Chronic Illness Interview Series {Living with Dysautonomia as a Young Woman}

 

I had the privilege of interviewing Susie from Pins to Procrastination. She was kind enough to answer a few questions for me. This is the third post in the Chronic Illness Interview Series. You can visit the first one here and the second one here.

My Fruitful Home: What is the name of your illness and how long have you had it?

Susie: Postural Orthostatic Tachycardia Syndrome (POTS), which is a type of dysautonomia. Dysautonomia means dysfunction of the autonomic nervous system. The autonomic nervous system controls automatic functions in the body- everything from heart rate to breathing to digestion. The basic gist of POTS is that you have tachycardia (increased heart rate) upon standing. The amount of energy it takes for someone with POTS to stand is equivalent to a healthy person running in place. POTS also has lots of other symptoms, mainly fatigue, fainting, migraines, low blood pressure, nausea, and plenty of others. (check out http://www.dysautonomiainternational.org for more info, they are great!) I have had symptoms since I was 12/13 and was diagnosed at 17.

My Fruitful Home: I have heard of dysautonomia. I have fibromyalgia and chronic fatigue syndrome which I heard can include dyautonomia. I didn’t realize there were different kinds. How does it effect your daily life?

Susie: The biggest effect is that I have to carefully consider every activity I do. The best way that I can handle my POTS is to change my lifestyle- for me this means sitting more often, getting lots of sleep (often more than 10 hours), limiting time spent standing, and not doing activities that require positional changes. People who don’t have chronic illnesses often take for granted being able to do anything anytime. Every time I think about whether I should do something, I think: how much energy will it take? Is it worth that energy? Will it take so much energy that I won’t be able to do something else? Will there be a place to sit? How loud and bright will it be? Is there an easy way for me to leave if I get a migraine/ sudden attack of symptoms?. People don’t realize just how much decision making I do in my life. Even things like deciding when to shower or whether to put on makeup are something I carefully weigh.

My Fruitful Home: I can relate to much of this. Just the other day I was explaining to someone how much decision making goes into everything I do. How do you cope with this?

Susie: Well the number one thing is having a great support system. My fiance, family, and friends are all very understanding and supportive. I try to have a positive attitude and consider all the good things that my chronic illness has added to my life. This isn’t to say that I don’t get sad ever, but I work hard on staying positive. I also take medication and modify my lifestyle. I don’t do a lot of the fun things that other people my age usually do, but I am happy and I make the most of what I am able to do.

My Fruitful Home: I think it’s great that you make the most of what you can do. I think so many times when we have a chronic illness it’s  easy to focus on the things we can’t do anymore. How do you mange your blog and illness?

Susie: I started blogging when I had to leave an incredible internship because my symptoms were getting too debilitating. I needed something to do. My blog has actually helped my relationship with my illness because writing about it helps me to process things; it’s very therapeutic. My blog helps me feel more productive, and it also connects me with people. There are times when I can’t post as much as I like because the computer screen is too difficult (usually when I have a bad migraine). Although I post a lot of DIYs and tutorials most of my time blogging is spent working on improving my website, on social media, and editing pictures. Writing is probably one of the smallest parts. I take a lot of breaks if I need to and I usually work from bed, because I feel best in a reclining position. I am super productive and do a lot on days when I feel pretty good and then I have off days when I don’t feel well and don’t do much.

My Fruitful Home: I’m not very good with graphic design so I actually spend more time writing. I wish I knew how to tweak my blog on my own to make it work more efficiently. Do you have a support system?

Susie: I have the best support system. My fiance is absolutely incredible, and he helps me so much. He is happy to do much of the housework or get me food and ice packs on really bad days. And of course he is emotionally supportive as well. My family is also great. They are so good at realizing when things are difficult or hard for me and helping me find the balance between pushing myself but not overexerting myself. They also help a lot by giving me rides to doctors appointments and occasionally grocery shopping or cooking for me. My friends are very understanding and don’t get mad when I cancel last minute, which is super appreciated. As my fiance Lars likes to say, whenever I say yes to plans it is always a maybe, because my symptoms are pretty unpredictable. I have a small circle of close friends because I really don’t have the energy to keep up with a lot of different people, and that is perfect for me.

My Fruitful Home: It is so important to have people who love and support you no matter what. How did you become interested in natural cleaning and beauty products?

Susie: I was really influenced by living in Vermont. I lived there while I was getting my Master’s in environmental policy. I’ve always been interested in protecting the environment and being green, so it was natural for me to start making my own cleaning products while I was living there. I also got a little dizzy and headachy from the fumes of synthetic store bought products. As I started transitioning to natural cleaning products, I also found lots of things about natural beauty products on pinterest and tried those out as well. I found both things really fun and rewarding. It feels so great to make something yourself and see it work. You should see my bathroom now, it is completely full of moisturizers, lotions, face washes, body washes, and anything else you can think of. I have so much fun with it.

My Fruitful Home: I can relate to getting headaches and such. Chemicals and strong smells do this to me. I am slowly trying to learn how to make my own cleaning products. Do you have a favorite inspirational quote or scripture that gives you comfort?

Susie: One thing I always remind myself is that everything will pass. I have gone through a lot of bad days and a lot of pain, but it always passes or gets a little better eventually, even if it is for a short time. I can’t think of other specific quotes that really inspire me, but I am very optimistic and always try to see the positive in things.

My Fruitful Home: That is great to remember. I like to remember this too. When I am having several bad days or weeks I have to remind myself that this to shall pass. In the moment it can be so easy to think it will last forever. Thanks so much Susie for sharing with us a little bit about your life and how you live a full life while living with a chronic illness.

 You can visit Susie at Pins and procrastination.