by

ME/CFS Alert videos ~ I think you should watch them!

Friends and Family, I watched the following ME/CFS Alert videos today and I highly recommend them for anyone who is interested in learning or understanding more about this disease. They are only about 10 minutes long.

The first video is an interview with Dr. Staci Stevens, exercise physiologist at the Workwell Foundation (formerly the Pacific Fatigue Lab). She explains post-exertional malaise ~ in my opinion, the number one most debilitating and cruel symptom of this disease ~ from a clinician’s point of view. Here is an article by Cort Johnson about Dr. Stevens’s protocol, which uses empirical testing to establish the (very low) anaerobic thresholds of ME patients. Cort says, “So emerged the ‘Stevens Protocol’ – the  only test that actually documents post-exertional  fatigue, and documents it so well that failing the test is virtually a slam-dunk for a disability evaluation.”

This interview with Dr. Kenny de Merlier, an ME/CFS expert from Belgium, is very interesting (it is listed as Episode 42, but when the video actually starts playing, it says Episode 41, fyi). Dr. de Merlier believes that in every case of ME, an infectious disease triggers an autoimmune response. I, for one, have great faith in his knowledge and the work he does. Again, I encourage everyone to watch this interview (and Episode 43, which is also with Dr. de Merlier) to get a better understanding of this baffling illness from a clinician’s viewpoint.

Here is an interview with Dr. Dan Peterson, one of the world’s foremost experts in ME/CFS. Dr. Peterson has been seeing patients for 25 years and now heads Simmeron Research in Incline Village, Nevada. The depressing reality here is he says, in his 25-year career, he has never seen a full and total recovery, he doubts he will ever see a cure, and getting governmental monetary funding or political support for Ampligen research/treatment has been “an exercise in futility” (also, he says many of his patients have developed lymphoma, which in itself is scary).

While you’re at it, you might as well watch this video interview with a patient of Dr. Peterson. She has been sick for 25 years and is now on Ampligen.

Thanks for taking the time to educate yourselves.

by

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.

by

Happy Birthday To Me!

Today, I turn 40 years of age. We have a big day planned. We’re going to the beach with the dogs. We’re going to throw the ball and walk in the sand and let them chase birds. They haven’t been to the beach since last summer when E. was visiting and I still had some energy.

2972_81534857810_663557810_2198474_6458790_n

I’m not going to go to bed afterward. Instead, I’m going to stop by the grocery store and buy all the fixin’s for a fry tomorrow morning: eggs, bacon, sausages, bread, tomato, proper cow’s milk for proper tea… I might even look for decent baked beans and black pudding. Then, this evening, I am going to take a shower, wash my hair and put on make up for the first time in 9 months (gasp!). I am going to put on a dress ~ it is beautiful and still fits me and I feel sexy ~ and some very high heels ~ I’m able to walk in them properly, without shuffling, and they don’t hurt my back. We’re going into town for dinner, meeting up with friends and family. It’s going to be a long 5-course indulgence and I’m going to ignore all my diet rules. I am going to rip apart fresh-baked bread, taking the time to inhale its aroma before slathering on creamy butter and savouring every bite. I am going to close my eyes every time I take a bite of pasta ~ I don’t care what kind it is ~ and be fully present in that moment, witnessing every chew with all my senses on full-alert. I am going to order the most decadent dessert, something with pastry and chocolate ~ eggs, sugar, flour, butter ~ and revel in every single mouthful: no guilt, no worry, no blood sugar issues, no inflammation issues, no intolerances or allergies or leaky gut or bowel dysbiosis or nausea. There better be a cheese plate involved at some stage and I might even have some wine. Dry red wine. A whole bottle. Maybe I’ll sneak outside to share a cigarette with someone. We’re all going to talk over each other and laugh hysterically and the noise won’t bother me. I won’t be confused and overloaded by too many conversations at once. I won’t think about pain or exhaustion or how I will sleep tonight or how I will feel tomorrow. Because I will feel fine. I will feel tired and happy and full and grateful. Oh, and tomorrow morning, while eating that lovely breakfast, I will realise I’ve won the $600 million lotto.

Well, a girl can dream, right?

No, unfortunately, today will be like every other day. It’ll be a little bit worse than the norm because my sleep vanished this week and I’m crippled with new muscle pain on top of the old stiff exhaustion. But, it’ll be a little bit better than the norm because my sister is coming over and my husband isn’t working. Three people and three dogs? It’ll be a carnival compared to my usual still, silent days.

