Surviving the Worst

Well. I’m slowly climbing back from the worst rough patch I’ve ever had, but I’m here. I’m writing. My arms work well enough to type again. This is progress.

From the last few posts, you can see that the last few months have been one long rough patch, but it took a sharper turn the last week. The thing with experiencing the worst is it’s like a nightmare taking tangible form. The world drains of color. Nothing brings joy or relief. I couldn't see the other side, and it felt like I would never climb out.

But I am getting to other side.

I’ve had some really severe insomnia for about a month and a half. I am a lifetime insomniac and go through periods of not sleeping well but this was different. I was only averaging 3 hours a night and some nights, I only slept about an hour, long after the sun came up. The thing with illness is sleep is the center which all forms of symptom management orbit. If you don’t have sleep, it doesn’t matter how much you rest, eat well, exercise, etc. Without sleep, everything else is pointless.

I tried all my usual tactics, including changing my sleep medication. But the reason I was having such a difficult time sleeping is I was having to spend a good portion of my time in bed during the day and I was constantly waking up in the middle of the night because I wasn’t breathing. The latter is not an uncommon occurrence but the less sleep I got, the worse my breathing got and the more time I had to spend in bed. It was an unending cycle I couldn’t break.

I don’t know how people who have to spend all of their time in bed do it, but being bedridden is always a ticket to insomnia-ville for me. I also kept over-doing it as always and making myself bedridden again.

I did manage to make it to my pulmonary function test two weeks ago though. I’m hoping to write a post about it since it’s a standard test for Myasthenia. It’s a brutal, exhausting test that includes such exciting activities as breathing into tubes, hyperventilating on purpose over and over, and getting locked in a glass pod. It was nice to show up though and it’s the only test I’ve made it to this year, so it feels so good to check it off the list since I won’t have to do it again for another year!

But I didn’t rest properly after the test and ended up bedridden and back at insomnia-ville again.

But then my body had had enough and my muscle weakness turned to paralysis. Paralysis can come at any time with Myasthenia but this was the worst bout I’ve ever experienced. I couldn’t get to the bathroom without help. My husband had to push me around the house in my wheelchair, two thresholds I have been dreading and hoping wouldn’t happen for a long time or never.

We made arrangements to go the hospital but I had my husband call my doctor to see if that was the right choice. My doctor said that if the paralysis entered my respiratory muscles, then we needed to go. Even though I had little use of my limbs, I was actually breathing ok, for me at least. A healthy person would still assume they were dying. Going to the ER is stressful and offers serious risk. I knew I needed sleep and rest and I was not going to get either of those there. Also, my doctor has still not authorized immunotherapy—steroids and IVIG—for me, which is standard treatment for Myasthenia. I really don’t know what they would do for me at the ER. So I pushed through it. Survived moment to moment. 

It’s a skill I’ve gotten really good at. I’m an epic level survivor.

I haven’t had to spend any time in bed the last three days. The paralysis is starting to subside and I’m sleeping better. I don’t know if I have turned the corner yet but I feel like I’m getting there. The world has some color again.

I’ve been practicing what I call “militant resting,” moving as little as possible, focusing on my breathing, and giving my body the patience and care it needs. Now if I could just stop over-doing it and let my body recover, that would be great.

I missed my MRI at Stanford again and sent a message to my doctor asking for another option, hopefully to do the MRI locally since this is the 4^th time I’ve had to cancel it. I have another appointment there in two weeks. I really need to improve so I can finally show up.

I got my fancy, new record player that was my gift to myself for winning my short-term disability case and I’ve been lying on my couch listening to a lot of music, many of my albums I haven’t listened to in a long time. Music the best kind of medicine; it can be auditory resuscitation. As something fun and uplifting, I've been working on taking pictures of some of my vinyl collection I’ve been accumulating the last few decades. If you want to see it, follow me on Twitter or on Instagram.

It feels like there are shades of normalcy in life again and I'm working hard to get there. My husband has been the unsung hero in this awful saga. He is always the one who deserves all the glory. The last few months have easily been harder for him than for me since he has to care for me, while working and doing everything else. This was the first time I have needed help with every task so I've been working hard to get back to some functionality again. I'm definitely getting there. We survived it together like we always do and watched all of "Cut Throat Kitchen" while I rested.

