Last week, which was also the four year anniversary of the onset of CFS in my life, I had planned on writing about the ways chronic illness has changed my life, but honestly emotionally it was too painful to even go there. You know those things you want to write about but you know the emotional toil is best left untouched? Fast forward a week, and I’ve processed through it a bit and thought I’d touch on my experiences. I could go on and on with every little detail, but you’d get bored and it’s still a little touchy, so I’m going to skim the top three ways chronic illness has impacted my life, namely with regard to strength, people, and independence.
- Strength – Truthfully, I’ve always been strong willed, stubborn maybe
definitely, and definitely not a quitter. I’ve stood loyal to many things/people in my life long after many others would have walked away. High five to all you co-dependents out there.🙋🏻♀️ Did giving so much eventually lead to illness? I may never know, but I was diagnosed with fibromyalgia in 2004 and for 10 years I kept plowing through, not wanting to let myself or anyone around me down. I never let it stop me, but unfortunately CFS didn’t allow me to do that, it literally stopped me in my tracks. The strength I wore like a suit of armor to push through life didn’t disappear when I got sick, but it had to be reallocated. With chronic illness you don’t necessarily lose who you were, you just become someone new with those same character traits, and a few more. I’m still strong, although outwardly I appear weak. My strength no longer lies in my physical abilities to conquer life as a parent, an employee and significant other, it’s my mental abilities to do things like make tea on flare days, make it to doctor’s appointments, and shower even when my energy is completely amiss. I guess you could say my strengths are now primarily invisible, but they are still very present, in fact I’m much stronger today than I’ve ever been. I’m wondering if anyone else feels stronger than ever despite actually being physically weaker than possibly ever?
- Good people – This has been one of the top-five challenging changes. You really get to know people when you have nothing to give them. I don’t want to go all negative here, I’d rather not feed that negativity. In fact, I’d rather give credit where it’s due. To those people in my life who have chosen to be there, to listen to “all the latest research” over and over, who have asked how I am, who have made an effort when I’ve not been able to make any effort at all…they are my favorites. I respect and admire them because when they could have walked away, they didn’t. Good people are seemingly few and far between and I’m very thankful to have a handful of them in my life. I know there are a myriad of reasons why people fall away, I’m not saying everyone who does is bad, life happens…I get that. I’m just saying that the ones who have chosen to stick around are totally my favorites.😊😘
- Independence – This has been the hardest change outside of my failing health. I’m ferociously independent. Having been raised as an only child with very hands-off parents I’ve been doing things by myself almost as far back as I can remember. And now…every little detail in my life feels dependent on someone else. I can’t go for a drive, I can’t go grocery shopping, I can’t go visit a friend, I can’t get to an appointment alone, I can’t walk my dog, the list goes on and on. Where I live there’s no bus or train within walking distance. There are Uber’s but I have no income. Everything, and I do mean everything I need to buy comes out of someone else’s pocket. It’s like I’m a stranger in a strange land, foreign to everything I knew and I’ve had to learn how to adapt, how to survive. Honestly, I hate it. I’m not thankful, I go through waves of feeling absolutely trapped, in my body, in my life. But then I remind myself to get back in the moment, in the here and now, paint, listen to music, absorb yourself in something, be strong and keep going because this is as good as it gets right now. It takes more strength than you can imagine to look in the mirror and know that you are more alone than ever, yet dependent and frail, but you still have to remain so, so strong. It leads so many chronic illness sufferers down the darkest of paths and my heart just pours out for those amongst us who are really struggling. I’m always here if you need to chat.🌸
In a nutshell, and without ‘poking the bear’ (delving up stuff too upsetting) those are a few things that come to mind as having changed over the past four years. Wondering if others feel similarly? We all experience illness differently, we are all at different stages in our lives. I would imagine our challenges, and changes are based on where we were when each of us got sick. At the onset of my illness I was told (at the first doctor’s appointment in the first week I was sick) I probably had been overworking myself and to ‘relax, rest, and take some time to do what I love’. So, for my birthday that year, which is tomorrow, 8/8, we went out of town to the mountains because I love the country. I didn’t know I had CFS, if I had I wouldn’t have gone. I didn’t feel up to it but I was desperate to get better and based on what the doctor has said I thought the fresh air might do me some good. The first picture below was from that trip. I hadn’t looked at it in years until a few days ago and when I look at it now I see things I didn’t see before. I’m leaning on the tree, which is unlike me, and I’m forcing a smile. I was weak and sick, way sicker than I knew, but I thought I’d bounce back like I always did. My strength was put to the test on that trip as I had a terribly scary episode, which included uncontrollable shaking from a sleep state. Nothing I’d ever experienced. It was then I realized I was likely sicker than the doctor had speculated. The second picture, which if you’ve been following along, you’ve seen before, was just one month prior on the 4th of July. We were awaiting the fireworks show, which they shoot off from the fair in the background. It’s one of my absolute favorite times of year. I felt on top of the world in that photo and I looked healthier. I don’t know maybe only I can see it, but I see a definite difference. Most of us probably have a general idea of when we fell ill, what we were doing, and so many of us regret not having rested more to recover instead of pushing through and making ourselves sicker. Do you remember your onset, was it sudden or gradual? If you feel like sharing, how has chronic illness changed your life?
Not the most uplifting of posts, but life is filled with ups and downs, for all of us. As my mom used to say, “The absolute best thing about feelings is that they are always changing.” Thank you for stopping in for a read. Hoping today finds you as well as possible!🌸 A few more of my little watercolors.