Caffeine affects people in different ways, especially those with POTS (postural orthostatic tachycardia syndrome). See how we handle incorporating caffeine into our lives and how it impacts our chronic illnesses.
Technically it’s still January and still the beginning of 2018 which means there’s plenty of time to get our New Year goals underway. This year we want to focus on our health, wellbeing and tackling our invisible illnesses.
We experience a change in our chronic illness symptoms for a variety of reasons. Be it from POTS (postural orthostatic tachycardia syndrome), LUPUS, Ehlers Danlos Syndrome or Mast Cell Activation Disorder, see how we combat a flare up.
We thought we'd do 10 random questions so our readers could get to know us better! Like all of our question series we answer everything seperately and don't read each others answers till we're all done writing - keeps it more fun that way.
We’ve both been dealing with chronic & invisible illnesses for over a decade and both have been diagnosed with Lupus, POTS (Postural Orthostatic Tachycardia), EDS (Ehlers Danlos Syndrome) and MCAD (Mast Cell Activation Disorder). We wanted to showcase how we deal with our symptoms, flare ups, over all health and wellbeing and stigma that not all disabilities look the same.
For me, living with a chronic illness feels like I’m walking a very fine tightrope. Having Lupus, POTS (postural orthostatic tachycardia syndrome), EDS (ehlers danlos syndrome and MCAD (mast cell activation disorder) can be a lot to cope with.
I had to recently put down my emotional support dog Rylie and have been heartbroken ever since. Living with chronic illnesses and invisible illnesses has been beyond difficult but she always gave me comfort.
Travel with a chronic illness is very difficult. Instagram may not always showcase this fact, but we wanted to show how hard it can be to deal with chronic fatigue, pain and symptoms while not at home.
We had been planning a trip to Europe for the better part of a year with the destinations being Scoland, Paris, and Belgium. See how we balance traveling with chronic conditions such as Lupus, POTS (postural orthostatic tachycardia syndrome) ehlers danlos syndrome, and Mast Cell while being abroad.
One thing that always gives us a bit of anxiety is traveling with a chronic illness. Laying in your own bed at home, surrounded by all your comforting items, whatever they may be, and not feeling well is hard enough.
After years of fighting autoimmune problems, my body has felt somewhat shut down. I knew my adrenals were in fatigue & I was having an outset of other hormonal related symptoms, but because my autoimmune & autonomic problems were getting treated, this came second. Read about how I used the Dutch Test to find out about my hormones & imbalances.
Coping with a chronic illness is difficult. I always have trouble sleeping which in large part is due to my adrenaline form of POTS. Too often, I am so fatigued during the day, only to be wide awake and wired come night time.
All chronic illnesses in some way deal with fatigue and we know how tempting it can be to grab a caffeinated drink or even something more extreme. We love this vitamin to help with our chronic fatigue due to autoimmune illnesses.
With POTS (postural orthostatic tachycardia syndrome), we don’t ‘hold on to’ water as well as everyone else, so even if we’re drinking a considerable amount, it doesn’t mean we are necessarily well hydrated. Staying hydrated is key when dealing with a chronic illness like dysautonomia.
We had no particular interest in wellness or health before we first got diagnosed with Lupus (each at age 17). Our rheumatologist immediately suggested meeting with a nutritionist so we could start eating properly for our bodies while they fight to get healthy. Check out our our interview with a nutritionist for answers to eating healthy and how diet plays an important role in autoimmune and dysautonomia.
A few months ago I had a muscle biopsy to address some pretty severe pain I was routinely having in my limbs due to my autoimmune conditions. In this post I talk a little more about my journey that took place before and after the surgery.
In a recent post, I talked about lymphatic massages and how getting one routinely can yield many health benefits. While at my last appointment, I asked my massage therapist what I could do on my own to maintain the results - Dry Brushing.
Having a chronic illness like Lupus or POTS (postural orthostatic tachycardia syndrome) forces you to be extra prepared when traveling. Chronic pain and chronic fatigue can feel heightened but being prepared can make all the difference.