Author: Susan Westbrook

Silence, Noise and Bravery.

I can pull this all together. 

Let’s start with the silence. Chronic Lyme Disease has left me with an addled brain. As a result, I have become incredibly sensitive to sound, and my brain is very easily agitated. In response, silence has become my favorite sound. I live for it. I find solace in it. I need it like a drug. I walk at dawn so I can experience the earth at its most quiet. When in my car I often don’t listen to the radio. When I’m home alone I do not play music and rarely turn on the TV. I meditate. Blessed, blessed silence.  

There are however, two occasions on which I seek out noise. The first is when I miss my beloved late brother. We shared a deep love for each other and for Springsteen. So when I miss my brother, I play Springsteen. Loudly. The more I miss him, the louder the music. In this instance, my heart hurts more than my brain, and music becomes medicine. 

The other time I actively seek out loud noise is when I need to feel brave. I am at the point in my recovery where bravery is imperative. Maybe it’s been imperative all along, but my need for bravery feels more urgent now.

It’s hard to explain what this moment is like for me. I am emerging from a long period of being commanded by illness and anxiety. I am at the point right after the car accident. I am dusting myself off, checking to see if all body parts are present, and am somewhat unsteadily walking away from the wreck. 

I am not the person I was when I was in the deep clutches of illness. And I am not the vibrant, fully functional person I was before I got sick. I am somewhere in the awkward middle. Striving to regain some of my past life, but within the limitations of my lingering health struggles.

It’s unchartered territory. It’s scary. I am still easily fatigued, and anxiety is always a whisper away. But with hard work, persistence, and a lot of self pep talks, I can do more than I used to. The new world I’m trying to inhabit is foreign to me. My primary identity for the last eight years was “patient” and now I am trying to transform my identity to “person”. It’s a lot harder than it sounds.

It takes courage. Courage to believe I really am getting better. Courage to believe getting out won’t wear me out. Courage to believe I have the fortitude to keep my anxiety in the background. Courage to believe a bad day is an isolated incident vs. backtracking to a previous state.

I accidentally stumbled on a counterintuitive (at least for me) way to boost my courage. My daughter and I share an iTunes account, so random music is always popping up on my phone. While in the car the other day, my phone somehow connected to the radio and the Sara Bareilles song, Brave started playing. My first instinct was to turn it off (noise), but instead I decided to listen. And darn, if I didn’t feel more brave afterwards. So I listened again. A little louder this time. And again, louder still. And with each new playing I felt just a little more brave.

These lyrics spoke to me in particular:

Maybe there’s a way out of the cage where you live

Maybe one of these days you can let the light in

Show me how big your brave is

My life felt like a darkened cage for a long time. I just felt so trapped by Lyme and anxiety. I had been everywhere and tried everything, and I was not getting better. I couldn’t see any daylight. And then finally, there was a crack. My job now is to make that crack just a touch bigger every day.

Enlarging that crack is very much a mental game. I am wobbly, and it would be easy to fall back into the dark cage. But I feel just well enough to continue fighting for the light. But I can’t do it if my brave is not big. So on those days when my brave feels small, I crank that song and play it as many times as I need to. Cheesy? Absolutely. Does it help? Absolutely.

At this point, I need to embrace anything that helps. Cheesy or not.

I’m Not Feeling Very Brave Today.

I have made tremendous progress in bringing my hellacious anxiety to heel (see previous post), but battling that monster every day takes a tremendous amount of energy….. and bravery. 

For me, overcoming anxiety means making a conscious series of decisions all day, every day. I must decide to ignore the devil on my shoulder that encourages me to worry to excess.  I must decide to embrace the positive things in my life. I must pour my thoughts and efforts into things I find intellectually rewarding. I must make exercise a priority. I must have the courage to do things my anxiety says are scary. I must be able to recognize the voice of anxiety is the voice of a liar.  And when anxiety is present, I must choose to accept it as part of my reality at that moment without forgetting it is not my whole reality. Also, when anxiety is present, I must ride out the physical symptoms without being reactive to them, and I must remind myself this storm, like all storms, shall pass. 

