The Bright Spots of 2015

I’m starting to think about the tumultuous ride of 2015 and, more importantly, thinking about what I want 2016 to be.

I will not look back on 2015 with much fondness. There were a few bright spots, but this was a very dark year filled with tremendous lows. I was talking to husband about writing this post and asked him, “Since there were so many lows, what were the high points of this year?” We had a hard time but we came up with a few highlights. 

I will remember 2015 as a year of loss: I had to officially resign and give up my career, my independence continues to be chipped away at, and I lost my mother. But this post is not about the low points. You can look through many of my posts this year and see those low points. I don’t want to live a life dwelling on the hardships and setbacks. I want to try to live a life. I want to inject my life with some hope and joy, because even when I was hitting a nadir this year, there was still hope and joy around me. I want to end this year remembering the good parts.

As I was trying to remember the good moments this year, I started looking through pictures I had on my phone or pictures my friends had taken, and doing this filled me with so much joy. It is so easy to get lost in the tides of grief and sadness when they overwhelm you; it's easy to forget to see the world around you. Looking through these pictures and remembering the good times helped me see the life I still have all around me and that, even with my limitations, I am still a participant in that life.

These are some of my favorite memories from 2015, some with pictures attached:

-This picture is one my bestie took at our annual New Year's Eve gathering last year, 2014. I was not well in this picture and my mother was not well either, but we're both laughing about something. I can still picture my mom doing this, pretending to take a picture. This may be the last picture of the two of us together because I don't have any I took this year. It's good to remember that we did have times when we still laughed together.

-Any day my nephews come over is a great day. One day early this year we were watching them and we went to a park near our house. When we told them that's what we were doing, they were brimming with excitement. I sat on a bench and husband pushed them in the swings and chased them around. I couldn't participate but I had a great time watching them.

-Mother's Day stands out to me. We already had to put my mom in a care facility a few months before Mother's Day and I hadn't seen her much before then. My mom and I used to talk on the phone every day, but I rarely saw her when she moved into St. Francis, mainly because I was struggling with my own health at the time and couldn't drive myself to see her. But on Mother's Day, my step-dad brought her to their house. She seemed at peace that day. She seemed happy and content. It was the first time we were together as a family after she had moved and it was a good day. My mom and my sister spoke on the phone that day. It is probably my happiest memory of my mother this year and I'm cherishing it. 

-Even though my mobility is limited, I try to get outside and walk every day with my trekking poles, which my physical therapist suggested I start using. It's a form of exercise but mainly it's for my mental health. I am trapped inside on my couch much of the time, but when I can get outside I feel like I'm part of the world again. I only walk a few feet or yards, depending on the functionality of my legs each day. I used to hike mountains, but this short walk, which most people can do with ease, is now my mountain and when I can walk it I feel on top of the world. I often take pictures when I'm out on the walk if it's a good day.

- I've mentioned this before, but since I stopped working and have had time to indulge my interests I never knew I had, I have become a bit obsessed with prehistory, particularly prehistoric Britain. I could read endless books about Stonehenge and archaeological finds in Britain and never get bored. I've watched every documentary I can get my hands on. I never had the time to realize this obsession when I was an academic, but now I do. Since I can't get to Stonehenge to celebrate the summer solstice, we had our own solstice party this year and celebrated with pizza, Led Zeppelin, and games, just as our Pagan ancestors would want us to I'm sure. One of my good friends is a bad ass baker and made this brilliant Stonehenge cake. I'm still in amazement every time I look at it.

- One of my goals this year was to get some articles about illness and disability written and get them published for a wider audience. I submitted some work to The Mighty and have a few articles up and I'll be sending them more soon. I'm hoping to send more writing out to more publications next year. You can see the ones they published on my author page.

- My husband and I used to like to travel, hike, go to restaurants, leave the house, but we only leave our town together now for appointments. But we try to make it quality time out of it in some ways. We usually try to laugh and have a good time, even when I'm being tortured during some medical test. This first picture is from our favorite hotel we try to stay in whenever we go to Stanford. The hotel is a bit of a splurge but it always feels like a bit of a vacation when we stay there. Close enough to a vacation at least.

- It's been my dream to own a piano forever and the consignment shop right down the street had the most gorgeous, vintage piano. This piano was my soulmate but the price tag was steep. It would also take up our entire living room. I got to play it a few times before they sold it. Maybe someday we will cross paths again and I can own it.

- My nephew #3, Max, was born in July and he is such a sweetie. We all call him Baby Max but my nephews started calling him "BayMax" from the movie Big Hero 6, so husband and I bought him a BayMax plush when he was born. My husband looks exactly like his father and now Max looks just like the both of them. He is the only one of the three to take more after my husband's side.

