WeAreLupus.org - The Social Support Network for People Living with Lupus & Fibromyalgia

maria

Okay, I'll get started...

My goal is to somehow trick myself into exercising without knowing I'm doing it - bottom line, so to speak. I grew up as a tomboy, played several sports throughout high school, played city league volleyball and softball (still do the softball, but rec league), love the outdoors including hiking, cross country skiing and camping. Now, reality check: I love to do the stuff, but find myself struggling to meet my own expectations and my lupus is beginning to really get in the way after a decade. What shape I was in because of my activity level in my younger years has gone by the way side with every passing year. My fitness stores, you might say, are depleted.

Why I think it's important for me to start addressing this weakening can be summed up in one word - tomorrow. I have teenage girls who want to be active and need to see that living an active lifewtyle will benefit them tremendously. I want to live for tomorrows that offer me joy and remaining something of my pre-lupus self is what gives me the most joy these days. I am primary caretaker of my mom, who is healthy now, but in her 70's - I have to stay strong in order to be here for her. Finally - I'm just plain worth the effort.

What are you thinking about in terms of  'exercise' and/or do you have any goals/wishes regarding managing your health with movement?

29 months ago

maria

I guess I’ll be jumping in on this book alone – or perhaps you’ll at least join me incognito and lurk as I go through it. I think the first phase of this book will be sufficient for this winter.

Her book starts out with an introduction to what brought her to creating this book/program. Basically, she complained about the same things I’ve been feeling – cooped up, bored and not seeing much progress at the gym. She uses the word “intuitive” to describe this exercise program, which is exactly what I think many of us with physical challenges need to have included in any routine. Paying attention to what we are doing not only gives us a better workout by maneuvering our way safely around our environment, but it also keeps us conscious of whether we’re pushing too hard or too fast.

In a gym, as she points out, it is very easy to become brain-dead or robotic in what we’re doing. We probably go into a sleep mode similar to what our computers do if they aren’t being ‘challenged’ to do something. I think, for myself, that is probably the biggest reason why I resist the gym and crave more social interaction. Granted, taking part in an exercise program outdoors does come with its concerns...slipping, step miscalculations, weather, daylight restrictions (shorter hours in the winter means working outside has to be done at a peak times with no room to do it “later”) and more.

If you haven’t yet, go through the intro to get an outline of what this program is going to involve. In case, you’re not going to get the book...ahem, the first phase of her program (which is the only one we’ll be reading up to) is geared toward:

- learning her “base moves” (basic strengthening, flexibility and endurance for mind and body),

-getting comfortable with exercising outdoors,

-and learning some valuable skills including balance, breathing, and posture/alignment.

She emphasizes that we will be “rewiring” our brains by utilizing the power behind our emotions to build focus and acuity. The first phase, in her opinion, is like returning to our childhoods and rediscovering the fun playing outside. In her first chapter, she discusses the “Biophilia Effect” ( introduced by Harvard biologist E.O. Wilson) that defined literally as “love of life”. If that doesn’t describe the essence of what childhood should be about, I don’t know what is!

You might also check out the last chapters (9 and 10) that cover eating/diet and the most common questions people have about her program. I will be talking a little more about the eating section later.

This week’s goal for me:
-To review the latter half of Chapter 1 on “Environmental Integration” ( basically, becoming aware of your environment using all of your senses including intuition). Although she doesn’t, I would venture to add taste since it is so directly connected to olfactory or smell). Other terms I want to become more confident about are self-determining RPE (Rate of Perceived Exertion), Kinesthetic (comprehension of my physical place in environment) and Proprioceptive Awareness (neurological message responses that are built into kinesthetic awareness or “fine-tuned spatial sensitivity”). These three are very important when you are outside facing many angles, depths and uneven terrain.

-To continue with Chapters 2 (Mind-Body Connection) and 3 (Getting Ready-actually putting it on paper). Chapter 4 covers stretches and formats tht an exercise routine should include and I skip to that with every chapter to learn some basic moves. Chapter 5 will be actually implementing the program using her “base exercises”. I see this in our third week and will be updating this discussion group on adventures, tumbles and progress throughout the winter. I will be mentioning where I will be and really hope those of you here in the Portland area will join me. The times can be worked out by emailing me if you are interested.  :)

29 months ago

maria

As luck would have it, just as I attempt at getting myself moving and taking care of my physical self, my emotional self takes a nose dive.