Since my condition continues to decline and I've struggled to show up to appointments and tests to finally make headway toward treatment, I have this overwhelming sense of dread and fear. What transpired last week did not help this. But I have decided that I won't live in fear of the future and what may come next. I want to try to enjoy each day--laugh with my husband, listen to music, watch the birds in my yard, do everything I can do enjoy each moment.

When I was feeling at my worst, I wrote a poem to remind myself of this:

I refuse to walk in fear
To tread in trepidation
To worry what each corner brings
But instead
To wake each day to a fresh start
And face that possibility with an embrace
Each corner is a new chance
Something to learn, something to fight, something to laugh with
But I refuse to walk in fear toward it
Not anymore 
Instead, a gesture toward hope


I hope all of you are doing well out there. I'm hoping to get back to regular posting again soon. Peace and love to you all :)

When Love Prevails

My husband and I celebrated our ninth wedding anniversary at the end of June, which gave me a chance to really reflect on the challenges we’ve faced and the great life we’ve made together. The strength of our love for each other has weathered some serious setbacks over the last few years but I think it has been made stronger by these hardships. We've found a way to value the memories we have and laugh about the absurdities of life. 

Maybe you know my husband. Maybe you don’t. If you do know him in person, you may not know the full story. My husband is goofy, hilarious, sharp-witted, a gifted artist and maker of things. He has an encyclopedic knowledge of animals. He is an athlete as much as he is a nerd and has spent a good portion of his life playing D&D.

He is also the sole breadwinner in our family and has had to assume the role of caregiver as well, and he has done so without complaint. I think the key to marriage is to marry someone who is a better person than you and who in turn makes you a better person. Also, find someone who is as much of a weirdo as you are. I lucked out.

I met him in high school when we had a mutual friend who my husband would draw comics with. When we had art class together senior year, I thought he was one of the most obnoxious human beings I had ever encountered (but pretty cute). He was so effortlessly happy all the time, laughing and finger-painting with his friends. I was an angry person with some serious unresolved issues then and suffering through 8 A.M. art class didn’t help my demeanor.

We had another mutual friend who helped us connect during our first year in college. When we started meeting at a coffee shop to do homework together, I saw that his happy-go-lucky attitude had been tinged with some cynicism and I had started resolving my anger to be a little more at peace with the world. We met somewhere near the middle. We started dating and my husband moved in with me and my parents within a few months. We knew it was life-long from the get go.

We’ve had a few bumpy patches from the beginning, and my health has never been great, but we saw our lives stretched out in endless possibilities. One of our favorite pastimes was to talk about our dreams and goals, make 5 year and 10 year plans. We were broke but we were happy. We spent our 20s hiking, playing video games, spending a lot of time with our family and friends, trash-talking each other during board games. I look back on this time with fondness.  

We've had so many great memories along the way. He took on the role of a roadie as I was performing often and he would carry my equipment wherever I played. We would drive to the foothills on a whim and pay his grandma a surprise visit. We would visit his aunts in southern California and play games and go to the LA zoo. I never realized families were not all dysfunctional until I met his family. They are some of my favorite people. 

My parents took us to Hawai'i twice years ago and snorkeling, boogie boarding, swimming in the ocean together, sitting on the beach with my family are probably some of my favorite memories still.  

We literally climbed mountains together and have put in a lot of miles hiking Yosemite. Halfway through most hikes, I would be struggling and he would offer words of encouragement. Suffering and cursing my body, we’d eventually reach the top together and it always felt like a miracle. The climb down together was the easy part. This continues to be a metaphor for our lives together. Every day is a miracle.

I was in college almost all of the time we’ve been together and working at least one job, nose to the grindstone always. He worked jobs that allowed him time for his hobbies, making sure every day was filled with “good times.” As my friends and I in grad school often lamented that our lives were spent working for nothing 7 days a week, he jokingly would say “life choices.” I didn’t realize he chose the smarter path until I left grad school for good.

