How I Manage My NMO Without A Caregiver
Last updated: March 2023
The life of someone with NMO without professional support is hard. Dealing with any chronic illness is hard.
Not only is it hard on the patient, but it's also just as difficult on the family.
The best thing that you can have when dealing with a serious chronic illness is a good support system around you. There are so many unfortunate circumstances where people are dealing with their disease on their own. They don't have the luxury of having a team of people around them to help with every situation. There is no comfort. Since being diagnosed in 2020, it has been extremely difficult to live with NMO without professional support. This is my experience.
Living with NMO without a caregiver
If I had to sum it up in one word? "Terrible".
I can't say that I'm surprised. I've always been an independent person and the one who has kept things running smoothly with the family. It's very clear that I'm not available to be that person anymore. NMO has taken a toll on not only my physical health. My mental health has suffered more than I could ever imagine.
Somehow through it all, I manage it. Most of the time, I don't know how. What I do know is that it must be done. I do find that being the "manager" of the house and designating duties has helped keep things running smoothly.
I do what I can until I can't anymore.
I take breaks as much as possible
At that point, I take a break - which is a lot these days (lol). I don't care who doesn't like it. It's happening! At which point, if it doesn't get done. It's not the end of the world! I will not worry myself to death about it. It'll get done, and it'll all be OK in the end.
When you have a chronic illness, I think it's essential to have a designated caregiver who is there only for you and knows how to handle you. The experience is even better when your friends and family understand your disease. When they do the best they can to make your life easier. The feeling is unexplainable.
However, if you're in a situation where everyone is trying to do everything simultaneously, it gets confusing. You start to notice your family "running over each other." You also begin to see too much of this, and they will start to get frustrated. They could even find themselves dissociating from the situation.
Caregiving for someone with NMO is a huge task
Let's be honest. This isn't an easy task. Being a caregiver is a full-time job that honestly, most people are not cut out for. Going from a normal life to caring for a loved one is a lot to handle. Especially if that loved one has a rare disease which you and most medical professionals know nothing about. At some point, this might even put a strain on the relationship.
This is why it's best to have a designated caregiver. Whether that be a friend, a family member, or a medical professional, you must ensure that person has your best interest at heart and is making sure you are living the best quality of life you can.
Has NMO impacted your ability to keep a job?