There are many ways that I have learned to manage my disease over the years. Online resources have been hugely helpful. Back when I was on Facebook, belonging to a support group there led to some helpful suggestions.
This website has also been a fantastic place to gain insight and knowledge, even on topics like sex as a person with Mitochondrial disease. My Mito.org
Of course my mobility tools have been key. The unpredictability of this disorder can cause me a lot of anxiety. I don't know how long I'll be able to stand or walk on any given day. Keeping tools in the car makes that anxiety much less and sets me up for a successful outing or vacation.
The biggest way I manage my disease is with medication, supplements and rest. Electrolytes too. I used to try to push myself through a day without rest, only to find I'm then over-tired at night and have a lot of trouble sleeping. If I take the time to rest I have a much better evening and better quality sleep at night. Strange, I know.
My medication is pretty dialed in now. It has been for over a year. My migraine management is the only thing that changes occasionally.
Of course there are other things that "help." Like making meals simple. I typically just have a protein bar for breakfast. Even though my husband says that's not a breakfast, it's a snack. My favorite go-to dinner is a chopped salad kit (easier to eat than a normal salad) with faux buffalo chicken on top.
Keeping positive and managing my mood is important as well. Talking with my husband and other family or close friends is therapeutic. I don't keep things bottled up anymore. Managing my stress is also helpful.
Attending regular appointments to measure things like my breathing, heart and neurological symptoms is a must. I have from two to four appointments with my muscular neurologist a year. Four with my migraine neurologist (though I'm in the process of seeing a new person, so there's been a massive delay with my next appointment.) I see my primary care about three times a year for various things. Then usually some kind of specialist a few times in the year. A dermatologist or gastroenterologist. Urgent care is for things like I can't get my "bad ear" unplugged and it's starting to hurt, or a I have a UTI (happens about twice a year.)
Honestly just knowing what to expect and why something is happening to me has been incredibly helpful. Like the last time I went to the ER after my flu vaccination. Now I know if that happens again what it is, what to do and what to expect. I won't just be crying my eyes out scared to death.
Managing any disease is very complicated and time consuming. All consuming really. Now I need a rest.
