Friends who withdraw

One of the common issues faced by people with chronic illness, especially one that is rare or not well-understood, is that friends pull away. Most of the time, they just talk to you less and less and then not at all. Occasionally, you will have friends who seemingly change overnight into a totally unfamiliar and unsympathetic character. It is incredibly isolating and depressing, leaving the sick person wondering what other ways, besides their illness, they're deficient. I think this contributes to many chronically ill people isolating themselves out of choice and developing social anxiety. After experiencing the loss of several friends, it becomes harder and harder to summon the will (or indeed energy) to seek out connections with new people.

When I became very sick in grad school, I already had a lot of social anxiety issues and shyness to deal with. I tried so hard to join graduate student groups and try to make friends with my colleagues. Unfortunately, my health took a nose-dive just as I was feeling like I was beginning to make some actual friends. After a humiliating (and terrifying) experience in which I fainted and seized during class and hit a wall in the process of falling, causing a black eye and a nosebleed that lasted for several hours, no one really wanted to talk to me. When I came back after a week's absence, they either pretended like nothing was amiss or cautiously asked "Are you feeling better?" Social conventions dictated that I say "yes" despite this not being the case, and after I did, they would inevitably make some joke about it and then proceed to ignore me. I left grad school with a total of zero friends, and felt like crying when I saw my colleagues having lunch together or talking about plans to get together over the weekend. But of course crying or inviting myself would have made me more of a freak, so I made myself as invisible as possible.

Some people will be much more confrontational. For example, several years ago when I admittedly had a bit of a meltdown and cried and complained to my best friend that I felt miserable all the time, she just said "Why do you always act like your problems are so much worse than everyone else's?" That moment will forever stick in my memory. I felt betrayed, abandoned, and guilty.

I have been fortunate in the last year or so to meet people who are more open and who also have long-term physical or mental health conditions. At first, I was incredibly relieved and talked about things with them that I hadn't voiced to anyone other than my doctor and my mom. They could really relate to me, and that was incredible to me.

And yet.

Some of them still pulled away and acted with veiled hostility when I was unable to physically do something. You see, I love hiking, and I joined a hiking club in my area in order to meet new people and stop being so isolated. It was through this group that I met a lady who had a similar chronic condition, and I felt we really bonded. Once, my heart was going too fast to go up a steep trail (I'm talking topping at 240 bpm and struggling to stay conscious), so I told the group I would sit and wait for them while they went to the summit and back. She waited with me, and I was incredibly touched. We then baby-stepped it to the top together. It was absolutely amazing. I have rarely encountered that kind of compassion even from family members. But then... she began telling me that I just needed to do more climbing and exercise more and I would get stronger quickly. Carrying a heavy pack for several days through the mountains was completely doable for me. My heart sank. I told her that I already work out 5-6 days a week and have not seen an improvement in my heart rate or chest pain. I simply am not able to push harder and get stronger like normal people. She replied with something to the effect that, well, SHE had been able to do it and was seeing improvement pretty fast.
"But," I replied, "My situation is different." My cardiologists have said I may or may not get better. They have warned me against doing too much physical activity. If they knew I'd let my heart rate get that high, they'd probably slap me. Coupled with my arrhythmia, that is stroke territory.
"I'd really like to someday..." is where I kind of trailed off. Sadly, we haven't talked in several weeks.

It's easy enough to understand why "normal" people don't want to associate with sick people. We are unpredictable and social liabilities. Plus, for some reason they don't know how to act around us, as if we are not human just like them. But that I can accept. People are ignorant and afraid of the unknown. I daresay it's the same sentiment that fuels a lot of homophobia and racism. What is more difficult, at least for me, is dealing with someone who is also sick who discounts your illness and withdraws. It's heartbreaking for me. I understand that the rationale is "I got better so you can too" but it seems so callous, especially considering we don't have the same illness. Everyone is different--even two people with POTS can have two wildly varying cases.

I haven't found a solution yet. One of the few friends I have left said "She's not a friend! Don't talk to her anymore. It's not worth it." But is it that black-and-white? At what point should we just throw in the towel? I don't know. I do know that I have a widening pool of acquaintances and a shrinking group of true friends. Even though I'm an introvert through and through, that's regrettable for me. I'm not ready to give up on establishing meaningful friendships with people, but every time something like this happens, it feels like I put up another mental barrier.