He always supported my long-suffering, financially precarious academic habit and even agreed to leave his home and friends and move to Nevada with me so I could do the absolute absurd: try to get a PhD in literature. He was in a motorcycle accident within a few weeks of moving there. His beloved scooter was toast and now he now has a bionic arm from the ordeal, although he suggested to the EMTs in the ambulance that he wanted a hook if he had lost his arm. We often joke that Reno tried to kill us both.

We made a good life for ourselves in Nevada, became liberal gun owners (as one does in Nevada) and would go target shooting in the desert, we watched wild horses roaming in the desert, did some hiking, and saw ourselves potentially staying there for good.

But I guess plans, especially ones that are carefully orchestrated and plotted, are made to be undone.

After I got ill in 2011, all the plans we had made were in question, and I wanted to go home and try to reclaim some sense of normalcy. Once again, he agreed to move back to California despite how much he loved living in Nevada. Our lives since then have been filled with ups and downs, including years where I am working and contributing and years where I’m not.

Every time our plans come crashing down, we gather the pieces and put them back together—creating something new, adjusting to a transformed reality and carving out a way to thrive in it. I would say we have been successful—at least successful on our own terms. We have become professionals at adapting and adjusting on the fly.

I’ve been watching all of The West Wing and am intrigued by the storyline of President Bartlet’s Multiple Sclerosis. In one episode, his MS left him paralyzed and as the First Lady helps him get into in his pants, he looks at her and says, “I guess this is what vows are for.” Indeed. Through sickness and health. Through thick and thin.

We have adjusted. We are adjusting. Although we aren’t able to do many of the things we used to do together, we haven’t lost everything—not by any means. We still have sci fi shows, video games, board games, Led Zeppelin, making art, philosophical debates, and the occasional excursion into nature. We're making new memories with our families, our crazy nephews, our friends who are more like family. We're still a bunch of nerds. 

I often read other's stories who have lost so much because of illness, including the dissolution of what they thought were unbreakable vows. I think we are aware that things could be much worse and I wake up and go to bed every day with a conscious, determined sense of gratitude. As often as I come across stories of dissolution, I find stories of people who found a way to use catastrophe to build stronger bonds. The material realities that we believe determine so much of our lives, our identities, our relationships—I have learned—ultimately mean very little. If nothing else, this is one of the most invaluable lessons illness can provide.

Every time we hit a setback, I am often panicking, worrying, filled with fear. My husband just accepts the setback and figures out a way forward. He is brilliant at finding solutions and fixing things that seem irrevocably broken. My ringtone when he calls is the MacGyver theme song. I may have the degrees but he is the real brains behind the show. While I’m pondering the abstract, he is coordinating the particulars. Somehow we find a way to reach the top of the mountain together.

Most people don’t have to manage these obstacles at this age. Most don’t expect to have to be a caregiver for a spouse in your 30s. And this hasn’t been our only challenge faced too soon. We had to place my mother in a convalescent home earlier this year, far earlier than expected for her age. It often feels like we have lived a lifetime in the span of a few years, but we have weathered these setbacks with our love for each other and with the support of our family and friends. For our tenth anniversary next year, I am hoping we can have a party to celebrate with all of them. We need cake, good food, and great music.

We try to laugh about the absurdity of our lives often. Finding the absurdity in any situation is one our strengths. I told him once "I guess I'm now your trophy wife." He replied, "No. You're my trophy wheels." 

Every relationship will face some kind of test at some point, and every time you get to other side of it together, the narrative of the bond you share widens and deepens. The story of your entwined destinies motions to new hope, new challenges, new utterances of strength. Ultimately, you choose to face what remains still unwritten together, and that, more than anything, is the bravery of love.

Surviving the Holidays

 A sense of panic starts to awaken around October, as Christmas decorations start furtively replacing Halloween decorations and the realization that the holidays are upon us. When you are chronically ill, the holidays offer added stress and panic. In the online communities I’m part of, I have already noticed the anxiety levels increasing with questions like “How will I prepare a meal?” “How do I get my house ready for guests?” “What do I talk about?” etc. My anxiety about the holidays started in September. Spoonies are great at finding solutions in difficult situations. We’re professional survivors, so I think it’s safe to say that we can find solutions during the holidays as well.

