It’s Time for a Change

*I apologize if this writing seems disorganized. The brain fog is real today.

My chronic illness is winning. It took away my happiness and my will. I stopped pushing and trying because existing was just too hard. I gave up. Sjogren’s Syndrome had beat me. It won!

Over the years, I’d slowly stopped doing things unless they were absolutely necessary. This means nothing fun. I did the bare necessities required for life. Feed the children, laundry, cooking, appointments, etc. Anything more than that was impossible and just not worth the effort. This made my life and my family’s life quite dull. Holiday celebrations were minimal and rushed. Some were nearly forgotten altogether. Birthdays and anniversaries were dull and boring. Gifts were pathetic and last second. I rarely went to outings with the family. No park, beach, family walks. No zoo, museums, or aquarium. There was no fun, no excitement in life. There was no excited anticipation, no surprise, no memories created. Every day was the same thing over and over again.

If you’ve read my other blogs, you would have seen that I’ve been working very hard in the last 2 years to improve the quality of my life, which in turn improves my family’s life. After reading my latest book*, it suddenly occurred to me that I had stopped living life! The book reminded me how to enjoy life again. I didn’t even realize I had stopped. I never noticed how each little change over the years had added up to become the complete absence of joy… for all of us. I learned that all the extra little special things that I had given up were what makes things fun and exciting. It brings variety to the days. These are the special moments that will be remembered forever. I had allowed all of that to be sucked away by my illness. This disease was winning at ruining not just mine, but all of our lives. I decided right then that I had to make a change. I suddenly had a desire to live again. That fire had come back. I felt strong and determined. I made up my mind that as long as I could handle it, I was gonna work hard to bring fun and joy back into our home. I was ready to start living again and having fun as a family. I wanted to create a million wonderful memories. I was ready to make the change.

Because I’m not that creative, and I’d forgotten a lot, I did some research. I researched things like family traditions, holiday decorating, birthday ideas, family fun night, fun family things to do at home, and even nice things to do for your husband, etc. It’s crazy how many of the things mentioned in the articles had never even occurred to me. Other things I’d just forgotten. I’d forgotten how to be fun and nice. I took a bunch of notes and made lists. I then made more lists of things to buy to get started.

Having something new to do and a way to bring happiness to our home energized me. I was motivated and excited. I hadn’t felt that way in a long time. It felt good! With my lists in hand, I went to the store and started buying decorations for the next big holidays coming up…Valentine’s Day, St. Patrick’s Day, and Easter. I bought lots of decorations for the house, candy, little gifts, and gift bags for the day of. I bought a Valentine’s Mailbox and cards so everyone in the family can make cards for each other and find them in the mailbox on the special day. I even organized a scavenger hunt for each of the kids that would lead them to their Valentine’s Day goodies. All such simple things to do that make all the difference. I’m mad at myself for giving up and missing out on this stuff. I’ve lost so much precious time.

Another thing that I started that I’m so happy about is our family hockey night. Eddie loves the NY Rangers but I’d stopped watching years ago. The kids all play hockey, but never really bothered watching unless they actually went to a game. I decided to bring the Madison Square Garden experience home. I went to the dollar store and bought a bunch of concession stand size candies. I bought popcorn cups and caddie baskets for everyone to hold their goodies while watching the game. At game time, I had everyone put on their Rangers jerseys. I set up my own concession stand and had the kids line up to place their order. Then they all went to the couch to watch the hockey game on tv. The kids were so surprised and they loved the whole thing!! We made the game fun by cheering extra loud and singing the Rangers goal song. It was such a great time and the kids were excited to do it again. I had fun and Eddie was very appreciative for my efforts. I felt very proud of myself and excited to do it again.

I’m trying to be more active too, as much as I’m able to. I pushed myself and went ice skating with the family last weekend. I could only skate for about 15 minutes, but the kids were really excited and we had a really nice time. I felt proud of myself for pushing and making the effort for quality time and fun. I paid for it afterwards with fatigue and pain, but I had fun. I don’t mind the crash afterwards when I’ve actually done something good to justify it. It feels worse when I do nothing and still feel sick. The good is worth the bad. This is something I have to try to remember more.

I actually can’t wait till the weather is warmer so I can do some of the outdoor things I wrote down. Things like outdoor picnics, fishing, evening camp fires, stargazing, going to the park or beach, zoo, and aquarium, etc. I’ve wasted so much of my own life and too much of my kids’ lives being too sick to do anything fun. The reality is, I’m still sick. My mobility is still very limited, and I tire too easily. I can’t do all the things I’d wished for like hiking, camping, sports, or anything else that requires a lot of walking or physical exertion. I’m sad about it, but I will try not to dwell on it too much. There are things I CAN’T do, but there are still lots of things I CAN do. We can look at the moon through the telescope, watch a funny movie together, cuddle, laugh, and just enjoy each other’s company. I’ll continue to have flares that will make for dull times, but that’s ok. I will try harder to find a way to make it work! I have to accept that these times come, but they eventually go again. I’m done just existing and ready to start living again in whatever way I can.

In general, I’ve been trying to just have more fun. I’m trying to laugh more, sing and dance more, and just be more silly and playful. I’m making an effort to be lighter overall. I continue to use mindfulness to live in the moment and enjoy more of the little things in life. I’m trying to spread joy and show more love. I’m consciously working to be happier and and already sunshine. After all, that’s what life is all about.

I’m so proud of myself for putting the effort in and being successful at creating fun again. It takes work and money, but it is totally worth it. I’m happy I was physically able to go to the store and set it all up. It feels amazing to be on top of things. It’s not even February yet and I have all decorations, activities, and gifts completely set up and ready for the Valentine’s Day. It’s nice to feel like maybe I’m not a total failure of a mother and wife. It feels amazing to have accomplished something that brings so much joy to my family.

I hope I can keep it up long term. I look forward to all the happiness these things bring and all the great memories we’ll create. I hope my body will allow me to do these things, even if it’s not at full capacity. Something is better than nothing, right? I have such great memories from my own childhood of special family moments. I’m truly thankful for the effort my parents put into having fun with us. I want my kids to grow up with similar memories and know that I tried my hardest for them.

*Book: The Happiness Project by Gretchen Rubin

Published by Meredith Gallie

My name is Meredith. I’m a mother of 4 boys living in NY on Long Island. I suffer from a chronic illness called Sjogren’s Syndrome. It is a debilitating autoimmune disease which has wreaked havoc on my body, causing me to become disabled and mostly housebound. Each day for me is about survival and caring for my children. My older boys are twins, one of which has autism. These are challenges that I must try to overcome each day, but I am thankful for my family. I’m thankful to have a loving husband who is able to help and provide a comfortable life for us. We are thankful for his hard work and dedication. I’m not a writer by any means, but I wanted to make this blog as an outlet for all the noise in my head, as well as something to focus on to keep my brain from melting into a pile of mush. I also hope my thoughts and experiences will help others out there with similar struggles. Some of my posts will be like a public diary, some will be advice and inspiration. Some posts will be dark and sad, some will be uplifting and inspiring. I’m just going to write according to whatever mood I’m feeling at the time. It’s a bumpy ride, but hopefully you find it helpful or entertaining. Enjoy!

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