Health, Unveiling Invisible Illnesses

How To Be There For Someone With A Chronic Illness

Imagine you have two people who are not on the same page, let alone the same book. One struggles with chronic illness and the other is averagely healthy and maybe even deals with a common ailment here and there, but how can they relate when it comes to health? It may not come easy to some when they have never had their health jeopardized. It is important to build a bridge to have a connection with your family or friend.

Invisible Illnesses

Perhaps your friend or loved one has an invisible illness. This means that they look healthy on the outside but on the inside they struggle with an illness like diabetes, lupus, PTSD, POTS, Thyroid diseases, Cardiac and Neurological diseases, to name a few.

We all have our own battles.

It can be tough to look at someone who looks fully capable of living life the way you do but we are all different. Understand that just because you may be healthy and can juggle so many tasks, does not mean it comes easy for others.

It is important to recognize that with all things, there is a spectrum. With chronic illnesses, that spectrum can vary day to day. One morning, we may have so much energy that we can clean the house and go out to get lunch but the next morning we may be bedridden.

Personally, putting on makeup every day is my way of putting on war paint. I hide my dark circles from waking up every hour. I conceal the redness in my face or sometimes add blush to my pale skin. When I look well, I don’t get asked if I am sick or told I look tired. I feel normal and ready to take on the day.

Just because you friend or loved one looks put together and seems young and healthy, doesn’t mean she wasn’t up at 4am with severe back spasms and again at 5am feeling dehydrated and again at 6am in more pain and a numb arm until it is finally time to get up for the day. She probably got dizzy a few different times while her blood pressure dropped, causing nausea and tachycardia. Be grateful she answered the phone or showed up for lunch and she we be grateful for you.

The Spoon Theory

The Spoon Theory is a metaphor to explain the limited energy that someone with an invisible or chronic illness struggles with. Say you get 12 spoons each day and each task costs a spoon or two. Sometimes a shower can cost 2 spoons on a rough day. Going to work can cost a lot of spoons as well. Cleaning the kitchen? That will be 3 spoons! Sometimes if you push yourself too hard, it costs spoons from the next day which will leave you in bed with limited spoons.

We call people “Spoonies” who fit in to the Spoon Theory.

How to be there for a Spoonie:

  • Understanding – The fact that you have read this so far is already a huge deal for your Spoonie. Trying to understand what life is like for your friend or loved one shows a lot of compassion and empathy. This is your biggest step and the most important. For some, we are constantly judged, assumed we are lazy, told it is in our head, called a hypochondriac or just straight up dismissed. Certain medical conditions sometimes take up to a decade or longer to get diagnosed. Often times there are several misdiagnosis’s and even people get left in a grey area where no one knows what to do. We feel alone and lost.
  • Keep Your Ideals To Yourself – We appreciate your concerns, absolutely. I can vouch for myself that I have done plenty of research, am fully aware of my body and what is normal for me, have a strict diet with optimal nutrition and supplements, non drinker, non smoker and always staying positive as well as seeing a therapist. My health is a full time job. You can’t even pronounce what illnesses I have so please don’t try to cure me. Of course, we appreciate advice but keep it simple and keep it at that. Do not try to push your ideals on someone or tell them if they exercise more they will feel better or that they can meditate to a cure. All we want is a shoulder to cry on, a listening ear, positive vibes and understanding.
  • If You Are Sick, Stay Away! – Seriously, some of us have compromised immune systems and if you have a cold or flu and bring your germs to anyone, even a healthy person, it is just simply rude. If you bring your germs to someone who is already ill, it is cruel. We don’t fight infections and other illnesses very well and most of the time it makes our other issues worse and for some, it could mean a trip to the hospital.
  • Social Gatherings – There is a good chance we might not make it to your event or night out. I can assure you that we wish we were there but more often than not, our health makes us flakey friends. Please don’t stop inviting us! We will always try, even if the chances are slim. Also, please don’t get upset with us if we don’t make it. We would rather be out having fun with you than stuck in bed.
  • Know That We Are Fighting A Battle – If we seem a little off, let us be a little off. There are countless times when I was hanging out with someone while my vision blurred and I start seeing stars, getting light headed and heart palpitations but I push through because this is my normal life. Something that has always bothered me was when strangers, coworkers or peers say “Smile! It can’t be that bad!” Well, maybe I am struggling with an ocular migraine that day, low blood pressure or didn’t sleep well, so if I have a case of resting bitch face then let it be. I know it could always be worse but I am here, smile or not!
  • My Illness Does Not Define Me – I am a strong warrior. I love art, music, travel, culture, anything vintage, food, nature, giving back and being creative. I can be sensitive but I persevere and I keep my chin up. I have not given up and I won’t. I have bad days but I climb above it and stay positive, even it it is a full time job. I am not my illness. However, it is part of my life, whether big or small. It may affect me but it is not who I am.


