Tag Archives: M.E./C.F.S.

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General Update

I feel like it has been a while since I gave a proper update. This may be a bit disjointed as I hit the important points from the past few months.

  • 19 months sick. 1 year unemployed. 9 months on elimination diet. 8 months housebound.
  • The week before Easter, I had the best 4 days since becoming housebound. Starting April 1st, I went downhill and got no respite from the crash for over a month. Each day, I hoped for a new beginning. Each day felt as bad or worse than the day before. I was spending days in bed and, very quickly, my mood tanked. It is very hard to see the light at the end of the tunnel when you get no relief day after day. I am usually quite good at articulating what I’m feeling ~ what is worse, what would help ~ but, there was a point in late April, where I was lying alone in my room and all I could think was. “Help me.” I didn’t know who to call or what I would say. I didn’t know if I could speak ~ I had been crying for days and was at a point of hopelessness that made me mute. I managed to text E. who gave me a little pep talk and made me feel less alone. That’s all anyone can do. Things started to ease up the second week of May. I’m not back to my normal crappy baseline yet (no walking around the garden, no stretches), but my body feels a bit better and my brain feels like I’m a different person: As usual, as soon as I get some space from the symptoms, I bounce right back to someone who can talk and laugh and see a future.
  • Which brings me to what caused that crash: I think I got so much worse because I stopped wearing the cpap. I really didn’t believe it was doing anything except annoying me. The mask was waking me at night, the necessity of washing all the cpap parts was exhausting, the tape over my mouth wasn’t doing my skin any favours… But, it finally dawned on me that I got worse about a week after I stopped using it. And then I started to feel better exactly one week after I started using it again. So, I’m a believer. I may be aware of the cpap mask waking me, but I am not aware of the apnea awakenings and those are the ones that are really affecting my health.
  • Which brings me to my sleep: I am still having a rough time. I intend on writing a post detailing all the information and tips I have gleaned from various sources on how to improve sleep without prescription drugs, so stay tuned for that. For now, suffice it to say I have tried EVERYTHING. As I have mentioned before, I am addicted to reading the New York Times on my phone in bed before I go to sleep ~ but I wear amber-lensed, blue light-blocking glasses after the sun goes down so I am supposedly protected from the way the screen affects my brain. Well, my birthday night, instead of reading the NY Times, I spent far too long looking at Facebook and answering all the wonderful happy birthday posts. I forgot to wear my amber glasses and wound up staying awake until 6am, tossing and turning.
Zeo graph: These lines should be SHORT when I'm sleeping. The "W" at the top means "Wake".

Zeo graph: These lines should be SHORT when I’m sleeping. The “W” at the top means “Wake”.

This is very unusual for me ~ I always fall asleep right away, it’s the waking up throughout the night that is my problem. So, for the last two nights, I made a strict rule of no phone or computer screen of any kind after 8pm and no tv after 9:30pm. My sleep was instantly better. Look at last night:

Proper sleep waves.

Proper sleep waves.

So, like the cpap, I believe I really underestimated what the phone or ipad light does to my brain. The room is black, but when I close my eyes I see lights, colours, moving lines, exploding stars. Basically, if I open my eyes it is darker than if I close my eyes. Someone on Phoenix Rising surmised that I was experiencing hypnagogia, stuck between wake and sleep. Either that or staring at my phone really, REALLY messes with my brain.

