Demons in my head

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I am heavy hearted. I have come to a ginormous realization, the kind that changes your life. I don’t know why it happened yesterday as nothing unusual was going on. But I have had a huge personal breakthrough.

For as long as I can remember I have struggled with my weight. My first Weight Watchers meeting was when I was 13. I can’t recall what I weighed but at the time I felt very large and had what I thought was a big tummy. Looking back I’m surprised they let me join. And since then, I have done almost every diet plan out there. I have ranged from 111-199 pounds in the last 32 years. Right now I am nearing my highest point again and this time it is REALLY REALLY bothering me.

Part of my big realization is the fact that I can not stand when I hear women berate themselves over their weight or their appearance. I am quick to correct them and tell them something beautiful about themselves or remind them that their legs work so they should be grateful. This pet peeve has come around in the last 5-10 years as I have watched the media destroy women over their appearance and it kills me. I used to be SO hard on myself at such an early age, and I let so much of it go.

Or so I thought… One part of my realization is that I still talk very ugly to myself but I do so way down deep, ever so quietly. Its almost worse to think you are kind and loving to yourself and realizing your thoughts are vicious. I am not nearly as outspoken about my disgust at my body, even in my own mind… I just call myself ugly things. I am my own bully.

In the apartment we are living in now, you come out of the bedroom and right in front of you is the bathroom counter with the mirror. You can quickly turn into the living space and not look at the mirror.  But if you are heading to the sink or the toilet, you are facing it head on. I see myself walk to the bathroom every morning and all I quietly think is ‘gross’ or ‘disgusting’. You see what I mean? My daily thoughts of telling myself I am worthless or lazy for not exercising have gotten so much better. I talked myself out of those thoughts… yet my demons still lurk.

As you all probably know, assuming you are all my friends that read this blog, my daughter has lost 135 pounds. She is 17. I have watched her transform herself by doing all the healthy things we are told to do: smaller portions, more water, no eating past 7pm, no soda, no snacking. She is a TRUE inspiration (130poundsgone on Instagram) and yet I lived with her and continued to gain weight. I am asked often ‘why did she decide to lose weight?’ which I think is an interesting question. I think she just got tired of being over 260 pounds as a teenager. And yesterday I got tired of being over 190.

Having MS is hard on a body. I remember when I was diagnosed at 27 and the doctors said I would ‘age early’. They said I would know the feeling of stiff joints and loss of flexibility before others my age due to the disease. I didn’t register what that meant. I educated myself on the BEST way to take care of myself with this disease. So I started on my regimen of MS medication and a new dose of supplements every day and I lost weight. I had lots of baby weight still on, as my daughter was 5 months old when I was diagnosed in April. By Christmas of that year I was down to 135 lbs and feeling really great. I thought I had this MS thing all under control.

And then the depression hit. By April of the next year I was so depressed I could hardly get out of bed. I was looking at a two story deck, while my children were playing next to me, and wondering if I would do enough damage if I jumped off it. I was not well. I put on 20 lbs in 2 months. I ended up having to change my MS medicine as we realized that was the culprit of the depression. I went from a weekly IM injection to a every other day SQ injection. I got better but never got as healthy as I was at the Christmas before. The depression monster started lurking around regularly, always reminding me it was right there whenever I wanted to chat.

Over the next decade I switched my MS medication again due to another bout of depression (this time it was a daily SQ injection), saw many therapists, took various doses of antidepressants and analyzed the shit out of myself. I beat myself up internally on a level that was never healthy. I acted strong and confident on the outside while I ate all kinds of junk late night and buried my pain and fear in all kinds of things. I searched for answers and slowly began peeling back the onion of my heart to figure out who I really was.

Then a few years ago I was introduced to Brené Brown‘s work. She is a shame researcher from the University of Houston and has written several books. Between my latest therapist at the time, and The Gifts of Imperfection, I started valuing myself a little more. Then in Spring of 2016 I did the Living Brave online class with my sister and Brené officially became my new (virtual) therapist. Her work opened my eyes to all kinds of things. I started seeing the world as a more beautiful place (and really meaning it.)

As my weight has slowly crept up again with this new move and living in a small apartment, I realized I am still not balanced. I was strong enough to give myself an injection everyday for 12 years but continued to secretly hide my pain in a bag of chips or popcorn. I made a million excuses to why I ‘couldn’t’ lose weight: MS, antidepressants, PCOS, you name it. I made excuses about how I couldn’t push myself physically because I couldn’t let my core get hot, while the whole time I was sitting with 50+ pounds around my middle and not exercising in the name of overall health. What bullshit.

