a cold or flu on top of The Usual Sickness, a high pain day means -- you guessed it -- low energy. Just like you can't earn money when you're out sick, I don't get energy when I'm in pain.

Yoink It but Please Give Credit. 


I hope you'll find the Money Model helpful for understanding your neuroimmune diseased friends and loved ones, or helpful for explaining your own energy deficit to others. Feel free to use it, but give the credit to me, Creek. Thanks!

Friday, September 2, 2016

A new mascot for M.E.

The M.E. community has been stirred into unusual activity for spoonies, by the recent research by the Naviauxs, Gordon, et al, showing the peculiar metabolic profile of M.E. patients.

"Despite the heterogeneity of CFS, the diversity of factors that lead to this condition, our findings show that the cellular metabolic response is the same in patients,” said Naviaux. “And interestingly, it’s chemically similar to the dauer state you see in some organisms, which kicks in when environmental stresses trigger a slow-down in metabolism to permit survival under conditions that might otherwise cause cell death. In CFS, this slow-down comes at the cost of long-term pain and disability....This work opens a fresh path to both understanding the biology of CFS and, more importantly to patients, a robust, rational way to develop new therapeutics for a disease sorely in need of them.” -quotation from UCSD News

This metabolic condition's getting described as being like hibernation, so a whole lot of cartoon bears have been cropping up in MEmes. It's time to correct that picture, and give some exposure to our real nearest metabolic cousin, the dauer worm, Caenorhabditis elegans. Let us (gently) embrace our new mascot, not a bear, but a lovely little worm who even comes, as seen in its wikipedia photo, already wearing our awareness color. 

Thanks to the ME community online for input into the development of this graphic. - Creek



Sunday, August 28, 2016

ME Patient / ME Parent / ME Dog

"Dream Dog" collage by Creek, using EllaServiceDog photo by MarkMathis on wikimedia commons. 
Yep, I'm both a patient with M.E., and a parent of people with M.E.  I get asked that a lot - which am I , or, yikes, am I both? Yes, I am both.

And how is a dog going to help? Read on.


It's hard to be a patient with M.E.. I think it's maybe a little bit harder to be a parent of someone with M.E.. Hard to watch your child suffer and have no cure to offer. Hard to act as patient advocate and explain to doctors and dentists, schools and the world, about how your kid has an illness they either never heard of, or don't believe in, or are completely misinformed about. 

Few people are completely informed.

And if a lot of people think an M.E. patient is a hypochondriac, probably just as many people think an M.E. parent is some sort of Munchausen's monster, thinking their child ill. Like that doctor way back when: 

Me: Well, we finally got the disability paperwork for my daughter approved. 
Doctor: Disability? Why would you want to pin a label like that on a teenager?

Said teenager could not attend school, pursue hobbies, or even hang out with quiet friends. The kid was disabled. The kid had already been disabled for a couple years. The kid was relieved that there was at last official recognition of the fact! Yet that doctor saw it as something I did to my kid, labeling. Because like most doctors, he was completely misinformed about the illness and didn't understand the level of debility it can cause. And not knowing me or my kid, he thought that one of us was inventing the whole thing.

That's hard for a kid to bear, when the kid is suffering not only from pain and exhaustion but from the loss of all those activities, the loss of a normal life. 

It's hard for a parent to bear, too, when we've seen our children dwindling away, first suddenly and then month after month, sick and sicker, and trying so hard to stay active, and finally giving up, and maybe if we're lucky finally, after making themselves sicker still with the effort to be well, finally being told they must maximize the little bit of energy they have by "pacing," conserving, not pushing. 

It's also hard for a parent to have the care of a sick child. Any parent knows how hard it is even when the kids merely have flu or an ear infection, and hell, those things are over in two days to two weeks, and the kid is back to running around, playing, going to school, tearing through the house driving you crazy sometimes with how intensely active kids can be, and you're so grateful for that energy being back.