Holiday gatherings and parties are taxing for anyone, but for Spoonies they are especially challenging. For me, this year will be different. I’m not working and I have become home-bound. I have been able to do less and less over the years, but this year will be all about survival. My biggest concern is the New Year’s Eve party my husband and I always have at my parents’ house every year. Throwing a party is out of the question for me at the moment so my husband will have to do most of the work unfortunately, which he understands. Sometimes, this is reality. My goal is to be able to show up for the holiday gatherings and this party. If I can accomplish that, I’ll be over the moon.

Here are some suggestions to consider for the holidays and I would love to hear if you have other suggestions:

1.  Plan Ahead
I’m sure many of you are like me: I have a very careful plan whenever I leave the house and I try to prepare for all contingencies. This may mean bringing medication, mobility aids, fluids, etc with you.  If you are going to a friend or family member’s house, you may need to discuss your needs with the host or your family members. You may need extra care during a gathering but no one will know this unless you communicate it.

Maybe you’ll have to break up your preparations over a few days because you know that trying to do it all in one day will mean you can’t enjoy yourself or you’ll end up bed-ridden. You can even make a list or a plan for yourself if that helps.

If you have to travel, have your emergency supplies on hand with you. I have a giant purse that has water, salt, meds, and protein in it at all times. Prepare for the worst and hope for the best. You know how many spoons you have so conserve and use them judiciously.

If you are spending the holiday alone, as Spoonies must do sometimes, prepare to have a restful and enjoyable day. Do something for yourself and know that spending time alone means you can celebrate on your own terms and manage your health without extra stress or pressure.

2.  “What do I say?”: Listen

I saw someone mention this and I often ask myself the same question. I’m not working, I only leave the house for appointments, I spend most of my time managing symptoms, and I’m re-watching Downton Abbey for the thousandth time. What do I have to discuss with anyone? Sometimes illness can be the elephant in the room when you are with friends and family, but it does not have to be a focal point. You only have to discuss whatever you feel comfortable with.

Although some Spoonies do not have a vibrant external life, this often strengthens a person’s internal life. Whenever I think of this exchange, I think of Emily Dickinson. We still have much to share.

It can be difficult to not feel sad or even resentful when you hear others discuss working, traveling, or exciting social lives, but holding to this negativity will never lead to happiness. These feelings can take us out of the present and make us feel worse about our quality of life. I have found a lot of joy in just listening to others discuss what they are doing and living through those experiences vicariously. I think illness has given me the gift of being a better listener and living more in the present. This can make you more compassionate as well. Share your ideas and thoughts and enjoy listening.

3. Ask for Help

This reiterates the first point. If you know that an activity or condition will sink you, ask for help. Maybe you’ll have to delegate cleaning or cooking. Maybe you’ll have to explain your dietary needs. Asking for help is anathema to my nature, but I’ve learned the hard way that every time I didn’t ask for help when I should have, I ended up not succeeding.

Don’t set yourself up for failure. You know more than anyone else what you are capable of and your limitations so communicate this. Hopefully you have people in your life you can rely on and trust so you can communicate that this time of year is especially challenging because they may not know this.

I have a very specific diet, so sometimes I bring my own food or eat before a gathering. Maybe you’ll need to bring a chair to sit in. Do whatever you have to do. It’s easy to ignore our own needs to maintain the appearance of functionality or to not create distraction, but your self-preservation is the utmost importance. Going to parties and being part of celebrations is a rare treat for many Spoonies, so do whatever you have to do to enjoy it.

I’ll be bringing a blanket to our NYE party so that I can lie down in one of my parents’ rooms throughout the party because I won’t make it otherwise. I’m also going to adjust my medication schedule and hydrate all week to see if I can last for a few hours. I’ll put on a smile and do my best to enjoy it.

