(This story shared by Dakota J. Rosenfelt)
“Today is the tomorrow you thought about yesterday. What have you done to make it the best it can be?” This is something I think about a lot. As an active 20-something in college, tomorrow is ALWAYS on my mind — things to do, places to be, people to talk to, etc. My situation, like many of yours, is unique. I was born with severe Hemophilia A and because of it, my life essentially revolves around the concept of taking care of myself today to ensure I have a healthy tomorrow.
Self-care, as it’s called, is important in everyone’s life regardless of whether they are living with a chronic condition or not, but when it comes to living with hemophilia, I think self-care is a necessity. Unfortunately, there is NO such thing as a “template” for the perfect self-care routine. What works for one person will more than likely not work for another. Self-care, to me, is best described as, “What will myself tomorrow thank myself today for?”
I look at self-care in three ways:
— Physical Self-Care
- It’s important to maintain a healthy-diet. The better you eat, the better you feel. I remember when I used to not eat so healthy and how I used to feel. When I say unhealthy, I mean REALLY unhealthy. A typical daily diet for me included fast food, a bag of chips, and sweets throughout the day. I had bad moods, a seemingly never-ending sluggish feeling, and didn’t sleep well at night. When I switched to a healthier diet, which for me is one low in carbs and sugar (I try to keep to less than 100g per day), I saw all of this turn around. I became more energetic, I slept better, and I actually wanted to get in better shape due to my newfound sense of motivation. Don’t get me wrong, the cravings for “bad” food still exist, I just try to remember moderation is key.
- It’s important to get SOME form of daily exercise. I try to get at least 30–45 minutes of cardio every day. Some people may say “I don’t have time to go to a gym,” but even just walking can help. Exercise has numerous health benefits and it’s important to fit it into your schedule, but remember to only do what you’re physically capable of. Pushing yourself too hard may have the opposite effect.
- SLEEP, REST, SLEEP, REST, SLEEP. Just as important as exercise is resting. There is a difference between sleep and rest, so make sure you figure out your own definition of each and get as much of each as appropriate.
— Mental Preparedness
- Make time for yourself on a daily basis, whether it be to do something you enjoy such as reading, writing, watching tv, going outdoors or being active. Failure to do so could leave you feeling stressed and unable to focus when it matters most. Building time in my day for things that give me mental clarity definitely helps me reduce stress.
- Spend a few minutes a day reflecting, whether it be prospective or retrospective. Personally, I spend a few minutes each evening in silence reflecting on the day: “What went well? What didn’t? What did I not get done I should have?” In the mornings I create a “To-Do” list to keep me organized and on-track to smash my goals for the day.
- Organization is key to feeling worry-free. For me, it helps keep the little things from getting to me. I keep my house clean and organized so I know where things are. I also maintain a calendar and schedule for everything, even things like eating.
— Medical Upkeep
- Maintain good joint health to the best of your ability. I suffer from arthritis as a complication of my hemophilia and I use a topical NSAID to help with breakthrough pain. However, I don’t let this minor setback prevent me from living life to the fullest.
- Medication adherence is key to preventing long-term complications. Make sure you follow what your physician has prescribed and keep in close contact with your treatment team about your care.
- Maintain good treatment records to share with your doctor or other healthcare providers so you can follow a regimen that fits your lifestyle. To do this, I created an app called HemoTool, which helps people in the bleeding disorders community better manage their condition, order medications and find treatment.
- Rotating injection sites (if possible) can help prevent or minimize scar-tissue which can grow and make it difficult to access veins. This is one of the major reasons I work out — so I have more vein options for treatment sites.
I’ve thought a lot about self-care — the physical, mental and medical aspects of it — and I continue to learn ways to improve, enhance and take responsibility for all these parts of my life that have a tremendous impact on my health and my outlook on life. If you’d like more information about eating right, staying fit and living a healthy life with hemophilia, Bayer’s GAME ON program is a great resource. You can learn more about Game On at www.livingwithhemophilia.com. It’s all about growing up, moving on and taking control of your life and hemophilia. And that’s really what self-care is all about.