fatigue

The Quiet Time

Casey Shank, M.Ed., LPCC · Jul 12, 2018 · 3 Comments

I haven’t been able to write about this part of my life. There are no big secrets, no big events and no real revelations. But there is stuff. The stuff most people experience. I finally have a job that fits. I have a dog I love. I go on adventures. I go to movies. I watch (A LOT) of TV. I tell ridiculous and exaggerated stories. I dream about the future… but not as much as I used to.

I always feel tired in some way. Most of it has to do with my health, but some of it is lack of motivation. I have been so motivated, driven, and determined for most of my life. Now I’m just… not. I think some of my tired is grief. I am grieving the loss of my former self. I am grieving for my friends who are really sick and have beautiful families who still desperately need them. I have a lot of these friends right now. I have 2 close friends who are experiencing cancer for the 4th time. These strong women have young kids. They have things to do.

Somehow, my empathy, love, and ability to be realistic is a really good fit for those who are struggling. I don’t have a lot of judgement about how people react to illness. I think everyone is on their own path, but I relentlessly invite myself to join them and support them on this path. I consider myself fortunate to not have a family to take care of. This lets me give of myself in ways that other people are not able. I will give you a ride, have long phone conversations, sit with you in the hospital, and make you laugh. I have the flexibility to be wherever I am needed. I can give you 100% of my attention.

I love my friends so much and I would never change those relationships. But now, I am sad. I am sad that I will lose them. I am sad to see them suffer side effects. I am so sad for their families. I don’t want to see them in pain.

I have cried a lot lately. I have cried for so much loss in my life. I cry when I am in physical pain and when I am depressed. I cry because I want to have more energy. I cry when I compare myself to other people. My emotions are all over the place. I am highly sensitive, yet very strong. I have learned (with a lot of help from my mom) that the hard times don’t last forever. They may come back… but they won’t stay forever.

Because I know there are times when I will have relief, I get really excited about most things. I have a habit of calling everything an adventure. I even think it is an adventure to go to the grocery store. I always take a moment to look around and take in the beautiful places I visit. I have a lot of gratitude. I also think out loud, ramble and sometimes talk just because I feel like it. People tell me I have a tendency to narrate my life.

In a way, this is the quiet time. I don’t know what makes it quiet. It isn’t that I have miraculously stopped talking. I think things that happen are not as loud as they normally are. By loud, I mean hectic, chaotic, and disorienting. It is quiet by choice. I stay at home a lot more. I don’t put myself into the middle of madness. Sometimes, the quiet time is so sad. It can be lonely. It can be refreshing and renewing. Sometimes it can just simply be boring. Sometimes, it just is.

We all need to experience the quiet time. It is not like it is better or worse. It is just needed. It is a time to reflect, to listen, to grieve, and to experience simplicity. I invite you to explore what your quiet time looks like, how it feels, what it makes you think, and if you agree that it is necessary.

In your quiet time,

Be Well

So Puzzling

Chronic Advocacy · Jan 8, 2018 · Leave a Comment

**Please excuse any weird formatting. I am out of town this week and only have my phone**

Everyone has a different way of putting together a puzzle. Some people start with the corners and edges. This strategy has more to do with identifying the shape of the pieces first and then using the pictures and colors a little to make sense of where these similar shapes line up. Some people conceptualize the big picture by looking at colors and sorting it out that way. Some people jump right in without any sort of strategy, and make changes as they come up for what is the most effective thing to do in the moment.

One of my siblings taught me to start with edges and corners. One of my friends taught me about sorting by colors. I’m pretty sure I ended up being in the category of jumping in and doing what makes sense in the moment and changing my plan when what I was doing wasn’t getting the job done as fast as I wanted to. I’m not one for sticking to a consistent plan of attack. I also rarely even refer to the box to know what the puzzle will look like in the end.

When the puzzle starts coming together, I start to see my process and how some strategies worked and helped the puzzle come along and some attempts were less helpful and I quickly went in a different direction in a whole other area of the puzzle.

This is an excellent metaphor for my life! Different areas of the puzzle are similar to the many dimensions of my life. Two of the biggest sections of my life puzzle that continue to get the most attention are career and health. I have used several strategies to put the pieces together in each area. They are the most challenging and I keep seeing them from a different angle, which changes my plan of attack. It is both an educational and frustrating experience.

Right now the health section feels like the “big picture” keeps swirling around and changing. Did I turn the puzzle upside down? Am I accidentally turning the pieces over? Did the pieces change shape or color? Is this actually a 3D puzzle?? It is confusing, overwhelming, and my perspective continues to change. This is my section of the puzzle. Right now it is a big focus and I hope to shift to a different section with new strategies and set this one aside for a little bit.