If I do all those things, I create a life force of positive energy in my body and mind.  And if I do enough of those things, and do them consistently, the life force of positive energy becomes powerful enough to suffocate the anxious energy that wants to run and ruin my life. And if I keep at it long enough, I begin to feel freedom from the captor I call Anxiety.

It would be impossible for me to describe how difficult it is to consciously choose joy over fear. If you don’t suffer from anxiety, it probably seems simple. Just live my life and be happy, right? Well, anxiety is sometimes referred to as Monkey Mind, and for good reason. I know every single, rational reason why I don’t need to feel anxious every day. On paper, I have it down pat. But Monkey Mind distorts the truth. It makes reality confusing. It creates fear where none exists. And Monkey Mind has almighty power. You see, it is impervious to logic, reason or anything that makes sense. Worse, it’s usually the loudest voice in the room. 

So, to battle anxiety is to say no to that powerful master called Monkey Mind. 

I do it all the time. Every day. And for the past few months, I’ve had the upper hand. But the moment my feet hit the floor this morning, I knew I was losing my bravery. I just felt it in my bones.

In the past, when I woke up feeling that way, I would have let anxiety command me. Walk all over me. Have its way with me.  But today I chose a different response, which, oddly is no response. I just decided to keep my day just as I planned it, and I didn’t let my lack of bravery change anything. There is a great quote about how having courage doesn’t mean you are never scared. Rather, having courage means you are scared and you do it anyway. 

When you suffer anxiety, the normal act of living can feel scary, threatening and overwhelming. Don’t ask me why, it just is. When anxiety flares, the temptation is to retreat from the outside world to a place that feels safer. But today, I decided to just carry on even though I wasn’t feeling brave. I went to the grocery store. I did some laundry. I went to a football game at my daughter’s school. Did I feel great while I was doing those things? No. I felt weak. Tired. Not up to the task of mounting a brave response. 

I think the moral of the story here is that part of conquering anxiety is learning how to have a different response when it rears its nasty head. Learning how to carry forward even though you don’t feel brave.  I think I did that today, and I will consider that progress, even though today was not exactly the best day of my life.

Onward.

The Cascade Effect of Chronic Lyme Disease: I Have Osteoporosis. I’m 48.

Chronic Lyme disease is insidious for a number of reasons. Chief among them is the collateral damage the infection inflicts on your body. My osteoporosis is not caused by the Lyme bacteria. Rather, I have osteoporosis because of what the Lyme bacteria did to my body. Namely, it caused significant damage to my GI tract, which led to years of malnutrition and dramatic weight loss, which led to…..osteoporosis at the ripe old age of 48.

I try to stay positive about my situation, but the Osteoporosis news definitely irritated me. Even as I write about it now, I feel like I am talking about somebody else. My grandmother, perhaps.

After a short period of brooding and feeling generally annoyed, I decided taking action might be more helpful. First, I researched my options. It turns out Osteoporosis can’t be completely reversed, but there are definitely steps you can take to both strengthen your bones and stop bone loss. So, I’m not powerless over this. Good to know.

The treatment options fall into three broad categories: medication, diet/supplements, and weight bearing exercise. I ruled out the medication immediately, as it all seems to have GI related side effects. I’m basically a walking GI side effect, so I’m not looking for more of that.

Keeping vitamin D and calcium levels in a healthy range is helpful, and I am already doing that.

That leaves weight bearing exercise. At the time I was diagnosed with osteoporosis, I was walking some, but only every other day and not religiously. This seemed to be the biggest area of opportunity for me, so I decided to turn my irritation to action.

I doubled down on the walking, and started doing it every day. I started to park far from the door. I started going out of my way to lift things around the house. I started taking the stairs. I added more hand weights to my exercise routine. I started to wear an eight pound weight vest on shorter walks.

