Working on the protocol


It’s not easy to get three liters of water into me every day (protocol calls for 2.5L+). I start immediately upon awakening with a cup of tea and a full glass of water. I go for the 3 L because I’m not sure where food is concerned and I hope the higher amount of water evens things out. I have blood and urine tests in September or October. Those will tell the tale.

I have been taking it easy. Two weeks away. Two weeks to recover. I had not anticipated that long a recovery but I am used to it from previous trips. In that way, I’m still the same person.

There is mention of PPI (protein pump inhibitors) concerning the Coimbra protocol. I was on Aciphex for more than ten years and whenever I tried to stop before, my stomach felt like it was bleeding. But for the past few months, my body has been telling me I don’t need it anymore. (I listen very carefully to that still small voice that tells me the really important things in life.) I gathered info in case I had the indigestion, etc. that usually goes along with stopping (weaning was recommended but I just stopped). That was a surprise! No problems. A couple of times I was uncomfortable but not in need of anything more than one tablet of Alka Seltzer GOLD (not blue). The gold does not have aspirin in it and is easier on the stomach. So that’s one giant step. My body will now absorb nutrients and supplements far better than it couldĀ  before.

I’ve lost about eight pounds in a over ten weeks. Still within my comfort zone and clothes fit better.

Sleep is not a problem. I really need a nap every afternoon but fight it more often than not. Without a nap, I’m in bed by nine. When I had trigeminal neuralgia I learned that I can stay asleep more easily if I’m listening to gentle music. Twenty years ago, I listened to mindful meditation tapes. Now, I’m listening to the CD from the retreat we attended two years ago. Or the prayer of St Francis.

The mineral supplements arrived and I started slowly but have had no issue with them and stomach, either. I am now taking the prescribed four a day. One with each meal and one at bedtime. Another piece of the puzzle in place.

No gym yet. I got up yesterday morning and while my engine would turn over, it would not catch, if you know what I mean. I returned from CA thinking I was cured, even though while there we rested, took naps, went to bed early. It disguised my fatigue. Can’t wait until the d makes that go away.

The hardest thing is my abilities/limitations. I don’t know what they are anymore. A friend asked me to a committee breakfast in two weeks. Yes, I responded, confidently. But really I should tell her to call me the morning of the event! I’ll do my best to be ready. It’s difficult for people to ‘get it’ when I look so good. That is, when I’m out. Yesterday the chiropractor could see I was not chipper. “You were raring to go when I saw you last. What happened?” I explained – again – that I was on an adrenaline high when I got back that lasted about 48 hours before gravity caught up with me.

I’m back to scheduling one or two things per week! I need time in between to rest and rest some more. Once I appreciate the need and give in to the inevitable, life gets easier. I shrug off the responsibilities and relax. Not a simple thing to do but something with which I am very familiar.

Saturday I start my 12th week. Indeed, it has not been a smooth path. But nothing is ever smooth with ms. The hope of a better quality of life is still firmly planted in my brain. I will get there.




This post was written by , posted on July 28, 2016 Thursday at 8:40 am
  • Frannie says:

    You are a wonder, dear Kate! You are so much better than you were before and your perseverance to the protocol is inspiring.
    Two weeks with a new grandchild is exhausting without MS. You have accomplished so much and I am awed.
    I love you, Frannie

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