Hi all, I’m still working through the last few months of struggle and learning to cope with this increase in asthma severity. This got me thinking about what I would go back and tell myself weeks or months ago. I’ll put my own thoughts below, but was wondering, if you could go back and tell yourself words of wisdom or advice for dealing with asthma and chronic disease and life, what would you say?
– ask for a referral to pulmonology early. Referrals can take months and seeing an expert can stop a spiral early and get you the expert care you need.
– don’t be ashamed or embarrassed about your illness. Don’t apologize to anyone for needing time off to care for yourself. There’s nothing you did to deserve this, nor is it a time to self blame for your illness spiraling out of control.
– exercise your right to fmla leave and talk with your doctor openly about a reasonable time frame both for treatment and recovery. You aren’t helping anyone by coming back too early and reinjuring yourself.
– dealing with severe asthma and illness can be overwhelming for others. Expect to lose touch with some friends but grow closer to others.
– be patient with yourself. You will go through major ups and downs both mentally and physically as you learn to tune into your body, adjust to treatments and begin the recovery process. Blue days are ok. When they happen, reach out to family, friends or the forum community.
– communication is key. Your team of doctors can’t help you if you don’t let them know what is and isn’t working. Ask questions, report side effects; but don’t stay silent.
– keep a diary of symptoms and triggers And questions. There is literally too much to keep in your head. It will amaze you the insights that you can find when you look closely at trends (ie symptoms worse at night, after eating, menses).
– be organized and aggressive about medication management. Set alarms, use pill boxes.
– educate yourself as much as you can. Take the online asthma care and severe asthma care classes. It will help you communicate with your team, but more importantly, put you in charge of your care.
– remember it will get better. Whatever pain, discomfort or fear you have, keep walking. Better days are coming. Cling to hope. Remember, you are more than a disease. You may have asthma, but it doesn’t define you.
– make yourself priority #1. When you are seriously ill, it is not selfishness to pull back and focus all of your energy on doing what it takes to get better (eating, sleeping, resting, avoiding stress, prioritizing medical appointments, pulling back on commitments, etc).