I see it as a game now. Forgot something on the second floor? Great! Another opportunity to work my bones on the stairs. Delegating the household heavy lifting to my husband? No more.  Now, I race to lift heavy things before he gets the chance. A friend wants to meet for coffee? I say how about coffee and a walk?

I made 10,000 steps per day my goal, and it’s the rare day I lay my head on my pillow without achieving it. Often, I’m well above 10,000 steps.

I have come to appreciate the upside of having Osteoporosis, which is I have daily motivation to keep myself moving. I’ll be damned if I’m going to break a hip. No way. Not me. Not today. Not any day. Those are powerful fighting words for me.

Another upside? After many months of increased activity, I can see how I have benefited both physically and mentally. Would I rather not have osteoporosis? Of course. But as long as I have it, I’m going to focus on the ways my weak bones have made me stronger.

Total Eclipse of the Brain.

I have mentioned my struggles with anxiety in other posts, but I’ve never told the complete story, which I will attempt to do here.

As I began using this blog to tell my Lyme story_, I thought long and hard about whether to include my anxiety. Let’s face it, my list of physical ailments is long enough to fill a novel, so I’d have plenty of story without even the slightest mention of anxiety. If I went that route, I would escape scott free, and nobody would know about my mental “weakness”. Whew.

For a long time, that was the path I chose. However, after a long period of deep introspection, I realized that treating my anxiety as a state secret was not doing anything to help me overcome it. Maybe it was even preventing me from overcoming it. 

For a year and a half I struggled with debilitating anxiety that ever so slowly turned me into a shell of the person I once was. With each passing day, I became more afraid, more emotionally fragile. I was having grade A, paralyzing anxiety attacks anywhere from two to ten times per day. My life was a living hell. And I told no one, with the exception of my husband and my therapist.

During this period, our social life all but evaporated. I left the house only when it was necessary – errands, doctor appointments, anything for my daughter, holiday events. Getting me to leave the house for anything beyond the above more or less involved a hostage negotiation. And I usually won. Social invitations were declined with a “Susan’s not feeling up to it”, but no mention of anxiety.

Keeping a secret like that is a burden, and I started to feel I wasn’t leading an authentic life. I kept people who loved me and cared about me completely in the dark. When I did actually materialize in public, the anxiety always raged underneath, yet I am told I presented a calm exterior. This made me feel like I was doing a good job of impersonating a fully functioning human being, when I was anything but.

I told myself all the typical lies about mental health issues – I’m weak. It’s in my head so I should be able to get it out of my head. I should be stronger. I should be able to power through this. I’m embarrassed. I’m a loser.

After the millionth time of telling myself the above, I finally had a revelation. I realized that I had fallen into a hole. And I further realized that beating myself up for falling into that hole was not going to do anything to get me out. It seemed the more useful option would be to start digging. 

And that’s what I did.

The first thing I did was to rearrange my thinking to accept and understand that anxiety is not a character flaw. It is no more cause for embarrassment than a cold, or shingles……. or lyme disease. 

The second thing I needed to rearrange my thinking about is what it means to be strong. Sometimes the strongest, bravest thing you can do is acknowledge that you are suffering. Say out loud that you don’t have it all figured out. Ask for help. Invite your friends and family into your suffering.

I did all those things. I started by sharing my suffering with two of my closest friends. These friends love me, support me, and would never judge me, yet I found it incredibly difficult to confide the story of my mental anguish with them. I just felt so naked and exposed. Vulnerable. Deficient.

Well, those friends responded exactly the way you would want a person to respond. With deep compassion, love and understanding. They had no idea I had been in such pain, and they showered me with acceptance. It was truly a gift.

Since that went so well, I slowly began to expand the circle of people “in the know”. When I first told people, I told a long story with lots of caveats and explanations for how I ended up in this place. That was the shame talking, of course. I felt like I had to rationalize my illness. I don’t ever feel the need to rationalize why I have a cold, but this felt different.

