STRESS is Your Friend

 

Quick update on myself.  Finding wellness means taking responsibility, taking a hard look at your life and making changes in all areas of your life…..and sometimes changes just happen to you and you learn to adjust with grace and compassion and move on.  So, I left my 8 year relationship (starting all over at 59), moved into an apartment, shortly after moving I had appendicitis and had surgery to remove it (when it rains it pours)…not done yet, my beloved brother died of cancer, my 90 year old step Father also passed away.  On the positive side I’m seeing a great accupuncturist once a week, I just started Toby Mortison’s on-line course for CFS (I’ll talk more on that later), and looking into SE (somatic  experiencing)….releasing old stress or trauma in the body.  I’m functional, but with everything I went through last year I had a few steps back but am now ready to move forward.

I want to share this portion of a chapter of Anthony Williams book, Life Changing Foods. It’s about making friends with stress instead of seeing it as bad. I think it’s a great mind shift to get more in touch with what’s going on in our bodies to help us on our path to healing.
” Stress is not trying to kill you. It’s a master teacher that is trying to communicate with you. It’s trying to test you—though it’s not about any sort of score. Rather than looking at stress as an invader, understand that stress is preparing you to be a master. Say hello to stress. Recognize it as a familiar face, someone you care about, and look it in the eye. Greet stress as your great mentor. Feel almost sorry for stress. After all, you will move past it, rise above it, succeed it—you’ll leave it behind. When dealing with stress, it’s key to remember this impermanence. No matter what, all things change. Nothing will stay the same. In the moment when stress is pushing you past your capacity, when you feel in dire need of relief, remind yourself that it will not last. When stress is there, we can appreciate it. Without stress, where would we be? There would be no challenge to inspire us. With the weather always perfect, food always abundant, love always flowing, we wouldn’t have anything to strive for, and life would grow boring. Without stress, we would lose our will, because will is built upon constantly succeeding, rising above, and breaking through to the other side of stress. Imagine all the birds suddenly gone from the planet. Not only would we miss out on everything birds do for the ecosystem, the experience of life on earth just wouldn’t be the same if they vanished. That’s how it would be if stress suddenly ceased to exist. If we didn’t have all these stresses flitting through our lives, it simply wouldn’t be right. If you think about it, stress is just the name we give it in negative circumstances (or what we label as negative circumstances). There are plenty of moments in our lives that we think of as leisure or play that have elements of stress involved. When you’re riding your bike on the weekend, giving it everything you’ve got to get to the top of a hill, that’s stress—only you probably think of it as exhilaration or release. The point is, stress is natural. It’s always been there, and it’s always been a friend. No matter how intense or grave stress feels in a given moment, we have to remember not to fear it. We hear the term stress management a lot. The issue with this concept is that managing stress can feel like one more job to do, and one more thing to feel bad about. So many people already walk around feeling inadequate for not being able to keep up with every single detail of their lives. On top of that, they’re supposed to feel like they have one more task—to manage the way they’re managing it all? Staying sane is less about managing stress and more about interacting with it. Instead of trying to fight against stress, communicate with it. Even consider letting stress reside at your address. Welcome it to your table. Break bread with stress. Acknowledge it as you drink your warm bowl of soup with stress beside you, offering it honor and respect, as though it’s a coach who has moved in to get you into prime shape. If you’re used to getting physical symptoms such as tight muscles from stress, politely ask stress instead to zero in on those problem areas like a masseuse and send them the message that it’s time to let go and work for you, because they’re needed to help you fulfill your purpose-plus. There is one boundary you need to set with stress: bedtime. When you retire for the night, that’s when you tell stress, “You’re locked out.” No matter what’s occurring in your life, you get to shut off your thoughts about it all when you shut off the light. This is when you call the angels in and create your sanctuary for the night, so you can navigate your dreams and be cleansed of difficult emotions that cropped up during the day. You need and deserve your rest. The approach of seeing stress as a messenger, friend, teacher, mentor, body worker, and coach makes stress less stressful. It is a powerful technique to help us grow and adapt to the challenges of our time. When you feel sorry for stress, appreciate it, and recognize it as impermanent, it doesn’t send the same jolt of excess adrenaline through your veins—it doesn’t take the toll on your body that it would otherwise. So go ahead, watch what happens when you greet stress with this new perspective. I can’t wait for you to feel the relief.”

