Originally this post was going to be called “Living a double life,” but then I realized that I don’t just lead two lives; I live multiple lives. What I mean by this is that my life, when going through a flare, is totally different than when my Psoriatic Arthritis is in remission, and my remission days are nothing like my average pain days. The things that I can or can’t do differ between each one, along with how I react to situations. Many of us that suffer from chronic diseases feel like we are living multiple lives; there is the life people see when we leave our homes and the life no one but those closest to us sees when we are unable to leave our beds. It is no wonder that people have such a hard time comprehending what it is like to live with our conditions as they are usually only seeing one of our lives. The three lives that I lead are as follows: Flaring, Average, and Remission.
Remission: This is the life that most people see. When my Psoriatic Arthritis is in remission, my bones hurt less, and my spine allows me to sit, drive, stand, and walk for more than a few minutes. When in remission, as long as my other conditions aren’t flaring, I only have to medicate at bedtime, as my daytime pain is tolerable as long as I am careful. It is also more accessible during this time to sense when I am overdoing something and recognize when I need to rest. When I am in remission, I am able to cook dinner for my family almost every night. I am able to help out with housework. I am able to drive myself to the store and shop independently. While in remission, I possess a positive attitude. During this time, I will volunteer more and attend functions that I would generally pass on when living my other two lives. During this life, I have had little time for television. I am a busy gal who acknowledges that this life could end at any moment, and I want to do as much as I possibly can before it ends. And that is the downside of this life. This life tends to make me a bit manic. Never knowing how long it will last or when it will return frustrates me, and that is why I use that time to take care of household projects that most people would handle over the course of a year. Some years I only experience one remission, and sometimes, I am blessed with multiple ones. The shortest amount of time that this life has lasted is approximately one week, and the longest is three months. During this life, I have been very social, online and in person. I not only have the energy to do more, but I also have the mental strength to be there for my friends and family. Only during this life am I able to handle a weekly phone call from more than one person. During this life, I am up for going out for coffee and, of course, spending as much time at Disneyland as possible. For the most part, during this life, I get dressed every day and do my hair and make-up.
Average: My average life is probably the most confusing to others. During this life, my pain fluctuates between lower than average and above average. Some days I am able to get out of the house on my own, and on others, I need assistance. Some of these days, I am able to enjoy a phone call and still have the mental and physical energy to draw some memes, write a blog post or work on my latest book. There’s a 50/50 chance that I will be exhausted from a morning phone call. On the days that a mere conversation exhausts me, I spend my day catching up on my favorite shows on Hulu or Netflix. Often during this life, I will cook one or two large meals that I will split up and have my family eat as leftovers. Most of my time is spent either sitting and working from bed or in my recliner, as that is where I am most comfortable. During my average life, I am often able to enjoy three significant outings like Disneyland or a conference within a month. Some of the time, I am fine running errands by myself, and other times, I have to have someone else drive me. Some days I can tolerate my pain until the evening; on others, I begin medicating before getting up to pour my first cup of coffee. Unlike my remission life, in which I tend to be hyper and manic, my average days are fairly mellow. I rarely feel rushed or like I am facing a deadline. In this life, I pick and choose what I commit myself to do. I only schedule what I feel is most important and keep the days prior and following free to help ensure that I will be able to keep my commitment. On average, I get dressed, brush my hair, and paint my face 50% of the time. While each day varies, I don’t experience the sadness of having a bad day as I do when my remission life ends because with this life, I will most likely have a decent day within a day or two. I am calm and not easily rattled during this life. When faced with a problem, I am able to calmly look at it from all directions and take my time in making decisions. For the most part, I am pretty happy in this life. Because this is the life I lead the most, it is familiar, and I have learned to go with its flow. Because I have days that I can function outside of my house, whether on my own or with assistance, people assume that I am functioning at that level all the time. They do not understand that they are only seeing me at my best during this period.
Flare: I won’t lie; I do not like this life. There is nothing enjoyable about not having the strength to lift my head from my pillow or trying to struggle staying upright as I walk to the bathroom or kitchen. I hate not having the mental strength to hold a conversation. I despise the pain that consumes my body. This is the life that only those who live with me or spend a lot of time with me will ever witness. This is the life in which most of my time is spent lying in bed, falling in and out of sleep. I rarely get dressed and only brush my hair when it doesn’t hurt to do so. On rare occasions, usually at the beginning of a flare, I will leave the house with assistance and medicate. The downside to pushing myself at this stage is while I appear to be social and doing okay, I am not. My pain level is so high that no amount of pain medication can keep it from consuming my mind and body. Most are fooled as I am often able to blurt out a few sentences that make me appear to be all together. Unfortunately, my pain is so consuming that it overrides the moment, and I rarely have any recollection of it, as was the case last Christmas Eve. Nothing has been accomplished during my flare life. I may or may not have the mental capacity to be able to watch my favorite TV shows. I may or may not be able to write a paragraph. I often take hours or days to respond to a text and avoid answering my phone. Besides all of this, the most frustrating part of my flare life is that I never know when it will take over. Because I have multiple chronic conditions, one may flare while another is in remission. A flare can last for a few days or months, and Lord help me when I experience a cluster flare. Unlike my other two lives in which I can recall everything I did, I have to play detective when my flare life ends to find out what I did, who I talked to, and what I said. While life is difficult during my other two lives, they do not rob me of time. They do not steal my memories. Most will never see this life unless someone comes to my door unannounced. Even if someone does just show up, they may still not see it as if I am home alone, I most likely will not answer the door. One reason is because of the pain I experience just getting to the front door, and the other reason is when people see me in this state, they start flinging questions asking how they can help. The last thing I am able to do while living this life is to clearly think of how each person could help me. It is during this life that I cherish and needs the people in my life who just take it upon themselves to do something to help. It could be bringing dinner over for my family or coming by to say, “Hey, I am here to help you; I am going to clean your kitchen while you go back to bed.” The chances of my husband or daughter sharing my current state when someone drops by are a rarity. I don’t believe it is because they don’t wish to share; instead, like me, they have come to accept that it is just a part of life. Not only that, but most people don’t like admitting that they need help. I know I don’t, but I imagine it is even harder to admit that you are struggling when you are able-bodied. It is during my flare life that I feel most alone, even when there are people in my home. I struggle to get my thoughts from my brain out of my mouth, so most remain unspoken. My attitude sucks compared to my other lives. Frustration and sadness consume me. I may or may not overreact to simple situations. It depends on whether I was able to process what really happened or was said. I have a short fuse and no tolerance for stupidity in this life.
Overall I prefer my average life. It is the one that I not only experience the most, but it is also the one that I have learned to let go of expectations and to go with the flow. While I love the lower pain level of my remission life, I don’t like living like there is no tomorrow.
I have yet to learn how to mesh my three lives into one, and I won’t be holding my breath waiting. Because how do you plan and schedule chores, work, or activities around three distinctly different lives that don’t follow any schedule? So until then, I will have to keep on living each life to the best of my ability. Do you feel like you are living multiple lives because of your conditions?
Wishing you a day filled with many smiles and gentle hugs,
The Disabled Diva