But a funny thing happened. Nobody judged me. And many people ended up opening up about their own mental health struggles. Or the mental health struggle of a family member. Soon, I realized two benefits of telling my story of anxiety. First, it made it much easer to be out in public in situations that made me anxious because the people I was with knew what I was going through, and that was incredibly soothing to me. Even if they didn’t treat me any differently, the simple fact of their knowing was a balm. Second, the more I shared my story, the less stigmatized I felt.

After a while, a very long “coming out” story became “FYI, I have been fighting raging anxiety for the the last year and a half”. No rationalization. No caveats. No shame.

While sharing my story didn’t cure my anxiety, it made the burden a little lighter, and I felt I was living a more authentic life, which never hurts anything.

In total, I spent over three years in anxiety’s dark grasp. It was hell. I started to call it treatment-resistant anxiety because I literally tried everything, and nothing helped. Never in my life had I worked so hard to achieve so little. Never in my life had I experienced anxiety like this. It was all new, and I couldn’t figure out what was causing it or how to make it stop.

In addition to my mental suffering, I had all my physical problems. The way I describe it is my body broke, and then my brain broke too. What a nightmare.

There were so many days when I felt like I couldn’t go on another minute. I’m not saying I was suicidal, because I wasn’t. But I just couldn’t imagine how much longer I could tolerate the raging storm in my brain and my body. Physical pain. Emotional pain. It was soul sucking, vitality sucking. Exhausting.

Somehow, some way, I just kept putting one foot in front of the other. No matter how tired I was, no matter how heavy the load felt, no matter how hopeless I felt. The way I saw it, I didn’t have any other choice.

And then one day, it happened. In the abundance of darkness that had taken over my life, I started to see the possibility of daylight. Notice I didn’t say daylight. I said possibility of daylight. When you’ve lost all hope, possibility feels life changing.

What changed? Why could I see possibility where none had previously existed?

I think two things happened. First, I think three years of hard work started to add up to something. Second, I switched to a new therapist, Dr. Z, who started talking to me about anxiety in a way nobody ever had before. My husband describes it like this: all the work I did prior to Dr. Z was like undergraduate school, and Dr. Z was taking me to graduate school.

Dr. Z unlocked my brain, and in doing so gave me the power to vanquish my own darkness. Every time I leave Dr. Z’s office, feel a sense of possibility. A sense that my life can be different. Less anxiety. Less fear. More living. More peace. Freedom.

I am not cured and likely never will be. Anxiety is like that. But while my anxiety used to command my life, it is now just a nuisance. That represents a dramatic improvement, and I will take it. I believe I am just at the beginning of what can be. I think I will reclaim my life, and my future will not be commanded by anxiety.

I could not have said that a mere two months ago. The fact I can see daylight still feels like a miracle to me, and I thank God for this new beginning ten times per day at a minimum. 

As I consider the story of my life, I see it includes a chapter called Raging Anxiety. I’m no longer ashamed of that chapter. It’s part of who I am.  I’m not yet at the point where I can say I have gratitude for that chapter, but I have definitely grown from it. Would I leave that chapter out of my life if given the opportunity? Probably not. I think great suffering leads to great learning, and I’m still in the process of understanding what this chapter can teach me. And importantly, how I can use what I’ve learned to help others.

Every time I see Dr. Z he says about 100 smart things. (BTW, Dr. Z is really what I call him. He is Serbian and his name is hard to pronounce, so everybody calls him Dr. Z). Among the many things Dr. Z has said that hit me between the eyes is the following: My name is not Anxiety. My name is Susan.

When he said that, I immediately saw that I had come to define myself by my anxiety. Somewhere along the way I lost track of the reality I could be anything other than anxious. Anxiety is evil that way. 