I take a handful of supplements and vitamins everyday because I have read they help the brain. I am willing to do what it takes to be as proactive with this disease, yet I have held on way too tight to my horrible eating habits as a way of comfort. I overeat. I snack late at night. Yes, I’m gluten free, for my health…ha! But I can eat a whole box of GF cookies in one sitting. It’s not about what you eat, as my daughter has shown me, it’s about HOW MUCH. And more importantly, it’s about how much do you value and LOVE yourself? Food has always been my crutch, but no more.

I am committing to forgiving myself for the way I have abused my body. I am learning, at 45 years old, what balance really looks like. And no matter what we think, we have to dig deep down and ask ourselves what we are really thinking when we walk in front of the mirror, to the bathroom in the morning.

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I wasn’t just LAZY

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So now that I have sufficiently scared my husband into thinking I’m going to bankrupt us, I can go back to talking about my MS and how I got to where I am today. But first let me say that this shopping thing is real. I laid in the bathtub and shopped, the night after my last post, for awhile before I even realized what I was doing. I shopped for household goods that we need but I didn’t order anything. So progress I guess…

And speaking of progress, let me update you on my diet since I left you there. I did follow the Paleo Diet for the full 90 days and felt amazing. I regained my life back in a mere 3 months and ‘ate’ every word I ever said about diet being unable to affect my MS symptoms. I was shocked at my results. I had not had this level of energy for years. I felt GREAT.

Growing up as a teenager especially I remember having times of feeling extremely LAZY. My family would want to do something remotely athletic and I would dread it. Even skiing, which I loved, was becoming a chore. I perpetually thought I just didn’t move enough because I was a firm believer that “energy breeds energy,” as that was how I was raised. If I’d get off my ass I would feel much better but yet there were times it seemed impossible.

After my diagnosis I remember feeling justified. See, you suckers, I wasn’t lazy, I was SICK! It explained why I could always sleep longer and sounder than anyone else. The belief is that MS starts developing in your teens and is a culmination of a series of things that cause someone to develop it. It’s quite fascinating if you read the linked page about the 4 things that must be in play for MS to develop. It’s like russian roulette, and I got the chamber with the bullet.

For years I used to drag myself around the house. I would sit on the couch all day because my limbs felt like they weighed 300 pounds each. I would sit on the floor with my kids when they were little and fall asleep. Let me tell you, it’s pretty scary to wake up and realize you have been asleep while your young children are playing by themselves! I have missed school pickups, school parties, sporting events, birthdays and all because I was too tired to get there. If I ask my kids what I was like when they were young they say “asleep”. It breaks my heart.

Right after I was diagnosed someone emailed me this story. It is called ‘The Spoon Theory.’ It is written by Christine Miserandino about her explanation of life with a chronic illness. When I first read it I felt like my MS experience was finally put into words. I sent it to all my family and friends and tried to explain to my young kids. I can remember my daughter asking me, ‘how many spoons do you have today Mommy?’ But I had a hard time knowing how many spoons I had. I simply knew they were running low and it was only 10am.

Not long after I was sent this story, we bought our first iPod. We thought it was the greatest thing ever and after using it for awhile I felt like I could relate better to the battery on it than actual spoons. I think I struggled because I was never sure how many spoons I ‘should’ have when the day started. Some days I would wake up with 4 and some days 20. But the battery on the iPod suddenly became more tangible and I started adjusting the spoon theory to the battery. Then my daughter’s question became ‘how much battery do you have Mommy?’ and I felt like I could give her an answer that made more sense.

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The hardest thing about MS for me has been the fatigue. I would wake up some days, after sleeping 10-12 hours and still be in the ‘red’ on my battery. I would have to stay close to home all day because I needed to be plugged in to my bed. I can remember going to the grocery store, for years, and being so overstimulated by the lights and choices that I would have Rusty meet me at home to carry the groceries in and put them all away. I had to go straight to the couch. When I gave up the things in my diet that increased my inflammation, that all went away for me. I was back to being the ‘energizer bunny’ I had been when I was younger…and it scared me.

When I first got my energy back I remember being so scared that I would do something and it would all go away. I knew I couldn’t keep up the strict Paleo diet so I started adding things back in slowly to see what I could tolerate and what I couldn’t. I realized that gluten was definitely my BIG TRIGGER for the fatigue. I could envision it coursing through my body gobbling up my energy as if it was PacMan. I don’t believe gluten caused my MS but taking it out of my diet definitely decreased the systemic inflammation I had and made me feel so much better.

