Sunday, December 12, 2010

In My Shoes


Why don't I give them away? Theyre piled in a box in my closet, gathering dust.

Tap shoes saw hard use when I was young. Later, occasionally I
d dance for my own pleasure and my kids amusement.

Soft dance shoes. Last time I tried to go country dancing I felt strange after just two dances---so dizzy and weak I headed home with my head throbbing, thinking, “Drat, relapsed again.” Early on I thought getting exercise should help.

Hiking boots, near-new. A year into the illness, thinking I was well I returned to work in state parks. Each day was harder. Each night I came home in tears. After one month I had to leave the job I loved.

Office shoes share crate-space with flip-flops. When not at parks, I worked writing and editing from home. Juggling home-schooling my kids with researching and grantwriting, I could even work at the beach with my laptop.

Power shoes: second-hand, but the right look for that jeans-and-pumps Hollywood meeting I never got. When my screenplay made quarter-finals in the Zoetrope Contest, I thought I might need those shoes. Turned out I was too ill to shop the script around building on the contest momentum. Now I can neither research nor write anything lengthy: words swim. I listen to audio books, I rarely blog.

Water shoes. Ahh, kayaking. A leisurely paddle upriver was a favorite way to spend our day, my kids and I, spying on swallow colonies under bridges, sneaking up on herons in tall reeds.

Running shoes. At the height of my cross-country kick I ran track laps on weekday mornings and took to the trails on weekends, working up to a comfortable 10K.

Today I can't walk a mile, and my shoes are socks. Thick socks warm toes chilled by low circulation. Bright-colored socks cheer me. Plushy thigh-highs and cozy tights for snowy days.

My kids are ill too, so triple the doctor visits, snow boots over socks. After our home was foreclosed because I could no longer work, we had to move to a rugged, isolated area where we could afford rent. Trips to the doctor are treks through snowy mountain roads, so the socks had better be warm.

The importance of socks in our lives inspired my friend Siobhan and I to create Sock It To ME/cfs. We can
t march, but our socks can march for us, in public art displays like the AIDS quilt, each sufferer represented by a personalized sock.

We announced the project and opened the website, SockIt2MEcfs.org, and socks started coming in: knit, crocheted, denim with studs, sailcloth, leather. We hope to march garlands of them through the Washington Mall and to the WHO, and festoon meetings with their bold statements of the individuality of millions of sufferers. We hope this project will help raise awareness and funds for research and patient services. We hope. Edit: Sock project canceled due to illness.

Hopes are all we have. Hopes are what really fill that box in my closet. Hanging on to those shoes shows my trust in strides being made by researchers and steps now advancing toward treatment. Hanging on to them symbolizes my expectation that I’ll be well and walking---and dancing, hiking, kayaking, and working---in my shoes again.


(This is an edited version of my submission for the "In My Shoes" contest at http://me-cfscommunity.com/ a  resource for articles and networking in the ME community. Every now and then, I can write a little, straight from the heart. Editing what I wrote is very hard for me as it's nearly as hard for me to read my own words as to read someone else's. This contest's theme clicked with me. Sometimes I can write a little when I get inspired by a call to action. I rarely blog now because I can rarely write at all, but I will try to remember to copy here what I do manage to write.)

Sunday, September 19, 2010

Testimony to CFSAC

I can't write much these days but I do manage the occasional brief advocacy piece. Here's what I wrote for the CFSAC meeting and if I weren't so sick right now I would have had the details up here about where to write and when the meeting is but now the deadline for input is past and if you have found this blog you are probably one of those people who already know when the meeting is.

I'm not sure if there's any value in my blogging now --- if I can even manage to write --- there are others who do a better job of reporting the actual news around ME/cfs, XMRV and MLVs, the WPI, the CDC, and all. But I'd like to share my stories and they're not always awful so when I can I will blog again. Meanwhile, on we go to the letter:

To Wanda Jones, Executive Secretary of the CSFAC, Kathleen Sibelius, Francis Collins, Thomas Frieden and Elizabeth Unger:

I am very ill and you are very busy so I won't take up much of your time with my contribution to the public testimony for the upcoming CFSAC meeting.

