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When Chronic Illness Makes You Give Up Your Planned Timeline

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Before I got sick, I had always been the “five year plan” person. At any given time, if asked, I would have been able to produce a detailed itinerary of the next few years of my life and how it would contribute to my retirement plan. However, over the past year I have had to overhaul my entire outlook and plans. With new diagnoses and prognoses forming on a regular basis, I have had to give up the false security I felt with the “timeline” I had created of my life.

My doctors opinions can range widely between their projected life expectancies from too young to well into my 70s. In other words, I no longer have the solid five year plan. Not having a cookie cutter outlook on the progression of my disease can be extremely challenging at times. I have to catch myself when I drift into the land of “what if.”

My thoughts can quickly spiral: why waste time in college if I don’t live long enough to get a career with my degree? Should I postpone study abroad for a new treatment or risk a decrease in health because I may not have another chance? Should I bother getting married and having kids? What if I live to my late 70s but live too safely to achieve anything but a longer life?

As you can see, my thoughts quickly go into what therapists would refer to as “catastrophizing.” In short, catastrophizing is looking at your future and anticipating all of the things that could go wrong. So how do I avoid this without living in a bubble? Well, I exist in a gray area. On one side is me never wanting to do anything that could risk my health in any way, the other side is living like I have only a few days left in this world. Both extremes would result in an unfulfilling life, but the small area that is between the two? That is where I have learned to be comfortable.

I tend to think monthly instead of yearly now. I take risks that are worth it, I stay up until midnight with my best friends when we are laughing until we cry, then I sleep in and take it easy the next day. I go into negative spoons for a day at the park, but realize when a party isn’t worth it and do some self-care the same evening. I chose which treatments are worth the side effects and which ones will just decrease my quality of life. In other words, I have become very adept to balance. I live life without fear of death, but also do everything I can to help my body keep fighting. I am living my life in a way that I go to bed each night satisfied with the life I have led while still having goals to complete tomorrow. I am always ready and prepared, just in a different way than the healthy “five year plan” me was. I have become comfortable in the unknown.

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17 Tips for Staying Hydrated, From People With Dysautonomia

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As summer continues, the heat can make it difficult to hydrate. Dysautonomia Support Network asked our members what tips and tricks they have to make sure they stay hydrated in the summer sun! We love that our community is willing to share helpful hints to support each other.

*Many of these are given under the supervision of a doctor, so please consult with your physician before making any changes to your diet or water intake.

1. “My doctor told me to drink my first eight ounces of water before I even sit up in bed in the morning. It really helps!” – Kathleen T.

2. “I have a reusable water bottle that I keep filled all day. I mix an electrolyte supplement with water and a splash of cranberry juice and keep it cool with ice or frozen lemon wedges. I just keep adding to it whenever it’s low. I also keep drinks in my car just in case and a couple extra bottles near my bed.” – Tenille M.

3. “Invest in a good water bottle that you can have with you at all times. I love the liter size glass bottles so you can keep track of how much you’re drinking.  I don’t just drink plain water; added salt, liquid minerals and magnesium help the cells hold onto the water. Also, I juice cucumbers. They are really hydrating, help to regulate blood pressure and contain electrolytes.” – Corinne S.

4. “Always be prepared! I have pitchers of water and a glass where I hang out at home so I’m always able to pour a glass. I also carry two reusable water bottles with me in a small cooler everywhere I go. And don’t forget electrolytes such as rehydration salts (and ask your doctor first about what’s right for you)!” – Alia G.

5. “I know this may sound silly, but with my brain fog, I’ll easily forget to drink my fluids. I have an app on my phone that reminds me to drink as well as forces me to track how much I’ve had and how much more I need based on my goals.” – Tianna F.

6. “My little zebra absolutely does not like drinking…period. I bought the Ulla light that can be used on most glasses or bottles. The light flashes to tell you it’s time to drink. It helps me remind her to take a drink.” – Mary M.

7. “My friends and I play a hydrating drinking game when we hang out based on what movie or show we are watching. Every time there is a commercial, we make sure to take a few steps around the house and drink from our water bottles!” – Alexandra R.

8. “I buy one-and-a-half-liter water bottles every week and make sure I drink a full bottle once a day. I drink coconut water when it is needed, as that really helps, and take electrolyte tablets if I’m having a really bad day.” – Brianna K.