  • Which brings me to the supplements I am currently taking for sleep (and all the others, too, plus prescriptions). Here is my daily regimen:

2x Probiotic
2x tsp fiber
100mg Colace
Chinese Herbs (Lightning Pearls, currently 3/day)

2,000mg Acetyl L carnitine (1,000mg 2/day)
1,200mg Alpha Lipoic Acid (400mg 3/day)
4,000mg Borage Oil (960mg GLA) (2,000mg 2/day)
10,000iu Vitamin A
4,000iu Vitamin D3
2,000mg Fish oil (1,000mg EPA, 50mg DHA)
Vitamin B-complex (Thorne #12)
100mg CoQ10
400mg Magnesium glycinate
200mcg Selenium
400mg Riboflavin/B2
5,000mcg Biotin
15mg Zinc sometimes
500mg Vitamin C sometimes

Valerian sometimes
1mg Melatonin
100mg Phosphatidylserine
Tart cherry juice concentrate

5ml Zyrtec
Thyroid hormones (T3 and T4)
Pantanase nasal spray
Clindamycin topical lotion
Miralax as needed
Albuterol inhaler as needed

  • The magnesium (for muscles), melatonin (for sleep onset), valerian (for relaxation), tart cherry juice (for pain and melatonin) and phosphatidylserine (to decrease nighttime cortisol) are specifically for sleep (I tried the Seriphos ~which is phosphorylated serine~ for a few weeks, but it seemed to keep me awake. The Good Doctor switched me to the new one). The other new additions to my protocol are biotin (the dermatologist told me to take this for the vertical ridges in my fingernails and hair loss) and the Chinese herbs. I stopped these for a week while I was feeling really terrible and thought I might be getting a cold, but it never materalised, so I started them again, increasing the dose much more slowly than I had originally.
  • My diet is still the same (no gluten, grains, dairy, legumes, tomatoes, potatoes, or eggs), but I think I am going to add rice any day now… I’ve just been waiting until I have a more predictable day-to-day baseline so I don’t blame crippling muscle pain (which happened on the 17th for one day only from head to toe for no apparent reason) or the disappearance of sleep or an extreme headache on a rice cake.

I want to write about my recent doctor visits and some of the amazing presents I got for my birthday, but not today. Just know that I am flying high with all the love and generosity that was showered on me. I keep saying it, but one more time: I am one lucky lady. I have the most compassionate and caring family and friends imaginable. I thought I always knew that, but I am truly humbled today. NOTHING matters but loved ones! In the end, they’re all we have.

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What impact does ME/CFS Awareness Day have?

Here is a very interesting post by Patrick over at Quixotic: My M.E. Blog that I thought was worth reblogging here so my readers could mull over his questions:

What impact does ME/CFS Awareness Day have?

Did we make an impact?  It’s hard to know whether the message is spreading outside of our community or if we’re just passing the message around inside our own echo chamber.  I have to believe that we’re making small but steady strides, but it’s hard to make a big impact on public awareness when there’s so much noise competing for people’s attention.  And if we do get people’s attention, what exactly is our message?
 
I’ll get to that in a second, but first let me back up.
 
Sometimes I feel like there’s more that I could be doing to help our community.  Other times I wonder: isn’t it enough to just be looking out for myself and my family?  After tending to my own health issues, I’m not sure how much more of me is left to give to community issues.  I suspect that’s a feeling that many of us face.  So if we’re all struggling to get by, how do we build an impactful movement? 
 
And yet we all see these large, grassroots efforts being undertaken by other patient communities.  (Think MS, with its huge charity bike rides, funding drives, etc.)  Aren’t MS patients in a similar situation, with little leftover energy to give to the community?  
 
I suspect that the major awareness and fundraising efforts put forth by other patients communities are driven, in no small part, by the work of doctors, nurses, family, friends and loved ones who support the patients — not just the patients themselves.  So it begs the question: why not us?  Why haven’t we organized the same support network that would be essential for larger awareness and fundraising drives?  
 
Part of the reason is that our illness is so poorly understood that many of us can’t even get our own families to take it seriously (not counting me).   There’s this kind of frustrating circularity to our problem here.  
 
