Rebirth after a Flare

I’m happy to admit that I have been feeling pretty good lately. I finally came out of my flare about a month ago, and I’m so happy. It always feels like a rebirth. Like I woke up out of a months-long coma. This seems to be a pattern each year in the spring. I come out of a winter flare… as if I’m a spring flower coming back to life.

Now, don’t get confused by my use of the word “good”. Let me explain… “good” is relative. A good day for me is equivalent to a “not so great” or an “off” day for a normal, healthy person. I’m never 100% better, but more like 75%-80% better. Some days I’ll feel really good (9/10) and some days I’ll feel really bad (3/10). Most days I’m hovering somewhere around 7 or 8/10. I feel well enough to function a bit, but I still need to rest a bunch. I’m not gonna complain though. I’ll take this any day compared to when I’m flaring. At least I can function for most of the day like this. Some days I need a 2 hour nap after making breakfast. Other days I can host a BBQ for 30 people while playing host, chef, cleanup crew, server, entertainment, and mom. This was yesterday, btw. We celebrated Memorial Day with a bunch of friends. It was a fantastic day!! I had a great time and it was so nice to feel normal enough to enjoy everyone. I’m paying for it today, but its ok! It was totally worth it!

When I’m feeling well like this, I’m eager to do as much as I can. I try to squeeze every drop of goodness out of feeling good. I try to do everything there is to do, especially the things I normally cannot do. I love going to the stores, seeing friends, taking my kids to the beach or park. I even found a few small nature trails near me that I think I may be able to handle. I know I’m pushing it, but I can’t help it. I have all this pent up need to live for months now. I want to experience so many things that are normally out of reach for me. I even started exercising again …very lightly. I’m talking 3-5 mins of a few squats, bicep curls, a few others, and stretching. Or I may do 3 mins on my stationary bike or elliptical machine. I know better than to do anything too strenuous, but I have to do something. My muscles are wasting away and gravity is pulling everything down. I still want to be a hot mama so I gotta get those glutes up. Plus, hopefully I can get my lungs and heart a little stronger so maybe, hopefully I won’t tire out so easily. I also tried a gentle yoga class. I must be in worse shape than I thought because the 90 year old guy and 70 year old woman in the class with me were doing much better than me. I couldn’t believe it. Oh well. I gotta start somewhere, right? Forward is still forward no matter how slow. I just hope I can maintain it for a while before I’m down for the count again.

I’m been using this “good” time to practice what I’ve been reading about the last few years, as far as socializing and using mindfulness. I’ve also been enjoying old and new hobbies, decorating my new home, exploring my new neighborhood, and just trying to squeeze as much enjoyment out of life as possible. I’m trying to squeeze a whole year of living into 2-3 months. I’ve been really enjoying being social, especially after Covid. I’m fully vaccinated, along with most of the people in my circle so I feel comfortable enough to be around everyone again. It is exactly what I’ve needed. I forgot how amazing it feels to be surrounded by the right people. It makes me feel energized, confident, and human. Even before Covid I was mostly isolated because I hid from the world. I was always so afraid of how bad I was going to feel, so I stopped living. I realized 2 things:

#1 I’m gonna feel how I’m feeling regardless of whether I lay in bed all day, or if I do something fun. If I’m gonna feel sick, tired, and in pain, I may as well try to have some fun while I’m at it. It’s much better than wasting my life away like did for so long.

#2 Doing fun things and being with people distracts me from my misery. When I’m laying around, I’m constantly noticing every minute of what I’m feeling. When I’m laughing with people, enjoying a hobby, or just sitting outside enjoying nature, I’m distracted from what I’m feeling. It also brings me happiness that I can’t get while laying in bed. I decided that if I’m gonna be sick, I may as well try to have some enjoyment somehow.

I’ve spent so many years wasting my life, waiting to feel better. One day I realized that I’m never going to feel 100% better and that 75% is a gift that I must take advantage of. It was time I start really living, rather than just wasting precious time. Of course there are those days when I just can’t function, and that’s ok. I take those days to feel miserable and sorry for myself, but I know it will pass. Every night before bed I’ll say out loud “please let tomorrow be better” and I wake up the next day with hope. I do my best to act as normal as possible until I simply can’t anymore. If that means I have to take a 2 hour nap in the middle of the day after doing something I enjoy, then so be it. That’s just what I gotta do.

I can say my quality of life has improved dramatically since I’ve been living this way. I wake up each day hopeful that it will be a good day for me. I do the best I can to be happy, positive, and upbeat. Even if I’m feeling a little off, I do the best I can to keep looking forward. I’m constantly looking for and noticing little nuggets of happiness throughout the day. Something as simple as watching the birds shaking their feathers in my birdbath, or feeling the warm sun on my face while watching the wind gently blow through the trees. Most of the time it works, but I’m certainly not perfect. I still have down days, but not nearly as much as before. I definitely believe that my positive attitude has contributed to my wellness overall. I’m not claiming to be cured by happiness, but I can definitely say my life has improved, even if only mentally. There’s a big difference between being sick and miserable, and finding happiness while still being sick.

I try not to get too comfortable because I know its only temporary. I know from years passed that feeling good only lasts a few months. I think the most I’ve gotten was 3 straight months. Usually its closer to 2 months in a row, with a few bad days sprinkled randomly throughout. I know when I start flaring again I’ll likely get depressed. I get discouraged by the painful reminder that I am chronically ill. This will be my forever! That’s a terrifying thought, but I try my best to stay focused and remind myself that there will be good days again. For now I’m just trying to stay focused on the good parts of life as much as possible. I’m in a great place mentally! Hopefully I can keep this up for a long time, or at least enough to get me through the summer.

Me and Logan

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!

4 thoughts on “Rebirth after a Flare

  1. Meredith I’m so happy reading your post, happy for you and your family. You certainly have been very unwell, do you know what triggered such a bad flare? Also, is there anything that helped you out of the flare?

    You live your life as much as you can and yes you have alot to catch up with. You love your new house and surrounding area so enjoy every moment you can.

    I wish you and your family a very busy Summer with lots of laughter ❤

    Like

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