Today happens to be a very POTSie day. Luckily, dizzy spells are much fewer and further between, but I hate when they decide to come around with a vengeance. I have been doing a new exercise protocol lately that is supposed to make me feel worse before I feel better, but I am optimistic about how much it could help me in the long run.*
Anyway, I am currently working on a post about what my POTS timeline has looked like, and the improvements I’ve made, as well as the things that are still different in my life post getting sick. It’s been so interesting for me to look back at different things I wrote throughout the years, but is great to have something tangible to look at regarding my life.
Certain things are becoming more normal, and I am pulling off looking like a normal human being like a pro. I have looked pretty normal since getting sick with POTS, since it’s an invisible illness, but I used to have to ask for help much more often. Now I think people around me often forget completely that anything is wrong with me! I hope one day this will be true. Despite being sick for over five years now, I will never stop hoping to get back to complete normalcy. I have a million different things I’m working on for the blog, so today I wanted to just touch on a few things that have been different for me the past half-decade.
1. I can’t enjoy taking showers. Sometimes I hop in a hot shower just because I am in pain and want something to release the tension in my muscles, but for the most part they’re just exhausting. I usually choose between washing my hair or shaving if I’m going to stand the whole time, and have to alternate between the two or rest quite a bit longer after I’m done. Does anyone actually find showers enjoyable? I can’t remember anymore; now they’re just exhausting.
2. I’m not very extroverted anymore. Before I got POTS, I was super extroverted. I was always around people and had an enormous circle of friends. Mentally, I still want to be doing a million things, but my body isn’t up to that. I feel tired and drained from doing too much, so I don’t go out nearly as much as I used to. When I do, it’s usually dinner or dessert with just one or a few friends, rather than hanging out in a giant group. When I first got sick I really couldn’t do anything other than try to stay optimistic, rest, and work as hard as possible to take care of my body so I could hopefully get better one day. I think some of my friends who weren’t around might have felt like I was neglecting our friendship, but in reality I just couldn’t function. I have lost touch with people I sometimes still miss. Getting sick really does show you who is going to be around for the long haul, and makes you see who has unconditional love for your friendship.
3. I miss writing for hours on end. My favorite thing in the world has always been writing, even back in elementary school or high school when writing wasn’t supposed to be fun. I always said English was my favorite subject, even when other kids would say “lunch,” “recess,” or “gym.” I loved learning more about our language and how to write things that people would enjoy reading. It’s difficult for me to sit at a computer and type for hours without feeling it after, and then being in a lot of pain for days after. I am very slowly working on endurance, and hope to be writing more and more.
4. I miss being a helper. Before I got POTS I was independent and strong. I loved helping other people in any way I could, and was always there to do acts of service. There is nothing I hate more than having to swallow my pride and ask others for help. I’ve had to do that a lot the past few years, and it honestly doesn’t get much easier. I hate inconveniencing others, and I have a really hard time telling people I need something. I am still working on communicating better, but in the meantime I use my writing as an outlet.
5. I wish I could have my old dreams back. I dreamt of living in New York City as a magazine editor, and thought about how many lives I would change through my writing. I wanted to be able to support myself, pay my parents back for school, and afford my own life. I wanted to keep pushing myself and training for another half marathon, and I wanted to collect a million new skills from the new people I’d meet.
I have set new and more realistic goals, and am focusing on getting my body in shape so I can reach higher. Despite my life being much more complicated now, it’s also somehow become more simple. I realize how much I value the people who are in my life, and how important they are compared to everything else in the world. I’ve learned to appreciate the many blessings I do have, and how to live in the moment better. I still feel like I’m looking to find my purpose in the world, but I also trust God now more than ever to have better plans for me than I ever did for myself. I’m just trying to figure out what that is now.
*For any POTSies who are curious, I am doing the Levine protocol.
5 thoughts on “Strange Things I Miss”
Point three really hits home. I also love to write. Some days it flows, and some days all my ideas are tangled together like a group of people trying to exit the same doorway at once. But I would hate to lack the energy to sit and write. J.
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I’m so glad you share your journey with POTS because I honestly don’t know much about it! I will say though I HATE showers so we can just pretend that they suck for everyone lol
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Totally get this in many ways. I’ve found a close group of friends yoy can trust, beats a large group any day. Plus, you can meet more people, but be discerning on who you allow close. I want my dreams back to, but I think we all have this vision of how life should go, but it really doesn’t go that way for anyone in thee d, or not many of us. I always wonder, if we had gotten our dreams would that have actually made us as happy we think it would? I miss the writing/reading for hours on end too, totally get that. And I’m pretty sure with those close to you you’re extroverted and that you help many people in enermous ways, ways you don’t always realize. I think in blogging you help people, I think you hel0 your husband & family. And I think you’re a great help to strangers too. Take care girl.
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Thank you so much, this comment was so kind and offered some good insight. You’re totally right; who knows what life would look like had it gone according to plan?! And I do think I’m still outgoing and spend my energy on people I’m close to. Do you feel that’s changed at all for you?
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Yes, defiantly. I had awhile where some of my closest friends spent less time with me. But, we worked it out. My one friend K explained to me this year. She’s been so excited I am more like my old self these past couple years. She said that when I became sick it was like I was lost. That the Amanda they knew well and we’re best friends with was only half there. It was hard to here, but I appreciated her honesty. She understood my illness better after battling her own health issue. But I never thought to my friends it would feel like lost me for many years. Or that I was there, but not really there when my attention/concentration would go. Luckily, they’ve all stuck by me and weathered the changes. They are excited I’m moving into my own place and that my energy keeps increasing after my last major meds change 3.5 years ago. With them I’m me and those who know me well. But, you are right that sometimes you don’t have the time/energy to waste in strangers or especially, people who are mean/grumpy. I’ve been working on this and can do it for work events casually and selling Steeped Tea, I’m better at this online. As online work if any kind can be frustrating when you’re used to dealing w/ people face to face. I don’t think it’s wrong to choose who you spend your extroverted was in. I’m about 50/50 and need to be around people as much as I need alone time to recoup. I think that used to be more like 70/30. 🙂