Another reason for keeping this brief is that today is my son's 17th birthday. I want to devote what energy I can to making this as pleasant a day for him as possible. This is the 4th birthday he has been ill. Imagine spending your 14th, 15th, 16th and 17th birthdays---and all the days between---lying in bed: your entire span of high school years lost to constant pain.

There's so little I can do to provide comfort as I also am ill, unable to work and provide the comforts that a healthy parent can bring to a sick child, from pleasant distractions to decent medical care. In any case, there has been no decent medical care, no appropriate proven treatment, for people with our illness. But now at last promising treatment is at hand.

There is no time for us to wait. Every day that funding is delayed is another day I don't work. Every day wasted on redoing the same old studies, retracing the same old research steps, re-positing the same worn-out theories, is another day that my son lies in bed in intense pain.

The change has got to happen now for us and for millions like us. We need you to use your knowledge and positions now to make that change happen.

Not only is the link of ME/cfs to MLVs strong, not only has the research been confirmed, not only has the new research strengthened the initial evidence, not only has XMRV been proven susceptible to antiretroviral drugs already approved in treating HIV infection, but beyond all that people who have been able to do so have tried HAART and similar antiretroviral treatment and they have improved.

Can you imagine functioning for years and years at 40% of normal activity? Think of any action you feel responsible to take, anything you enjoy doing, anything you dream of doing, and cross it off your to-do list. Wash dishes? Take a vacation? Make a difference in your community? No, no, and no. Lie down and endure the pain.Can you imagine living like that?

If someone said that a drug already in use for other illnesses might restore you to 80% activity in mere months, would you not wish to try that drug? Or would you soberly insist that clinical trials and prescription approval be delayed until the pathological mechanism of the retrovirus was fully understood and independently confirmed in double-blinded studies at multiple research facilities and brought to publication and subjected to further debate?

Suppose it was your child lying in the next room, bravely trying not to worry you by moaning or complaining? I am sure you have both the compassion and the imagination to see the need. If I were well enough I would be standing right in front of you today making this demand on behalf of my child, myself, and all of us many millions, if that would make any difference. But you don't need us to stand in front of you. You know what we are all saying to you, and to our doctors, and to the press, and to our elected representatives.

Fund Clinical Trials Now.

Thank you for your attention to my brief appeal: I hope to give my son good news after your committee meets.

Sincerely,

Monday, August 23, 2010

Still Alive!

Writing is increasingly difficult but just a quick note now. I think most of my few followers know me on Facebook but in case anyone doesn't, this is to let you know I am indeed till here, just not able to keep up with blogging.

So much news I'm too sick to write about, but the big ones right now are the opening of the WPI and the upcoming release of the Lo-Alter paper on XMRV.

Learn more at http://wpinstitute.org/ and cfscentral.com

Thursday, April 15, 2010

Better Days

There are better days.

Between my last post and this one, I had a ruptured ovarian cyst that nearly made me pass out, put me on Darvocet and laid me flat for most of three days.

Today, amazingly, I had some energy to spend.

I got up at 4 am, prepared and served 3 meals, washed 4 sink-fulls of dishes, put away 3 loads of laundry, wrote 2 business letters, filled out 6 medical forms and cleaned 2 catboxes, but I still can't go to the ball.

Poor Cinderella! Even the good days are catch-up days. The floors are still dirty, there are more dishes and more laundry to wash, I hoped to vacuum, I was wanting to bake something, there's snacks and dinner to fix and I promised to get some writing done for The Project.

Beyond that, there's a long to-do list, and more piles around the house---the house we moved into nearly four months ago, with boxes still piled high and furniture still not in place and the dog fence still not built, which would spare me that painful walk on bad days. Piles of paperwork unfinished. More contacts to make. I haven't gotten an answer from my disability lawyer or my doctor about medical tests. If they knew how hard it is to clear my brain to write each email or lift the phone to make each call, would they be more responsive, not force me to ask two or three times?

Yesterday was a bad day, and it was all I could do to get dressed. Walking the dogs had me nearly collapsed double on the ground, so back I went to bed. My weller kid will travel for several hours this weekend to a regional choir competition and there's no way I can accompany her. In better days I would have been one of the parent chaperones, one of the drivers, would have brought along my sicker kid. Now all we can do is wish her bon voyage and good luck.