That long, awkward gap between posts

So I'm back after a longer-than-intended hiatus. After it's been a while, I start thinking "Should I just abandon it? Would it be weirder to come back?" But then I say, "Self, don't abandon another blog. Stick with it. Even if there are huge gaps between posts, stick with it." Do you ever have that conversation with yourself?

Anyway, I moved into the city, dealt with 3 viruses in 4 months, went to visit family in the Snowy North for Christmas, and recently embarked on a new treatment plan for my illnesses. The new treatment plan was not something I was eager to do, and not something I decided to try lightly. I've been on the same medications for a couple of years now, and my body is extremely sensitive to any kind of drug, so it takes a lot for me to gather my courage and tell my doctor that it just isn't working.

Let's back up. When I was first diagnosed, the diagnosis was made by a cardiologist at a heart hospital after months of different tests. I was relieved to get a diagnosis, but quickly felt more bewildered than anything else upon researching these illnesses that share my body with me. With POTS, there is no one standard treatment. I don't think it's an exaggeration to say that every single case is different, and my current doctor agrees with me. Anyhow, the cardiologist I was seeing assured me that people "rarely die from this" and that I'd be fine so long as I took the medication they prescribed, ate lots of salt, drank at least 2 L of water a day (!!), and eased into cardiovascular exercise. The medications included an SSRI and a steroid. The steroid, Florinef, gave me awful migraines to the point where I couldn't get off the couch. Adjusting to the SSRI was nearly as bad; it made me severely nauseous for about 2 weeks and I could barely move. I ditched the Florinef and stuck with the SSRI, which reduced the fainting episodes. However, it triggered side effects, including intermittent night sweats. They would come and go, but the longer I was on the medication, the worse they became. My cardiologist didn't seem concerned in the least about this and just added Wellbutrin to my meds and told me to salt load. Every appointment with him lasted about 3 minutes, and I knew he didn't really understand or care about understanding what I was going through. I also had some other strange neurological symptoms, so I decided to start seeing a neurologist, the only one in my state who treats POTS. He was honest with me and told me he hadn't treated that many cases, but he listened to me and asked questions and asked how I wanted to proceed with treatment. We added another medication, reduced the SSRI dosage, and kept the Wellbutrin. He suggested another steroid, but I refused after my experience with the first one.

With that plan, I wasn't feeling awesome, but I was feeling better. However, last fall the night sweats went from intermittent to constant. I'm talking so severe that I sweat through my pajamas, soak the sheets, have to get up in the night to strip down and rip the sheets off, wipe down and wrap myself in a towel and go back to bed, only to sweat through the towel as well. At this point, I haven't slept a full night through in months. I believe it has been lowering my immunity as well, and recently I've been losing quite a bit of weight, too. My heart rate still gets out of control, topping 215 bpm at times when I hike or exercise. Last week, I felt desperate enough to call my neuro for an appointment. I just don't know how long I can sustain the night sweats or dealing with heart rate spikes like that. He was able to see me the day after I called (amazing!), so I made the hour-long drive to his office.

As way of greeting, he said "I feel like I understand this illness so much better since the last time I saw you." I asked him why, and he told me that in the past several months his wife actually had actually come down with a mild case of it! He told me he has so much more sympathy for patients like me, and he also said that the truth is that the medical community knows nothing about this illness. He has some theories, and he monitors his wife's symptoms, and he seemed genuinely curious about my experience. He spent a good 20-25 minutes with me and we decided to try a new approach--one that is more heart-focused. So, over the course of the next 9 weeks, I will be weaning off of the SSRI and the Wellbutrin and then adding a beta-blocker. Following that, I will probably start a blood pressure stabilizing medication since without the anti-depressants my BP tends to drop dangerously low.

The one semi-bombshell he dropped was that the night sweats may not be related to medication. They may actually be an indication of premature ovarian failure, which can be closely linked with POTS and autonomic disorders, and many women with POTS experience this. I'm hoping it's just SSRI side effects. Time will tell.