ME/CFS is very poorly understood in the medical community—>Why is it poorly understood in the medical community? —>  Because researchers can’t agree on the root cause or biomarkers? —>  Why can’t researchers agree? —>  Because there’s no research funding to chase promising leads —> Why is there no research funding? —> Because there are no major funding drives/charities/organizations —>  Why are there no major funding drives/charities/organizations? —> Because ME/CFS is not viewed as a “serious” illness by most —> Why is it not viewed as a “serious” illness by most? —>  Because ME/CFS is very poorly understood in the medical community —> [Back to the beginning.]  
 
So the challenge is to break this cycle.  These awareness campaigns are designed to break the cycle at the second to last step above: the “serious illness” step.  In theory then, having solved that issue, the remaining problems would gradually solve themselves in the reverse order, working backwords to the beginning of the list.  
 
But the thing to keep in mind is that the awareness campaign is only the first half of that step.  Why?  Because it’s not enough to just make people more aware of something.  People are never motivated to act on something merely by being aware that it exists.  An awareness campaign basically just primes people’s minds to be more receptive to the full message that follows.  It makes people curious enough to want to learn more.  
 
Then the question is, what are we doing to follow up on the awareness campaign?  What are we doing to educate people once they’ve become receptive to the message? 
 
So the next challenge is to develop our actual message.  Because you have to admit, we don’t really have a unified message.  We all have different levels of functionality, different theories of etiology, and we all seem to be pursing different treatments.  We confuse ourselves with our own cross-talk, so how are we supposed to present a unified, intelligible message to the average, healthy Joe?
 
That’s the next step.  That’s the challenge that I believe we need to be working on now.
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Tomorrow is International M.E. Awareness Day.

Tomorrow is International M.E. Awareness Day. There are many events happening around the world, both online and in person. You can google your area to see if there is anything going on, but what I ask is something simple:

Please make an effort this month to talk about this disease. Look for opportunities to raise awareness. Don’t worry about being a “downer” or bringing up an awkward, depressing subject. Let people know that there is an illness that stops life in its tracks and has no approved drug treatments and very little funding for research. Explain that this has nothing to do with laziness, depression, tiredness or burn-out. Explain that there are test abnormalities, but doctors aren’t taught about the (possible/probable) etiologies of this disease so most do not recognise it and certainly don’t know what to test for or how to treat it. Make it known that patients languish in their homes ~ or, more likely, a family member’s home ~ are passed from dismissive specialist to thieving charlatan and back again, use up all their resources, and usually reach a point where they are trying to just survive because it is too exhausting to research treatments and search for medical help. Warn people that ME is often accompanied by crippling neurological issues, autonomic dysfunction, new allergies and multiple chemical sensitivity (MCS), postural orthostatic tachycardia syndrome (POTS), chronic migraines, irritable bowel syndrome (IBS), fibromyalgia (FM), mast cell problems (MCAD), sleep dysfunction and, of course, the depression and anxiety that would be hard to avoid with a diagnosis like this. These are all debilitating conditions in their own right, so drawing awareness to them is just as valuable.

As with many awareness campaigns, ribbons are worn to show support – blue for ME/CFS, purple for FM, and green for MCS. What I like about this is, it might bring up the conversation. Most people recognise the pink ribbon representing breast cancer awareness or the yellow Livestrong wristband which supports cancer survivors, but perhaps you will encounter someone who asks, “What does the blue ribbon stand for?” And then you can launch into your educational lecture. 🙂

meribbon

A few things going on around the world:

Niagara Falls will be illuminated in blue tomorrow, May 12th, from 9:45-10:00pm EST to raise awareness to M.E. From 10:15-10:30pm EST the falls will be purple for fibromyalgia (FM) and from 11:00-11:15pm EST the falls will be green to draw attention to multiple chemical sensitivity (MCS). You can watch it on their live webcam. Or try: http://www.earthcam.com/canada/niagarafalls/

In London, there is the “All Fall Down for M.E.” protest outside the Houses of Parliament at the Old Palace Yard.

londonME

In Victoria, Australia at Melbourne University, there is an ME/CFS Educational Fun Run.

forME

Bob Miller is skydiving to promote ME research in Lodi, California.