Now I can see anxiety is a part of my life, not my whole life. I still get anxious every day. But it’s at a lower volume. And I respond differently.  And the less anxious I feel, the more I engage in life, and the more I engage in life, the more the volume goes down on the anxiety. It’s a chicken and egg thing. 

My life is still nothing like normal. I feel like I have been drowning for the last eight years. The first five were just physical suffering, and the last three were physical and mental suffering. Somehow, some way I have kicked hard and have fought my way to the surface. I can breathe now. But I’m still in the middle of the sea. However, the safety of the shore is within my sights for the first time in a very long time, and I know I will get there. I just need to keep kicking.

Darth Vader on a Treadmill.

Attractive, right? Lyme Disease isn’t particularly attractive either, so desperate times call for desperate measures.

If you’ve been following along you know I’ve had a heck of a time in my Lyme battle. I am incredibly sensitive to medication, and could not tolerate the powerful drugs typically involved in killing Lyme. As a result, I’ve had to pursue a vast array of kindler, gentler options.

One of them is EWOT, which stands for Exercise With Oxygen Therapy. The Lyme bacteria is anaerobic, which means it cannot survive in a highly oxygenated environment. So, the idea behind EWOT is to flood your body with oxygen. Flooding your body with oxygen while exercising is even better because your elevated heart rate pushes the oxygen deep into the tissues, where the Lyme spirochetes like to hide. 

When Lyme spirochetes die, you feel sick because they release their toxins. When a bunch of spirochetes die, you feel VERY sick because your body can’t process the toxins as fast as they are being released. This is called a Herxheimer reaction, named after the doctor who discovered the phenomenon.

Because of my sensitivity to medication, when I felt sick we were never sure if it was side effects from the medication, a Herxheimer reaction, or both. The plus side of EWOT is there are absolutely no side effects from breathing oxygen, so if you feel sick you KNOW it’s from the infection dying.

Well, I felt sick for the first two weeks I did EWOT, so that was very encouraging. It’s one of those rare occasions where it’s good to feel bad. Even better, I didn’t feel nearly as sick as when I was taking medication.

I started EWOT about a year ago and do it for 15 minutes (max recommendation) every other day. The air is pumped from the compressor at the left into the big white bag at the right. The mask connects to the bag, and keeps room air out and oxygen in.

In conjunction with EWOT, I also did a couple of rounds of herbal antibiotics, which are kinder and gentler than pharmaceuticals (although they come in liquid form and taste disgusting).

After eight years, I finally tested negative for Lyme in August of this year. Since I tried so many things over the years, l’ll never be able to tell you exactly what did the trick. However, I’m fairy confident EWOT was part of the equation. It has other benefits beyond killing Lyme and I feel fantastic after doing it, so I plan to keep it as part of my routine. I’m seeing it as preventative maintenance.

And since I believe EWOT helps me, I really don’t care what I look like while I’m doing it.

I’m Back in the Game!

I was down for the count the last two days due to over exertion (see previous post). Yesterday I was so tired I felt physically ill and could barely function. On days like that there is nothing to do but rest, wait out the day, and hope the next day will be better.

Well the next day is here, and it is much, much better. I woke up feeling like myself again, so I hit the treadmill for my usual Hour of Power. It felt fantastic.

Holy cow, did I feel terrible the last two days. I knew it was bad when it was happening, but I never realize just how bad it is until I feel better and have a point of comparison. It’s such a relief to feel good again.

And here’s something else I’m relieved about. When I was feeling badly, I was able to keep it in perspective. I could see there was a logical reason for the way I felt (over exertion plus low stamina), I knew rest was the only remedy, and I had 100% confidence I would get back to feeling better in due time.

This was not always the case. Previously when I had down days, I would get lost in unhelpful thought patterns. What’s wrong? Why is this happening? Am I going back to the beginning? Will this ever pass? Is something new wrong with me? Of course, none of this helped me feel any better, but I did it anyway.

I didn’t do that this time, and it represents an important shift in my thinking. I am starting to have confidence in my recovery. I am starting to believe I can be something other than a patient. I am starting to see a brighter future for myself.

