Egull1's Journal, 28 October 2018

Week 6 of Maintenance Calorie Trajectory

As some may recall, last week I held steady at an average of 1545 cals/day, but I rearranged my cals so that I was able to eat more on my birthday. That went well, and I had a wonderful b-day weekend filled with many relaxing, beautiful, peaceful moments. I definitely hit my fun time cals at 2323, but didn't go past or if I did, it was not by much since as we all know most caloric estimates are approximations.

I also burned a good amount of cals yesterday as I made sure to get my strength training routine in and both my mother and I got in our fair share of steps at the wild life refuge we visited.

I did note subtracting 100 cals/day in order to give myself some fun food cushion worked out well. I didn't feel like I was starving, but I did observe being hungry before I went to bed some nights.

As planned, I'm going to continue to hold steady for another week longer at an average of 1545 cals/day and see where we are next weigh in. I won't be subtracting any cals like the week before, so the below trajectory are the correct markers. I did not weigh in this weekend because there's no point after a 2300 cal day. It doesn't provide any significant data. However, I did use my calipers on Saturday morning and I'm still holding steady at 22.8 % body fat, which I'm absolutely okay with.

Strength training and weights continue to go well and I find myself vacillating between shortening the cycles between increasing reps or keeping it where it's at. Some workouts feel like I might easily increase the reps earlier than planned and some have me thankful I have a few more workouts before a planned increase. It's the "MS fatigue" that keeps me reticent.

I'm verily aware when I began this venture 20 months ago and didn't know I had MS, part of the reason I had a "flare-up" to begin with is that I was over-exercising. I was putting too much in one session and it was too much on a system that was already being compromised by its own T-cells. I don't regret this, because without that flare up we might have never caught it until my butt was in a wheel chair instead of a walker.

Needless, to say when I got out of the hospital I tried to keep up with those intense workouts of yore, but MS comes with some intense fatigue because the brain has to find workarounds and access other parts in order send out signals, kind of like a back up generator. It can find the workaround, but in order to do it other parts get compromised and the exhaustion can feel so intense it actually effects the vocal chords and it's difficult to talk much less move. It's not all the time, but intense activity for long durations can bring it on for sure.

I finally gave in and split up the routines in Oct. 2017, making cardio on one day, weights and resistance training on another, and yoga couched in between. I go 6 cycles of this before I increase reps. Honestly, it was the best thing I ever did. The immuno suppressant kicked in about that time too, so the inflammation in the body started to come down and recovery time shortened.

That was 46 lbs ago. On one had this body has A LOT more stamina. However, regarding the MS fatigue - stamina has nothing to do with that, because it's neurological. So, I think I'm going to hold steady with the 6 cycle approach a bit longer and if I have a steady run where I don't feel like I'm battling neurological fatigue - I'll give it a shot and shorten the cycles between rep increases.

And, yes I'm aware this is not how most folk approach strength training and weights, but that last flare up landed me in the hospital for 5 days with a $5,500 dollar bill. It's one thing to risk a flare up unknowingly, it's whole other to push one's luck. My white blood cells have already dropped 1% point, which is by no means critical, but I haven't been sick yet, and I rather veer on the side of safety.

Besides, I'm not seeing a reduction in these guns - they may just be growing at a slower rate. It's all good :-)

Have a blessed week, everyone!

