For those coping with chronic neuroimmune disease
, everyday tasks can be much more difficult and exhausting. Not only do these diseases cause painful, irritating symptoms, but having to explain and excuse them can take an emotional toll. If you’re someone who is dealing with a chronic immune deficiency or disease, making sure that you’re prepared to deal with flare-ups and awkward situations is a critical part of living your life. While it’s not always convenient, taking little steps to prepare for flare ups can soothe your symptoms, social life, and any anxiety that comes with coping.
Building a Toolkit
Immune diseases can manifest themselves in a broad variety of ways, and symptoms look different for every person. If you’ve been living with a disease for a longer period of time, you’re probably aware of the triggers that can cause issues for you, and knowing is half the battle. Preventing and treating these symptoms takes time and energy, and sometimes you have to leave the house or put yourself in a non-ideal situation for work or emergencies.
One way to help make sure that you’re prepared for any eventuality is to make a tool kit to carry with you in a car or handbag so you can treat symptoms when they pop up. What you include is up to you and your specific needs, but consider including the following:
If you have a disease that causes skin dryness, chapped lips, angular cheilitis (irritation in the corners of the mouth), or dry eyes, pack some petroleum jelly to use on lips, and dry patches, or eyelashes to protect eyes from irritants.
You should also consider packing sun cream with at least SPF 30 because dry or damaged skin can be more susceptible to sun exposure and can make the symptoms even worse.If you have to spend prolonged amounts of time outside, slather it on, and keep some with you to reapply every few hours.
If you suffer from joint or muscle pain, make sure you carry cortisol cream and/or Tiger balm to rub into unexpected sore spots and soothe flare-ups so you don’t have to suffer through while trying to enjoy yourself.
If you experience fatigue, exhaustion, or blood sugar issues, carry a granola bar or bottle of apple juice for a quick sugar hit in case you feel lightheaded or dizzy.
In terms of medication, you should have at least a day’s worth of any medicines with you at all times in case of things like plane delays, car breakdowns, or other other unexpected hiccups in travel plans.
You should also carry a fever reducer like paracetamol in case you’re exposed to something that triggers a fever. Fever can make other symptoms worse, and for those with immune issues, they can be much more serious than they are for those without.
It’s also important to have a list of all the medications you take
, and their doses, frequencies, and generic and brand names just in case you’re incapacitated or disoriented and someone else needs to know how to help you.
It might also be worthwhile to prepare a card that lists your specific illness, and your frequent and potential symptoms. If you are allergic to certain medications or foods, or sensitive to light, sound, or other environmental factors like chemicals, make sure to include these on the card in case of emergency.
If your symptoms are severe, it can also be a good idea to include the name of your GP or specialist, your name and date of birth, and any medical ID numbers you may have.
Handling Tricky Conversations
One of the trickiest parts of coping with neuroimmune diseases and chronic symptoms is explaining your issues to people while trying not to feel dramatic or defensive. It’s almost impossible to explain the difficulties of coping with chronic illness to those who can’t understand them, so having a quick explanation ready can head off awkwardness before it arrives.
You should feel comfortable honestly expressing how you’re feeling without guilt, but seeing people react with shock, fear, or pity can be even more emotionally exhausting than your actual symptoms. Having a few prepared sentences with phrases like “I’m used to coping with this and know how to handle it so could you please help me with...” or “This is something I deal with daily and have gotten good at living with so right now I need you to...” can put other people at ease and prevent them from asking more prying questions, and help them help you if that’s what you need.
When dealing with neuroimmune diseases and all the associated symptoms, putting your care for yourself first can be tricky if you’re not prepared. Spending energy when you have it to prepare for the times you don’t can go miles towards helping you in a sticky situation. Take some time to set up a toolkit so you have the strategies and resources you need, when you need then.