4.  Celebrate

Maybe the overwhelming stress, the sight of singing Santas, and having to hear Paul McCartney’s “Simply Having a Wonderful Christmas Time” one more time is putting you over the edge, but it’s easy to lose sight of the fact that this is a time to celebrate. Find something to celebrate, whether it’s spending time with friends and family, cheating by eating food you normally wouldn’t allow yourself to eat, or getting to wear something sparkly. Carve out some celebration and enjoyment for yourself.

I thought the last two years were difficult, but this year was the most difficult year health-wise for me by far, but I feel like a warrior for surviving it. I know that I can continue to survive it. That’s worthy of celebrating.

Even if you don’t have anyone or many to celebrate with, celebrate yourself. If you can't go to a gathering, you can celebrate on your own terms. You made it through another year of battling illness with dignity and grace. Your strength is worth celebrating!

I wish you symptom-free days, chocolate, and lots of joy for your holidays. How are you going to enjoy yourself despite your illness?

How to Help A Friend or Loved One with Dysautonomia (Or Any Chronic Illness)

One of my goals while being on leave was to post more regularly but I hit a really bad patch the last few weeks and didn’t get this post up sooner. But I’m working on getting back to the upswing and writing, walking a bit, and singing to my cats regularly again. My BFF Carrie Anne recommended this topic to me, and I thank her for it. This post is in honor and in celebration of Dysautonomia Awareness Month. 

Although Dysautonomia is an invisible illness, living with the condition has very real ramifications in the lives of patients and their friends and loved ones. The illness can be so devastating that some are unable to do normal activities and have to rely on a caregiver. Everyone needs support in their lives, but for those who are disabled and/or chronically ill, that support becomes vital. 

For many people, it is difficult to ask for help. In American culture, we are taught to value independence and self-reliance. I have found that many who cope with chronic illness once had lives filled with ambition, over-achievement, and self-determination, myself included. When suddenly you are confronted with a life of dependence and survival, there is grief and frustration, which can be difficult to communicate to others. Yet, having a support network that you can trust and rely on can make all the difference for Dysautonomia patients.

Many may think that helping a friend with chronic illness or disability means helping them perform tasks. What your friend or loved one really needs is often intangible. I decided to ask some of the online Dysautonomia/POTS groups I am on about this topic to get their feedback and almost everyone responded with the intangible forms of support. Whether you are a caregiver, a loved one, or a friend of someone with Dysautonomia, I hope you find this useful:

Understanding

Almost every person who responded to my question included this word. Understanding takes many forms, and I believe for many of those who responded it meant trust—trust that even though the illness is invisible, the disabling symptoms are very real. Your friend/loved one is likely dealing with constant dizziness, fatigue, brain fog, nausea, difficulty standing, difficulty breathing, GI symptoms, fainting, weakness, and obstacles performing simple tasks like cooking, driving, showering, or bending over. Their system is on a constant roller coaster ride of fluctuating blood pressure and heart rate because their body is no longer able to self-regulate automatic functions. Even if you cannot visibly see these symptoms, trust that they are experiencing them. They are dealing with constant frustration because of these symptoms and just want someone to understand how challenging life has become.

Many patients deal with constant invalidation, particularly from the medical community. Almost every Dysautonomia patient has at some point heard “it’s all in your head” or “it’s stress.” If a loved one or friend says these words, that invalidation becomes more devastating and emotionally damaging. Imagine dealing with life-altering or even life-threatening symptoms but constantly being dismissed as just “crazy” or “attention-seeking.” The emotional cost of this is unimaginable and it adds to the magnitude of stress illness already causes.

This condition is complicated and rarely diagnosed, so many Dysautonomia patients have to fight hard to “prove” their illness constantly. It can take many years before a patient receives a complete diagnosis. When a loved one or friend just says the words “I believe you,” all of that stress and invalidation washes away. He or she can now be completely honest and authentic with you. It is a true gift. You can even research Dysautonomia, their subset of Dysautonomia, and even their other conditions to gain a better understanding of the symptoms, prognosis, and treatment.