9. “Homemade spa water!! Infused with fruit, herbs, cucumbers… the combinations are endless! My favorite is blackberry, watermelon, lime, and mint!” – Lauren H.

10. “A splash of juice makes a lot of electrolyte supplements taste better. A couple ounces of pineapple juice can balance the salty taste of some tablets.” – Amanda A.

11. “I add “Real Lemon” packets to my water. They are all natural, high in vitamin C and are sweetened with Stevia.” – Sheila S.

12. “Take a water bottle everywhere!” – Maria H.

13. “Coconut water, a lot of salt and salty snacks, mineral water with magnesium and potassium and I get IV saline weekly.” – Adela

14. “Watermelon juice!” – Meredith L.

15. “First thing out of bed I try to drink as close to a liter of water as I can handle. I make sure I keep salty snacks and water on hand throughout the day so I keep up that feeling of thirst. Clear pee is the way to be!” – Kerry

16. “I have to have it cold if I want to drink a lot. Ice cubes on deck. Lemon juice if I need variety.” – Michelle R.

17. “I have an app that reminds me to drink with a fun little cartoon plant. If I don’t drink, the plant isn’t watered, and I feel guilty!” – Alexandra R.

*Entries have been edited for clarity and brevity by Dysautonomia Support Network.

Thinkstock photo via kieferpix.

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Why I'm Flaunting My Bruises From My Medical Treatments

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Flashback to a warm summer night in May, the night before my wedding. I was a nervous wreck. Not because I was having cold feet or second thoughts, but because I wanted everything to be perfect. My best friends were in the basement with my aunt and mother helping to prep the wedding flowers, my wedding dress was being hung on the door so it wouldn’t get wrinkled, and my dad was working on creating the best father-daughter dance song.

Everything was looking perfect, except me.

Here I was, the night before my wedding, with an IV pole in my left hand and a needle to put in my stomach in my right hand. I needed to give myself as much medication as possible to make it through my wedding day. I looked in the mirror with frustration. Sure, I could hide these things from everyone at the wedding, everything except the bruises on my arms. I didn’t want anyone at the wedding to see the bruises because I didn’t want to be asked the inevitable, “How’d you get those bruises?” I didn’t want to tell them that I had sepsis from my port, then a peripherally inserted central catheter (PICC) line to treat the sepsis, and eventually got a blood clot and had to give myself shots for weeks to be cured. I especially didn’t want to tell them all of that on the greatest day of my life.

The port was supposed to be my saving grace. I was finally able to get saline infusions to treat my dysautonomia whenever I needed to! But, it failed on me, and now I had something to show for it. I called the photographer right away to beg him to edit my bruises out of each and every photo. I didn’t want to be reminded of it. He promised he would and I finally breathed a sigh of relief. Things were going to be perfect. I covered my arms with as much make-up as I could without looking orange and enjoyed my wedding.

I got the photos a few weeks after the wedding. Sure enough, there it was. A nice round bruise in almost every picture. I was heartbroken. I didn’t want to share these photos with anyone because it was just going to make me relive all the hospital treatments all over again. Even if it looked small or unnoticeable, I saw it. I never want to look sick or look like I have something wrong because I try way too hard to convince myself that I’m not. But, it’s not true. I am sick, but I am a warrior. I have spent my life hiding from my multiple illnesses because I care too much of what people think of me. I don’t want to be known as weak or a failure at life. I am the opposite of that. I push through everything that comes my way because I want to make the best of this life I have been given. And I do!

A bride and groom on their wedding day, the bride showing her bruise on her arm.

This weekend, I had pictures taken of my new little family. I have been blessed with a beautiful baby girl and want to remember every moment of it. Because I have had a blood clot in the past, I have to take the shots all over again after labor. This time, I’m not afraid to show the bruise on my arm. I didn’t even mention it to the photographer. I want to flaunt the bruise. I want everyone to know that I made it through a tough pregnancy, I made it through a tough labor, and I am excelling through motherhood because I am strong and I am brave. I will not let my illnesses take over my life. I get to live my life to the fullest with my beautiful family. I have never felt better and I couldn’t be happier.

