After a year of living with a chronic illness, I’ve learned you can never fully predict your day, the challenges that lie ahead and how the loss of control that comes with all of that can be very frustrating (especially for us type A personalities!). However, I have also learned there is a lot you can do to place the odds of a good or better day in your favor.
From peace of mind to symptom minimization, the list that lies ahead aims to provide some tips and strategies that I hope will help you minimize your symptoms, give you back some of that control in your life that is missing and most of all provide some hope that it is possible to make each day better, even if it’s in the littlest of ways. My motto is, any help helps! I hope you find this list, in whole or in part, helpful!
1. Fix what you can. So many symptoms don’t seem fixable. But don’t give up so quickly on this idea! For example, my condition gave me constant back pain. I finally saw a physical therapist and he worked wonders for reducing the pain to a near zero level of pain. This “fix” not only helped my back pain but I’m sleeping better as a result now too.
Perhaps most importantly, he doesn’t hide in the shadows of his disease. Since being diagnosed with Parkinson’s disease he’s continued to work a job that very much puts him in the public spotlight. By going public he reminds us all that there is no shame in our illness, the symptoms and how they play out in real life.
He has also leveraged his fame and public image to advocate and raise money for his condition, creating greater awareness and generating increased money for research for a cure in hopes that someday less people (or no one!) will ever have to struggle with this disease again.
So many lessons can be learned from the bravery of Michael J. Fox. His refusal to let his disease control and define him definitely is one of the hardest lessons to learn. His strength and character that pushes him to fight each day and live in hope for a better day and ideally a cure is inspiring. He’s also taught us not be ashamed of the challenges life has thrown our way, to be so confident in who we are and what our life has become that we don’t use our precious little energy to hide it from the world. He’s done all this while fighting the battle of his life, literally.
While Michael J. Fox is just one of many celebrities that have bravely and generously shared their personal lives with us, so many of us would embrace the opportunity to see even more celebrities, particularly those with “invisible” illnesses like myalgic encephalomyelitis or fibromyalgia, take the unwavering, brave steps Michael J. Fox has taken and share their experiences to raise awareness and help fight for a cure. If the world had a more accurate picture of what we go through each day, it would go a long way to helping those of us who live with such conditions daily, are questioned about the validity of them and denied rights because of them.
2. Accept what you can no longer do as best you can. Sometimes it requires daily focus – or rather, it requires you to refocus on simply doing the best you can that day. Your abilities will vary day to day but acceptance rather than anger and frustration will serve you so much better, as hard as that is some days.
3. Stubbornness doesn’t work. I am adamant that my limitations won’t affect the core aspects of my life. However, I can be as adamant as I want and the reality is I am not being realistic. The reality is it does – I can’t do what I want, when I want – or even at all sometimes. Back we go to acceptance… or at least working toward it.
4. Refusing to quit does work. I will continue to fight for more each day I can because while I’m still not achieving all I want, that refusal to quit attitude is definitely helping me achieve more than if I didn’t have it.
5. Do not be so hard on yourself. We have chronic illnesses. We can’t keep mentally punishing ourselves for our limitations. For me, I always try to do my best at everything I do. Now though, for some specific things, what I know as my best no longer is possible. I have to accept my new best and let go of my old best. And that is so, so hard! It can be defeating and sad – both feelings that are hard to deal with when you are fighting so hard each and every day to make that day better, more productive or less painful. The best we can do is to try to take these self-defeating thoughts off our plate. Our plate is already full enough. Accept and move on as much as possible in the moment.
6. When you have no energy the littlest of missteps can wreak havoc on your emotions. I can’t tell you how many times yet another spill has almost brought me to tears. Just getting some water can seem challenging enough some days. Then to have to clean up a mess. Yikes! Something as simple as a sippy cup with a tight cap from the dollar store can save you from cleaning up endless spills caused by a new lack of coordination. Test out some solutions to these types of frustrating issues and you can avoid many such emotional moments.
7. Quietness is key! When you are trying to sleep, and finally get to sleep, you need to be able to stay asleep. Do whatever you can to minimize noises that will wake you. Ear plugs, noise-reducing shades, a fan, a white noise machine… Do whatever it takes to minimize the chance of a disruption to that precious sleep time.
8. A lavender spa mister works like magic. While I love scented candles, I’ve never been a true believer that these scents hold any “power” other than being pleasant. However, I do now. The days my spa mister is freshly supplied with lavender drops result in my best nights of sleep.
9. As tempting as it is, when you finally do venture out for some time with friends, don’t forget to keep your schedule or you may pay some harsh consequences. I used to think, heck, I’m having fun, I rarely get to, so I stay out a bit longer. For most of us with chronic illnesses though, you know this is likely a mistake that could cost you two or so days in bed or worse.
10. Take it one day at a time. Lying on your couch all day can feel like an eternity. Try to remember that even though these moments may be painful, you shouldn’t let them consume you. Don’t “what if…” about what this means for tomorrow, the weekend or even your entire lifetime. It’s just a moment… don’t overindulge in the value of that moment. Better moments are always ahead.
Anyone else have any tips? Please share! As I noted above, any help helps when you have a chronic condition!
Thinkstock photo via Dreya Novak.