But with M.E., the sickness goes on and on, for months and years, with the night-wakings, and the vomit-clean-ups, and the barely-effective pain meds, the soothing teas, the sitting up nights and worrying and trying not to look worried. Every bath-time means a nervous vigil, knowing how dizzy the kid gets, in the tub. 

And it's not even anything like your kid having the flu but never getting well, because for one thing it's worse than flu - more like mononucleosis with a concussion on top - and for another, as it drags on and on, without relief, there's the growing suspicion that your kid will not be one of the lucky ones who gets well within six months, or three years, or after puberty ends. Your kid stays sick, and you research, and try various doctors and protocols, get tests, change treatments, and you have to wonder, if it gets no better, if gods forbid it gets worse, how will your child manage when you're gone?

Plus, being disabled by chronic illness does not mean getting to rest. Life is still full of the same challenges that face well people: things breaking and needing repair, money running out, events coming up good or bad and causing stress, having to move house, needing dental work, needing surgery. Coping with racism and homophobia. Trying to help fight global warming. It's all just a little bit more difficult, when everyone's sick all the time forever .


So yes, it's hard to have a kid with M.E., and yes, it's hard to have M.E., and oh, indeed, yes, it's amazingly hard to be the parent of a person with M.E., or two, plus have M.E. yourself. But you deal with what life throws at you, as best you can, and hope it gets no worse.

Crazy as it may sound to those who do understand the enormity of this disease, there are still times when I feel like a failure because I have not achieved more, never published that novel, never shopped around that screenplay, never traveled to all those places I dreamed of... but you know what?


I am freaking amazing. I have one of the nastiest diseases on the planet, my children are horribly chronically sick too, and yet we are alive. We are somehow surviving.

How?

It helps that Hazel and I did get disability, and it helps that we now have caregivers, and it's going to help when we have a care-giving support dog for my severely-ill daughter. 


A couple of people have asked me how a service dog can help a person with M.E. Here's my answer:

What can a service dog do for a person with M.E.? It's not "just" being a companion. Sure, her dog can comfort her when she's in pain but is that a real service dog? Well, Hazel's dog will -
- Help her downstairs because she's weak and dizzy.
- Help her out of the bath and make sure she doesn't drown.
- Pull her wheelchair.
- Fetch and carry things for her.
- Go get help if she is vomiting or passing out.
Hazel also has PTSD so it's not "just" comfort but a potential life-saver that her dog will also -
- Guard and protect Hazel.
- Sense impending panic attacks and ward them off.
- Help her relax and get to sleep.
- Wake her from nightmares.
- Provide reassurance.
There have been nights I have fallen asleep on the hard floor beside Hazel's bed, while keeping vigil as she recovered from a panic attack and tried to get to sleep. I love Hazel. I'm her mom. I don't mind doing that if she needs me to. But you know what? I'm disabled by chronic disease, too, so I need my rest, and there are some things a dog can do better than I can.

So we've got a fundraiser going, to get the dog (that might be cheap if we can find a good candidate to adopt from a shelter), and to train the dog (more expensive than the cost of the dog itself but about half the price of most service dog training because we have an awesome trainer lined up who understands our limitations), and for the dog's food and vet bills.

If you can help, we'll be so grateful. Please share the link and contribute if you can to
Hazel's Helpful Hound. 


Having an ME dog will make it a whole lot easier for Hazel to bear being an ME patient and for me to bear being an ME patient and ME parent. Having an ME dog might even be part of the answer to that scary midnight question, how will my daughter manage, when I'm gone?

If you're a person with M.E. or a parent of a person with M.E., you might want to consider getting a support dog too, if you can.

As for us, Hazel's birthday is coming up in a couple of weeks. I'd love it if we could all give her the help and hope of a hound. 

Many thanks to those who have already contributed! 
Nicola, Cathy, Ray, Martha, Ted, Jack, Heather, Liz, Glenys, 6 Anonymouses, and K who has put up a $1000 matching fund if we can raise $1000 by the end of August. We are now over halfway there! 