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Why I Write About My Journey With Dysautonomia

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I was only 14 when my journey with chronic illness began. High school is a time of many transitions, and I could never fully process what I was going through. Maybe that was a defense mechanism or maybe my brain literally could not come to terms with what my body had experienced, but either way, I felt a sense of loneliness. My experience with chronic illness was one flooded with physical turmoil, emotional confusion and social implosion. But it was never lost on me that my diagnosis process would have been so much longer and more excruciating had I not known people who had been diagnosed with dysautonomia before me. I sincerely hope that my choice to be vulnerable and to share the not-so-pretty details of my life could help some others come to terms with their own journey.

 

By the time I reached a diagnosis three years after onset, I largely found myself lacking camaraderie. My high school so strongly valued awareness and community for depression and anxiety, but no matter how hard I tried, I could not create that same structure for people like myself. Writing gave me the opportunity to immerse myself in a community of people who embrace their shared values while still appreciating what makes each of our stories individual.

Before, I was hyper-focused on what my story could do for others. Once I found The Mighty and started writing, I realized how important it was for me, as a human, to have this outlet. Writing forced me to be introspective and reflect on my experiences in ways I was previously terrified to do. I still hope that others find comfort (or whatever else they need) in my story, but the intense thinking I’ve had to do about the last four years has allowed me to present my story more fully, honestly and confidently.

So that’s me, and that’s why I write. I may not know much, but I’m sure my journey is nowhere near over, and I’m going to write until it is.

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Thinkstock photo via Jupiterimages.

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When I Realized My 'Body Quirks' Were Symptoms of a Chronic Illness

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I used to love long, hot showers, the steam filling up my bathroom and coating everything in a sticky dew. I always knew, though, that I had to be careful – that if I stayed in there too long I would feel that familiar nausea, that lightheaded feeling that forced me out of the shower and onto my bathroom floor.

I always avoided committing to events I knew would require standing in lines. I regularly felt ill waiting for the train when I had early morning classes. or when my family was about to take a vacation somewhere and my father insisted on taking what felt like the earliest possible train or flight.

It was a bizarre fact of life that I had always as accepted as normal, my normal. It was just something my body did.

One week last year was my final straw: I had an early class and stepped onto the overcrowded bus, forced to stand with my face in somebody’s armpit, holding on to somebody’s back seat handle and using the muscles in my feet to keep me balanced as the bus shook with each turn.

The ride through the tunnel at this hour is always agonizingly slow, clogged with the tired masses commuting to work. The bus, filled with more people than I think is probably legal, gets hotter and stuffier as the ride goes on, the huge group of passengers filling the air with their body heat and warm breaths.

I felt that familiar light headedness, that creeping wave of nausea, as I started sweating bullets, my anxiety rising. I knew, inherently, that I’d be fine once we got to the terminal. I’d be fine once I could walk and breathe and get off this bus.

Traffic was particularly bad that morning, though… the nausea came in waves and my light headedness was turning into that fainting feeling – the same one I had when I once briefly fainted in a campus bathroom, immediately returning to full consciousness as soon as I had hit the floor. There was no room to faint here, though. I used the working bits of my consciousness to find a seat in the back… a tiny sliver of room not everyone would fit in, but I asked (something I normally wouldn’t do) for some room and immediately sat down, burying my head on the backpack in my lap.

Luckily, I stabilized quickly. The light headedness went away quickly, and the nausea soon thereafter. As soon as I stepped off the bus into the cool air and began walking briskly to the subway I was fine, with an unseemly sheen of sweat coating my face.

After nearly fainting in the shower the following week, I decided that this might be a genuine medical issue I was suffering from, not a weird bodily “quirk” of mine.

This is how I was diagnosed with chronic orthostatic intolerance, a form of dysautonomia (a dysfunction of your autonomic nervous system). Standing upright and still for long periods – particularly if it’s hot or you’re tired – causes your circulatory system to pool blood in the lower parts of your body and not enough ends up going to your brain.

It’s actually rather common in its various forms, but not much is known about these conditions by the public. Explaining it to people usually produces a puzzled, “Huh, weird,” response as they move the conversation onward and elsewhere, and I’m always doubtful they realize how debilitating a condition it can be. I receive dirty looks on the subway for not giving up my seat for a pregnant woman or the like and I have considered buying a commuting shirt that reads, “I have an invisible disability, please allow me a seat.”

I’m writing this as a friendly reminder that people can be struggling with something without obvious signs. Those of us with invisible illnesses know this well, but it can be exhausting to explain ourselves (as if we owe anyone an explanation) to people who hear “disabled” and expect to see a wheelchair.

