CFS is my unkept secret, the hell I have been in and out of. Living with Chronic Fatigue Syndrome (CFS) for the past eight years, on top of co-occurring health conditions and marginalized identities, has not been easy.
Now, I might be in a state of remission from this syndrome, but I would not say I am in the cure stage yet. I am very proud of all the work my doctors and I have done to get myself to this stage of health with co-occurring chronic health conditions. IT was NOT easy. Without my personality type, education level, and privileges,Without my personality type, education level, and privileges (such as being raised with parents who practice holistic health, living in California being married now etc) I would be dead or homeless right now.
If you have yet to experience CFS, Linda Jones's Ted Talk paints a great picture.
For me, it's like being hungover (throbbing headaches, lights and sounds are obnoxiously intense, perfumes make you want to run away, and some people's voices feel like nails on a chalkboard) times TEN!
On the best days, I feel like hay; maybe I cured myself, only to overdo it with activities and be bedridden the next day. Now I have learned to pace (more on that later).
On the worst days, it feels like walking through mud with limbs made of lead and my back so heavy, it's as if someone is pulling me down (begging me to shut my eyes and go to sleep)
photo by Photo by Harrison Haines https://www.pexels.com/photo/blue-motocross-dirt-bike-on-mud-3122801/
The psychological Toll
of thinking you find a cure to only after a few weeks or months be dead tired and drudging through life again is unbearable. The amount of effort to smile, breathe, and put things into perspective is like an ant pushing a boulder up a 75-degree cliff, nearly impossible. On good days or weeks you think, was I imagining things, then without pacing properly overdo your energy expenditure to be left in unable to leave your apartment because if feels like you will pass out at anytime.
This naturally leads many with CFS or MS to develop depression.
I have had bouts of depression my whole life, but since the onset of CFS, it was difficult to find treatments that felt with the main issue fatigue. I did TMS, and it made a major difference for my mood but only improved the fatigue by a little. The treatment was very difficult to get through and I had to sleep a lot but I would say it's worth it for depression and anxiety but for CFS it was not effective.
Despite dealing with all of that I still dolid well in school. I think what got me going through the worst of this illness is the notion that if I gave up on my dreams, I probably would kill myself with boredom. If you have a chronic health condition with no "cure," I am sure you can understand how isolating that can feel and know you do not want to end up alone and jobless.
What has helped
Having a weekly therapist to talk to
Being in support groups (for my other conditions and this one)
Journal symptoms, log progress, and setbacks (I can not stress this enough!)
Trying one thing at a time (don't do ten new supplements; try one new one. Start with meditation, then add walking, see what is working. Give yourself 3-9 weeks per change or what your doctors recommend.)
Talking with peers on reddit
More tips and help will be available in my shop as a PDF and eventually on Amazon as a workbook. Subscribe to stay informed.
The economic Toll is the worst.
I was only able to survive due to quick jobs, student loans, or the help of family. At one point I had to play a credit card game where I did all those balance transfer deals. Combine CFS with having ADHD and possibly ASD, and non-gig-based jobs become near impossible during the height of the pandemic, my funds were struggling.
When my CFS was really bad. I had to quit one career (modeling), and cut back on another (fitness instruction).
If you are able to work part time or have no choice or you will be homeless, here are my suggestions until your CFS is in remission
Find a career in which you can control your hours and be remote.
Create passive income
Use my creative talents and vast knowledge and expertise
Learn to Market
Hire a marketing consultant/coach
possibly teach mostly passive courses/teach online
All of this advice is great, but only sometimes possible. Hence, I am slowly starting with my website and this blog. I want to work on selling on places like Amazon and using drop shipping. But since I only have so much energy and am in Grad school (because I want the expertise and career), I have to be very smart with my time.
The social Toll is ostracizing
I found my personality shift by year three of having CFS, and it became apparent about two years ago I had developed major depression.
What has helped me the most with depression was
Recognizing that I did have it
Seeking help specifically for it
Working with a traditional Chinese Medicine Doctor to balance my hormones and reduce the negative impact of PMDD (another type of depression that is related to the drop in estrogen in the luteal phase of a menstruating person's hormonal cycle).
The treatments that worked were not traditional SSRIs but a combination of things.
Transcranial Magnetic Stimulation ( It is covered by health insurance, and I highly recommend it; ask your psychiatrist or primary care doctor about it.)
Therapy focused on trauma and my way of thinking.
Dealing with social anxiety
Learning more about my neurodivergence
Exposure therapy and doing things I know are scary but needed to do to get out of a negative social return.
Treating the physicals (nerve pain)
- Cymbalta and Cranial Sacral have been a big help in that department
The self Blame Toll
It's easy to think chronic fatigue is all your fault. Sure, the lifestyle that led to our immune systems being weak to allow for a viral infection is our responsibility. But beyond that, there are too many societal, biological, and environmental factors in this. Please be kind to yourself. You got sick; all beings on this planet do. Some die, others don't from those illnesses. You are alive right now, so there is a chance you will get better.
What has helped me
Even if you improve your energy by 15% by the end of next month, how much better would your life be? What could that 15% do for you? That is how I had to look at things when I kept getting " I don't know what's wrong with you from doctors." It isn't easy. The pain is not understood by anyone who hasn't gone through something similar. The shame, the stigma, you are not CRAZY; I promise you, these types of nervous system/neurological disorders and viruses are a huge pain to deal with but not impossible. Talking with a therapist and peers in person and on Reddit has helped me learn more from what the community and scientists have found and what didn't work for me but for others. Conditions like this are complex, and multiple factors are most likely affecting your fatigue. Learn from others.
If you are suffering from a chronic illness like CFS, please feel free to reach out to me. I am in the process of creating a workbook and, eventually, a book on how I managed to get my life back despite co-occurring chronic health conditions. Don't suffer alone. There are proven ways to make improvements on many of these conditions.
Let us help :)
Much love and light,
Misted K Forest