Summertime, the Warmer Weather, and Flares
Last updated: July 2021
Summertime, summertime. Who doesn’t love summer? The beautiful warm weather outside. The time where vacation mode comes along and you start planning a family trip to go away. The time you spend outdoors and sometimes all day long. The time me and my family would make plans for a long weekend getaway or even a road trip.
Despite summer, I'm still in my same routine
Summertime has finally come along. You would think with summer around, with the beautiful warm weather, my flares would happen less frequently. Unfortunately, not for me. I still have to continue on the same path, same journey, same routine. Whatever you want to call it. I still have to continue with doctor's appointments, with every 4-6 weeks blood tests, and more tests. I still have to keep the same routine on managing my flares and trying to decrease them as much as possible.
Mornings are always tough
My mornings have been rough. I usually have a hard time getting up. I really struggle with my mornings. Every morning, my body has been struggling to find the strength to get up, from the pain and sleepless nights making it harder. I have accepted that I need to take my pain medication to be able to start my day and take the steps to help manage my flares and keep going. My day can start around 11-12 pm. My biggest struggle is getting my body to move from the pain, stiffness, and weakness.
As a spoonie mom, I am actually excited for the kids to be off from school. No more trying to push and wake up at 6 am. It helps so much having them around. They are at a perfect age to help me around the house. Having them home this summer will help me through those moments of feeling alone and going through flares. A bonus is not having to make lunches every day. I don’t know about you mommies, but keeping my spoons any way I can, will make me a better mom for them. The more spoons I can keep, the more I will have to spend more time with them.
I'm not ready for a long trip yet
Summertime, where I and the whole family would plan a week or two to go away on vacation. This summer will be a little different. As I struggle to stand, walk and sit for long periods taking a plane would be hard. Moving my body nonstop can put me in a bad flare, that can leave me in bed for a couple of days. I can’t imagine being far away from home -- I am not prepared yet mentally or physically. I am sure there will be that summer, that will come along and I will make plans again to go away. I mean who doesn’t love traveling and getting that break of no cooking or cleaning for a week or two. But for now, I still haven’t found the right treatment to bring down my pain. Being near home is the only way to go for me.
Taking things day by day is the way to go on making plans for me. I don’t make plans anymore in advance. If I am invited to an event, my answer is I will try to be there or I will try to make it. Because one minute you can be feeling manageable and the next you are in a severe flare, trying to figure out what caused it. You would think the warm weather would help with flares, but for me staying in the sun too long can cause me to feel very ill. I am glad to have the AC in handy often, especially during these times.
I modify our summer plans to fit my needs
You can still have a good time and enjoy summer, just in a little different way. This is the second summer, after receiving my diagnosis, where I will be learning what helps me and what doesn’t. I can still enjoy going to the beach closer to home, instead of a longer drive. I can still enjoy being under the sun by bringing an umbrella and staying hydrated. I might not be able to go to the water slides, but I can still enjoy going in the water, as warm water helps my body move easier and relaxes all my muscles.
As the sun sets later, I can still enjoy taking short walks with my spouse, around the neighborhood. A little drive with the windows wide open can help so much and feel like you got out of the house a bit. Stepping outside on the deck and just taking some time for yourself on a beautiful summer day can make a difference in the way you are feeling, bring your mood up, especially when a bad flare comes along.
Have you ever had to take a leave of absence from work due to your symptoms?
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