  

 Patience

Many who responded also mentioned this word. I would list this as my number one desired form of support. Your friend/loved one’s life has been completely altered by this condition. They are often grieving their former life and trying to figure out how to continue to live a full or half-full life while ill and disabled. This means they are unable to do what they once could. This could be true in terms of work, social life, hobbies, family obligations, household chores, etc. This illness can alter every aspect of a person’s life. They need your patience because their capacity to do these things has diminished. They may miss family functions or have to get accommodations at work, and they need your patience and understanding that they would rather be fully present in all aspects of life. They are courageously living life and putting on a brave face.

For me, once I became ill I realized how much I had taken for granted in life in terms of what I was able to do. Going to the store wasn’t a massive undertaking. Trying to clean my house didn’t take all day because of constantly having to rest. I didn’t live most of my life on the couch or in bed. Whatever the severity of the illness your friend or loved experiences, they can no longer take participation in life for granted and they need your patience as they try to still participate despite the physical obstacles. Your friend or loved one can be relatively symptom free for an hour or a day and then suddenly bed-ridden. There is often no rhyme or reason, so they need your patience as they navigate the ups and downs of the illness.

Communication

Communication is essential in any relationship, but it takes on new meaning when your friend or loved one is ill. Last week was one of the worst weeks I’ve ever had and by Friday I needed to go the hospital because I was having difficulty breathing and was unable to walk just a few feet. My husband and I discussed whether it was really worth it to go to the ER or not. We weighed the options together and ultimately decided it was not. These types of communications are typical for caregivers and Dysautonomia patients. Sometimes you are faced with very difficult choices because the cost of this illness is paid out financially, emotionally, and physically. Being able to communicate with each other about these choices and the daily struggles of life can make them more manageable because you can tackle them as a team.

National Public Radio recently did a study on stress and the sources of stress, and they found that the highest forms of stress are related to health. What this data doesn’t state is that chronic illness and poor health can be stressful for all parties involved, not just the patient. Caregivers in particular deal with a lot of pressure and stress. I am no professional, but it may be self-evident that communicating with each other about the challenges of dealing with illness could help alleviate this stress.

There’s an undercurrent of guilt when illness takes over your life because how much it can affect others. I often feel the need to apologize to everyone all of the time. If patients and their loved ones can communicate about their challenges, perhaps the emotional and mental strain of illness can be assuaged for all parties. Dysautonomia patients can communicate their limitations and capabilities in terms of housework or what they will need at a social function so that others can help them. Suffering in silence is not a solution. Listen to your loved one to understand what their needs are and this could limit the frustration that often comes with an invisible illness.

 

      Support

Support comes in many forms, and your friend or loved one needs your support. Because some patients are home-bound or are very limited in their activities, they may not get to see friends or family very often anymore. Stopping by their house or calling, emailing, texting to just ask “how are you doing?” or say something funny can really brighten their day.

This illness can be isolating. Many patients never meet anyone else in person who has the same condition and leaving the house is challenging and exhausting. Feeling alone and misunderstood is common. You can check in once in awhile with your loved one or friend to see how they are doing to show them that you support them and think of them. Everyone needs to know they have a cadre of people cheering in their corner, and this is especially true for those with chronic illness.

 

      Saying the right thing

I think many people are worried about saying the right thing to someone with a devastating illness, but I don’t think “the right thing” exists. I think there’s only honesty. Tell your friend or loved one that you miss them, you think of them, you hope their treatment is going well. That you wish them an endless supply of chocolate and puppy kisses. Tell them you don’t understand their condition or why it has altered their life. I only know the wrong thing to say is “I don’t believe you,” but beyond that just be honest, ask questions, and listen. Your friend or loved one probably doesn’t want more from you than that.

Caregiving and support is a two-way street. For Dysautonomia patients, I think we could read these suggestions as “how to help friends or family understand our challenges” as well. We also need to understand, be patient, communicate, be supportive, and forget about saying the right thing. If medical professionals are struggling to crack this strange condition, we can’t expect family, friends, or strangers to fully grasp it either. We’ll get through this together.

I hope I covered most of how to help your friend or loved one with Dysautonomia but feel free to suggest more

For more information on Dysautonomia, visit the Useful Links page on this blog