The Beginning of a New Journey in the Treatment of my Illness ME/CFS

Sleepydust - About M.E. / Chronic Fatigue Syndrome

In a week’s time, Monday 3rd September 2007 I will begin a new treatment for my illness which is ME/CFS or Myalgic Encephalomyelitis or Chronic Fatigue Syndrome.  Some of you will not be familiar with this illness, some of you will not understand the impact of this illness and some of you won't even think this is an illness at all.  But it is a very real illness and the impact it has had on my life and the life of some dear friends is indescribable.  I have posted the video link above to give some people an idea of what ME/CFS is.  I haven't mentioned my illness too much of late, but it is a real presence in both mine and my family's daily life.

I decided to start the treatment after my son's wedding as the treatment may make me even more unwell for a while.  So the time has come.  I am nervous and I have actually become quite emotional as I have been writing this entry about the thought of the treatment .  I am nervous because of the potential side effects, the thought of becoming even more unwell and stepping backwards for a bit.  Emotional, well I can only put it down to the possibility of vastly improved health and a near "normal" life.  Emotional to the point of tears and I must admit I wasn't expecting feeling this way, but it has hit me.

Besides the possibility of side effects, the treatment itself will have an impact on my life.  My diet will have to change quite considerably and I must avoid virtually all sources of vitamin D both in foods and of course sunlight.  My eyes will also become more sensitive to light.  I will have to wear special sunglasses both in and outdoors during my waking hours.  I also have to avoid added folic acid in foods, soy products, and a few other things.  I also have Coeliac Disease (allergic to gluten), so as it is I already can't have anything that contains wheat, barley, rye, oats and a few other grains, so my diet is already restricted.  Another problem with Coeliac Disease it can also make someone lactose intolerant which means dairy foods can be an issue, I only have this problem to a small degree and I have been having Soy milk instead of regular cow's milk, but not anymore.   One bonus is I will probably loose some weight, after all water doesn't provide many calories.

So besides all of the foods that contain wheat, barley, rye, oats.  I will now not be able to have the following:

AVOID foods w/ natural Vit. D:

·         All fish and fish oil products (includes tuna)
·         All seafood
·         All shellfish
·         All flax seed products
·         Alfalfa
·         Mushrooms
·         Pumpkin seeds
·         Sunflower products
·         Primrose oil
·         Grapeseed oil
·         White or enriched flour & products
·         Fish sauce (often found in oriental foods)
·         Worcesteshire Sauce (contains anchovies)
·         Seaweed, Kelp (check processed food ingredients)
·         Egg yolks (egg whites are okay to eat)
·         Mayonnaise (contains egg yolks)
·         Ranch salad dressing (contains egg yolks)
·         Butter
·         Cream
·         High fat dairy products (yogurt, ice cream, cheeses)
·         Meat fat (Vit.D is stored in animal fat)
·         Pork rinds
·         Bacon
·         Pork sausage


AVOID if Vit. D listed as ingredient:

·         Milk (use unfortified, low-fat varieties in moderation)
·         Yogurt (low fat, sucralose)
·         Any dairy products with >6% Vit. A
·         Ice cream (if eggs listed)
·         Margarine
·         Breakfast cereals
·         Bread
·         Protein drinks
·         Diet drinks
·         Cereal bars
·         Nutrition bars
·         Fruit juice
·         Grains (whole grains preferred)
 

Warnings:

·         Soy products (limit due to genistein content)
.         Coffee (limit due to chlorogenic acid content) 
·         Aspartame
·         MSG
·         Folic acid/Folate enriched products
·         Yellow #5 – Tartrazine
·         Avoid refined sugar
.         Whey powder
.         White or enriched flour
.         Highly processed foods

Anyway I have no idea how this treatment will affect me, if it will improve my life, but I have to give it a go.  I can't be left wondering, "What if?"  So if I am not around for a bit very soon you will know why - I am trying to save my world.

The treatment is known as the Marshall Protocol.

ME/CFS Awareness - Video

Imagine being so unwell that you can’t even talk on the phone to your friends, let alone get out of the house! Saturday was Myalgic Encephylomyalitis / Chronic Fatigue Syndrome International Awareness day. Steve Cannane found out more about this debilitating condition.

As some-one with ME/CFS I found it to be a very good presentation.

ME/CFS Awareness

Another excellent video explaining ME/CFS is:

Sleepydust - About M.E. / Chronic Fatigue Syndrome

Major rest mode today!

Very quickly, I am not feeling that crash hot.  I have to work this arvo.  I plan to drive B to his footy match tomorrow which ia a 65km drive (so 130km round trip) and I haven't driven that far for 7 years.  Plus there is an Air show here over the weekend and Hubby wants to go to it, and I wouldn't mind tagging along.

So time for some R & R.

Have a great weekend.

Go the Mighty Magpies and Melbourne Storm.

A Positive Story Always Helps

Chezza, he had a virus, probably 10-15 years ago and come down with CFS/ME. It was really bad and he was in a wheelchair for a few years. Anyway, he has short relapses at times still, but they sort of get further apart as the years pass and get a bit shorter. He is very fit for a 75+, still plays a bit of tennis and stuff. Pretty spry. It knocked him around for sure tho'.
 
You have really struggled but I know Dad rested whenever he started to feel tired and stopped trying to push himself and that's when some recovery happened.

Son B's Basketball and some work to come

Go Chezza!