Tuesday, April 26, 2016

Awareness Wrap-Up: Manicures for a Cause


Stuck?
Can't go out to a protest. Can't go out to a nail salon. Conquering the Can't's here. Let your fingers do the marching, right in your home. I created these Awareness nail wraps to help make us invisibly ill people visible, and to raise funds for research.

No Stink!

These custom Pajamaberry Jamberry wraps are nontoxic, biodegradable, scent-free, and easy-to-appy! They're perfect for Spoonies. And I've got a lot of other styles for you to check out, and am always adding more.

Stick?

The wraps are not those tacky stickers from drug stores. These have a special adhesive that goes on with heat and comes off with coconut oil or non-acetone remover.

Stock...
I sell the stock line of 300+ Jamberry catalog styles, too, on my Jamberry website.

Special
Get in touch if you'd like to purchase any of these Awareness manicure wraps, or if you'd like me to design a custom wrap for your own cause or fundraiser event.They're a special order not available at the above website link or from any other Jamberry consultant. 


I'm on Facebook at Pajamajamberry
ME Serenity Triangles

GWI Yellow Ribbon Camo

Fibro - Lyme - ME Heathers Tartan
Fibro - Lyme - ME Heathers Tartan Close-Up

Gulf War Illness

Fibro Flight worn with Fibro Batik 

Slice of Lyme

ME Butterfly Release

ME Triangles & Fades

 


Friday, December 25, 2015

Pain vs Holiday Blues

Pain (Dolore, Prayer). Antoni Madeyski, marble, ca 1898, now in National Museum, Warsaw, photo via wikimedia commons. 


#1 Seek Social Support.  #2 Hit The Gym. #3 Stay Off Facebook. #4 Reframe Your Thinking. These are CNN's “Four simple steps to beating the holiday blues.” Not a bad article but for us spoonies, it requires a few edits and additions.  

Those four steps may be a good start to staving off holiday blues, for a lot of people, but if you are chronically ill it can be hard to do both #1 and #3 at the same time, as Facebook might be your only way to seek social support. So maybe go to Facebook, but confine yourself to groups where you can chill with your spoonies, and either completely ignore all those jolly and bright posts or share them with those who understand the limits that constrain your holiday jollies. 

That #4, “Reframe Your Thinking,” includes volunteering and that’s actually something I see a whole lot of disabled, chronically ill and otherwise in-need people doing. You might be blogging too, or posting, in support of others. Some medical advocacy and activism, sharing a meal, sharing a laugh: for those of us who can only make small and occasional contributions, we need to remember those count. From what I see, people in need seem to be always aware of the needs of others, too. So give yourself some credit when you go to reframe your thinking. 

#2, Hit the Gym, can sure be impossible for the chronically ill. I’d like to change that one to, Care For Your Body. Maybe you can go to the gym or take a run or a walk, or maybe it's going to be some restorative yoga postures in or beside your bed. Taking Care of Your Body could just be taking your meds and supplements, getting some acupuncture, eating a sustaining meal. Do what you are able, to support your best possible physical health, and don't stress about the things you can't do. 

But how not to stress when you’re stuck in a body full of pain? I like something my dear old dad always said when carrying a crying baby: "Look at the Wonders of Nature." It can help take you out of yourself. You may not be able to see much nature in the place where you're stuck, even out a window, but maybe you can watch some uplifting nature videos. Maybe you have a shell or rock you can marvel at, or maybe you can do this thing I enjoy on bedridden days: take a mental trip to a beautiful spot in nature, closing your eyes and recreating in the most exact detail you can, each feature of some beautiful natural spot. 

Okay, so let's make "Look at the Wonders of Nature" be #5, and also add #6: “Look at the Wonders of Art.” Art’s a lot like Nature – isn’t it an astonishing natural phenomenon, that humans create art? Also, art can take you out of yourself, or it can remind you that others share your feelings: pain, holiday blues, loss, have been depicted in various art forms in ways that can help us feel at least less alone, when we can’t transform or transcend the feelings we’re stuck with right now, just because it happens to be a holiday on the calendar. 

