Life being velcroed to the floor
10 ways I manage the daily battle against chronic fatigue
My second sign and symptom of Ehlers–Danlos syndrome as a kid, second to having a lazy left eye, was chronic fatigue. I’ve been tired my whole life. It wasn’t until I was a teenager and then again as a young adult, that I was diagnosed with Chronic Fatigue Syndrome.
I can pretty much sleep anywhere (except when I really need to sleep, like at night), just ask my dad or my husband. My father still talks about the fact that I slept through Europe. I can remember always being so tired and constantly fighting it. I never could identify with the kids that had so much energy. That wasn’t me at all, and I’ve never been an early riser. Ever. Getting up early is painful. I’m happy when I do get up early, but it’s the most horrible process ever, and it’s never gotten easier.
As I’ve gotten older, I’ve learned about the other side of extreme fatigue that often comes hand in hand with EDS – anxiety, OCD and adrenaline rushes. It’s s love/hate relationship. I always wondered why I more than happy to stay up way late as a kid and organize my room. Take me to a party – I will pass out, but get me organizing or working on a project, I get the best second wind ever. The hard part of that second wind though, is that it takes me a week to recover and bring my system bask in balance.
Other times, I go through flares with CFS so strong that hours of sleep, cups of coffee and any meds I’ve tried do not help. It’s a fatigue that I can feel to my bones. It’s incomprehensible. My brain literally feels like it’s going to shut down on its own, if I don’t do it myself first. This kind of fatigue makes it hard for me to workout – even my #just5minutes is a challenge. It also makes driving incredibly scary.
Sleeping for hours doesn’t take the fatigue away, and sometimes it makes it worse. My brain doesn’t compute things right, or organize the steps I need to take to finish a task. I usually feel like I’m walking around in la la land. I move incredibly slow, and it takes all of my effort and focus to complete each.and.every.single.step of a single task. I constantly battle between feeling like I’m velcroed to the floor and feeling like I need to start moving, because the pain from sitting or staying still is excruciating. Battling chronic fatigue is a catch 22. Fatigue slows my work productivity, which means I don’t take breaks to go workout, rest or eat, because I don’t have the time. The effects on cognitive function have been devastating.
When I’m going through a CFS flare like this, I try to sort the thoughts in my head, but they get more jumbled and piled-up. I have to reread things over and over, and I often fall asleep with my eyes open mid sentence. Trying to figure out where I was and what I was doing when I fell asleep for a hot second or got distracted, is a whole other issue.
Despite how challenging trying to focus is, the biggest sign to me that things are tipped way to the wrong side, is if my muscles tire and start shaking from any effort – like standing. It’s a fatigue like I had just ran a race or lifted super heavy on leg day at the gym. My heart rate also goes way up when I stand, compete with extreme dizziness and other POTS-like issues.
I usually still try to workout, but I scale it way back. Sometimes it takes me hours to go through only a few exercises, because of having to stop so much and allow my heart rate to settle. And if I stop, I fight against feeling like I’m going to collapse from exhaustion, where getting back up is like being super glued to the floor. That’s worse than being velcroed.
I also get so sore from even the slightest use of my muscles.
So, until we figure out the causes of CFS and why this condition occurs comorbid with Ehlers-Danlos Syndrome, all we can do is try to identify little things that help us get through each day a bit easier.
For me, it’s imperative to try to avoid the things that I know cause an extreme CFS flare and my autonomic nervous system to go haywire.
Below are 10 things I try to focus on when I am in a chronic fatigue flare:
1. Clear my schedule, or as much as I can. Scaling my expectations down for myself and my family is critical. We all need a good balance of things scheduled and down time with nothing to do.
2. Limitations and communication – the only way to help yourself, is to be honest and almost protective of your limitations and clearly communicate them to anyone who may need to know. Communication doesn’t need to be long and drawn out. It can be short and simple – “I’m dragging, so I need to chill and recoup.” If there’s something more that you need, then clearly communicate that to. For me, that usually means staying, “I love you all, but I need rest and to be left alone. And as much as I love snuggling, snuggling wakes me up and makes me hot. Please leave me alone and let me sleep.”
3. Proper hydration – I drink alkaline water and fresh juices from a local raw, vegan company called Gouter. We also have a juicer and a vitamix that we regularly use. Kombucha, which is a probiotic, is another great drink that gives you a ton of nutrients and helps keep you hydrated.
4. Nutrition – I do best drinking my food and I also know that how I best absorb nutrients. I make sure that I’m hydrating properly (see above) and that I’m getting enough vitamin C, D, B vitamins, magnesium and I also take a few of Dr. Theo’s supplements with quercitine for mast cell activation and inflammation. I also take turmeric if I don’t have a juice with it in it. My DHEA is very low, so I’m trying to see if really low dose of DHEA helps with the fatigue and possibly even muscle mass (I work my butt off for my tiny muscles). Read the Top 10 Nutrition Tips and Resources for Optimal Health with EDS. There’s a link to Dr. Collins’ diet and supplement guidelines for people with EDS. All of can apply to those who have chronic fatigue as well.
5. Thyroid & other key levels – if you haven’t done so, you may want to consider having your thyroid levels checked, as well as your hormones, nutrients and other key levels. Because of Hashimoto’s Hypothyroidism, I am constantly having my thyroid levels checked, and usually my hormone and nutrient levels are checked also.
6. Movement – anything is better than nothing. No matter how long or how slow, anything to help get the blood moving can be incredibly beneficial. It’s always best to double-check with your physician or PT before trying anything new, or anything that may not be best for your body. Sometimes, I have to stick to exercises on the floor, or even ones I can do in bed. See the Just 5 Minutes rule.
7. Mindfulness exercises – these can include gentle yoga, meditation, coloring, cleaning & organizing, journaling/writing and more. While sleeping is the best form of meditation, these other mindfulness techniques help quite the mind, decrease stress and help you rest in a totally different way.
8. Set realistic expectations – this goes along with #2, but has more to do with our long-term ideals of stability and not feeling well. We all have to recognize that what stable looks like changes all of the time and we need to adjust accordingly – physically and mentally. It also may not be exactly what we have in mind.
What matters is that we adjust accordingly. We also need to make sure we ride the roller coaster of living with a chronic condition, and judge ourselves on how we are doing based on the overall progress from where we’ve been – not where we want to be, or where we should be, or where we were headed. This idea doesn’t mean that we can’t get to that ideal of stability, but it means that our journeys getting there, have a lot of twists and turns and bumps, and usually take us a lot longer than planned. As long as you are still moving forward, that’s what matters.
9. Try to take an “illness” break – this may seem impossible, especially for those who are more severely affected; however, it’s amazing what can happen when you focus on other things, go out and live life as best as you can. Laugh, be around people who know you for you outside of your condition, and spend time doing something that you really enjoy. I often go about my day as if I have nothing wrong and live as if everyone deals with the same issues I do. It’s incredibly freeing.
10. Consider any medications or other issues that may be contributing to your fatigue – As much as we don’t want to admit it, many medications that we take help one thing, causes another. Fatigue is one of them. Fatigue due to medications, on top of chronic fatigue, is never a good combo. Additionally, fatigue is also associated with seasonal allergies, reactions due to mast cell activation syndrome (mast cells are our allergy cells and are responsible for our allergy symptoms), and hormones (i.e. monthly cycle hormones and other endocrine issues, as stated above).