The Irish ME/CFS Association is hosting four talks by Dr. Ros Vallings from New Zealand next week.

There are  five screenings of Voices from the Shadows across three continents in May.

Read this article by Mark at Phoenix Rising to get all the details about these events and many more.

Finally, consider writing to your local paper to raise awareness. Read this post by the ME/CFS Self-help Guru for inspiration.

Thank you to everyone in my life that has talked about this baffling illness, raising awareness one person at a time. Thanks to my father for talking to his staff about this disease and to my mother for talking to her dog park friends about it and to Z. and E. for explaining my situation to other people I know and to my husband for constantly making excuses for my absence, trying to educate others on what is going on and raging at medical professionals’ and society’s ignorance, allowing me to be angry by proxy since I don’t have the energy for it.

MEawareness

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I will rise. I will return.

Oh how cruel it is that when you really need to write, you can’t. I’ve been so very sick. Apologies to my friends and family for my neglect of correspondence and birthdays (everyone is born in April). Apologies to my husband for having to pick up even more slack while wading through thicker clouds of my fear. Apologies to my dogs who are not only getting no exercise, but who have been rejecting the recently beautiful spring days to lie indoors in the dark next to their ailing Momma. Yesterday, I took a blanket and pillow outside and lay on a dog bed in the garden so we could all get some fresh air. They danced excitedly about thinking I might actually be trying to walk my daily laps again (long ago they gave up their hopes that I might take them to an actual park ~ my putting on shoes now means I’m leaving them to go to a doctor appointment and they hardly raise an eyebrow) and then sulked with heads low when they saw I was inert, as usual.

I think I am worse overall than I have ever been. This is definitely the longest stretch of BAD I’ve ever had. By “sick” and by “bad” I mean unable to do even the little things and needing to stay in bed most of the time. I have been so dizzy and so shaky. I’m chilled, I’m exhausted, my muscles have retracted into hard, fibrous knots. I have the ever-present headache and sore throat and noise sensitivity. My sleep is dismal; I feel utterly tortured by the loss of quality repair time at night. My bed is a battleground: the covers too weighty, the mattress too hot, the pillow to low, the air too cold. I am at once completely unconscious and aware of my surroundings. I am so tired and groggy, but, while I’m dreaming, I am well aware that I am in my room having a dream and that it would be much better to be deeper asleep. But the worst thing about this last week is it has literally felt as if I may not have enough ATP to fuel my lungs, my heart, my brain. There is a point, whether I’m right or wrong, where it feels very obviously like my mitochondria don’t work ~ it is physical, as if I can feel the millions of engines in my organs sputtering and stalling. I’m giving gas, but they just wheeze and die. It feels like, if I read, I then may not be able to speak. Or, if I expend the energy to sit up, I may not be able to breathe. And suddenly the headache and the pain and the stiffness ~ none of it is important because, even if my heart keeps beating, my brain may just flatline.

Yesterday, I did something I’ve never done: I prayed out loud for help. I prayed for this to be taken away. I prayed to go back to where I was when I thought it was bad a year ago or for help for my husband or for us to win the lotto so we could stop this speeding train towards homelessness and poverty. You think I’m being melodramatic? I’m not. I don’t even know how to muster the energy to apply for disability or talk to the bank about our mortgage. A long phone call with the health insurance company (they show termination of coverage at the beginning of January for some reason) yesterday sent me to bed for 3 hours to “recover”. Contrary to how it may seem (I am acutely aware that I rarely gloss over the mental anguish caused by this disease), I really did think I would get better. I thought I would look back on this rough patch as a period of growth ~ a rototilling of the deep grooves and scar tissue of habitual thought and thoughtless action. I would be receptive and do the work and then this coffin-like chrysalis would metamorphose into a new stress-free career and I would feel blessed for my period of attrition. I am now worried that I may not ever work again and, one day soon, our savings will simply be gone.