We aren’t asking for much: just a little compassion and understanding. Oh, and a place to sit real quick.

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20 Ways to Make the Most of Bad Flare Days

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When you have chronic illness, bad days and flare-ups are inevitable. Fortunately, there are ways to still make them a little more bearable. We asked our Dysautonomia Support Network members to share some of the ways they make the most of their bad days or flare-ups, in the hopes of inspiring others with dysautonomia or other chronic illnesses like Ehlers-Danlos syndrome, Marfan Syndrome, gastroparesis, postural orthostatic tachycardia syndrome, and Chiari malformation. Our members have great ideas, but what matters most is taking care of yourself in ways that suit you and your needs.

1. “I try to make sure I always have something ‘quick’ for meals from the freezer so I don’t have to stand very long to make a meal.” – Lucille R.

2. “I make the most of it. I read a book if my brain fog isn’t too bad or watch Netflix. At the end of the day I reflect on at least one thing that went well, even if it is hard to come up with something.” – Molly K.

3. “I train my cat to do tricks. It helps me give permission to myself to not feel bad about having to take it easy and being stuck resting on my couch. I still feel productive by doing this, as silly as it may sound to some.” – Jo C.

4. “I use my support system as much as I can. I ask my husband or my mom to bring over food. I throw on a show or podcast to distract me and try to make it until the pain/nausea/whatever stops.” – Hayley W.

5. “I try to rotate rooms I’m bedridden in so that I get different views. I make sure to have my kids and family around me so I’m not alone. It keeps me encouraged.” – Amber C.

6. “I enjoy playing on the phone while in bed. I keep my charger plugged in so all I have to do is plug it into my phone. I sleep if I can” – Tonya B.

7. “I seek what gives me comfort – hot pad, doggies tucked in beside me, medications, fluids, and hold tight on those days to connections with friends (online and in person).” – Adrienne S.

8. “My dog, Lady, has come to love my flare days, as they usually turn into belly rub days on the couch watching a movie or catching up on shows.” – Alexandra Z.

 

9. “I need lots of cuddles, and my fur babies and husband are usually pretty good at providing peaceful comfort. I enjoy a warm bath (not too hot) with Epsom salts and a bath bomb, where I listen to Tara Brach’s Mindfulness of Pain or Steadying Your Mind by Rick Hanson meditation. I have candles burning, no lights. Then I will usually hit the bed with lots of pillows and all of my medications and plenty of fluids on hand. Then I bunk down with Netflix. I have to work hard at forgiveness and letting go in the moment when I am having a flare. I find mindfulness helps me there.” – Tamsin M.

10. “I spend time in [online] support groups.” – Amber C.

11. “I’ve found that knitting gives me a challenge mentally while my body rests.” – Tessan B.

12. “[My daughter] finds some small relief in her very dark, cold room with blackout shades and an ice pack for her head. Her devoted rescue puppy somehow senses her bad days from her good ones and simply won’t leave her side for anything. I think sometimes her dog, Lilly, is the best medicine she has when she’s at her worst.  ” – Michelle J.

13. “Snuggling with my boys and watching a movie or show we like. If I can sit up, I play card games, sit out on my deck and overlook our pond and enjoy the pretty outdoors and my decorations. I nap when needed.  I drink lots of water and eat small salty snacks.” – Erik A.

14. “I play games on my laptop and phone. It’s great because even from a hospital bed, there’s fun adventures and lots of friends who support you from all over the world!” – Stephi J.

15. “I do a lot of praying and send out requests to my prayer warriors.” – Amber C.

16. “[I listen to] books on tape for days when I’m too sick to keep my eyes open. My pup makes me feel less alone. I try little, easy craft projects on medium bad days.” – Sarah F.

17. “I watch Netflix or listen to a book on CD, and if my hands aren’t in pain I knit. It helps to relax me, and I also feel productive even though I’m resting in bed.” – Emi D.

18. “Cuddling with my cats, and plenty of Netflix, hydrate and chill.” – Elyse H.

19. “I make the most of bad days by locking myself in my room and watching Ghostbusters on repeat with my pug Oscar!” – Sherri L.

20. “Let yourself have down time and don’t push yourself too much. Think of your energy as a bank, if you use energy you’re going to need to rest to save up more energy.” – Soojin K.

Note: Dysautonomia Support Network has edited posts for clarity and length.

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Thinkstock photo via Flame-wave.

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