I went to a movie once this year, and to a play once. It was all I could handle, though I rested up for days before and after. In better days I used to hike, dance, kayak, travel, volunteer, garden, so many things lost to me now. There's so much more I long to do, beyond what I just have to do for basic maintenance. Being sick, just basic maintenance is a dream.

That's life, sometimes we get sick, sometimes we stay sick for three years, or thirteen, or twenty-three. We have to let go of some things. I've only been sick three years so far. It could be worse.

But that's just it. It might get worse.

On a really good day, like today, I can get quite a bit done, but it's still not enough to catch me up.

Women with ME/CFS often see symptoms worsen with perimenopause. How can I plan for the possibility that I'll be worse? With so much undone already, how would I survive, sicker than this?

Maybe I could get help?

I'm only making it as well as I am, now, with a lot of help. This week, for example, my sister took me to an emergency doctor appointment for an acute problem. She did grocery shopping for me twice. She cooked dinner for me and her out of town guests, family from far away. When the guests came to visit me I had to be in bed for their whole visit, and they picked their way through my filthy house and while we talked they folded laundry for me.

It's hard to imagine what that visit would be if I were sicker, how my kids would survive if I were sicker, what would be left for me if I were any sicker than I am now. It's already so hard, and I have to prepare for the possibility that it will get harder still. How?

If my disability case is approved, maybe I could apply for in-home assistance, but I've already heard that there are so many budget cuts these days, it's almost impossible to get in-home assistance.

Is it pathetic that I spend part of one of my better days worrying so much? What will happen if I get sicker, if I don't get disability insurance, if my sister moves away? So many things could go wrong and to worry about them would be considered responsible, realistic, planning ahead, if there were actually anything I could do about them.

Maybe I can just avoid getting sicker, by avoiding pushing myself: more damage is caused every time I push. That is, I must somehow do even less on my better days.

Sunday, April 11, 2010

a flare or relapse

Aching all over, horrible feeling of pressure in head, chest pain. Want to be lying down but too achy to lie still. Looking for distraction but reading or looking at screen increases headache. Lonely, isolated, not depressed. The mountains and the sunshine and the budding trees all are still beautiful and pleasing, I have hopes for tomorrow and next week, there are a thousand things I want to be up and doing, so much to look forward to. But right now is a flare or a relapse or whatever you'd like to call it.

I take what measures I can for comfort. Hot tea, hot baths, sitting in the sun, lying down and riding out the dizzy spells or worst pain. A flare or a relapse is almost meaningless when there are no periods of wellness between, just rises and falls in the degree of pain. Days when I can wash some dishes, days when I can't.

The illness has worsened with activity, with every attempt to work, and with the two times I had to move house. I push myself to keep up with a bare minimum but the simplest paperwork waits in a pile: it hurts my head to try to read it.

My kids are ill too and it's that that gets me up out of bed. If it weren't for having to get them some tea and something to eat I don't know if I would get some for myself. I swept the kitchen yesterday but haven't made it to vacuuming or mopping in weeks. I try, and when it hurts too bad I stop, and I hope that tomorrow, or next week, I can catch up.

Today I'm hoping if I conserve my energy very carefully I'll be able to make it to town tomorrow, to take one of my kids to the neurologist. If I'm not better than this tomorrow I'll have to cancel that appointment. If I do make it to town tomorrow, I'll likely be out of commission for three or four days afterwards. That's how it goes. Save up energy, use it as needed, recover.

Because doctors are typically uninformed about this disease I do my best to inform myself and them. When I have a little brain power available, some of it has to go to this research, as I search for some way to help myself and my children. There is no cure, there are many treatment protocols, nothing helps everyone, we keep trying, we keep hoping.

Some of my energy goes to an advocacy project to help raise awareness of this disease. Being involved in some positive action helps me keep my energy and hopes up. I do believe, from all I've read, that researchers are on the verge of discovering cause and cure. It can't be much longer now. It's just a matter of keeping hope alive and budgeting energy, just a little longer.

But while I ride out one more rough time, with Duck Soup on and the sound off so it won't be quite so lonely but the movie won't hurt my head, with the computer to talk to as long as the brightness is turned down so the glare won't hurt, with the ability to type a little now, but no ability to go back and read and edit what I've written, just for now, for today and for this year and for three years now, it sucks. It really sucks and no I'm not brave. I'm just living with the bad that got dealt me. We all get some bad, and we get by somehow.