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Comments 
You are being very thoughtful about your choices and loving to your body. I don't have MS but I did do chemo with breast cancer and that tiredness was so bone deep that it is hard to describe. When you describe your fatigue, I imagine that. I managed to maintain a daily exercise regimen during that time but some days were much harder than others. I am glad you are working with your body to find a middle path rather than seeing MS as outside your body and something to battle. 
28 Oct 18 by member: 59Carol
Thank you, 59Carol. And, much respect and love to you for continuing to work out through chemo. And, you are absolutely correct in assessing I do not see MS as something to battle. It does nothing, but exhaust this girls reserves to make a villainous monster out of something that is a mere result of causes and conditions. For some, that approach might work, but it doesn't for me. Seeing this condition as something to manage, collaborate with, research, and understand fosters the kind of loving connection with this form that allows this heart to appreciate both its fragility and its phenomenal strength and further creates a platform for mind and body to move beyond perceived boundaries and embody potential I never dreamed possible. In short, I see it simply as a different way to be and sense the world, rather than a disability. 
28 Oct 18 by member: Egull1
I get it on so many levels. I find the rhetoric around cancer very upsetting. It is all about war and fighting and battling and winning and losing. I am not and will not war with my own body! I am cancer free as far as I know now however I have had my time with the disease -- cervical cancer at age 22, skin cancer at age 40, breast cancer at age 54 and skin cancer at age 56. So I am vigilant! Presently my husband of 41 years has stage 4 bowel cancer with a poor future prognosis. My mom and dad both died from bowel cancer. So cancer is what I know. I am not knowledgeable about MS in the intimate way that I know cancer. So when I try to emphasize with you, I do draw on my Cancer experiences knowing that the two diseases are not the same but some of the experiences may intersect. For example, what 'tired' may actually mean! 
29 Oct 18 by member: 59Carol
You do a wonderful job of intersecting the similarities. I do know with some chemo treatments, they will include an immuno suppressant in with the cocktail. Believe it or not, a few of those are used to treat MS and other auto -immune conditions like methotrexate. It's interesting, as fatigued as I can get, I do find if I can push through a workout, regardless of whether its full intensity, I feel better afterward. My theory is that formal exercise taps the pharmacy in my brain (i.e., serotonin, dopamine, and other endorphins). It's in part why I do my best to stay consistent with it. I kind of look at it as the treatment and the medication I take as supplemental. So far the blood work is still looking good! But, it is indeed a balancing act.  
29 Oct 18 by member: Egull1
I found that what I did was I had a list every morning of what had to be done. It included brushing my teeth (great bacteria location!), getting dressed, doing mobility exercises (mostly arms from the surgery piece), going outside for a walk (no matter how short or how long) and eating nutritious homemade meals. Then the rest like tidy the house, doing dishes etc was part of the second half of the list that I only did if I felt up to it otherwise they were left! The exercise part was for me and my health. I had control over it like I didn't over the treatment and what it did to me. Any place where I could assert myself, I did! Like being bald -- I don't like to wear hats or scarves so I got a henna tattoo every 6 weeks, a couple days before each chemo treatment. I tried to do things on my terms and to avoid feeling controlled by the disease. I am not sure about the immuno suppressant but it had to be there as the whole point was to wipe out my immune system. I did end up nutropenic at one point. Definitely scary. 
29 Oct 18 by member: 59Carol
Very wise 59Carol and of course Egull1 I love hearing how you are handling MS! It is much the way I handled Lupus for many, many years. You learn to know when you can push and when to back off and not berate your poor body for that. I think it's an art. And always nurture and love that body!! 
29 Oct 18 by member: Horseshu1
Horseshu- I was hoping you might chime in, :-) If I handle it similarly, it's because you provided so much essential wisdom when I was first diagnosed. And, I just have to say it's such a comfort to have you both on here and sharing your experiences. In our circumstances, exploring what a health lifestyle is takes on a whole other definition. I know there's a part of this brain that's still in a bit of denial, regarding progression of this condition (I still refuse to use the word disease). But, there is a part of me that almost has to be because I don't want to be in that wheel chair someday and regret that I didn't enjoy this form in whatever way possible while I was able too. And, something tells me the strength I'm cultivating now will come in handy when I do hit that point. In fact, I know it will because I see it in you Horseshu as you deal with your current circumstances {{hugs}} 
29 Oct 18 by member: Egull1
It is a tightrope balancing act alright. I tell you girl, and I am a realist, but it is amazing how your body will seek healing and NON progression when you are sensitive to its needs. You body wants to be strong and will seek equilibrium. You just need to listen to how your body tells you. I've heard that wheelchair prediction several times and I'm still upright. And I really hear you when you say you don't want to "regret that I didn't enjoy this form in whatever way possible while I was able to." So true - you can and you will! 
30 Oct 18 by member: Horseshu1

     
 

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