When the Inside Doesn't Match the Outside
Nothing could stop me…until one day something did.
I was sick and dying inside, yet you wouldn’t have known by looking at me.
Before becoming chronically ill, I naively believed that if you were sick then you can’t hide it. For many years, I’ve put on the greatest show to friends, family, co-workers, and acquaintances having them believe my life is perfect and on track.
Nothing could be further from the truth. I had to readjust my life in order to keep this fascade going because it was easier living a lie than telling people the truth. I wasn’t taken seriously when I felt my worst and bedridden. There’s no way anyone would believe me now because I look “normal.”
The purpose of this post is me finally sharing my truth. You’ll learn all my symptoms, what I’ve had to do to push through all these years, and you’ll learn the ‘lies’ I had to live. I hope by being open that others who have dysautonomia/POTS or any chronic illness won’t feel alone in suffering and there’s hope in still being able to live as close to a normal life. I just wanted to finally let it all out and tell my loved ones what I’ve been going through.
I felt the easiest way to describe everything was to group by body part/system or a particular symptom. Then, I’ll quickly explain what I have to do to either tolerate it or work around the symptoms. I have all these symptoms daily. The only thing that changes is the severity, which is dependent on different factors.
RESPIRATORY: Out of all my symptoms, this is the hardest as breathing takes a lot of energy. It feels like I’m suffocating from the inside. Breathing normally is not adequate. It seems my body and brain isn’t registering that I’m breathing. I do get shortness of breath if I exert myself too much. Along with this, my chest feels like there’s an elephant sitting on top and there’s resistance with every breath. To counteract, I have to actively concentrate on my breathing—slow and steady. Every so often I have to take a hard sigh/yawn to get a deep breath so the suffocating feeling goes away.
HEAD: I get lightheaded and dizzy, sometimes to the point that I collapse but never losing consciousness. You know when you go from a light to dark room (or vice versa), you get that moment when your vision goes black and blurry and then goes into focus — I get that with sudden movements or changing positions. So I definitely have to avoid quick movements — getting up slowly from laying to sitting to standing, or I have to get up slowly if I bend over to touch toes and then standing up straight. I have constant brain fog which I’ve learned to just push through. Usually if I get enough sleep the brain fog gets better. Dull headaches will come and go so I try to stay hydrated or take an Advil if it’s unbearable.
FATIGUE: The worst time was when I was bedridden. I felt like a million pounds and had no strength to lift myself up, and moving around was like walking through a riptide. I was hanging onto counters, the wall, anything I could for support. I had to force myself to get up and do any activity to slowly build strength. Unfortunately, I only could get to a certain point and still deal with “mild” fatigue no matter how much rest I get. In the past, I’ve had it so bad that I could barely drive myself home from work or school. I would pull over every half hour and rest for however long it took until I got comfortable to drive again. I have to make sure I have at least a day in between several days of work to do nothing but recharge. I also had to limit going out or driving at night as my fatigue gets worse through the day.
EATING/DIGESTION/GASTROINTESTINAL: There’s a feeling of something stuck and pressure in my throat even if I’m not eating. The only thing I’ve found is “burping” excess air (it's not the same as burping after eating a meal) to temporary relieve this sensation. I have difficulty swallowing and if I don’t chew thoroughly (to the point of being mush) food will get stuck or it moves slowly down my throat like thick viscous honey. My stomach becomes distended if I go too long without eating, and randomly so it's not consistently in relation to meals or types of foods. Nausea comes and goes. The worst part is these will often cause my breathing symptoms to worsen. Eating small meals frequently has helped me the most with these symptoms.
SENSATIONS: I get random sensations that usually run through my arms, hands, shoulders, and neck (it’s less frequent in my lower body). It can be a numbness, tingling, or an itchy sensation that’s deep inside my skin and you can’t scratch it for relief. Varies in intensity and length of time it lasts and unfortunately, there’s nothing I can do except wait for it to go away.
ACHES & PAINS: I'll get different types of pangs but the most common are: quick stabbing pains or a 'pins and needles' in stomach, quick stabbing pains in chest area -- like someone holding my heart and pinching, and muscle aches all over (but usually in the neck, shoulders and back called coat hanger pain) even if I haven't worked out. Again, I can’t really do anything for these as they randomly come and go.
TEMPERATURE: My body can’t regulate its temperature. For example, if I start to get cold, I’ll get feverish chills down to my core. And it will take a lot to get me to stop shivering. This one is a bit easy to handle as I just have to avoid causing shock to my body by going between extreme temperatures.
EXERCISE INTOLERANCE: After a severe relapse, my exercise tolerance goes to nil. I can go from working out hardcore doing burpees for years to barely able to walk. It's such a dramatic change. I have to force myself to do enough activity even if I feel like I’m dying because I don’t want to become too deconditioned. It can take me months to years to get back to my peak exercise level.
It’s very difficult to put into words what I live with every single day. And I know my friends and family can never truly understand unless they’ve gone through it, but I appreciate them caring for me the best they can. I wanted to end this post by thanking everyone who are still by my side even though I felt I was a horrible wife, friend, colleague, co-worker, cousin, sister, or person. I’m sorry for all the events I didn’t go to because I didn’t have energy or felt it would kill me if I went, but I made you feel I had better things to do. I’m sorry to my family for letting you on thinking I was just ‘lazy and unmotivated’ to work a full-time job instead of just asking for help. I’m sorry to my co-workers letting you think I was too good to work your afternoon or night-shifts — I really tried to arrange my schedule to take your shifts when you asked. To all who are still in my life (and even in my past), just know that I love and appreciate each and every one of you even if I’ve never expressed or shown it.