It's unfair. It's a life sentence. It deprives me of my ability to work and I loved working. It deprives my kids of the normal experiences of childhood and adolescence. I do all I can to give them some scraps of experience outside the prison of this illness but for one of them it's a big deal to get to go to school, and for the other it's a big deal to be able to sit up for a couple of hours, out of bed.

It's frustrating. Anger at the unfairness has nowhere to be constructively directed. It's microbes, a retrovirus probably, unfightable for now.

Actually there is one place that anger can be directed constructively: misinformation. Errors about the nature of the illness and the best treatment are what's the word... I need to stop this, the words are dropping and the pain increasing as I try to write... errors proliferate. They're perpetuated by doctors, who ought to know better, and by journalists and by all the people who "know somebody who used to have chronic fatigue."

Anger, frustration, loneliness and pain, all fuel what constructive work I can do, when I've got any energy at all, to increase awareness of the facts of the disease.

Sunday, March 14, 2010

An engaging project calls for volunteers.


Edit: Project canceled due to illness and lack of healthy, energetic volunteers.

It effects more Americans than AIDS, breast cancer and lung cancer put together. It causes more functional impairment than diabetes, heart failure or kidney disease. It creates a level of disability comparable to Multiple Sclerosis, chemotherapy or the final stages of AIDS. It strikes men, women and children. It costs the US $26 billion annually. It has occurred in epidemic clusters and may be caused by a transmissible retrovirus. Yet it receives inadequate funding for research, treatment and education, shunted aside by government health agencies. Doctors have nothing to offer their patients but a panoply of misdiagnoses or no diagnosis at all, and inadequate testing and treatment. Jobs, homes, marriages, friendships, the possibility of parenting, community activity, all fall by the wayside for the millions suffering from ME/CFS.

One researcher and author on this disease has pointed out:

“In the middle 1980s, families who had lost a relative to AIDS decided to create an AIDS memorial quilt. Everyone made a “block” and one day in 1987 they brought their quilt blocks to the mall in front of the U.S. capitol building in Washington. These panels covered a space larger than a football field. People stood together in huddles, weeping openly. Half a million people visited the Quilt that weekend. For AIDS patients, the quilt was a game changer.” -Hillary Johnson, author of Osler’s Web

We’re ready for a game-changer for ME/CFS: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. A group of people with ME/CFS has come up with an engaging project design that could be as effective as the AIDS quilt, but we can’t do it on our own, sick as we are. We need healthy people who care, to make it happen. For more project details and volunteer opportunities, please contact sockit2Mecfs@gmail.com.

Monday, March 1, 2010

Stage 9 Action Against ME/CFS

Various models assign 5 to 7 stages to the grieving process.

They say we work through grief in stages from denial to acceptance.

I'd like to propose that a further stage, somewhere along the way (let's say stage 9, so we leave 8 open for the time being to anyone who wants to fill in a penultimate stage) (and perhaps this 9 I'm proposing isn't in fact the ultimate stage if you want to add being dead and therefore beyond caring or being in Tir Na Nog and having nicer things to think about or being in heaven and having achieved an understanding of how all the suffering fits into the plan of a god) ahem. Let us, as I say, propose a stage 9. Action.

It's beyond Acceptance. Nor is it equal to the earlier stages of Reconstruction, Working Through, Adapting to Loss. No. Action, real Stage Nine Action, means fighting back.

How do you fight back, if you've lost a loved one? People do it all the time. Make a contribution to the Alzheimer's Association, participate in a bike-a-thon for the Leukemia Society, contribute volunteer hours to the Cancer Society, join a letter-writing effort against a war via a church Service Committe, or join Mothers Against Drunk Driving. When a loved one is taken by an identifiable cause, and we've gone far enough in the grieving process, we get to work, fighting that killer. The fight may go on for the rest of our lives. That's Stage Nine Action.