Then there's the financial thing. If your finances are like mine, you made that little "huh" sniffing sound, felt that hit to the center of your chest, when you read in CNN’s article that someone’s holiday season calendar includes, "a Broadway Play and a Knicks game." Hahaha, ho ho ho, must be nice, eh? Whatever we spoonies can imagine we would love to do to lift us out of the blues, may be out of reach. So here's my Lucky #7 Special for the chronically ill and impoverished: “Find Something You Can Reach.” Maybe you can't do it today but you can envision doing it by a year from now, or so.

For myself and my also-chronically-ill daughter, I’m working toward several goals. Some seem almost unreachable: a trained service dog, a van with a wheelchair lift, and a comfortable adjustable bed, are as far from my daughter’s current financial possibilities as the wish to be well enough to travel across the country to her well sister’s university graduation is far from her current physical possibilities.

But I’m working on earning and saving and raising the funds for those needs, in small increments. I’m setting up a charitable fund for my daughter. We are too ill to work or have a real business but I can read tarot as a thank you gift for donations, and raise a little money through selling these nontoxic biodegradable nail art wraps: My Own Little Business Startup,Pajamaberry Jamberry 


Perfect for a spoonie: business in bed. That helps me have some small but lucky #7 goals toward our larger goals. Even if all I can do is share some nail art online, I’m doing something. Plus nail art that I can do in bed and it doesn't make me sicker with toxic fumes! That’s a little fun that maybe even Ms Broadway Knicks doesn’t have! (Hm, I wonder if she’d like to buy some, to wear to the show?)

#8 is a variation on #1. Seek social support, but perhaps not human society. Humans are sometimes very unsupportive. Get together with Ms Knicks and she might say, “cheer up,” or “you don’t look sick.” We spoonies can benefit a lot from animal companionship. They don’t make those blunders. So our #8 strategy is, "Snuggle a Pet.” If you haven't got a pet, can you find a friend or a visiting pet service to bring you one on loan even for an hour? Allergic? Snuggle a plushie. Scatter wild bird seed and enjoy the company of birds. Or again, resort to videos: Cute Animals abound online.

Now because I like the number 9 I’ll add one more and end there. 



#9 is, “Get Creative.” Even if you can only be creative in a tiny way for a few seconds, do that. Even if your creative abilities aren’t what they once were, just play. Allow your creativity to be sucky. Make an ugly doodle. Write a bit of doggerel. Invent a new sandwich, take one bite and throw it away. Or think up your own creative new way to beat the blues and maybe some of those won't suck after all.

So to review, here are our new nine strategies: #1 Seek Social Support. #2 Care For Your Body. #3 Be Selective on Facebook. #4 Give Yourself Some Credit When Reframing Your Thinking. #5 Look at the Wonders of Nature. #6 Look at the Wonders of Art. #7 Go for Some Reachable Goal. #8 Snuggle a Pet. #9 Get Creative.

In conclusion, remember that this too shall pass. It’s just another day, just another season, so let’s not make more demands upon this day or season than on any other. Let’s not make demands on our own emotions, that we might not be able to meet. If we can’t be merry let’s be sorrowful, let’s be worried, let’s be stressed, let’s be kind and gentle, but let’s just be. Let it be, until it's something else once again.


P.S.: If you're looking to help in the fundraising effort for my daughter's needs for a service dog, a van with a wheelchair lift, and a comfortable adjustable bed, bless you! Please go here for a PayPal Donate button. Thank you! 

Monday, August 17, 2015

The Hairless Appropriations Committee



This disease* must be really mild, right? If it normally gets less funding than Male Pattern Baldness? Right?

Wrong.

