Category Archives: Chronic EBV

Acceptance and Pacing

2016-06-07 11.35.192016-06-07 11.28.47

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!

 

2016-05-28 16.00.12

 

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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.