It works in self-grief, too. People disabled by chronic illness have to go through stages of grief over the loss of a major part of our own lives. It can feel as if the person who we once were has died. We deny the reality of the illness, think surely we're misdiagnosed. We get angry and we ask, "Why me?" We try to bargain with everyone from doctors to gods to get our healthy lives back if we do x, y or z. We get dragged down into depression by the magnitude of our loss of activities, work and friends. We eventually reach acceptance and learn to live a different life, within the limits of the disease.

But acceptance can't be the end.

Beyond acceptance, there's action. Action to inform others. Action to increase research. Action to promote the search for a cure.

Loss and grief change us profoundly, whether we are grieving for ourselves or others. The loved ones of people with chronic and disabling diseases also suffer loss and have to go through grief. We come to the Acceptance stage with new knowledge, wisdom and strength.

These uses of adversity are not to be kept for ourselves alone. We share their great value through action.

Action may be as small as an email, a vote on an internet poll, signing a petition; but every time we take those tiny actions we take them for ourselves, for our loved ones and for the millions of strangers who may at any time be hit by the same force that brought us our own grief.

In my own case, both my children and I were hit by post-viral fatigue syndrome which in two of us developed into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia. A small percentage of sufferers recover completely but to cling to that piece of information would be to stay in denial. There is no cure. There is no reliable treatment. There are only a vast plethora of possibilities, all requiring research.

If ME/CFS---your own or a loved one's---has brought you to grief, please consider enrolling in an email list to be notified of quick and easy actions:

http://action.phoenix-cfs.org/subscription.php

Through that link, you can enroll to receive very occasional email alerts letting you know how to help promote critical biomedical research.

Some folks are dead, others can't take action, but you and I can click a button now and then to make a little difference.

Wednesday, February 10, 2010

Best source for ME/CFS News, Forums and Chat

I'm super sick. There's so much I'd like to share but I can't sit up at the keyboard for long enough. For now, I want to send everyone to http://forums.aboutmecfs.org/content.php for excellent and swift coverage of medical, political and social developments regarding ME/CFS. This is the best place I've found yet for information and discussion and yes, thank you Phoenix Rising, for the hope to keep going.

EDIT: I've been less able to frequent forums since I first posted this, partly because of cognitive challenges, but I'm realising that the brain fog is exacerbated by the in-fighting that sometimes happens between patients and patient groups. If you do chat on forums, be cautious and be kind. 

Saturday, January 30, 2010

Felt like a slap, to me. What do you think?

I just want to lay this all out. I’m not sure I heard right. I must have misunderstood, don’t you think?


I drove over two hours round trip for an appointment at the social service office in my new county. Although I am disabled with ME/CFS and Fibromyalgia, there was no way the appointment could be held at a more accessible location. The appointment required me to confirm various personal statistics, including the fact of my disability, all paperwork on which I’d been assured had already been forwarded from my old county to my new county.


I brought a huge file of papers including my copies of those confirming my disability.


The worker asked me when I had last worked and what my job title had been.


I answered that I had been working as a grant writer but due to my disabling chronic illness I was able to work less and less until, in June 2009, I could work no more.


She asked me if I could perhaps write grants for a local agency called Disabled Sports.


I reiterated that I could no longer write grants myself, but offered to refer them to my colleagues at the consulting firm for which I formerly worked.


She bristled, stating proudly that Disabled Sports was 100% volunteer run, and would never pay someone to write grants.


Okay, first spot check: she was asking me, although I am too disabled to work as a grant writer to support myself and my children, would I write grants for free? That seems to me to be what she was asking me.


Well, we got to the end of the appointment somehow: the appointment which the paperwork she mailed me had said would take one hour, and which took closer to three. Now was her final question: did I have any questions?


Yes, I would like to know, I told her, if there were any local agencies to assist disabled people with basic necessities. I cited as an example of such an agency, the Center for Independent Living in the county from which I had just come. They help disabled clients find housing, food banks, in-home assistance and such.


She told me no, there were no such agencies here or in the next county.


Can we check again, what’s going on? She wants me to work for free for an agency that would help me go skiing if I were an amputee, but there is no agency to help me find tax preparation assistance or a food bank. Yes, I really would like a food bank; the cupboards are getting close to bare.


She told me I could ask about food at churches, I could ask utility companies for special low rates for the needy, I could ask Social Security for any other services for the disabled that they might provide for my son who is already on SSI. She asked, had I changed my address with Social Security?