Change, Change and more Change

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Well, they say taking a long trip can change your life or give you a new perspective…. that’s what’s happened.  I found a 55+ apartment to move to. I did the thing I was most afraid to do.  I couldn’t imagine how I could move while feeling the exhaustion of this disease, but my friends and their friends came to my aid and made sure it got done as quickly and easily as possible.  Absolutely wonderful, kind, amazing people.

I want to really focus on getting my health better and that involves keeping stress as low as possible, focusing on what I can do, learning better how to be kind to myself and put improving my health first.  Maybe it wont change anything, maybe it’ll change everything but I really felt a strong push to make this move.  We’ll see.

My longer term goal is to slowly improve, get back on my mountain bike, enjoy nature, do and teach yoga and Qigong and start a support group for others in my area that are dealing with chronic illness.  Oh yes, and paint…..my new passion, which, by the way I wouldn’t have discovered had I not been ill and had my best friend encouraging me to continue.  There’s always a way to be thankful for whatever situation life puts you in.

Peace, Love and Joy!

 

Acceptance and Pacing

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Went to Barcelona, Spain for a month with my sister.  I wasn’t feeling great health-wise but I DID IT!  I want to share with you what things helped with traveling when you have a chronic illness.  So much help at this site.  Check it out.  Support groups, study groups, classes.  This has helped me tremendously.   http://www.cfidsselfhelp.org/

So, for traveling it begins when you make airline reservations.  Make sure to tell them to have a wheelchair available for you at each connection.  It doesn’t matter if you can walk it’s the idea that you WILL save energy and arrive at your destination in condition to have a good time.  Every airport between Oregon, Canada and Spain was so helpful.  The person traveling with you also will be following you so this helps to get through security and take elevators to destinations….it all helps.  The other suggestion is to buy a tripod camping chair.  They’re very light with a strap to throw over your shoulder.  I literally did not even know I was carrying it but it was so handy.  If I found myself in a line I’d just pull out my chair and sit and rest.  Anytime you find yourself in a location where there’s nowhere to sit, just pull out your chair.

I was able to use the subway, buses and trains in Spain to save steps.  It was all about listening to my body and resting when I get tired.  It worked.  The only problem I had was that I had to come back and face responsibilities at home.  Being gone this long made me realize what changes I needed to make at home.  I needed to speak up and not accept invitations every day.  It’s important to always have at least one day between events to rest more.  I needed to time how long I spend on the phone and limit that.  I need to limit time on the computer and switch to another activity.  I need to “chunk” big projects down by working on it for 10 minutes and resting….break it up over a week’s time instead of trying to do it all at once.  So many things (T-3) to the thyroid med I’m already taking.  Just a very small amount.  It seems to be working.  I’ve also decided to start a new protocol which involves taking monolaurin, a supplement that, building up slowly to the full amount, can rid your body of most bad bacteria and viruses.  It’s being given to people with Lyme disease but will work for Epstein Barr Virus.  So I just started a week ago, very slowly building up to 3 scoops 3 x a day on a full stomach.  I’ve also started using DoTerra supplements which I did notice more energy while taking.  It’s only been a month but I ran out and do notice the difference.  This is the first time a supplement actually made a difference when taking it.  I like the essential oils so much I decided to be a member and sell them as well at My DoTerra.

When you have a chronic illness the most important thing you can do is pull yourself out of depression, the thoughts of, what did I do to cause this, of how much pain you’re in, of how you’ve lost the life you loved and REINVENT a new life.  You didn’t do anything to cause you’re illness, it’s not your fault, shit happens and that’s it.  It is what it is so now it’s time to move on and find ways of living your life that bring you joy.  For me it is learning water color painting, writing, yoga, meditation, qi gong, but most of all helping others.  If I can help one person every day in some way I feel like I’ve contributed something to improving the world.  It could be just smiling at someone you see on the street or sharing information that might help them in their journey, a phone call to a friend in need….You can accomplish much more than you realize so just keep on keeping on.  Love you!