Goodbye 30s, you actually were literally the best of times and the worst of times. I have three birthday wishes for this new decade: Continued good health for those I love, better health for me and relief from suffering for all people and animals on this earth. That’s not too much to ask, is it? 🙂

sarah in incubator 001

May 18th, 1973

by

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.
by

Dog Days Are Over

Yesterday, I was finally going to write an exciting update about my strength returning, my one good night’s sleep, and the lovely sunny day, but then this happened: I decided to throw the ball for the dogs for the first time since March. They have been starved for Mama play time, so I reasoned a few throws were my first choice over stretches or walking laps around the garden.

One would think that in my sickly state these throws would be pathetically weak, but I’m using a Chuck-it and an extra large squeaker ball and I’m giving it my all because I know I only have a few throws in me. But this Chuck-it is huge and we don’t have enough space and it is always tricky to get a decent lob. Well, my first attempt, flung with all my effort, drilled directly down in front of me instead of in a nice arch away from me… and bore straight into my big beautiful brown-eyed baby’s eye.

IMG_20130510_164342

This dog doesn’t cry or yelp ever. He injured his back and never made a peep, he just shivered and drooled and couldn’t walk. But the tennis ball today made him cry out and then bolt and kind of run around confused, tail tucked, not knowing where to go. When I got close to him, all I saw was red inside his eye orbit. It looked like his eyeball had been driven back into his head or flipped backwards or something. I had the house locked up, his leash on, my shoes on, my car keys in my hand and my husband on the phone in seconds. I said, “I’m going to the vet. My phone is dead. I need you to call and make sure someone can see him now.” My husband said, “Do you have the strength to do that?” I stopped and sat down on the front steps. I hadn’t even thought about whether I could manage. It wasn’t until I then-when I became still- that I felt the adrenalin like a tidal wave through my body. My legs were jelly, my hands were shaking. I glanced at my heart rate monitor: 125. “I’ll find the strength,” I said. But as I looked at my dog, I realised the red I saw in his eye socket was the inner lid – it’d been completely covering the eyeball and the effect was gruesome. Now that it had retracted halfway and I could see his pretty brown iris, I calmed. The vet could wait until my husband got home.

As I write this, the world is spinning. I haven’t had acute emergency-type stress in my life (luckily) in so long and the feeling is alien. I was mowed over by a speeding epinephrine train and I realised four things:

1. I would be able to handle an emergency. I would be able to mine down deep into my cells for the resources necessary to fight off danger or rescue my loved ones or whatever might crop up… The question is what would (will) the physical ramifications be in the days that follow.

2. I lived with a chronic case of that stress response for YEARS in my job. The feeling was all too familiar. I used to never turn off. There was always a crisis, always a problem, always a fire to be put out (figuratively, not actually, thankfully). And, when there wasn’t an immediate concern, I was looking for one that hadn’t been discovered yet, so I wouldn’t be blindsided. It was a constant stomach queaze, the dull adrenal hum of my sympathetic nervous system stuck in hyper-vigilance, anticipating the next restaurant catastrophe.

3. I, myself, created a lot of that intense stress by being a controlling perfectionist who holds herself to unreachable standards and unsustainable responsibilities. And I still do. It takes work to not blame yourself for getting sick and it takes practice to let yourself off the hook for not getting better. It takes restraint to not take care of the house and it takes discipline to not forge ahead with the life you always wanted. And I try every day to forgive myself for not being the employee, friend, sister, daughter, wife I want to be.

4. I miss it. I miss crisis management and learning how to fix a problem and finding out how to do it better in the future. I miss being an honest adviser, without judgment. I miss jumping into action, making mistakes, figuring it out. I miss being the one that doesn’t need help ~ being the rock and the confidant and the reality check for those I love. I’m kind of sick of calm, quiet, peaceful boredom. I thrive on excitement and stress ~ as long as it is a positive atmosphere and a supportive team with a for-the-greater-good outcome. I knew I should have been an emergency room doctor.

Gratitude for the day: no orbital fracture or scratched cornea or dislodged eyeball. Just some pain and spooked tail-tucking. My pup is okay. But the sunny days are over for a while.

bowie1

Title Credit