Yes, I told her, I had trouble trying to reach them online or by phone but I had sent a letter and was hoping that by now the address change had been processed.


She told me, “Oh, there is a local Social Security office.”


I was surprised to hear this as I thought the nearest one was nowhere close. She told me yes, they had an office in Spacetown. I live over 230 miles from Spacetown. Google says it would take me well over five hours driving one way.


I’ve thought and thought about this. I don’t like to think ill of people. It’s thirty hours later and I’m still pondering this puzzle. She’s a social worker. She must have gone into this career to help people. She must be full of empathy.


She thinks I should work for free, go ask a church for some food, drive all day to ask for help in my home, and then if I should happen to lose a leg maybe her friends will take me skiing.


Tell me I didn’t get that right, please.

Thursday, January 14, 2010

Home, where the heart is.

With all of our stuff that had been in storage for a year, with our two dogs and our four cats, and with help from family, friends and complete strangers, we made it into a home in time for the holidays. Thank and bless you, all who helped.

In three days it will be a month, already, since we moved in. We're still negotiating our ways between chaotic dissarray of furniture and boxes but from the first night (thanks to my sister's preparations that day) we've had hot meals, warm beds and plenty of serene surroundings to help us chill out. In fact, there was a gorgeous snowscape waiting to greet us.

I had hoped to get here and then just rest, restrestrestrestrest. But wait, if I say "rest" several times quickly, like that, it comes out sounding like "stressed stressed stressed." I'm trying to let the worries be duck's water, to let them slide off and go forward each day doing what I can and not worrying about what I can't accomplish, but there's so much to do and of course it all needs to be done right away.

Then there are the changes, losses, adaptations: coping with the move has been nearly as high stress as was the search for a home. Shortly before we moved, several different people complimented me on my bravery. What's brave? That I keep on going, day to day, despite bearing more troubles at once than the average American has to face? I wonder, first, what else there would be for me to do, day to day, but to keep on going, and second, how well would I handle the troubles of a Ugandan mother during the drought or of a Haitian mother after the earthquake. I look at my kids and know it distresses them sometimes, not to have the life that others around them appear to have, but I'm grateful they're housed and fed.

Keeping them housed and fed is an ongoing challenge, however. At every turn there's more paperwork to do. "You say you're disabled and can't hold down a job? Here: fill out these forms, and these, and these." Is this a test? If I could fill out all those forms, I'd be able to do a job.

We still haven't signed up as test subjects with Whittemore Peterson. One more element needs to be put in place: I have nothing to fill out under the doctor's information. I've tried to get us to appointments with the doctor we plan to see here in our new county, but weather and illness have prevented our going. Meanwhile, prescription coverage was denied because I haven't completed the paperwork: a maze to negotiate, to get past coverage canceled and new coverage in place. It shouldn't be so tough, but each and every thing is just that little bit more complicated by bureaucracies and bungles than I can handle.

Yes, I'm grateful that we're housed and fed, that we're alive, but I'm also aching so bad that sitting up at the computer is limited, and cognitive stuff is fogged by pain and overload. I'll try, today, to fill out at least one paper and get it in the mail. A pile of others will continue to grow.

I'm supposed to rest. I'm supposed not to stress. Each day I feel in aches and exhaustion the price I pay immediately for being unable to rest. What price will I pay, longterm?

When I came back to my blog at last after over a month, I saw that a blog I subscribe to had a new post about ME. It seems we're more likely to die from heart failure, according to a study published by the US National Institutes of Health on its site, here.

Am I brave? I'm tired. Heart failure sounds like a fast death and then a complete rest. But I want to see my child beat ME and live to a ripe old age. Having a home is one step towards Hazel's heart health, so cowardly and defeated though I may often feel, I'll push on as if I were brave, hoping I'm not pushing too hard.

The dogs and cats who come to me to cuddle right when I'm feeling most pain, my children who make me feel worthwhile when I can do something for them and who find ways to help me when I can't, my sister who checks in and offers help from grocery shopping to school rides for my well child, the family and friends whose responses to my emails let me know I'm not alone though I might see nobody but my kids for days, hope. There's always something to keep me going, brave or not.