The Holiday Blues: Living With a Chronic Illness Like NMO
We've gotten past Thanksgiving and Christmas is just right around the corner. This is a time to gather with family and friends, enjoy the moment, and embrace the fun times that come with celebrating a holiday. These moments can feel a little different to someone who is living with a chronic illness.
NMO and the holidays: filled with anxiety
I can only speak about my experience, but the holidays are not exactly the most cheerful time. In fact, they're usually filled with anxiety and frustration. The frustration typically begins with the planning and is closely followed by the preparation. By the time friends and family gather, I am full of anxiety. This is all not to mention that we are in the middle of a pandemic, so here comes the paranoia! As much as I want to enjoy these moments, my NMO plays a huge part in my experience.
So much has changed since my diagnosis
Looking back just a year ago before my last NMO attack, I was the busiest, most productive person anyone would ever meet. Planning and preparing for the holidays was no exception. Everything would be planned out perfectly. I would always be especially excited around Thanksgiving and Christmas. This was the time that I would get to see family members that I typically wouldn't see any other time of the year.
I used to be the life of the party
I can remember one instance where I traveled to Memphis, Tennessee to see my family and attend a birthday party around Memorial Day Weekend. I was the highlight of the night! I used to dance back in the day and I'm pretty sure I shut it down! Now, that has changed. Since my last attack, I find myself wanting to be alone and not wanting to engage with friends or family during the holidays. While they are off having fun, eating and drinking whatever they want and dancing, having a good ole time, I am sitting in my wheelchair unable to fully enjoy the moment, as I did in the past. It's hard to sit and watch others have fun without repercussions while you try your hardest to contain yourself and play by the rules because you know what will happen if you defy them. Sometimes, I think to myself, "one drink won't hurt" or "I'll just eat this cake just this once", but the PTSD caused by a flare races through my mind.
I'm not obligated and neither are you
I have to remind myself often that I am not obligated by any means to put aside my chronic illness for the sake of others. I live with NMO and NMO is a part of me. Whether your friends or family understand it or not, this is the reality. Holidays come and go and I definitely try my best to cherish each and every moment. Unfortunately, there are going to be times that my NMO shows up and takes over. At that point, I may have to sit the event out and take care of myself, and that's ok. If it means putting my mental health is at stake, I am definitely out.
Do what's best for you
The truth is, most often, your loved ones will in fact understand if you are needing to decline an event or gathering. Don't feel bad! Just try your best and do what you can within your limitations. When I find myself skipping out on a family function during the holidays, I try to make up that time when I am feeling better. Those moments are appreciated. Just remember, a holiday is just 1 out of 365 days on the calendar. Make every day count!
How are the holidays effecting you while living with NMO?
Were you misdiagnosed, prior to being diagnosed with NMOSD?