 

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ME/Chronic Fatigue and Orthostatic Intolerance

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What a journey! Sometimes you have to reach the bottom to be able to move forward. I felt like I just couldn’t live this way anymore…then it occurred to me….when I had this exhaustion and pain before what did I do differently that made a difference….the only thing I really have any control over….I needed to CHANGE MY THOUGHTS! I could be depressed with what life’s thrown at me or I could find things to be grateful for, appreciate what I’m still able to do, be with people who are supportive, find things to make me laugh, do yoga, meditate. I nourish my body with healthy food and gentle exercise….but I wasn’t feeding my mind with good thoughts. Time for a change….I’m worth it!

I’ve been reading about Low Dose Naltrexone (LDN) helping some with ME/CFS, MS, Fibromyalgia and even cancer….so I’ve been wanting to find a doctor who might prescribe it for me. I was following a Facebook page of people who were sharing their experiences with it.  You can find it on Facebook under LDN Low Dose Naltrexone for ME/Chronic Fatigue.  I decided to call a compounding pharmacy I knew and ask them if they make LDN and if they could give me a list of doctors who are prescribing it.  I ended up finding a NP in SLC who was fantastic.  Had my first appoint last week.  The first time I actually felt listened to and understood.  She looked at all my labs, asked me questions and said yes, I had ME/CFS and did a test in the office with my pulse….testing it while lying down and again while standing.  It jumped from 62 to 94 just from standing up.  She said this was orthostatic intolerance and that because my BP is so low and doesn’t respond automatically when I stand, the body, to compensate and get blood to your heart and head raises your pulse.  This takes a lot of energy and could be a factor in why I’m so tired.  There is a medication she wanted me to try….called Medodrine.  I take it 3 times a day.  We’ll see how it goes.  She said she would let me try LDN if I wanted but wanted me to try this first.

In the meantime I also need to learn how to pace myself better with the CFS.  I got a book called Managing Chronic Fatigue Syndrome and Fibromyalgia.  Feel Better, Take Charge, Regain Hope by Bruce Campbell, PhD.  Excellent!  I’m also seeing a wonderful counselor, went back to watching and reading “The Secret” to keep my focus positive, I bought a sensor and watch that tracks my pulse…so if I see it getting too high I can stop and rest.  The LN suggested I rest 15 minutes every hour.  I noticed often times I lay down but am always reading or watching T.V. or talking on the phone…not good, I have to really rest, close my eyes, concentrate on my breath, relax.  It’s also very important to exercise but not so much that it affects you negatively.  So I found I could do gentle yoga without it affecting my pulse at all.  Cool!  Love doing that…very relaxing.  I also take a short walk….started with just 5 minutes.  I’m getting there.  I’ll keep posting what’s helping me and what I learn.

Here’s the forward written by Charles Lapp, MD for Bruce Campbell’s book, Managing Chronic Fatigue Syndrome and Fibromyalgia…”I occasionally lecture on the Holy Grail because the myth parallels what I hear daily in my practice of medicine:  patients on a mission to find a miraculous panacea.  this is particularly the case for persons with CFS or FM.  Humiliated by doctors who don’t understand and rejected by a medical system that relegates CFS and FM to “mental disorders,” many begin a pilgrimage to find anyone and anything that might help.  Like the Knights of the Roundtable, they make perilous journeys,  fight battles along the way and overcome numerous challenges.  Most end up worn out and frustrated.  There are a few souls who do find a panacea of sorts.  Like Galahad, they discover that reaching the goal is less important than the journey itself.  These souls discover that when they’ve seen all the doctors, tried all the drugs, and explored all the alternatives, the most effective treatment for CFS and FM comes from within:  They learn to deal with the illness.  While medications may palliate the terrible symptoms, these valiant heroes have learned that CFS and FM are best managed with adaptation and lifestyle changes that lead to new meaning and self-worth.”

Chronic Active Epstein Barr Virus

I’m still here!  Moved back to Utah.  We found a beautiful 1938 Art Deco home.  I wanted to be near my Sons and Grandkids, have all my things in one place, have a garden and a dog.  Done, done, done and done.  Now if I could only get my health back.  I dream about riding the mountain bike trails around here.  Absolutely fabulous and fun.