Maybe some of you can directly relate to this metaphor. How do you work on your puzzle? Here’s one thing I know for sure, it takes our entire life to see the whole picture come together. Keep going. Use your best strategy, and keep in mind that it is the most complex puzzle you will ever take on!

Be Well!

Holiday Honesty

Casey Shank, M.Ed., LPCC · Nov 26, 2017 · Leave a Comment

Holidays are hard. I really don’t want to sound like an awful human with no holiday spirit. First, I want you to know I have it worked out in my own life for the holidays to be pretty enjoyable and not too much work. That is just my little contained world. Trust me, it is a different story once I go out in public. What that means is large amounts of holiday gatherings, parties, and events. All of those involve food, gifts, people getting drunk, or themed outfits. When all of those factors are in play at the same time, it can be too much for me and many people with chronic conditions.

Another thing that is a factor in how I feel about the holidays is that I have had some health problems come up and treatment gets messed up, delayed, and I have to wait for businesses to be open and doctors to come back from vacations. When I was a student, the best time for me to schedule procedures was during winter break. That was always tricky as far as timing went. Some holidays from the past have been less than stellar due to health issues like mono, scheduling maintenance ECT, and waiting to have surgery (the surgery that resulted in discovering cancer). It feels like the world gets a little more chaotic for two months. It also throws off routine and regular schedules (which are key for illness management).

Some things we don’t think about that our friends with chronic illness face are pain, exhaustion, variation in mood, overstimulation, anxiety, financial stressors, ability to travel, and more. People with illnesses still love their friends and families. They too want to have a good time without worries.

Here is the breakdown for holidays I grew up celebrating:

Thanksgiving

I don’t have any obligation or guilt if I don’t celebrate Thanksgiving with my family. I don’t even have to celebrate Thanksgiving. It seems as though for many people, Thanksgiving is a day to eat waaaay too much. I feel awful for people with food allergies and diet restrictions along with those who have chronic illnesses that are associated with pain, fatigue, and mood disorders. Gatherings can be overwhelming with noise, questions, and uninvited statements. No one wants to have any unnecessary attention on them if they are already struggling in private on a daily basis.

Shopping

I feel like Black Friday had turned into a holiday all on its own. Immediately following Thanksgiving is the dreaded Black Friday. Talk about overstimulation and anxiety. I feel like I have two options: researching Black Friday deals so I can get as much as possible with my limited budget, or trying to ignore all of the incessant emails and tv advertising. I usually end up somewhere in the middle of those two and end up with regret no matter what I do.

Christmas:

Holiday parties, white elephant gift exchanges, secret Santas, elf on the shelf, ugly sweater parties, caroling, craft fairs, decorations, cookie exchanges, dinners… Should I go on? Telling people you can’t come to an event or party or cancelling at the last minute is hard and sometimes embarrassing. Not getting invited to a party because people assume you won’t be up for it can be heartbreaking. It seems like a no win situation. Christmas and Christmas Eve are similar to Thanksgiving- too much food, and too much stimulation. I like to be able to be alone if a social situation becomes overwhelming. If I want to have control, I have to drive myself instead of getting a ride with others. What I am able to control on Christmas is that I spend it with my sister and my mom. It is small, simple, comfortable, flexible, and fun.

New Years

This holiday comes with a lot of pressure to do something really cool and celebrate in style. It is a holiday that has a lot of hype. It is also a time to reflect on the past year and make resolutions for the next. What if you don’t want to review your year? You just want to be thankful that you made it through alive. I don’t have much to say about how I get through this holiday. I usually do something last minute that feels comfortable enough.

I know there are other holidays that people celebrate These are just the ones I have celebrated. Of course I went to my favorite resource, The Mighty to provide some links of stories that may be helpful:

This is the link to my search for stories about the holidays with chronic illness.

This is about helping others with chronic illness during holidays.

These are pointers for those with chronic illness during the holidays.

The purpose of this post is not to say the holidays should not be fun. I sort of envy people who have holiday cheer and are really excited and joyful and bask in the holiday season that is filled with opportunities to connect with others to celebrate. I know this is the only time of year for some people to see their loved ones. I just want to share my perspective along with the perspective of many individuals with chronic illness.

May you get through your holiday season any way that is comfortable for you.

