Health, Unveiling Invisible Illnesses

Spoonie Nightstand

What is a Spoonie?

For those with chronic illnesses, we have a general way to describe our energy levels and fatigue: the spoon theory. We get 12 spoons per day, which is a metaphor in which those with disabilities understand or use to explain how they feel. Each spoon signifies a measurement of energy. Going to the store costs 2 spoons, and on a rough day, taking a shower may cost 4 spoons. Cleaning the bathroom is another 3 spoons. That leaves us with 3 spoons left for the rest of the day. We may have to borrow spoons from tomorrow, leaving us bed-bound.

Spoonies are people with disabilities, chronic illnesses, chronic fatigue and anyone with medical conditions that limit their activity.

My nightstand essentials:

Some of my favorite necessities are found on my Spoonie Amazon List and others are from Wildling Apothecary.

  • Enchanted forest essential oil scented CBD and magnesium lotion, for aches and pains, from Wildling Apothecary

  • Salt lamp for purifying the air and of course to shed some light while I eat in bed… yes, I eat in bed.
  • A mini Buddha that was my grandmother’s. She was my favorite person and we had such a special bond. She lived to be 96 years old and I still think about her every day.
  • Lip balm is something I always need on my nightstand because I am often dehydrated, despite how much water I drink. I can’t stand the feeling of dry lips so they are always moisturized.
  • I always have water on my nightstand but since I just tidied up and added a little shelf, only herbal tea is pictured. I have herbal tea several times per day. I love peppermint and ginger for an upset stomach, kava or chamomile to relax and elderberry for immune boosting. I have quite a collection and also make my own blends.
  • Books! I won’t lie, it takes me forever to get through books because I flip through many and with a hectic schedule, it is hard to squeeze in the time. Really, I just need to make the time. My current favorite reads are The Dysautonomia Project and Dirty Genes.
  • My necklace from AWARECauses and labradorite earrings from Do Designs find their happy homes next to the bed because I can’t sleep with jewelry on.
  • My nightstand and granite heart dish were both handmade by my husband. He is pretty damn awesome.
  • I have my tiny (Walmart) heater year round. Dysautonomia is the dysfunction of the Autonomic Nervous System and can affect the automatic things that your body does, like breathing, body temperature, blood pressure, and heart rhythm. When my body temperature drops I feel freezing; my hands turn white and I have a hard time breathing due to shivering. This little heater keeps me warm without making my husband hot. I mean, he is hot though!
    I love my diffuser and use many different blends depending on how I feel, my mood, or the time of day. Certain oils also keep the air clean and act as antiseptics. Not shown, under my nightstand, is a box of things like a blood pressure cuff, pulse oximeter, thermometer, hot packs for stiff muscles, wrist braces, compression socks, and other necessities. I try to keep them organized so I can find them easily. Monitoring my health is important so having access to a blood pressure cuff, for example, is needed to make sure my bp doesn’t get too low. It’s like being my own nurse and helps prevent ER visits because I can manage my care to an extent.
    I keep a collapsible walking aid next to my bed because some days I overdo it and can’t get up on my own. Other times, my blood pressure drops and I nearly pass out. There are also times when my joints just give out and I fall. Some days are better than others and some days are worse.
    Also not pictured but under my bed, is my Biotronik pacemaker transmitter. It transmits a report to my doctor each night. Technology is pretty amazing! I have an apnea machine under my nightstand too, but I don’t have insurance so I am still working out the kinks on finding the right mask. I absolutely hate it but not breathing is worse and my heart has enough damage as it is. Sleep apnea is another common form of dysautonomia. I have had it since I can remember but was dismissed at a young age and literally called a liar because I was not overweight or with swollen tonsils. Dysautonomia is not well known, especially fifteen years ago. Here I am at 34 and I am just now being listened to. This blog is my sole purpose to educate, advocate and raise awareness.
Health, Unveiling Invisible Illnesses

Fight Like a MTHFR!

New book! Who else is a MTHFR!? Okay, seriously, the MTHFR mutation is actually very common and most doctors do not test for it and many are not educated on the mutation. Who wants mental health awareness!? I sure do.

We also need MTHFR awareness and easy access to testing this common mutation that also causes depression and several other health issues. Did you know that I was diagnosed with severe major depressive disorder and suffered from depression my entire life?

I started seeing a therapist regularly who diagnosed me as “severe” and throughout the process of digging for answers for my health, I discovered that I had an MTHFR mutation. I started l-methylfolate and by the following month, my depression was gone for the first time ever!

No one truly understands depression unless that have it. It isn’t just a stressful day or being in a funk because life has tossed you lemons. It is a dark, heavy blanket of gloom that feels like a mountain of grief in the pit of your stomach. After starting the supplements and seeing a huge change, I went to see my therapist and at the end of our time, she told me that she should have paid me for the session because I lit up her day and counseled her. It was such a sign of relief!

I just got this book by Dr. Ben Lynch to educate myself more on MTHFR so that, in the future, when I get my degree I am armed with the knowledge to make a difference. When you want to see a change in the world, you have to get your hands dirty and do it yourself.

Up to 40% of the population had this mutation. Did you know that folic acid is a synthetic, manmade form of folate? People with MTHFR mutations cannot process folic acid, which is also fortified in our breads and pastas. This leads to a toxic build up and can cause depression, ADHD, anxiety, heart palpitations, brain fog and many other health issues.

My Amazon Favorites! Find MTHFR supplement here.