I still have maintained the gluten free lifestyle. Occasionally I will get ‘glutened’ and I get instant headaches and fatigue. It takes 14 days to get the gluten out of your system, so I get real strict after that. I can have a bite or two if it is a small ingredient and not be too bothered, but I know for me it is something to watch. My next ingredient I really need to work on is SUGAR. But just like I could never imagine giving up bread, I am dreading the idea of no sweets. As with gluten, I think I will eventually enjoy the way I feel much more than what those bites are worth.

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Diet won’t help my disease!

So the problem I have with blogging is I overthink it. I feel like I must say something worthy if I’m going to put it out there for the world to read. But I have to remember:

  1. The world isn’t reading MY blog. yet.
  2. What I have to share is worthy. Or at least I need to think it is.

I posted my last blog post and was nervous. Would anyone read it? Would they relate or appreciate it? And I got GREAT responses from so many of you! And I felt valued. All I wanted to do was blog more and more and share lot of things. But the days passed and I started second guessing what I should say. I started analyzing your comments about what you liked and the things you related to. But remember, I am trying to just be. So I shouldn’t analyze, like I was raised to do, and I shouldn’t overthink. I should just put myself out there.

I realized I also left you all with thinking I was hanging out with those two spinal lesions and life was scary. Well I’ll tell you, it was for several years. I continued to live in a depressed box and hide. I was so afraid of this stupid disease. I let it rule my life. I let it win. I had slowly added some things into my routine that I thought would help, like weekly massages and then CranioSacral Therapy. I continued my church work and reading and of course, crafting (always). But I said no to most things physical or scary. Anything that warmed up my core was a big NO. Because it then made me more tired or more tingly on my right side.

I continued to take the MS meds that were prescribed to me, while I also took a handful of alternative vitamins and supplements. I had good days and bad. I kept myself out of the hospital and my MRI’s, that I had every 18 months, were stable. I would have a small brain lesion pop up here and there and then go away. No steroids, no treatment other than Copaxone. I was stable, but not very happy. And definitely not living my life the way I really wanted to.

The one thing I always wondered though, was about my spine. My Neurologist said if I wasn’t having spinal symptoms there was no need to do a spinal MRI, only the brain. But that worried me. I kept envisioning those little white plaque spots, or lesions, sitting there next to each other on my spinal cord. They haunted me. I would joke about a wheelchair and no one found it funny. But it was always on my mind.

In 2011 or so I developed a band of numbness on my left side around the middle of my abdomen. It is commonly called an MS hug and it was rather uncomfortable. From a medical standpoint it was pretty cool, because it was so numb and tingly up to the middle of my spine or my tummy and then right next to it, I felt fine. Totally normal. No numbness. So my Neurologist finally ordered a spinal MRI. Sure enough, I had a new spinal lesion. But guess what, the other two were gone. GONE!

Let me explain quickly that some people get MS lesions and they are there forever! Not me. Mine actually heal and I knew that from my repeated brain MRIs over the years. But I always wondered if the spinal ones did. Well now I knew. No more fear of a wheelchair. My spine would heal just like my brain and I could let those old lesions go.

About this time I was also being somewhat harassed by my friends who had recently started following a Paleolithic diet and they were all convinced that it would cure me. I thought they were full of shit. And I repeatedly said things like, “Oh that’s sweet, but a diet isn’t going to help me.” I thought that for several reasons: 1. I am a nurse and was trained in western medicine so I believed in FDA approved medicine and treatments. And 2. I did not want to give up carbs. I love to eat.

One day for some reason I stood in the local coffee shop in Winter Park and Wade Wilderman, the owner, told me a story of his son. Cody was a professional mountain biker and in great shape. He had recently been diagnosed with Type 1 diabetes. Type 1. That means your body does not make insulin. You are usually diagnosed with Type 1 as a child. Cody was in his early 20’s. I thought that was almost unheard of. He had been put on a strict regimen of dietary changes and insulin. Multiple shots a day. I was devastated for him. But Wade spoke of Cody making the decision to switch to a Paleo diet after reading Robb Wolf’s book The Paleo Solution. He said it had drastically changed Cody’s life and health. He said Cody was needing less and less insulin a day. I was floored. It didn’t make sense with my western medicine mind.

So I went home, told Rusty (my husband) the story, and we bought the book. Needless to say, we went Paleo for 90 days and it changed my life. 100%. What I realized was that all the gluten I was eating was causing an immune response in my body that kept my constantly fatigued and depressed. The results were amazing. Everyone always wants to know if I lost weight, which I did, but that wasn’t the result that changed my life. (I will do another post on my weight when I’m up to it.) My fatigue went away! I had my old normal energy back again.

And it felt great. Since then that I have eaten every word against dietary changes helping my MS. And they taste great.

But it took a long time for me to let go of the fear of my disease.

I had to turn 40 for that.