by Amy Keys Chronic illness comes with a smorgasbord of difficulties, but one sure to be at the center of the struggle buffet is GUILT. Guilt manifests in many forms and can quietly sneak in a bit at a time or viciously attack all at once. It's silly to think that a person could feel guilt over something that certainly wasn't their doing or their fault, but yet it is incredibly common. Understanding the different types of guilt experienced can be helpful for the patient, and more importantly, for the family and friends of that person as well. The most obvious type of guilt comes with the financial burden. “My medical procedures and medications are costing this family so much money.” “Maybe we would have a saving account if it weren’t for the emergency room visits.” “I could be making money if I weren’t sick." It's one thing to be too sick to work, but how discouraging to not only be unable to make money but also spend money on health expenses nonstop. Beyond finances, frequently the one who suffers from a chronic condition feels like a physical burden to family and friends. From needing a lift assist to helping with simple hygiene needs, the physical toll can be exhausting to those acting as caretakers. It can be hard to think that your health is draining the energy of your family. The guilt that comes with canceling plans at the last minute or even failing to commit to begin with can be quite upsetting as well. Once again, becoming ill or flaring is not something within a chronically ill person's control. It's so hard to imagine people thinking of you as an irresponsible person because you can't always be counted on for an event. This perception is even more likely with so-called 'invisible illnesses' - nothing like looking great but feeling too fatigued to even leave bed. It can be debilitating to wonder and worry about what people are saying about you behind your back. What if they truly think you're just a flake? What if you have to call in sick to work? Now the person with the condition feels like they are burdening not only their family but their coworkers too. Several people deal with guilt over having specific food restrictions and needs. It can be hard to be the 'high maintenance' one of the group who can only eat at particular establishments, or can only cook certain foods. The types of guilt experienced can seem daunting and unending. So, what can be done? I find it helpful to think about the facts of the matter and only what is within my control. Can I suddenly make myself able to work? Can I decide not to have medical expenses? Can I make myself well enough to be sure I can make it to that event? No. It's ok to feel frustrated for a moment, but don't allow yourself to spend too much time on something that you have no control over. It's important to stop, take a deep breath, and empower yourself by shifting your focus and guiding your thinking in more positive directions. First of all, remember that your health is the top priority, both physical and emotional. Try a gratitude journal to keep your mindset on the positive, instead of frustrations and negatives. Remember to take time for self-care as well; whichever type is best for you. Focus on the fact that if it were your family member who was struggling with illness, you wouldn't feel burdened. You would take it in stride and not resent them for the changes to both your lives. Perhaps when a loved one tells you that you aren't a burden, give them the same benefit of the doubt and know that they mean it. Realize that you still have value and purpose; it may be different than it was, but you still have a place in the lives of your family and friends. You can still encourage the people around you and help in other ways. This is not the end of your story.
If you have dysautonomia, you already know that your autonomic nervous system is faulty. And of all the systems controlled by our autonomic nervous system, regulating body temperature can be the "big" one during the summer. Due to poorer temperature regulation, many of us might experience major health issues this time of year - noted by excessive sweating or the inability to sweat. Heat intolerance in particular, is a big problem throughout the summer. Fatigue is increased, as well as the possibility of dehydration. Along with those two symptoms, is the near guarantee that others will be increased and/or aggravated such as dizziness, nausea, light-headedness, tachycardia, and weakness. While there is no cure for the dysfunction of the autonomic nervous system, there are certainly steps that can be taken to help fight the heat. Avoiding direct sunlight is very important, as well as staying as cool as possible. Cooling vests , neck ties and cooling towels can be bought, as well as wick-away clothing that helps to keep the body cool. I have found that a wet towel thrown in the freezer for a little bit can be very refreshing. Even better, I get a towel wet and drop a few drops of peppermint extract on it and then cool it in the freezer. I don’t leave the house without my mini spritzing fan. It has saved my life several times and was certainly worth the three-dollar investment. Ice packs are also an option. They can be used inside the collar of clothing or in the groin area if severely overheated. Although, when using ice, care needs to be taken to avoid the packs coming in direct contact with the skin. It is imperative to avoid standing while in the heat. Finally, staying hydrated is of the utmost importance. Sweating excessively can lead to a large amount of salt loss which can be life threatening. But even just a small amount of salt lost through sweating can cause symptoms to flare if not hydrated properly. Therefore, it is necessary to replenish electrolytes when out in the heat. While Gatorade and Powerade can sometimes be the quickest and easiest ways to do so, many people may be concerned by the amount of sugar and artificial dye and flavors in these sports drinks. If you are concerned about commercial beverages, there are many homemade electrolyte drink recipes available online, as well as products that use less sugar and dye. Some of the more popular are Normalyte, Banana Bags, and my personal favorite Nuun electrolyte tablets which can be dropped into a bottle of water. Nuun tablets are also gluten free, vegan, non-GMO sourced, and soy and dairy free which makes them an excellent choice for those who have allergies as well. The product choice is yours, but be sure you don’t skip out on replenishing your electrolytes while out in the heat. Your body will thank you! Don’t let summertime get you down and sick. Do your best to get out and enjoy the weather, but be prepared to cool down and hydrate up!