I admit to really hating web stuff. Not wanting to be left behind, I have stepped into the world of blogging, social networks and the communication realm that seems to be dominating our lives. As I venture in, though, my physical self has begun to really present some problems sitting in front of the computer all day – which is a big reason why I chose this book. I needed a respite from the screen to fresh air and movement.

I only know enough about web stuff to get me by and, apparently, someone figured that out. As I suspected, my blog and bulletin boards were hacked by a really bored goon. A whole year and one-half had to be rescued, preserved and put into storage as I paid big bucks to get someone in who knows how to find the worm, clear up the code and start completely over with a new blog. Although I had been looking forward to updating the blog/project for months, I didn’t expect to be forced into it while the weather was still great for being outdoors and this discussion group had just started.

So, at this point, I have put aside the book for now while I exercise some self-control and stress management getting through this awful web process. There is a particular part of this book, however, that I did pick up on something that seems fitting to mention in this last post for this final ‘discussion’.

In her second chapter, Ms. Vindum covers the aspects of “Mental Fitness”, the “BodyMind” connection and understanding how it all comes together to create a successful workout. Since I’m doing a lot more thinking these days than ‘wall sits’, this chapter helped me target the area I need help in at the moment.

I was happy to see that she addresses the mind-body connection, which is a necessary foundation for anyone living with lupus (or other chronic illnesses). Specifically, she mentions the neuropeptide receptors first discovered by the scientist Dr. Candace Pert, which Vindum refers to as ‘unlocking molecules’. The discovery led to the new field of psychoneuroimmunology and a better understanding of just how interconnected our physical selves are to our mental selves. These neuropeptide receptors signal our brain cells to open and allow opiates (like morphine) to enter the brain cells, causing an interaction between our thoughts and our physical responses.

Bringing this mind-body connection to my present days has meant letting go of getting outdoors for now – even though the weather is absolutely beautiful! Once again, my life is being held hostage by my mind and my body suffers for it. As my receptors scream to get my brain cells to open the gates while I try to make a living, my overactive immune system is also sending out its fleet of killer cells...because something is ‘wrong’. Where is the pause button in this mayhem? Which system do I attend to first – financial, mental, emotional, physical?

According to her, the emotional is where I need to start. As the in-between place centered with the mind on one side and my “matter” on the other, it is the once place that can mediate my way to that pause button. Coincidentally, as I pursue the ‘mindfulness’ she states as being in ‘the moment’ and get closer to sensing my “kinesthetic awareness”, I’ve only stubbed my toe twice so far today. In the last week, I must have accumulated seven bruises and permanently damaged my right pinky toe. There’s my evidence in that mind-body disconnect all this ‘living’ knee-deep in stress has gotten me.

What does she recommend for some exercises to help focus on the emotional ‘systems’ right now?

Obviously, imagery. I say that because we hear that time and time again, to the point where I just shrug it off anymore. As I’ve already fessed up to, I can’t clear my head very well to meditate and, certainly, not to imagine being in a fantasy place where the butterflies float in a meadow...yeah,yeah. She’s on to me, too...because as she discusses in the challenges of mindfulness – being focused on the moment – she introduces what she calls her “PMJ exercises”. (pg. 25).

These exercises are basically designed to help clear the clutter of our bombarding thoughts as we would our emails or the papers covering our desks. Creating a system of categorizing these thoughts allows us to stick them in the appropriate folder to retrieve when we can, must, want to later. Since that is all I’ve been doing for the past two weeks, it was an easy shift to try it with my thoughts as well. And, it works. The minute I get a thought, I put it into a category and file it – I’m back to the moment, helping me focus on the task at hand rather than beat myself up emotionally for not getting to all those things I have waiting for me.

Pairing it with checking my posture (I slouch), I can multi-task this exercise that leads to more mental clarity, exercising my muscles by sitting up straight, bringing in more air when I breathe thereby de-stressing the moment and feel better about myself as I get through all that I can’t avoid.

Pretty good, I’d say. Think I’ll step outside for a minute and go do it all again...

28 months ago