Guest Blog: Chronic Illness Life Tips
written by Kristie Wright
I have 14 years of living with Fibromyalgia and Chronic Fatigue under my belt. It all started after 18 years in a difficult marriage and a half of dozen surgeries to deal with endometriosis resulting in a complete hysterectomy in my early 30’s. It has been a hard road and aside from the pain the most frustrating part is the healthy people around us cannot begin to understand the day to day struggle.
Only we can understand the amount of thought and effort that goes into every day decisions and activities and how our bodies can be affected. Recently, I went to a Christmas tree lighting that I wasn’t up for, only to spend the next 3 days lying in bed trying to recuperate. The walking, standing, noise, crowds were just too much for a body that was already in pain and exhausted. These are things that we must consider daily.
These suggestions that have helped me along the way, although it’s still a fight every day, sometimes little things can make a big difference.
Chronic Illness Life Tips
- Get your Vitamin D levels checked. If your levels are low, work with your doctor to find the correct dosage for you. Drops with MCT oil in them are good for absorption. It's not a cure but it can affect pain levels.
- Drink plenty of water. I always keep water with me. It's not going to minimize the pain, but your body needs the hydration for your muscles.
- Avoid caffeine. I know it's no fun, but caffeine enhances the fight or flight response that so many of us deal with daily. It causes added tension in the body and none of us need that. If you think you just can’t – start cutting way back or try options like half-caffeine coffee. But please, for the love of all that is good in the world, please do not drink energy drinks. The tension in your body from the overstimulation is the last thing you need.
- Eat well. Lean meat, veggies, fruit or whatever healthy foods that aren't a trigger for you. Try eliminating foods that you believe are potential triggers and see how you feel. It doesn’t mean giving up everything and I am not preaching weight loss. When you are having a major flare, recount what you had to eat in the days prior that could possibly be triggers.
I had a huge flare at one point that included a horrible migraine. I started researching the foods I had eaten in the days before. That is when I found out the foods were high in histamines and tyramines. Now I limit my intake of these foods. If you suffer from migraines, I highly encourage you to look at this list. https://www.jillcarnahan.com/downloads/HistamineRestrictedDiet.pdf
- Try minimalism. You may ask how this helps but think about how it can make a difference if you have less to clean around and take care of. If you don't use, wear, or need it, sell or donate. You may have to do it in phases but it's worth it. Purge for your health and well -being. Less mess, less stress.
- Ladies: If you get exhausted just trying to style your hair every day, consider a two-in-one tool like Hot Tools or Revlon all- in-one styler/dryer. My arms still get tired often, but the key is letting your hair air dry beforehand and taking breaks when you need it. It's a lot faster and you will use less tools to get the job done. Also invest in a good dry shampoo or cute hat for the days you just can't.
- If you are experiencing hair loss, first make sure you have had your thyroid checked (which you really need to do regularly anyway). If all is normal, make sure you are not skimping on your hair products. I know it can be expensive, but it is an investment in your hair to use products that are not contributing to the hair loss. I switched to products with less chemicals and parabens and saw a difference. If I am really trying to give my hair a break, I will use all-natural baby shampoos for a week.
- Also, for the ladies, invest in a good comfortable sports bra or bra free of underwire. It's not an easy task to find a good one but we all know that miserable feeling of being stuck in a bad bra all day and the effect on your skin and pain sensitivities. Ditch the bras that make you so uncomfortable. Here's an article with some suggestions listed: https://themighty.com/2017
- Shoes! Lordy please invest in good shoes! You may have to spend a little more, but your burning feet will thank you! Much like with the bra, the wrong pair of shoes can cause so much discomfort. It may not be fair that we can’t wear those cute pumps that we used to but find some stylish comfortable shoes and rock those instead. The comfort shoe brands like Dr. Scholl’s are stepping up their game and making more stylish shoes. They are out there.
- Find comfortable clothing. We all know that miserable feeling from clothes that rub the skin or feel confining and the burning skin from wear clothes that aren’t conducive to our conditions. Do your research on clothing that looks and feels good. Don't settle for less.
- Try chiropractic care or a massage. Many don't like being touched but if you can get the knots out of those trigger points, it will help in the long run. This was not for me at first because quite honestly, I wanted to scream when someone touched me. My first few massage appointments, I cried. But as time went on and those knots were looser, it was much more tolerable. Keeping your spine in alignment is good. However, I do not allow them to touch my neck. I am prone to migraines and I just don’t take my chances that a neck adjustment might bring one on. Try it within your comfort level.
- Invest in a Tens Unit. This has helped me tremendously with hip and upper back trigger points. The stimulation has helped loosed the knots in my muscles.
- Enlist your family's help with household responsibilities and use tools like a lightweight vacuum or swifter mops. Or better yet, if you can afford it, pay someone to come do deep cleaning once a month to address the areas you can't get to. The responsibilities for the upkeep of your home, should not be solely on your shoulders.
- Rest often. Seems simple, but when you are exhausted, you should listen to your body and stop pushing yourself to do more. You will feel the effects of pushing beyond what your body can endure. We all know about recuperating 3-4 days after we've overdone it. It is rarely worth it.
- If you are tired of staying in but can't handle the noise, lighting, etc of restaurants, visit places before-hand to get a sense and feel. Ideally, low lighting, no obnoxious overhead music blaring, and not overcrowded. This is a sticking point with me, I will try to go out when I have the energy, but it must be a place conducive to my sensitivities. My favorite restaurants have dimmed lighting, no overhead music, and a calming ambiance.
- Don't over commit. As we all know, the energy you may think you have for a few days may change when the time comes. If the time comes and you cannot manage, don't go. If it is some hugely important milestone that you just cannot miss, get extra help. Rest before the event, have someone drop you off at the door instead of walking, make sure you are wearing comfortable clothing and shoes, keep meds on you in case you need them. Do some planning before the event to make things easier for you. Find a culmination of small things that can help you better enjoy your time.
-Stretch or yoga. I will be the first to say I get sick of people claiming it's the answer to all our problems, which it is not. However, gentle stretches can help keep the trigger point knots loose. Maybe you are like me and don’t want to do a full yoga work out, try some stretching instead. Here's an sample article for reference: https://www.doyouyoga.com/8-yoga-poses-for-fibromyalgia/
- If you work, take mini-breaks and step away from your screen a few minutes an hour. The over stimulus just exacerbates the tension in our body.
- Try CBD. It's worth trying and many have found symptoms more tolerable.
- Try essential oils. Again – it is not a cure, but I also believe we can add some of these to our arsenal for good use. Peppermint oil and lavender are good to have on hand for migraines or tension. I use lavender, frankincense, and peppermint when I'm clinching my teeth or getting a migraine to help relieve some of the symptoms.
- SO IMPORTANT: Find a healthcare provider that cares and is experienced with chronic pain. Easier said than done, I know, but don't settle for a provider that doesn't care to take you seriously or care about your wellbeing. If you leave your office visit feeling like they are implying it is all in your head, never darken their door again. Advocate for yourself and find a provider that will be in your corner.
- Last but not least, don't beat yourself up. The days are hard enough without you feeling guilty or beating yourself up for what you haven't done. Make a list of the things you HAVE done and celebrate those things. If there's something you want to tackle, take it in small intervals or try again tomorrow. But listen to your body first.
It is not an easy road, but small changes may help in some way and the small things can add up to big differences. Explore what those may be. Keep life simple for yourself in areas where you can. Keep up the good fight warriors. Sending so much love!
Wife and Mother of Two
Lives in Franklin, TN
Fibromyalgia and Chronic Fatigue – 14 years