I'm optimistic but nervous. Right now I'm on day 4 of a half-dose of the SSRI and feeling quite tired. There has been no change in the night sweats as of yet. This may be a long spring as my body recalibrates to new meds. I have all sorts of fears, like what if I pass out at work? What if I'm too exhausted to get out of bed on a work day? What if I'm jogging and my blood pressure plummets and I collapse on the sidewalk? So many what-ifs. But I suppose things like that could happen to anyone, at any time, so I'm trying not to dwell on them.

Instead, I am looking at the positive things in my life, such as: starting my spring vegetable garden, planning for a trip overseas, and enjoying a new relationship (!!).

FAQ

What is an invisible illness?

A person who has an invisible illness does not outwardly appear to be sick. I look pretty normal: I like fashion, I wear make-up, I go to the grocery store, I drive a car. However, I don't go out of my way to talk to people, and I avoid eye contact so they don't talk to me. Why? Because brain fog makes it hard for me to think. If I'm inside a store, fluorescent lights make me feel dizzy and disoriented, and it takes a lot of effort to carry on a conversation. I worry that I'll suddenly feel nauseous or dizzy while talking with someone and have to make a quick exit or explain myself. Neither tends to yield good results.

What does it mean to be chronically ill?

For me, it meant years of being misdiagnosed and over-medicated. It meant losing friends and feeling like I was going crazy. It meant dropping out of a PhD program. It also meant, and continues to mean, being misunderstood by nearly everyone, including my doctors. It means being ignored and dismissed. It means being too tired to stand up for myself, or having too much brain fog to think things through clearly. It means settling for less and not being in full control of life decisions. It means losing jobs. It means enduring a seemingly never-ending succession of medications (and accompanying side effects) to find out what will "work." It means having a disease become part of your identity. It means not being able to plan because you don't know how sick you will be from day to day. It means being handed a life sentence no one deserves.

It also means that I have had to become my own advocate. It means that, while I continue to take medication, I am also taking charge of my health in ways I can--through exercise and diet. I'm not seeking a cure, but I am trying to find the best method to optimize my health and my life.

What is POTS? What is NCS?

POTS stands for Postural Orthostatic Tachycardia Syndrome. It presents in a variety of ways, but one of the main ways that is true for every patient is that the heart rate skyrockets upon standing. I have a subtype of POTS called hypovolemic, which means that I have about 80% of the amount of blood that a normal person has. Symptoms that I personally deal with also include low blood pressure, fainting, daily dizziness, daily fatigue, severe brain fog, shortness of breath, sudden nausea, a seizure or two, palpitations, drenching night sweats, low body temperature... the list goes on. I cannot have caffeine, processed foods, or nitrites or nitrates. I have to eat a high-salt diet. Fluorescent lights wreak havoc on my autonomic nervous system and can mean a night of adrenaline surges and tremors.

NCS stands for neurocardiogenic syncope, which for me is coupled with an irregular heart beat. This means I have blood pooling issues, and I lose my vision every time I stand up. I also faint and often feel light-headed.

If you teach a child to hike

When you're ill, it can be difficult to figure out what kind of exercise will work for you--or just be tolerable for your body. A lot of people with the same illness as me feel that exercise is impossible. This is usually for one of two reasons:

1. Trying to do too much too soon. Even if you were a serious athlete in your "previous life," it's not a good idea to try to dive right back into whatever you were doing before. So you ran a marathon two years before diagnosis? Awesome. Now is not the time to try it again, especially if you haven't been training or conditioning your body and muscles. Many who try to dive head-first (sometimes literally) back into an activity they were previously able to handle find themselves feeling much, much worse afterwards. For POTS patients, this is the sort of thing that can trigger a flare that can last several days. Which can, understandably, make a person feel not-so-eager to try anything physical again for a while!
2. Not pushing yourself and letting yourself be uncomfortable. This doesn't mean pushing yourself when you are on the brink of fainting or seizing. However, the road to recovery, for me, involves putting myself in uncomfortable situations and feeling bad for a little while, but feeling better afterward. I know that my exercise routing over the past 2.5 years has strengthened my heart and improved my muscle tone. Having said that, I totally understand why people are reluctant to try to push their bodies. We already feel crappy enough, why do something we KNOW is going to prolong it or make it worse?