Banana Bag Oral Solution – Getting My Life Back

Banana Bag is an oral solution that you mix in water and drink. It is like getting a bag of IV fluids at the hospital, only without the needles and scary bill. If you are like me and can get dehydrated easily, this is going to be your saving grace! 

Summertime is the worst time for me. I absolutely hate it. Seriously, it is the definition of hell. However, I live in Florida so it is hot most of the year. Let’s face it, I have three kids and live between Cocoa Beach and Orlando which makes it is hard to avoid outdoor activities.  

My daughter is on a swim team and I had to sit in the heat for 4 hours during her swim meets and the first one landed me in the hospital. The second one, I tried Banana Bag and I made it through. This year, my mother treated my family to a day at the water park and I also made it through without getting dehydrated and sent to the ER.  I froze a liter of water with the solution and I put some cherry juice and fresh raspberries in it so that it was a frozen chunk of ice that slowly melted throughout the day for a constantly cold drink. It kept me cool, hydrated and prevented the usual health issues. It does have a vitamin taste so I like to add more water and some juice for flavor but I prefer it over hospitals and sugary sports drinks. It is such a relief to be able to spend time with my family without having to end up in the ER to get a bag of fluids. This is a game changer!

I have a rare connective tissue disease called Ehlers-Danlos Syndrome that I just got diagnosed with this year after struggling with health problems my entire life. EDS is a collagen defect which causes joint hyper mobility (such as being double jointed) and a plethora of health issues including Dysautonomia. People with dysautonomia dehydrate faster.

For me, my dysautonomia comes in the form of low blood pressure, temperature control such as easily overheating and easily cold with full blown shivering,  pre-syncope with waves of lightheadedness, vision loss and numbness, painful kidney spasms, tachycardia, POTSNeurocardiogenic Syncope and Sinus Node Dysfunction, (pacemaker since June 2017) to name a few. 

I have cut out preservatives, limited sugar intake and eat an anti-inflammatory and autoimmune diet. I take high does of vitamin C and CBD daily. I do not digest meat well so I cut it out and only eat fish and eggs. I cut out dairy because 90% of it gives me migraines with aura and so does MSG and artificial sweeteners. It has also taken me most of my life to learn what I cannot have. If I accidentally consume any of these things, I can guarantee a 4 hour comatose nap and wake up with a migraine and flashing lights, a racing heart and disorientation. This will last all day and sometimes the following day.

 It is also CRUCIAL for me to get all of my minerals, vitamins and electrolytes because I tend to get deficient in quite a few. Vitamin deficiencies can also cause so many health issues and unfortunately get missed and mistaken for other diseases. Vitamin B deficiency, for example, is very common and can cause tingling sensations in your extremities, depression, fatigue, weakness and irritability. 

The cool thing about this product is that it was made by a pharmacist who also made the IV solutions for ERs. It is awesome for POTS, autoimmune diseases, traveling, athletes, hangovers and anyone who is just exhausted, overworked and drained. 

It’s time to start living life to the fullest, which means having the health to do so! I am so grateful to have a home remedy for preventing dehydration and trips to the ER. I feel like I am finally starting to get my life back.