I've been doing a lot of everything since my last post. A lot of crying, yelling, sleeping, loving, living, working, researching, and more. Finally having a complete diagnosis is such a relief. And being able to google my newly diagnosed disorder and read blogs of people who truly understand exactly how I feel. They've been through the exact same frustrations and pains I have. And as much as I love my friends and family, they just don't understand everything. I am going to Mayo Clinic this June to be seen by a specialist and his team who know the ins and outs of dyautonomia, and that is SUCH a HUGEEEEEE answered prayer!!! Finally a doctor who not only has heard of this disorder, but can hopefully get me on the right track to managing my symptoms. But as I have done research to learn more about my condition and how I can do little things to feel better, it made me realize that my friends and perhaps other random people may want to know more. So this blog post is for you! Explaining what dysautonomia is, some symptoms that I'm currently dealing with, and how to help! Not just me either, but these tips are good for anyone really.
So. What is dysautonomia? "
Dysautonomia is a medical term often utilized for a group of complex conditions that are caused by a dysfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system.
So basically anything your body automatically does like digesting food, regulating your temperature, blood pressure, etc etc....mine either can't do, or it takes longer than normal to do. Which is why I am so dang tired all the time! My body is working crazy hard just to do normal things, and then I put it through the extra stress of my daily living.
Here are a list of some symptoms that people with dysautonomia have. I've bolded the ones I currently experience. But like other invisible diseases, like autism, no two cases are alike.
-Dizziness
-Fatigue
-Fainting
-Increased heart rate (tachycardia)
-Low heart rate (bradycardia)
-A variety of digestive and urinary problems
-Tingling/numbness/pain in the extremities
-Problems swallowing
-Chronic pain
-Fluctuations in blood pressure
-Shortness of breath
-Chest pain
-Sleep disturbances
-Cognitive impairment
-Chills and/or flushing and hot flashes
-Feelings of anxiety
-Headaches, migraines
A lot of people have been SO sweet through this hard time, and many of them text me and tell me to let them know if I need anything! Which I totally love and is so sweet, but one of the hardest things to deal with is losing my independence. I HATE asking for help. Because to me needing help doing everyday things means I am weak. But I'm quickly learning that allowing people to help me and do little things is such a relief for me, and saves me energy to do things that I have to do like homework. So unless things are super bad, chances are I won't ask for help. But chances are if you straight up just tell me you're doing something, I won't say no. So here are some helpful things YOU can do to help me out, and like I said this could be applied to many situations. But sometimes I don't like telling people little things (like #1) because it makes me feel bad or weak like I can't keep up. But let's be honest...I can't. And having understanding friends makes things unbelievably less stressful. I took some of these from another blog, so some are mine and some are a mix from other sites!
“How can I help?”
1) Go slow!!! I know you may be thinking you're walking at a normal or even slow pace, but it's really hard for me to keep up. So when walking anywhere or going up stairs (if there's no elevator) takes me longer than you.
2) If I choose to share my anger or frustration with you...sometimes you just need to let me be mad.
The reason I've had so much trouble (until now) talking about my illness is because I never, ever want it to define me. But I do have to be realistic and recognize my limitations. It was, and still is, an emotional roller coaster, one day I could be totally fine and completely loving life, other days I'm angry, frustrated, and feel helpless. Sometimes the most comforting thing during this time is having friends that tell me I have their support, and that they understand why I'm frustrated. But there is a difference between validating my feelings and pitying me. I don't want pity. Yes I have two incurable diseases....but that doesn't make me any less of a person. Yes 99% of the time I need encouragement and want it. But think about it, if you're really angry about a situation and are venting to a friend and they never recognize your feelings - venting is no help. I appreciate the sentiments and encouragement, but if I'm venting....let me vent. Sometimes I just need to be mad and get it out.
- Validation: it is different than empathy or sympathy in that there is no “poor you”. The message when you are validating someone is “you are entitled to feel/act the way you do, it is a normal response”. You are giving the person “permission” to be upset, distressed, or however they may be feeling.
- Empathy: There is a HUGE difference between empathy and sympathy. This explanation really puts it into an easily way to see it:
Imagine I am stuck down in a huge pit. Sympathy would be you discovering me in the pit, crying with me about being stuck, and jumping down in the pit with me. Then we both would wallow in our misery. Empathy would be you looking down at me in the pit, validating I am right to be distressed about being stuck in a pit, and then saying “I will do whatever I can to help you get out of this pit”.