When recovering from a long illness, the mind game is critically important. The mind takes just as strong of a beating as the other parts of the body. It becomes conditioned to being sick. It starts to believe being sick is the only reality.

I’m learning that as my body continues to heal I need to make a conscious decision to bring my mind along for the ride. I need to break old, unhelpful thought patterns, and start new, more helpful, more hopeful ones. That’s very easy to write, but very difficult to do. Eight years of being sick will wear a person down.

But I am rearranging my thinking. Little by little. One day, one hour, one minute at a time. It’s one of the hardest things I have ever done.

There Will be 50 People in My Home Tonight. For Me, That’s A Minor Miracle.

Our social life has more or less faded to black in the years I have been sick. First, it was due to my daily battles with brain fog, bone crushing fatigue and constant GI discomfort.

In more recent years I have been pinned down by intractable anxiety. When I say “pinned down” I mean it literally. There were many times when anxiety prevented me from leaving the house, or from even having the desire to leave the house.

The best definition I have ever hard of anxiety is: “the indescribable fear of….. nothing”. 

That pretty much describes my last three years. Fear was the guiding force of my life. Normal, everyday situations like sitting on the front porch, going to a restaurant, or going to church felt life threatening to me. The anxiety was palpable. I could feel it in every cell in my body. I could taste it. It was a living hell.

As the fear grew increasingly larger, my world grew correspondingly smaller. My home, and one chair in particular, became my safe space. I could breathe there. I could exhale there. Ah, safety. Protection from all the demons just on the other side of the door.

Because my home was my safe space, I became edgy when others (besides my family) entered it. I just couldn’t tolerate it. My safe space was only safe if outsiders weren’t in it.

Tonight there will be 50 “outsiders” in my space. And I’m OK with it. Really.

The fact I’m OK with it truly feels like a miracle to me. Just six weeks ago, I most definitely would not have been OK with it. But with the help of a brilliant new therapist I am ever so slowly reclaiming my life (I’ll talk about that in detail in a separate post). I am escaping the fear and darkness. I am returning to the vibrant person I used to be. I am re-entering the world outside my chair, and am finding it is not so scary. Full disclosure – some days it still seems scary, but not all days, and that marks the beginning of the end of my mental torture.

This is of course, very personal, and I’m slightly surprised I’m willing to share it. But here’s the situation – I’ve always been a worrier, but I’ve never had anxiety on this level. Never. Ever. At first, I went through the typical pattern of feeling shame and blame and thinking I was weak and should just “get over it”.

At a certain point, I realized the shame and blame were doing nothing to help me heal. I also realized anxiety is not a character flaw. Finally, I came to understand I had some pretty darn good reasons to feel anxious. My body broke in spectacular fashion. It is only logical that my brain would break along with it.

It took me about a year and a half to free myself of the shame I felt for having a mental health issue, and I know my shame delayed my recovery. In light of that, I’ve decided to be open about my story in the event I can make even a small dent in the large stigma assigned to those with mental health issues.

Mental health problems can and do happen to anybody. And I can promise you, anybody struggling with their mental health isn’t doing so by choice. Nobody would choose this. And if it was easy to just “get over it”, we would.

I spend nearly every waking hour battling my anxiety. But for the first time ever, I believe I am getting the upper hand. Something has changed in my brain chemistry. I can just sense it. Anxiety is still present, but it’s just a part of my day. It doesn’t command my day, and it’s not holding me prisoner.

I’m a journalism major and as I conclude this post, I just realized I buried the lede. I haven’t told you why I’m having a party. My brilliant husband wrote a novel and it’s being published today. Further, he just turned in the manuscript for his second novel. Both are massive accomplishments, and I thought he deserved a big party. He initially fought me on it because he thought it would be too detrimental to my physical and mental health. But I stood firm and insisted I could handle it. 

And I can. What a feeling. No words for it.