ME/CFS* is actually more debilitating than most other medical problems in the world, including patients undergoing chemotherapy and HIV patients (until about 2 weeks before death).”   Canadian Consensus for ME and CFS
“Research has shown that ME/CFS* has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or hemodyalisis.”       Professor Malcolm Hooper and Eileen Marshall
“My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my ME/C.F.S.* patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses [HIV and ME/CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”         Dr. Nancy Klimas
"As a person living with HIV, watching the daily suffering of my partner who has chronic fatigue syndrome, I can tell you without hesitation, chronic fatigue syndrome is much worse than HIV. It's unfathomable that his disease is even named something as belittling and dismissive as chronic fatigue syndrome." Randy Ordonio, Curator for FaeFactory.com and Director and Co-founder of InvisibleDiseases.com 

Okay, that's bad. So the Senate Appropriations Committee plans to increase funding for ME,* or CFS,* or whatever it's called.* Right? 

Wrong. Despite the suffering of millions, over decades, leading to death by heart disease, cancer, leukemia or suicide, the SAC plans to reduce funding. Really reduce it. Like, to zer0. $00.00, nothing, zip.



Whoa, what a drag. And, you people with ME* are too sick to do anything about that, huh? 
Right.
So I guess you'll just have to lie there feeling shitty and take it, until you croak, huh?
Wrong.
Well, what are you gonna do about it? 
The question is, What are you going to do about it?
Ha. Well, there's not much I can do about it, is there?
Wrong again! Try writing to the Senate Appropriations Committee. It can't hurt. You could write, "Please, can we have some more funding to find a cure for ME*? Or do we have to show up in DC with our cordless electric razors and make all your heads match the capitol dome? We'll give ya Male Pattern Baldness!"

Just kidding. No actual threat to any member of the Senate, real or fictional, is intended here. 
Okay, so, write a letter? I guess I could, if I knew who to write to and what to say. 
Thanks! HERE is all the information you need. 

* So what is this disease actually called?

It's called ME, Myalgic Encephalomyelitis, by the World Health Organization, but the CDC decided to lump ME in with something it calls "CFS" or Chronic Fatigue Syndrome, and not even most doctors are sure what that means but it certainly sounds more relaxing than Myalgic Encephalomyelitis. Like, hey, I got Fatigue here, so I'm just gonna lie down on my fainting couch and whiff up the smelling salts for a mo but  no worries, I'll be in shape for the next waltz, Chauncey. But yeah, no, it's actually really awful and hurts and wipes you out and disables people horribly and looks like it's got a contagious thing like maybe a virus that kicks it off so, maybe you'd like the Senate to do something about it so you won't come down with it, too, huh? So go, you! Write a letter! Whoo, you're my hero! (See "HERE" above.)

Tuesday, May 12, 2015

Today: The Personal and the Political

Today is our annual Awareness Day and I'm celebrating by crashing so hard I felt like I couldn't do anything to raise awareness. I wrote this blog post anyway, and had to come back and edit it to highlight the awareness raising it reveals: while it's mostly a personal update, the personal is always the political when you have an low-funded invisible illness. 

Before edit, I just said pretty much that I had nuffin to say, so go look at other places instead, referring readers for example to these two sites:

 May 12  has some good information and a new site has just been launched by the producers of coming documentary, "Canary in a Coalmine." Check it out here: #MEACTION

Then I mumbled all humbly, "and If you want to know where I'm at today, read on."

Now I will invite you, if you want to see how the personal illustrates the political, read on. 

Today marks the ninth Awareness Day since my two then-young children and I returned from a trip to L.A. on 5 May 2007 and all three of us were slammed by the worst flu ever...and thus began our journey into the pit. Because in past politics killed some of the best research being done, time and again, our doctors were unable to spare us eight years of suffering. 

Today, I'm delighted at one daughter being well enough to complete her second year of university study at age 18, across the continent from home, while working a really intense real-life professional job. I'm devastated that the other daughter, despite getting better care, is still confined to two rooms, sicker than ever. What is it that allows some ME patients to recover spontaneously while others only become more ill? Will science ever be funded, to explain this?

