When I opened my email inbox this morning I had a new article from Psychology Today, an online magazine that I subscribe to. The title of the article was “Should I or Shouldn’t I?” The Dilemmas of Chronic Illness, written by Toni Bernhard, a fellow victim of a chronic disease. The entire article was like an insight into my brain, basically discussing the day to day difficulty we chronic illness patients go through trying to keep up with the rest of the world. I’ve personally dealt with these questions in my own l life several times, so I’ve taken the same questions Toni addressed personally in her article, and have answered them with my own opinions/feelings here. Perhaps it will provide insight into my life and actions that friends and family have wondered about..
Do I accept an invitation from a friend to get together or do I refuse it?
For me, this really depends on how far out the invite was received. If it’s weeks in advance I tend to tell the person that I’m interested in spending time with them, however I don’t know how I’ll feel that day so let’s make the plan tentative. I don’t want to flat out refuse an invite in case that person writes me off, and I don’t receive further invites. But at the same time, I hate being flaky. I would prefer a plan be tentative so if I’m not feeling well it was already suggested that I may not be able to attend. To be clear, I love spending time with family and friends, I just don’t always know how I’m going to feel.
Do I tell family and friends how I’m faring with my health or do I keep it to myself?
Sometimes, I feel if I talk about myself I’m worried they are tired of hearing it. My chronic disease is is a large part of my life, so the reality is if someone asks me how I’m doing, they are asking about my health. I worry about sounding like a broken record, but if I don’t talk about it, I’m isolating myself from others. My pain therapist often stresses how important it is to talk with friends and family about what I’m going through so I don’t risk getting depressed or bottling things in. Though, even with his advice, I find myself couching it a lot. Not telling people the true extent of what’s going on because I don’t want to sound like a complainer.
Do I try to look my best when I’m around other people or do I let my looks reflect how I’m really feeling?
If I try to look my best, I’m concerned that people will misinterpret the state of my health. I’ve always been really into makeup and fashions, and since becoming sick I don’t have the opportunity to dress up much anymore. So on days where I feel even remotely energized enough to make the effort, I tend to want to put makeup and a cute outfit on. But is this sending a message that I feel totally fine? Because there is never a day or even an hour where I’m not in pain, and or feeling the affects of my disease.
But if I let my looks reflect how I’m feeling, it usually brings my spirits down. I hate leaving the comfort of my home feeling dowdy and unkempt. Sure, I look exactly how I feel, but that means I look like crap. It brings my morale down and opens me up to more unwanted criticism, such as “Wow, you don’t look so good”, or “How come you don’t put some makeup on to hide those dark circles?” Vicious cycle.
If a special opportunity arises, do I go beyond what I know my body can comfortably handle or do I play it safe?
If I participate, I could wind up stressing my body or becoming too exhausted, landing me in bed for days. If I don’t participate, I could be missing out on fun or uplifting life experiences that can keep my morale up.
I was recently invited to a fashion show style event, that some friends were running. It was planned weeks in advance and I was a tentative guest, not knowing how I would feel on the night in question, so I didn’t say yes definitively. I knew the event would be a lot of fun, many of my friends were going, and there was a lot of excitement surrounding it. However, I also knew the event would be a high energy affair, and be a late night. Even throughout the morning of the day of I was on the fence on whether I should go, but leaning towards yes, as I had been feeling quite isolated. Unfortunately that day I had a lot of doctors appointments as well as clinical testing, and I was exhausted by late afternoon. I knew I could probably take a nap and still really and go to the event if I really wanted to. But knowing me, and knowing my body, it would have been a mistake. One that I may have had to pay for days on end. So I didn’t go. Was I said that I missed a fabulous opportunity to see a great show and socialize with friends I hadn’t seen in awhile? Of course! But health comes first, and I have to trust my instincts.
Do I try a new treatment someone is urging on me or do I take a pass?
I’ve talked several times about how often people urge me to try new diet schemes or anti-inflammatory treatments that they swear worked for their best friends hairdresser’s accountant and could for me too. It is very frustrating to have things like that constantly pushed in my face, especially when the person in question isn’t sick themselves or haven’t done the so-called miracle cure diet.
So usually in this case I take everything with a grain of salt. Sometimes I’ll do research of my own, looking through various websites and articles and reviews to see if these treatments really do work. However, I have to constantly remind these people who mean well that just because a treatment or diet plan worked for one person, it doesn’t mean it works for everyone. I mean if that were the case, our country wouldn’t have an obesity epidemic, because everyone would know the one and only diet that works.
I appreciate the sentiment and wanting to help me with my health, and my chronic pain, and my weight gain. But I’d prefer if everyone would just let my doctors do their jobs, and keep the “helpful suggestions” to themselves.
Do I pursue a new interest even though it exacerbates my symptoms or do I stick to my old routine?
If I pursue it I could be opening myself up to new interests and entertainments that can enrich my life. It could boost my morale, lower my depression, and have an overall positive impact on my mental health. However, depending on what it is, I could be causing myself more physical pain and exhaustion in the long run. Which in turn means days of bed rest where I’m exacerbating my symptoms, prolonging the pain and denying myself fresh air and movement.
If I choose not to pursue it then I could be cutting myself off from a healthy lifestyle change, that could be good for me long term. I’d also be passing up the chance to focus on something other than my health for a change, which in turn raises morale. It’s a slippery slope.
A great example of this is my adult coloring. Last year I was introduced to the now very popular phenomena of adult coloring. They now make hundreds of beautiful coloring books for adults with intricate pages of all sorts of designs. I lean towards the paisley and mandala varieties. I started out slowly, with just one book and a small box of colored pencils. But I loved it! And started doing it more and more, obtaining more books, a larger pencil set, and electric sharpener. I now have a coloring box that sits next to my couch, filled with 5 books of different designs, two boxes filled with a variety of colors, and two binders filled with completed pages. The coloring, while a great distraction from my disease, also calms me and is very therapeutic.
However, there is a downside. I have a chronic pain disease that mainly affects my hands and feet. And after an hour or so, my hands get too cramped to color anymore. But I love my hobby so much that sometimes I ignore the pain and discomfort and push through until I literally can’t move my fingers anymore, and blisters have formed at my knuckles. Every time I do this I know I should stop and just color another day. But my ocd pushes me to finish the page, and it’s so nice to do something so enjoyable.
I guess it’s different for everyone. But I’ll admit that I do cause some of the pain I contend with myself, just so that I may enjoy some creature comforts.
I understand that everyone deals with their disease differently, some things being harder than others, and it can be a challenge. Life is a challenge. I know that I just have to take one day at a time, step by step, and that I’ll find my footing and my path eventually.
If you’d like to help support me in my path and journey please visit my website here. Thank you for reading and sharing me experiences.