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?


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 and Director and Co-founder of 

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? 
So I guess you'll just have to lie there feeling shitty and take it, until you croak, huh?
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 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.