2015-07-18 08.48.57 2015-07-21 14.38.37 2015-07-25 12.13.21 2015-07-04 19.42.49  I Wish I could say I’m totally better.  I was at least functioning somewhat and having some really GREAT days here and there!  Unfortunately, I’ve recently been going through another “flare” of this Chronic Epstein Barr Virus thing.  I know there are others out there that are going through the same thing or worse and I want to say I understand what you’re going through and I pray for you and wish you healing.  I hold on and hold on….then cry and cry…then pick myself up again and focus on something else wonderful in my life that I’m grateful for.  This last episode started 2 years ago and the thought that I never fully recovered yet and it’s going to start again is almost more than I can bare.  But, I will, because I have no choice….plus, maybe what I’m going through could help someone else in some way.

I signed up to be a part of a study, Solve ME/CFS Biobank see Solve CFS an organization trying to raise money to research Chronic Fatigue Syndrome.  Researchers have discovered so many amazing new things for other diseases….hoping the focus can lead to something for this as well.

There are a few things I’ve been reading about where people have had some success.  One is using Tagamet and Zantac for chronic fatigue….read excerpt from the book here:   Tagamet and Chronic Fatigue.  I guess the idea is that it helps an overactive immune system that is attacking your body attack the drug instead.  It’s inexpensive and something worth trying.  Great Plains Lab has an article about using Zinc and Tagamet (cimetidine) helping with Candida and immune deficiencies see Zinc and Tagamet for Immune Deficiencies.  They have some great protocols for children with autism, down syndrome and seizure disorders.

I have an appointment in September with two doctors in the Infectious Disease Department at the Utah University Hospital.  I’m hoping I can at least make sure I don’t have anything else going on besides the chronic EBV and come up with a plan of action from here.  Other than that I’ve decided nothing I’ve tried with naturopaths, supplements and diets has worked…so I’m DONE with all that!  I’m just going to eat a good healthy diet, stay gluten free, continue doing qigong, meditation, keep a positive attitude and laugh.

For the people that have good health and look at me and say, “You look fine to me.” or “Maybe you’re just depressed”  or “Maybe it’s just the weather” or “I know how you feel, I was real tired today”…please, if you’re my friend all I need from you to accept me for who I am…even if I can’t do the things I used to do, I’m still the same person inside.  If you were experiencing what I am you’d feel a little down sometimes too.  I promise I won’t constantly talk about my illness, but I may need a shoulder to cry on occasionally…then I’ll be okay and can keep on keeping on.

From the book, How to Practice the Way to a Meaningful Life, “Under no circumstances should you lose hope.  Hopelessness is a real cause of failure.  Remember, you can overcome any problem.  Be calm, even when the external environment is confused or complicated; it will have little effect if your mind is at peace.  On the other hand, if your mind gives way to anger, then even when the world is peaceful and comfortable, peace of mind will elude you.

 

Adenosyl and Methyl B-12 Oil for Chronic Fatigue Syndrome

Still hanging around, SLOWLY improving….slow as a snail trying to cross the road trying not to get crushed along the way.  I know, I’m sounding frustrated, but those of you who are experiencing it yourselves understand.  On the positive side I actually went hiking the other day on one of my favorite trails here, through a bamboo forest, picking fresh thimble berries along a stream, ending at a beautiful waterfall.  This was about an hour hike…not real strenuous, but I did it.  I actually had windows of time that I felt normal again.  I’m so thankful for these days…they keep me going.20150207_14080520150206_142546

I’ve been told by some that it can take a full 2 years to recover from chronic Epstein Barr Syndrome, adrenal fatigue and/or chronic fatigue syndrome.  I know my body wants to heal and it’s capable of healing….it’s just so hard to stay positive sometimes.  I’ve been taking qigong and meditation classes that are great and I know are helpful in one way or another. There was a doctor in my meditation class that talked to me after class.  He said, “You know there isn’t any amount of meditation that’s going to help you.  He basically said there really isn’t anything out there that he knows of that has helped people with my problems…then he paused and said except for Tibetan medicine and he named a medicine they use that has helped people.  I thought it sounded like another thing that I’ll spend money on that doesn’t work…then again, in the back of my mind I think I might ask him again for the name and do some research.

