Living with chronic fatigue can seem like being stuck in a long dark tunnel. But, whether your chronic fatigue has been diagnosed as Chronic Fatigue Syndrome (CFS) or a secondary condition to another chronic illness, it can affect every aspect of your life.
It is important to note that CFS is a very broad term and diagnosis, so there are multiple levels of managing the condition and paths to recovery. What works for me may not work for you, especially if CFS is secondary to another chronic condition.
Besides missing out on so many things, one of the hardest things for me was trying to get people to understand what I was going through. One day after another disappointing medical appointment, I realized there wasn’t a clear path to dealing with this bone weariness. So I started my discovery and had some missteps along the way. Still, I also came up with habits that have helped me control the fatigue and get back to a meaning-filled life.
I hope my discoveries can help you leave the dark tunnel of CFS and reclaim your life.
Own It
One of the first things I did was to start taking ownership of my role in my treatment plan and wellness. Before this, I was passive in my care, relying on my healthcare team to be responsible for everything. Once I started holding myself accountable for things, I became more engaged and worked with my medical team, treating them as subject matter experts in some cases.
Experiment
I wish I had discovered the importance of trying new things and getting curious enough to investigate on my own much earlier on my journey. I noticed a difference when I started to pay attention to some lifestyle choices and made changes. When in doubt, small changes are better than trying to redo your whole life at once.
Feel
Learning how to manage and feel the emotions that come with something like CFS is critical to changing your mind-body connection. Coaching, support groups, peer groups, and journaling are all excellent ways to deal with emotions and put things into perspective. For example, going through the emotions allowed me to get past being angry about changing my diet and shed the fear and patterned thinking that nothing changes, and this was now my life.
Be Courageous
Dare to trust and believe in yourself and your body and that you will change your level of wellness. Be fierce in making the time and the space to put yourself first when you need to.
Organize
Getting organized with your medical information is crucial to being a successful advocate. As your medications or doctors change, it is important to have vital information where you can find it when needed rather than spending unnecessary time and energy looking for something. I went from having paper everywhere (after all, chaos is where creation comes from) to having digital file folders for lab results, copies of notes, etc.
Educate
As you learn about your condition, it is important to help educate your friends and family so they can support you. In addition, being well-informed about a condition empowers your to make informed decisions and actions about your wellness plans.
Accept
Learn to accept help. When I started my journey, I was positive I would be the one to get through this on my own. I didn’t need help, nor would I ask for it because that would mean giving in to something invisible. However, after a dear friend forced her way into an appointment with me, I realized that rather than being weak, allowing people to help me allowed me to do other things while having the confidence that nothing was being misunderstood or overlooked.
Pace
Pacing myself was one of the best things I ever learned to do because it helped reduce my relapses. I could remain in control while slowly and carefully increasing my activity level without getting stuck in a cycle of doing too much, only to crash afterwards. Plus, pacing allowed me to keep things more stable and practice self-care.
I managed this with a diary to record how my body felt after certain activities and how I learned to stop before overdoing things by paying attention to the cues my body gave me. Once I learned how to recognize the symptoms and reduce activity level in time, I could control my relapses and start living a life beyond chronic fatigue.
If you are feeling lost on where to begin with healthy coping skills for chronic illness, let’s connect and get you back to living life beyond chronic illness. Supportegy Wellness provides chronic illness support through various proven ways, including chronic illness support groups.