Chronic Illness Chronicles

As I get further from my diagnosis dates and further along with my treatment plan the goal is to have more good days than bad. As I was thinking about this post I was trying to think about what is considered a good day and what is considered a bad day. This is different for everyone but to me a good day means my POTS symptoms are manageable and I am not faint and my vision feels normal. It would also be a good day if my fatigue is minimum and I wake up with more energy than normal. To me a good day is when my POTS is under control, even if I have high pain, GI issues, or constant allergic reactions. I guess that shows what my tolerance level is for my illnesses. I also think that that makes sense because although I have dealt with POTS for years it hadn’t gotten to this sevre of a point until fall 2020. So the constant allergies/hives/allergic reactions, pain/subluxations, and constant GI issues became MY normal. I would love to say a good day is when I have no symptoms of anything but that just has not happened. But that does not mean I can not learn to manage my symptoms and still be able to have a good day! I have been thankful to have a great medical team who has been able to help me get to a more manageable state for my POTS. But that does not mean I never experience bad days.

And that’s where this post is leading. It can be hard and scary to talk about your good days, accomplishments, vacations, nights out, etc when you are chronically ill. This is because there is a fear that you will now be invalidated by those around you, being scared to get better is kind of a thing, at least for me. Not because I want to feel sick all the time, but then people can’t tell me I was faking it or looking for attention or tell me I’m so glad you are better. Because looking at me you wouldn’t know what I struggle with. 

I am proud of myself for how hard I have worked to get my life back on track. It has taken a lot of strength more than I thought I could ever have. But everyday I think of words my nana anne shared with my mom, that my mom passed on to me. Those words keep me going. I refuse to let these illnesses define me, but I refuse to ignore them as well. So, yes it is possible to have good days but still be suffering from intense symptoms. It is possible to go on vacations and enjoy your life. Maybe I don’t go places as often, but when I do just know that that trip, that night out, takes more out of me than you can imagine. When I have an event, a vacation, anything that will take all my energy I prepare for it a week in advance. I make sure I am resting, eating the best I can, getting enough water, moving my body, and taking all my meds on time. The day of an event I hydrate extra. I remember the day of my brother’s wedding. I had 120oz of water before 8am to do my best not to let my symptoms get in the way of his big day! 

Last year I went to California on a trip that I have wanted to do for years. I was terrified of how my body would react to the change of the weather, the long flight, and what I would do if something happened while I was there. To prepare for this trip I did something similar to what I mentioned above. I started preparing weeks in advance. When I got there my friends were simply amazing with making sure I stayed on top of my hydration and food intake. It really helped because I was so worried that I would ruin the trip or sacrifice some things because it would take away from everyone’s fun. Having this amazing group of friends support me(shout out to Abby, Hayley, Krista, and Sarinya) and triple checking ingredients on food, carrying extra water, and more was more than I could ever ask for. For the most part my health held up while we were there and I made sure to listen to my body. 

I remember before that trip talking to Krista and Hayley about how nervous I was to have bad health days, or to talk about my health at all. I remember wanting to “suck it up” and not talk about it. I also remember when I was there and I felt okay being scared that they would stop watching out for me like they were. They didn’t. 

This past weekend was my 24th birthday. Birthdays are huge to me, especially this one. My 23rd year was unimaginably hard so to be here to celebrate was HUGE for me. As much as I knew my body would be suffering the consequences, I chose to plan a fun night out with some of my closest friends. Now that I have been sharing my story publicly it made me a little more anxious to post pictures from my night out with friends. Erica said to me ,after I expressed to her my anxiety about several things that night, that nights like this are rare for us and to enjoy it the best you can. A friend of mine Kaya also shares this in her Tiktoks that sometimes you have to do/eat/go somewhere for your mental health or comfort. That’s the thing about chronic illnesses, no one wants them and when you do have one or multiple you have to relearn how you can live your life and enjoy the life you have.

Recently I have been able to exercise more. It has taken over a year to be able to get here. I was unable to even walk downstairs for months! I slowly but surely got to moving my body at least once a week. I started with very short walks, then short walks a few times a week, then I got a trainer 2 days a week to help me restabilize my body, after that I was able to work up to 3 days a week of light exercise and now I am at about 4 days a week walking and lifting weights. I can no longer exercise like I used to , maybe one day I can get back there, but I am able to move my body and start to feel like I have a sense of control over my body. This is HUGE for me,but something I get really nervous to share. Some of my friends who have similar illnesses are at a different part of their illness journey and I get scared to talk about it with them because I understand how hard those parts of this journey are. I get nervous that even sharing my story with others who are chronically ill will gaslight me and tell me I am not even that sick. To make it clear my good days do NOT take away from my bad days. Just because I have good days and I am in a good spot right now does not diminish anything that I went through or continue to go through. I still get flare ups. I just had a 2 month long one, were I absolutely was not able to work out 4 times a week. I have learned to listen to my body better and understand what helps what doesn’t, when I can push it a little, and when I need to push it a little, and most importantly when to rest. 

All in all, chronic illnesses come with far more than just physical symptoms. There is a lot to consider on the daily. If you are in a similar part as I am I am so happy for you! If you are still having more bad days than good days I empathize with you and I know how hard that is. Remember my dms are always open and keep going