Be Well

The Cost of Chronic Illness

Casey Shank, M.Ed., LPCC · Oct 15, 2017 · Leave a Comment

In my life, my greatest stress has been work. It all started in my late teens and early 20s. My parents retired when I was 14. A few years and a lot of medical expenses later, I found out that they had been paying a lot of money for my health insurance. The health insurance I had wasn’t even that good. At this time, it was difficult to get healthcare if you had pre-existing conditions. I felt like the best way to get insurance was to make sure I had a job that offered health insurance with benefits, or continue to be a college student.

When I took a five-year break from college, I had some periods of time being employed with benefits. Unfortunately, I had to rely on my parents for times when I did not. To be honest, the second reason I had for going to college was to get education. The first reason was to make sure I had a degree so it would be easier to get a job with benefits. While this may not have been true, it was what I believed at the time. It was a total bonus that I was able to get student health insurance while I was in school. It was also a total bonus that I received a quality education and now have the joy of using what I learned every day of my life.

It is so sad and stressful for me that I worry about if a job has benefits as much as if the job is a good fit. When I completed graduate school, I had a really difficult time finding a full-time job in my field that provided benefits. Just finding a full time job was a challenge. I did some contract and part-time work for a year before I finally got the right job.

I loved my job. I worked for two years at a community college and was able to make an impact on the lives of my students by using my education, personal experiences, and strengths. I was given a lot of creative freedom to design and assess my programs. I loved the students I worked with and felt confident about my performance.

Just after the two-year mark of being at my job, I started to get sick. A few months later, I found out it was cancer. All this time, I had been concerned about my mental health pre-existing condition. Now I had to deal with the expense of cancer. I am grateful to this day that this diagnosis came at a time when I was covered by really good health insurance. Because of that, the cost of my treatment did not put me in a place where I couldn’t afford it.

Because of the side effects from cancer, I decided to quit my job to focus on getting well. That was in August of 2015. Over two years later, I am still responsible for finding, and paying for health insurance on my own. While I have been working for the last 10 months, it is only part time, so I do not qualify for benefits. There is no way someone with my health can go without health insurance.

I face a fair amount of frustration when it comes to working and having chronic illness. With illness comes fatigue, pain, depression, anxiety, and fear. I have an underlying fear that I will continue to get ill. While that is not likely (from an optimistic stand-point), the fear is still there. With all of this, I have not been able to commit to a full-time job. I have a lot of anxiety being in an office setting because I tend to compare my work with others and I feel like I always have to explain myself – whether I am doing a good job or not. I get tired easily and have pain if I sit too long. I tend to be pretty sensitive and emotional. I always have been, but starting menopause after a total hysterectomy at 32 didn’t exactly help.

In my current job, I do not have a consistent schedule that provides routine and structure. I work in several locations doing different types of jobs that require different types of energy. At least once a week, I am required to put in a 10 or more hour day. I thought I would be able to explain my challenges and advocate for myself better than I am doing. I have worked for years on having routine, making time for exercise, fun, nutrition, complimentary medical services, and rest. I have learned that scheduling and planning really helps to maintain balance.

The foundation and mission of my business is to provide self-advocacy education based on my model. I thought I was doing that in my own life. Now I know why I tell clients that the most important step is to KEEP GOING. I feel like I am being tested. I know I am being misunderstood. I am genuinely at a loss because I have no idea how to continue to advocate for myself in my current situation. I have run out of possible solutions. I have gathered and presented facts, I have asked for help brainstorming. And now, I am not being the best possible me I know how to be.

I feel like I am starting to obsess about how I can make my schedule work for me. I have constant anxiety and continue to think about it even when I am not working. This feels like it is throwing off my balance. Because I am spending time obsessing, I am not making time for exercise, eating more than once or twice a day, or spending the time I need to be calm and alone. When I am am not obsessing, I am spending a lot of energy trying to squeeze in time for projects for my business. This brings me so much joy, but I want to have more time and energy to contribute to it.

I have spent a ton of time writing lately. I made a promise to myself that I would post every Sunday. Last week was the first time since February that I didn’t post. I have been working on my book a lot and giving myself some pretty strict deadlines for that content. My new website was launched this week and I spent time communicating with the wonderful Darice at FullCup to make it the best product possible. Trust me, it is. Check out the masterpiece she created here.

I know there is hope. Life really is a journey. If I got to the destination, the journey would be over. I don’t even know what the “destination” is. I do know that the journey can be devastating, exhausting, frustrating, and expensive. I also know it is fun, exciting, and full of love. While I just wrote about the cost of chronic illness-physically, mentally, emotionally, spiritually, and financially, I am still hopeful. I am still resilient and I am going to follow my own model and KEEP GOING.

Be Well

fatigue

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