It's been difficult to figure out the "Goldilocks zone" of exercise. But now that I treat exercise like part of my job and make myself do it at least 4 days a week, I can feel a difference. When I don't exercise for 3-4 days, my body definitely feels it, and I can actually feel myself backsliding. If you have POTS, insufficient muscle conditioning can be an underlying factor. Also, for some reason, we tend to lose the muscle strength and tone we've gained fairly quickly. This makes exercise crucial.

When I was first diagnosed, I couldn't do the elliptical machine without passing out. Seriously. I bought myself a recumbent exercycle on Craigslist and worked up to using it 30-40 minutes a day at a moderate pace. I also began to take walks at a slow pace (with a buddy!) around my neighborhood on days when it wasn't too blasted hot. (I live in South Carolina, so during certain times of the year those days are rare.) After that, I began trying to do exercise DVDs and returned to the elliptical for short periods of time. After I started feeling stronger, I incorporated light free weights into my routine to work on muscle tone. Currently, I can jog 3.5 miles without stopping. But it's taken nearly 3 years to get here, and a lot of hard work. 

I believe that one of the key factors in making exercise work for you is finding some kind of exercise that you don't completely hate. For me, one of those things is hiking. There are so many benefits of hiking if you go about it safely (ahem! disclaimer!), including strengthening the heart, reducing stress by being in natural surroundings, and reaping some of the benefits of natural sunlight, such as vitamin D production, easing of skin conditions, strengthening the immune system, increasing oxygen in the blood, and lowering blood pressure. It also allows me to explore places I wouldn't have gone otherwise.

The air was just as fresh as you'd imagine.

 I am lucky to live in a state that has some great state parks and even some small mountains with well-marked trails. I decided to take advantage of this and have worked my way up from strolling a short paved trail to reaching the summit of the highest peak in the state--which I did this past weekend, with a good friend of mine.

My friend is 8 years old and had never been hiking before. She is an energetic and athletic kid, so I invited her to tackle the trail with me, warning that it wouldn't be easy. She was up for the adventure, and we spent most of the day on the trail. It was tough, and both of us got a little whiney and sore, but when we saw the view from the top, we both agreed that it was definitely worth the discomfort.

I am so grateful and proud of myself for working up to this point. I could never have done this two years ago. Even though I'm still considered "sick," I made it to the top of this mountain and taught a child about nature, animals, outdoor skills, and health along the way.

Even if you're having a difficult time now--whether it's due to a physical or mental illness, or an injury--I urge you to discover something active that helps you. I can't wait to go hiking again. In the meantime, I need to rest, because my hiking buddy wants to know when we can go again!

Do I know you?

If you've ever felt like giving up, you know me. If you have a chronic illness or are struggling to find a diagnosis, you know me. If you desperately want to be healthy but aren't sure where to begin, you know me. I'm you. I've been there.

I'm Jenn, and I'm an awkward girl in pursuit of a healthy life. This can be tricky at times since I have two chronic illnesses that throw a host of interesting symptoms at me every day.

By day, I work in the legal field and academia, but at home I'm constantly experimenting with new healthy recipes and exercising. I follow a modified Paleo diet, which means I occasionally eat grains and beans, and I like yogurt and the odd sprinkle of cheese on my eggs. I'm fairly type-A, but my journey to health is not about following any diet or exercise plan 100% perfect--it's about finding what works best for me and what makes me feel the best.

Because of my illnesses, I treat exercise as part of my job. I work it into my schedule at least 4 days a week, and usually 6 or 7 days a week, depending on how I feel.

Am I a medical professional? No. I can't give you medical advice, but I can tell you what it is like to live with these illnesses and strive to be as healthy as possible under my particular circumstances. And you know what? If I can do it, you can too. I truly believe that. A little over three years ago, I was all but bed-ridden. Today, and I mean this very afternoon, I jogged 3.5 miles. It's been a long road (pun fully intended), and I know it will continue to be tough at times, but it's worth it.

Join me for exercise, healthy recipes, and perspectives on life!