- Husband and I made a Stonehenge garden this summer. You may have heard about the drought here in California so it eventually became DroughtHenge. I'm hoping we can re-plant it next year. 

- I did some artwork this year, not much but more than last year for sure. I'm hoping to do more next year. Here's a daffodil I was working on and more Stonehenge (of course)

- My mom took a bad turn in late summer so I called my sister and asked her to come here to visit her. My sister had not seen her for about six months before that. My step father picked up my mom from the care facility and brought her to their house so we could be together and BBQ. This was the last time we were together as a family before my mom went to the hospital just a few weeks later. This was the last time I hugged my mom. I'm thankful that I listened to my instinct and asked my sister to come. I didn't know that day that it was the end but I'm thankful for that memory.

- For my birthday this year, I asked everyone to wear blue to help me raise awareness for Dysautonomia since October is Dysautonomia Awareness Month. Many of my friends and family participated and posted pictures wearing blue on the Facebook page I made for the event. This is my sister and her friend Scottee, my mother-in-law, and my crazy nephews. 

- I have so many pictures of my cats Bella and Mopar in my phone. They are our little family.

- After slowly working up to it for a year, I finally made it to a normal dose of Mestinon a few months ago. The best part is the cost of the medication went from $80 to $3 a month when I was finally able to switch to the pill form. It really took me a year to get there. It felt like such an accomplishment.

- Instead of a funeral, we had a Celebration of Life gathering for my mom. It was such a good day. Most of our friends and family were there and many people I hadn't seen in many years. Unfortunately, I only have one picture from that day. Almost my whole gymnastics team from 20 years ago reunited and got a picture together.

- Thanksgiving and Christmas were rough this year without my mom but we still did our best to celebrate with our families. Here's a picture of my husband and our cats, the ornament that hospice made for my mom to mark her passing this year, and a picture of me and my best friends at our annual Christmas party for our friends.

- We made a memorial fund for my mom and we gave the check to the care facility where she lived much of this year. They took great care of her and we wanted to say thank you. We ended up donating $1500, and they were elated. I've been trying to play their piano for the residents regularly as a way to give back to them too. Here's a picture of my step-father and I dropping off the check and also my best friend and me playing some Christmas music for them on Giving Tuesday.

- And just to round it out, here's a few pictures from our annual NYE party this year. My sister, who almost never comes to the party we have every year at my parents' house, surprised us by showing up a few hours after the party started. It was such a great surprise. The last picture is my husband hilariously photobombing me and my friends.

So farewell 2015! You definitely had your moments. A lot of Stonehenge, a lot of cats, some sorrow, and so much that was bittersweet.

I'm wishing for a happier and healthier 2016 for all of us. We all deserve it. 

Go Blue on 22 For Dysautonomia

As many of you know, October is Dysautonomia Awareness Month and I had plans to celebrate on the blog and some other ideas, but with my mother deteriorating and then passing two weeks ago, my energies were focused elsewhere.

Yet, I did manage to create an event to celebrate. My birthday is this coming Thursday and I am asking everyone to help me celebrate and raise awareness by “going blue on 22 for Dysautonomia.” I’m asking everyone to wear some kind of blue and post a picture of yourself with the hashtag #Dysautonomia or #MakeNoiseforTurquoise on that day to help me raise awareness. Turquoise is the ribbon color for Dysautonomia Awareness. The event is on Facebook and you can find it here. If you are a patient, you can use it as an opportunity to discuss what subset you have and celebrate your own perseverance. 

Ask others to join as well. Since many doctors and patients have never heard of Dysautonomia, it is up to us to help raise awareness about this serious condition. More awareness can lead to more research and more treatment options for Dysautonomia patients, especially considering there are no treatments designed specifically for the condition. All medications patients use are taken "off label." Most importantly, with more awareness many patients will not have to go through years of appointments, tests, and doctors who dismiss symptoms as "all in your head," essentially a universal experience for many with Dysautonomia. 

Dysuatonomia is referred to as an "umbrella term" because there are many subsets of the condition 

Feel free to join and participate! I bought some special shirts for me and my husband that will hopefully come in time.

If you would like more information about Dysautonomia, you can find accurate information and more resources for getting involved at Dysautonomia International.

So let's make noise for turquoise together, celebrate our strength, and raise some awareness together!

Here are some past posts that are helpful to understand Dysautonomia and living successfully with illness:

What is Dysautonomia 

The Spoon Theory 

Why Getting a Diagnosis Matters 

Living Authentically with Illness

Things to Say to Someone with a Chronic Illness

Dysautonomia and Salt: A Love Story 

My Dysautonomia Story 

Navigating the Medical System 

What have you been doing to celebrate Dysautonomia Awarenesss month? 

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?