Today, I'm grateful for the care I'm receiving from integrative MD's like Dr Brian Bouch and Dr Faseh Hameed, acupuncturists like Dr Audra Lehman and herbalists like my family farmer and cannabis cooperative organizer, DJ Pete. Without every one of these people's input I'd be feeling far worse than I am. The politics here, is the politics of availability. Few impoverished ME patients have access to integrative specialists, acupuncture, cannabis and other "alternative" therapies, and "mainstream" medicine completely fails them, leaving them to the mercy of unhelpful and even damaging treatments. I'm grateful to be one of the lucky few, but angry that it's luck, when all patients worldwide should have access to really helpful treatment

Recently, I'm intrigued to learn that I'm a mutant. Dr Hameed ordered the test and the result is that I'm compound heterozygous for the MTHFR mutations C677T and A1298C. With my doctor's help, I can now learn about the impact of the mutations and ways to address their effect on metabolism. Already, using a different form of B12 than I formerly did, I'm seeing improvements. Personally, I'm glad to have a doctor who saw the usefulness of the test and ordered it, and will help me address the defect. I'm sad to know that the politics around this disease make it unlikely most doctors are aware that they should test for MTHFR mutations in their ME (or "CFS" or related diagnoses) patients. 

This year, I've been too ill to follow the research and politics closely, but I do get glimpses. I'm excited as research provides new proofs of physical evidence of the damage caused by the disease, but frustrated as some continue to dismiss it as psychological in face of all that proof to the contrary --- while the press, when they do pay any attention, hail each successive discover as "the first evidence that ME is a physical illness."  I'm aggravated by the relegation of M.E. to a funding ghetto, but thankful for every penny that does get allocated to real scientific study. As difficult as it is for me, personally, to follow all those ups and downs in ME research and politics, it's a shame that they go on without most peoples' knowledge, considering that ME and/or CFS affect "more Americans than AIDS, lung cancer and breast cancer combined, more people than have multiple sclerosis or cystic fibrosis..." yet all those diseases get more attention and funding. (Quotation from http://www.name-us.org/ResearchPages/ResEpidemic.htm where citations can also be found.) 

Today as always, the personal is political in M.E. I'm discouraged to have my menstrual cycle kicking in again, with all its attendant exacerbation of symptoms. I'm relieved that this offers an explanation for recent worsening of symptoms like dizziness, exhaustion, and migraines. Of course, although there is plenty of evidence that health is strongly impacted by hormonal changes in ME patients, whatever their gender, and although such studies would shed valuable light on the impact of ME on the endocrine system, there are no studies on menstruation and M.E. 

And today, I'm wincing as I recover from dental work. But I'm thrilled to be receiving dental care at last, again, the MediCal system having finally repaired its judgment error of denying regular dental care to adult patients, thereby increasing our risk of heart disease, cancer, diabetes, dementia and more. My personal experience of difficulty accessing health care is not limited to me, or to people with ME, or to disabled people in California, but is the experience of people with low incomes everywhere, increasingly even in countries once known for progressive health care coverage. The politics of health care need to be about providing care and preventing disease, not about denial. 

I'm seeing that every paragraph here could easily be expanded into an entire lengthy blog post. And I'm laughing at the adverb. Easily, in the sense that there's a lot of material to cover. Impossible, in the sense that already I've blogged in my head at length about all of it, over the months and weeks, but already made myself nauseous and dizzy by typing what's here, now, today. I, personally, do what I can, when I can, but like most ME patients I can't do much. Our society, politically, has failed us in funding for research, in access to care, and from medicine to journalism to government, failed to take seriously a devastating illness affecting increasing millions of people. 

Today, I wish you all well. With all my heart, today and always, I wish all of us with invisible illnesses a compassionate community and a real cure. If you're well, rejoice in your health, know that tomorrow you could be one of us, and please help us raise awareness of M.E., today.