Ride the Wave…

I think I’ve definitely come out of my long winter flare and I am enjoying every second of feeling (almost) normal before its over. I think I’m currently at my peak. Keep in mind that a peak for me is about 85-90%, compared to a healthy person at 100%. I won’t complain though. This still feels amazing!!

My winter flare lasted about 7 months this time. It started slowly in October and by November I was fully laid out, being stuck on the couch about 90-95% of the time. I stayed that way all the way through the winter until around April. That’s when I started feeling a little better. I started having a little more energy and fewer days of being completely useless. By mid-May I was feeling pretty good, and now in June I believe I’ve peaked. I’m hoping to get a few more months out of this but that feels like I’m being greedy. Like I’m asking too much by hoping for that. I still have random days of feeling a little extra crappy, I may need a nap after an activity, or I may feel hungover after a very active day, but for the most part, I’m doing great!

So how have I been spending my energy? By doing whatever I can!! The first thing is I’ve been out shopping, or just casually browsing. It doesn’t seem like much, but this is huge for me. I’ve been hosting friends and family at my home. I’m having BBQ’s which is a big deal because I do all the cooking myself. Hosting people is a huge drain on my energy, but I’ve been able to keep up somehow. I’ve also been gardening, and even exercising!! Exercise is mostly gentle work like stretching, resistance work and a few mins on my stationary bike. I love to be physically fit and strong and I’m SOO happy that I have the energy to work on my body a little. I used to be so strong with defined muscles when I was young and healthy. Over the years, I’ve lost most of my muscle tone and I now have muscle wasting. I’ve been able to focus on a healthy diet and staying positive and mindful. I even took a solo trip to Texas (from NY) to see family.

My little sister with her husband and 5 kids have lived in Texas for about 20 years now and I’ve never visited. My mom and brother moved out there to be with them a few years ago too. I’m so happy I was able to go be with them for the weekend. It was weird cuz it was my first solo trip in 20 years and my first trip to Texas. I had so much fun! My sister rented an inflatable water slide which you better believe I used! The temp was high 90’s for the 3 days I was there. Somehow I managed to stay in the shade enough to not burn at all. We ate amazing Texas BBQ food that my sister and her husband cooked for me, we stayed up late laughing, and we even drove out into the darkness to look up at the stars away from city lights. I saw so many stars, some satellites and a meteor streak! I am a huge science nerd and I adore the cosmos, so this was so special to me. I finally got to know my nieces and nephews. We’ve never had any kind of relationship because of the distance. They are all teenagers now and so much fun!

I know that a lot of the mindfulness work I’ve been doing on myself helped me to really enjoy my trip and truly live in the moment. In the past, I would have found a million and one things to not be happy about. I would have been a Nervous Nelly the whole time and panicked about flying and travel in general. I would have been afraid to try the water slide and stay up late and do any of the fun things I did for fear of feeling sick. But, with all the practice I’ve had living in the moment, finding the good in everything, and just truly being happy, I was able to thoroughly enjoy every minute of my trip. I am already working on the next trip, but with the whole family this time. My kids deserve to know their cousins. Plus, I’ve taking an interested in learning real Texas BBQ. I got a taste of it and I want more, so I’ll be getting a smoker and I plan on using it a lot! I also learned some things from my sister and her husband with how they raise their kids. Each kid is extremely helpful around the house. They cook and clean. I was stunned when my sister’s 15 year old daughter cooked her breakfast while her 13 year old son cleaned the kitchen. I’ve been trying to implement some of it with my own lazy kids. I learned that they can do a good job and it won’t kill them. Lol.

Now that I’m back, I am working on plans for multiple get-togethers and BBQ’s at my house. I am planning on taking trips to the park and beach with the kids. I’m looking forward to little adventures around our area like the nature trails down the street from me. I plan to truly enjoy my summer with my kids! I have a long summer bucket list. I know I won’t get to it all, but I’m hoping I can do most of it. I have to hope my peak stays long enough to get it all done.

The problem is I get too comfortable feeling normal and then I’m crushed when I get sick again. It’s like I forget how sick and disabled I’ll become when I’m at my worst. I’m so busy just living to even think about it. It makes me sad to think about it so I’m trying to stay happy so I avoid thinking about it in general. I even start to get hope that maybe I’ll stay feeling this good. Hope is a very dangerous thing in this case. I always hope to feel good but after enough disappointment it quickly fades. Take yesterday and today for example. I had some things to do like doctor appointments (me, the dog, and kids), taking the kids to hockey and Tae Kwon Do, and just lots of little things around the house. I was able to get through most of it, but I needed to rest in the afternoon. It’s always disappointing when I’m forced to slow down, but I am super thankful that I was so productive and mostly functional.

This is why I try my hardest to live my life day to day, moment to moment because it can flip in an instant. I can suddenly be pummeled by a wave of pain, fatigue, and/or sickness at anytime, completely derailing all of my plans and force me down. For now, I’ll ride the wave as long as I can, and enjoy it as much as I can!

Airport bathroom selfie in Texas

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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