Living with sickle cell disease doesn’t mean you give up on yourself! In fact, the opposite can be true: You can make the most of your life by embracing everything this chronic condition has to offer. As a person living with SCD, it’s important to remember that we are not our disease–we are active participants in our own health care. So, let’s get started!
Managing the pain
Pain management is essential for individuals living with sickle cell disease. Finding the right approach involves a collaborative effort with your doctor to determine the most effective combination of medication and lifestyle changes. While some people manage their pain with prescribed medications or self-medicate using over-the-counter remedies, it’s important to ensure that your chosen method doesn’t compromise your immune system or mask symptoms of underlying health issues.
Neglecting seemingly minor symptoms could lead to serious complications down the road, such as infections or anemia caused by inflammation due to HbS mutations. Seeking appropriate medical attention and following your doctor’s guidance is crucial for effective pain management and overall well-being.
Individuals with sickle cell disease should exercise caution when managing their pain. Seeking professional medical advice is essential to receive appropriate treatment and manage pain effectively. While self-medication or home remedies may offer temporary relief, they may not address the underlying cause of pain and could potentially mask symptoms of more significant health problems.
By consulting with your healthcare provider, you can ensure proper diagnosis, receive suitable medications and interventions, and minimize the risk of complications. Prioritizing your health and working closely with your doctor will help you live well with sickle cell disease while reducing the likelihood of severe complications such as strokes.
Managing your blood pressure
Sickle cell disease can lead to high blood pressure, which is a common complication of the disease that affects about 20% of patients with sickle cell anemia (SCA). High blood pressure can cause damage to organs and tissues and increase your risk of heart attack or stroke.
If you have SCA, it’s important to monitor your overall health by checking for signs such as fatigue, headaches or dizziness, chest pain (angina), shortness of breath or other symptoms that may indicate serious problems. You should also see a doctor regularly so they can check the condition of all major organs in your body — including kidneys — and make sure everything is working correctly.
Managing your weight
Being overweight is a serious health risk for people with sickle cell disease. A healthy weight is defined as a body mass index (BMI) of less than 25; being underweight is defined as a BMI of less than 18.5, and normal weight is defined as between 18 and 24. While many people who have healthy BMIs may still benefit from losing some weight, others may be able to maintain their current weight with few problems.
If you are overweight or obese, weight loss may help you prevent certain complications of sickle cell disease. For example, losing weight can help prevent gallbladder disease and improve your blood’s ability to carry oxygen. If you are underweight due to your disease, however, losing weight may make it harder for your body to fight infection.
Managing your vision and sleep
Sleep is important for many reasons. It helps your body heal, recover from illness, injury and stress.The National Institutes of Health recommends that adults get 7 to 9 hours of sleep every night. If you’re not getting enough sleep each night, it can make you feel tired or weak physically as well as mentally. When this happens over time, it can affect how well you function at school or work as well as making it more difficult for you to handle stressful situations in life (like dealing with sickle cell disease).To help manage symptoms related to sickle cell disease and keep your eyesight healthy:
- Take regular breaks during the day so that when it’s time for bedtime (or nap time), there won’t be any surprises when trying to get to sleep.
- Make sure that your bedroom is quiet and dark so you can relax and fall asleep easily.
- Don’t drink alcohol or caffeine before bedtime because these can keep you awake for hours after drinking them.
- Try to eat a healthy diet, get regular exercise and limit your time spent on computers or watching television at night.
Managing your moods
Managing your mood is an important aspect of living well with sickle cell disease. Chronic pain, frequent hospital visits, and the challenges associated with the condition can take a toll on your emotional well-being. However, there are strategies you can implement to support your mental health and maintain a positive outlook.
Building a strong support network is crucial.
Surround yourself with understanding family members, friends, and healthcare professionals who can provide emotional support and lend a listening ear. Joining support groups or connecting with others who have sickle cell disease can also be beneficial, as it allows you to share experiences, gain insights, and find comfort in knowing you’re not alone.
Practicing self-care is essential.
Engage in activities that bring you joy and help reduce stress levels, such as hobbies, exercise, meditation, or creative outlets. Taking care of your physical health through a balanced diet and regular exercise can also have a positive impact on your mood. Don’t hesitate to seek professional help if you find yourself struggling with persistent feelings of sadness, anxiety, or depression. Mental health professionals can provide specialized guidance and support tailored to your unique needs, helping you navigate the emotional challenges of living with sickle cell disease.
Managing your stress.
Stress is a normal part of life. It can be managed, and it can also lead to illness if you don’t manage it well.
There are several ways to reduce your stress:
- Exercise regularly: Exercise has been shown to reduce stress, improve mood, and help with memory and thinking skills. The more you move your body, the better!
- Get enough sleep every night (at least 7 hours): Your body needs time for restorative growth during sleep—and without this restorative process going on in your brain as well as other organs throughout your body (like muscles), there will be less energy available for healing when injuries occur or illnesses strike later down the road!
Taking care of yourself emotionally
- Listen to your body.
- Be kind to yourself.
- Be patient with yourself.
- Be gentle with yourself, even when you need to yell at someone else or be angry at them or something else! You can do this! Just breathe and be gentle with yourself today (and every day). You deserve it!
Living with sickle cell disease doesn’t mean you give up on yourself!
Living with sickle cell disease doesn’t mean you give up on yourself! It’s true that there are many challenges and obstacles, but it’s also true that you can do so much more than anyone else. You can be healthy, happy and strong. You can be brave in the face of adversity. You can be positive about your life despite its limitations and setbacks—and even more than that: you’ll find yourself becoming resilient over time as well!
You will have days when everything seems to go wrong at once; but if you stay focused on what matters most in your life (your family & friends), then those difficult times will pass quickly enough.
I hope these tips will help you manage your condition, feel better and enjoy life more. And remember : don’t be afraid to ask for help!