It is okay to cry or be angry at the illness with me, just do not make that all you do. Stopping there doesn’t do much to help the person. Validate your loved one, but never say you understand exactly how they feel. Let them know you will never understand exactly what they are experiencing, but you are there for them to to talk to and you’d like to learn/understand more about their condition. Ask if there is anything you can do (errands, visit, cook) to help. Better yet, surprise them by sending them cards every so often letting them know they are on your mind, pop in with their favorite candy, or take the initiative to learn about their condition.
I know a lot of people don't know much about my condition. Shoot, most of my doctors don't even know. That's why I'm doing this. To help share on a broad spectrum a little insight into my life, and seriously ask questions if you have them! People are so scared to ask me questions because they're afraid it will hurt my feelings or something...nope! PLEASE ask!!!! I love educating people on my diseases and I think it helps them understand, and then in turn helps them to help me.
3) Never make statements like “but you don’t look sick” or “you look really healthy, you’d never know you’re sick!”
Obviously you can tell I have muscular dystrophy by the way I walk. But lately when I've explained to friends all of this stuff I've been going through they have said they had no idea I was going through it all. Looking at someone with an invisible illness, you’d never know anything is wrong.
4) Ask if there is any way you could help me out. If I say no, do something little anyway.
I sort of mentioned this before, but it's crazy hard for me to accept help. I'm getting better at it, and realizing how much it helps...but I'm extremely hard headed and so I still sometimes reject offers of help. Not being able to do little things like cleaning my apartment anymore to me is just a sign I'm getting worse. I didn't want my mom to have to come and clean my apartment because I can't. I didn't want to admit I needed help bringing in my groceries or even have someone go with me to get them. These things seem so small and simple, but it saves me so much energy to not have to do them. So I'm trying to be smart and maybe take a hit to my pride if it means I won't feel as miserable that night when I go to bed. Even something as small as someone sending me a card or a sweet text can really brighten my day and give me a boost.
Here are some ways people have helped me I really like:
- ask if you can come over, lay around, and watch TV or movies with me...or even do homework! (this one is a HUGE one, it doesn't sound like much, but just having someone around makes me feel better)
- text/call me and tell me about a fun memory that just popped in your head
- tell me if you really liked a blog post! I spent a lot of time on these and it really means a lot to know that a) you took time to read it and b) it helped you somehow or you liked it!
- send me a card every so often
- learn about my illness
- offer to give me a ride - so often (given my epic parking spots) I usually drive places. Which is totally fine - I love driving! But some days I'm just really tired and it's such a relief to have someone else drive!
- send me a happy picture of us
- give me lots of hugs, cuddles, and kisses
5) Learn about my illness
I feel so appreciative when people take the time to learn about my illness. If you are one of my family members or friends, here is a great website to learn more about dysautonomia :http://www.dinet.org/
Just know going in that you are going to come across a lot of “magical” remedies, and causes of any invisible illness, that are simply not true. Please don’t share them with the person you are trying to support. Unless you feel it isreally important, I recommend not telling the person how to get better. Trust me; they are trying. If you must share a remedy, fact, or treatment, phrase it like this, “I was reading about dysautonomia the other day and saw a treatment called/involving ______________, what do you think about it?” This gives the person a chance to let you know they have or have not heard about it. Nothing is more annoying then someone telling me I need to do "x" and I'll magically get better. Obviously if I knew that, I would have done it!
The reason learning about someone’s illness helps is because it shows you care. Just saying something like “I know going to a basketball game is a big outing and I understand it's too much for you right now” or “That sounds hard never knowing how you will feel when you wake up” is helpful and much appreciated. It shows empathy and validation(see suggestion number two). Ask the person what types of remedies they are using, for me it is lots and lots of salt, compression hose, and lying at an angle. When they are at your house, show them somewhere they can lay down if needed. All of these things are signs you are trying to learn and are appreciated SO MUCH!
6) Remember there is a person in there, they are not just an invisible illness or diagnosis
Whew! I know this has been long, and kudos if you've made it this far. It means a lot. I hope that this has helped a little bit and given you more information about how to help a friend, or specifically maybe learning more about what I deal with on a daily basis. There is no way I could do this without God, and the support of my family and friends. And education is half the battle!! When someone is having a rough time I just want to know how to help, and hopefully this has helped you. So always ask questions if you need clarification or an answer. These tips are ones I would recommend for anyone going through a chronic illness, and think they all hit home really hard for me. I love you all so much!!!!