The good news is, when I was able to get out of bed on Sunday and go about my (abbreviated) routine, I felt a flush of triumph like never before: I came through it. I am (carefully, slowly) walking and talking. You can’t take me down for long. I will rise. I will return.

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A Day In The Life

My yesterday:

I had an appointment with the orthodontist at the sleep clinic to be fitted for the sleep apnea dental appliance. I already postponed this appointment a week since I’d been feeling so awful and, even though I’m still feeling awful, I didn’t want to cancel again. I’ve actually started to think that maybe part of the reason I’ve taken such a prolonged downturn is because I haven’t worn the cpap in two or three weeks, so I need to get this fix-apnea show on the road. [Quick aside: last week, when I called to reschedule, I told them I had an appointment with the orthodontist, but couldn’t remember her name. “Dr. P—–? She’s actually a dentist,” the receptionist corrected me and it’s been bugging me all week. I just googled Dr. P.: Nope, the doctor is an orthodontist and completed her residency at Harvard School of Dental Medicine and was on the orthodontic faculty at the University of Tennessee, College of Dentistry. Maybe this bothers me because my father is an endodontist and there is a significant amount of additional education and expertise that goes into a dental specialty. (I was on my way to becoming a Registered Dietitian once upon a time ~ a 2-year full-time graduate program that was going to cost me $50,000 ~ before I could even apply, I spent a year taking prerequisites that I didn’t have from my Bachelor’s degree: anatomy, physiology, biochemistry, organic chemistry etc. Virtually every time I talked to someone about my future career, they would confuse what I was doing with being a “nutritionist”. The distinction was important to me. Anyone can call themselves a nutritionist! Beware, those of you in the US: a “nutritionist” can be an 18-year old that read a lot of cooking magazines in her bedroom and decided to hang a shingle outside her door. There are no legal or professional regulations!) But mostly I think the mistake bothers me because I was incorrectly corrected… And you should know the staff… Rant over.]

The orthodontist, Dr. P., was really nice and very sympathetic to my situation. She said my teeth and jaw bone looked wonderful and my movement (of the jaw back and forth, side to side) was great and I was perfect candidate. She warned me that my teeth might shift from the appliance (like having braces) and my bite might change slightly and my jaw might hurt in the beginning and that they will give me exercises every morning to help stop the “muscle memory” in my face/jaw/head that will have a tendency to keep my jaw in the forward position it’s used to from 10 hours in bed wearing the device. She took the impression of my teeth and then told me to make an appointment for 5 weeks from now for the fitting. No. Way. Everything takes so long! It’s going to be another 2 months before I can even try out this device. Boo.

Unbelievably, this appointment was 1.5 hours (how could I have predicted that?!). The orthodontist was very thorough and explained everything in great detail, which I appreciate, but her office was windowless with horrid lights in the ceiling and at the 45 minute mark I was already losing focus and slumping in my chair. I had driven myself to the sleep clinic because it is very close to my house, but I had an acupuncture appointment afterwards downtown for which I need a chauffeur. I planned to meet my husband at home, but the appointment went so long, I asked him to come to the clinic to get me. Dr. P. gave me the option of coming back another day to have the impression done, but that would have postponed the whole process ANOTHER week. I called to warn the Good Master acupuncturist, my husband left his work truck in the sleep clinic lot and, before we got to the highway, I realised I had to eat something. Acupuncture on an empty stomach is no good and, if I didn’t eat something until 5pm when we got home, I would collapse. Because my diet is such a nightmare, the easiest thing to do was go home and quickly microwave some of the amazing leek and turnip soup my husband had made the night before… Of course, now it would have been much better if I had just driven home myself and met my husband there, rather than abandoning his truck at the clinic.

