I feel like I have been in bed for weeks
I am scared of committing to anything
I feel “lazy” and “helpless”
My favorite place is the movie theater and I escape there multiple times a week
I get another diagnosis and it feels like it is swallowing me
I try desperately to help others because it is too hard to help myself
I am lonely
I lose a friend and feel numb at the funeral
I am terrified to start a new job
I am afraid of being judged- while judging myself
I am anxious
I am exhausted
My room is a mess
I am in SO MUCH physical pain
I am tired of going to the doctor
I only want to see my family and people I really trust
I look forward to bedtime
The grocery store is my enemy
I am scared I will sound crazy
I break promises
I feel ugly
I’m hungry and feel too frustrated and limited by my diet that I give up on making food
All of the things I NEED TO DO get put off or left behind.
This is not the story of someone else
This is Here and Now
This is me
This is Depression
**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!
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:
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.
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.
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.
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:
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.
I have been spending a lot of time alone. I’m almost thinking I am going to lose my “extrovert card”. Since I was recovering from cancer, I have looked at being alone in a whole new way. I had a lot of time during the day. I have to admit, A TON of that time was spend on the computer researching, writing, reading, and learning to do new things, like build a website.
I enjoy spurts of creativity. I have tried new crafts, new activities, and learning how to cook. Today I tried another fun experiment! I made my own salt scrub. I have been researching how to make CBD infused products. I have a lot of chronic pain from cancer and celiac disease. While I have found some amazing salves and infused lotions at dispensaries, they are expensive! I cannot afford a $50 8oz bottle of lotion. I have never been one to follow recipes, so I usually just guess. This creates some major failures sometimes. I know nothing about chemistry. Luckily, this one was not among my failures. This was my process:
I melted pure CBD crystals and coconut oil on low heat. Then I added essential oils. Next, I added this:
I did not measure anything or have Pinterest give me directions. This is the amazing product that came out of it:
It’s not much too look at, but I tested it and my body is so relaxed.
One reason I am posting this is to share my fun project. I also want to remind you to pause, enjoy time alone, use your creativity, and create helpful, healing products that don’t cost a crazy amount of money.
This week the post is on the lighter side. Sometimes that is what I need to do for myself so I can continue to….