So, what I’m doing right now is b-12 oils.  I was noticing that when I took my sublingual methyl cobalamin B-12 in the morning I often felt worse and it seemed weird to me…..so I got on-line to see if other people had a similar problem and yes there are others with the same reactions, probably due to genetic mutations.  One lady referred to this site B12 Oils.  She said it wasn’t a great site, but if you have questions there is a guy, Greg, who is a biochemist, that is incredibly helpful and wow, was she right.

He asked me for my genetic data from 23 and me and went even a step further than the other biochemist I have helping me.  He did all this free of charge, by the way.  This is what he told me, “Just looking at the SNPs with double mutations, the FUT which is slightly over-expressed in CFS, and may explain some susceptibility to infection.  GAD, the enzyme is involved in making GABA, so reduced activity will mean that there is less GABA and so lower ability to dampen down over excited neurons.  BHMT will reduce your ability to use betaine (from choline or phosphorylcholine) for a source of methyl groups.  It has been stated that up to 40% of your SAM synthesis comes via this route  If this is the case you will be “stressed” to make methyl groups.  PEMT means that it is hard to convert phosphatidylethanlamine to phosphatidylcholine. This may mean that you would do well on lecithin, or eggs.  SOD is not very well explained, but it is supposed to be active in reducing oxidative stress.  This will be reduced.  MTHFR and MTRR and MAO all need riboflavin (or at least FAD) as does NOS, so if you are deficient in B2 your enzymes will work much, much lower.  If your metabolism shows signs of riboflavin deficiency you will also have a compromised immune system and multiple food sensitivities to histamines and tyramine in food.  Prolonged B2 deficiency eventually leads to B12 deficiency in otherwise normal individuals.” WHEWWW!  I’ll be getting retested on my thyroid and other basic tests in a week so I’m hoping to include one for riboflavin.  In the meantime Greg also suggested, if I can afford it, a lab called OAT (organic acids test)  He said this test is very helpful in pinpointing further where I’m having problems.  I checked with my insurance and it looks like it might be covered but I have to get my doctor to send the reasons why I need it to Blue Cross.  He agreed, so I’m hoping to get this done in the next month or two.  Here’s the site for the lab that does this as well as many other helpful tests, for anything from ADHD, autism and autoimmune chronic diseases,  Great Plains Lab.

From Tony Robbins book, Money, Master the Game, “We all get what we tolerate so stop tolerating excuses within yourself, limiting beliefs of the past, or half-assed or fearful states.  Use your body as a tool to snap yourself into a place of sheer will, determination and commitment.”

 

Methyl folate Supplements

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Happy New Year everyone!  Best wishes for good health, moments of laughter and joy and much love.

  This journey is, evidently, a long one.  They say it’s gradual, that you notice a good day now and then, until one day you realize there are more good days than bad and you’re doing things you haven’t been able to do in a long time.  It’s been over a year of “ill health”, complete exhaustion, chronic Epstein Barr Virus and whatever unknowns might still be undiscovered…..and yes, I can say I’m having good days….sometimes really good days.  I’ve been able to swim in the ocean, hike short distances and feel more like a functional human being.  I still have scary bad days too, but try to remind myself that it’s only temporary and a good day is on its way.

Currently I’m taking 200 mcg of methyl folate with 50 mg of niacin.  When I first tried methylfolate I increased daily until I reached 800 mcg.  I felt much worse with symptoms of increased exhaustion, anxiety, insomnia even though I was also taking 100 mg of niacin to help with the side effects.  So, Steve Ottersberg, the biochemist I’m working with, told me to go back down to 200 mcg for a month and then recheck my sulfur levels again or get another homosysteine test and see how I feel.  I’m almost at the one month timeframe and don’t feel much different at this point.  Some good days, some bad.  I’ll see what the tests show and how to proceed.  I’m so thankful for the good days and am learning new things on the bad days. When I’m unable to be active I found I enjoy doing jigsaw puzzles (kind of like meditation), or doing a watercolor project.  Other days I can take walks or go to Qui Gong class.  Life is good.

From Michael Singer’s book, The Untethered Soul, Learn to stop resisting reality, and what used to look like stressful problems will begin to look like the stepping-stones of your spiritual journey.