Managing a chronic illness can be challenging. Between the pain, the brain fog, and the fatigue, getting a handle on it can be overwhelming and exhausting. I have to count my spoons throughout the day to assure that I have the energy to get things done. Since every day is different, meaning that different parts of my body can hurt at any time, I thought I’d share five tips I use on the daily to help mitigate my sickle cell symptoms.
1. Drink plenty of water
Sounds simple right? I love a good glass of cold water but drinking the recommended 64 oz a day was a struggle. As I don’t drink soda or juice that often, I have to drink water if I want to stay hydrated. I discovered liquid drink mixes at Walmart and they saved the day. Now I trick my taste buds into thinking I’m drinking juice all the time. But a word of warning: read the ingredients list before buying. Some drink mixes, especially powdered ones, can include additives or artificial sweeteners, such as aspartame or maltodrextrin, that you may be sensitive to, just as I am. My favorite drink mix is Walmart brand Great Value Tropical Pineapple Mango drink enhancer. I keep a few bottles on hand every month to go along with one of my 40 oz tumblers that I refill throughout the day. Staying hydrated can help to reduce swelling and tightness in the joints and hands, lead to clearer skin, and even sometimes keep you full, which may have the added benefit of helping you better manage your diet. For me, the biggest downside is the amount of times I need to go to the bathroom lol.
2. You are what you eat
Read labels. Read labels. Read labels. Before being diagnosed with Sickle Cell Anemia, I used the process of elimination where my mom and I slowly introduced different foods into my diet to see what I reacted to and what I didn’t. Allergy tests at doctors’ offices were negative but I was still feeling sluggish, itchy, and uncomfortable after eating. My mom and I started with leafy greens and veggies, then introduced meats and seasonings, beverages, and so on. We quickly discovered I was sensitive to potato starch, wheat, dairy, white rice, peppers, eggplant, tomato, and gluten. 10 years ago, being sensitive to all those things was devastating to me. I love food, especially sandwiches. For me, gluten and dairy free foods were disgusting. Not all gluten and dairy free foods were made equal. Read the labels! But those foods have come a long way since then. Now I can have a cheat day once or twice a week where I’ll have fast food or snacks with only mild irritation. Gluten free double stuffed Oreos for the win, am I right? Certain foods I won’t have at all like potato starch and white rice because they immediately cause pain and discomfort in my joints. They say you are what you eat, so check the labels, keep a food diary to help keep track of any reactions, and speak with a doctor or dietitian to see what works best for you.
3. Elevate your limbs
I have an adjustable bed where the head and leg portions lift up. I bought this bed specifically so I could elevate my legs, which helps to reduce the swelling and pain in my ankles and feet. I also cannot sleep flat anymore as I suffer from chronic chest pain, so my head is elevated. The angle keeps pressure, and gravity, off my chest and allows me to breathe easier. If you don’t have an adjustable bed, extra firm pillows can work as well.
4. Vitamins and minerals
Similar to tips 1 and 2, what you put in your body can affect how strong your symptoms are. I take fish oil and biotin for my psoriasis, but they have the added benefit of supporting my heart health as well as nail and skin health. My hematologist had me take ferrous sulfate tablets and probiotics and stick to a Mediterranean diet in the past, which has helped keep my skin clearer, promoted good gut health, and reduced the swelling and pain in my joints. Speak with your doctor about taking the appropriate vitamins and minerals to help mitigate sickle cell symptoms.
5. Advocate for yourself
Know your rights as a patient. I cannot stress enough to take the time to read the patient bill of rights you get when you see a new doctor. It’ll be buried in the pile of intake forms they give you but it’s there. You can even request a copy of it if you don’t see it. A doctor’s word is not law. It is merely a recommendation based on tests, conditions, health history, etc. You can go to more than one doctor and get as many opinions as you need to make an informed decision. You know your health and body the best, so advocate for yourself and your needs and wants. If you have a pain crisis, seek medical attention immediately.
I’ll share more tips and ideas as I learn them. And feel free to share with me what works for you. This is a judgment free space. Speak with your doctor or dietitian to find out what works best for you.
The Chauncey Life 