My acupuncturist only inserts needles in the ears, forearms, calves and feet. I may feel and look like crap, but I still have a modicum of vanity and, on the drive downtown, I was clipping my toenails and moisturizing my legs while eating my soup and reviewing my symptom calendar so I could accurately recount how I have been feeling since my last appointment. All this while sitting as far to the left of my seat as possible ~ practically on the center console ~ to avoid the blaring sun on our west side, threatening internal combustion and making my headache even worse. Once I got there (only ten minutes late!), he said he didn’t want to aggravate anything with acupuncture today… Wow, I had even shaved my legs. Instead, we talked about the Chinese herbs. Finally, after all these months, I was ready to buy a bottle. I’ve been waffling about this treatment for so long! He was quite excited. During our very first appointment last September, not even knowing that I would be one of the 1 in a 1,000 patients that had negative reactions to acupuncture, he had said, “Chinese herbs will be the most important thing for you.” He has always maintained that I have Gu Syndrome and these herbs are the key to my recovery. What finally made me come around was: 1) Dr. Chia’s video (if I had journeyed all the way to California to see him and he had put me on Chinese herbs after the Good Master spent 7 months steadfastly and confidently urging me to take his pills, I would have been mortified. They use different herb blends, but I trust my acupuncturist completely). 2) I started to feel worse. If I had stayed on that uphill trajectory, I wouldn’t have wanted to rock the boat by introducing anything new. So, maybe this crash will be a blessing in disguise.

The best part of this visit was he persuaded me to take my first pill while we were sitting there talking. He knew full well I might go home and not open that bottle for months ~ if ever. I’m such a chicken. Eat something with a lengthy ingredients list of things I can’t pronounce? Swallow something containing herbs my body has never encountered before? No, thank you. Not this delicate flower. But, the thing is, even though I know I have a sensitive system, I really still believe in the resilience of my body. She’s been a trooper all these years. So, I took the pill while he watched and I took another a few minutes ago and I feel fortified ~ emotionally, if not physically. Yet.

My appointment was so short that my husband was still about 15 minutes away when I finished. I was a mess. I was a shuffling pile of jello, slurring my words, bumping into walls. I literally did not manage to exit the elevator into the foyer before the doors started to close again ~ that’s slow! PWME (people with M.E.), you will appreciate this: I didn’t want to wait on the loud, busy, beepy, dusty street corner, so I wondered into the mattress store in the bottom of the acupuncture building and mumbled something to the socially-awkward salesman about needing a new bed. He looked at me uncertainly because I’m sure I sounded drunk and I was having a hard time walking. I told him I had an injury and didn’t want to walk around the store, but I would lie on this TempurPedic in front of me to see how I like it. Writing this, I’m laughing out loud because it really can be tragically hilarious the things we do to catch a rest break. (By the way, I wasn’t totally lying: I have a new plan to put a twin mattress in my meditation room, so my husband can have our bedroom back.)

The end of the story is that I was virtually comatose on the drive home, other than being able to feel every divot in the road grind my vertebrae together and batter my brain against the walls of my skull (note to self: win the lotto and buy the smoothest, quietest, comfiest car on the market). I tried to muster up the energy to drive home from the sleep clinic parking lot so my husband could drive his truck, but I was unsteady on my feet and I was really having a hard time opening my eyes and speaking clearly. It was just like the time I got pain killer and muscle relaxer injections in my butt for a sprained neck. I was all floppy and out of it. So, we went home instead and I don’t even remember stumbling to bed where I stayed for two+ hours. My husband took a taxi back to his truck.

It wasn’t until after 7pm that I read the news about the bombs at the finish line of the Boston Marathon. There are no words to describe how I feel about this tragedy, but I am once again filled with gratitude for those people that don’t turn away from suffering. From the first responders and the medical personnel that make helping their careers, to the bystanders and strangers that jump in to help without hesitation, to the friends and family that provide ongoing support to those that hurt… holding hands, holding vigil, holding hope… Thank you.

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