Read time 5 minutes
Archith’s Note:
Louis is as brave as his name suggests, facing every challenge with remarkable courage. He lives with Morvan syndrome, a rare condition that tests both body and mind, yet he continues to turn his struggles into strength.
In this blog, Louis discusses his symptoms and the lessons he has learned along the way. His story is not just about illness but about hope and the small practices that have helped him revive his energy levels and health. Readers will find his words both practical and inspiring. He reminds us that even in the toughest times, there are ways to adapt, learn, and move forward.
Readers will find in his words both practical and inspiring. He reminds us that even in the toughest times, there are ways to adapt, learn, and move forward.
Courage in the face of Morvan syndrome
Morvan syndrome is a rare neurological disease. It can be challenging, especially in managing energy levels.
Whether it was a symptom of my rare and chronic ailments, or was it a stand-alone problem? This post can be helpful if you want to learn practical tips to overcome and prevent low energy levels. Also, what possible steps can help if a rare condition accompanies it?
My list of symptoms was visible and played havoc way before the actual diagnosis was made.
My symptoms touched both the nervous system and the digestive system. My biggest challenge and complaint were constant low energy levels which none of the doctors could tackle. It created a cloud of confusion around what was really happening. I faced deficiencies, recurring diarrhea, indigestion, and inflammation.
Over time, my journey became less about chasing answers and more about learning to recognize and respect my limitations in nearly every part of life.
After diagnosis, I was put on symptomatic treatment, majorly allopathic medicines and therapies. They came across as the ultimate solution offering immediate relief.
Reasons for Low Energy
Many reasons added fuel to the fire. Lack of familiarity, limited research, medicines, and treatments led to confusion. The unique combinations of symptoms posed unique challenges even for the doctors. It often left them in awe:
My Rare Neurological Disease
My neurological disorder was the primary reason for my low energy levels. Health conditions like these are known to disrupt the body’s normal functioning.
Morvan syndrome is a rare condition where the nerves and brain become overactive. It causes constant muscle twitching, severe sleeplessness, and body functions like heartbeat and sweating to go out of balance.
Side Effects of Medicines and Therapies
As a side effect of prescribed medicines, were condemned to low energy levels.
My prescription was a huge list of medicines daily. It mainly included medicines for Morvan syndrome, the chronic conditions, and diabetes.
The list of medicines seemed endless. It had painkillers, steroids, and sleeping pills, along with both oral and intravenous antibiotics. There were also anticonvulsants, insulin, blood thinners, statins, and beta blockers.
The list was loaded with drugs that caused severe physical and mental side effects. The side effects ranged from mild to severe undesirable effects and allergies.
My major list of therapies included Corticosteroids, Rituximab, Plasma exchange and Cyclophosphamide.
The lack of full-fledged physical activities
Limited physical activity contributed to laziness and muscle weakness.
Emotional Health
The onset of unpredictable alien symptoms led to a heightened sense of uncertainty.
My diagnosis odyssey was filled with constant mental chatter, worries, and fear. The uncertainties post-diagnosis wasn’t any better. They were accompanied by limited diagnostic capabilities, social isolation, hopelessness, and financial stress.
In the process my cortisol levels increased with an increased rate of blood pressure. They burned up a lot of my energy.
Nutrient Deficiencies
The mix of foods on my plate was always limited to calories, carbohydrates, protein, B vitamins, and iron sources.
Quick fixes in supplements were added as a gateway to health. However, the doctors warned that more sustainable changes from a long-term perspective could move the needle.
Inadequate hydration
Dehydration also leads to fatigue.
I wasn’t on enough liquid and was low on fluids therefore I was recommended water-filled foods to cater to this deficiency.
Ways In Which I Revived My Energy Levels
I managed my energy levels while living with rare and chronic diseases. Several strategies helped revive energy levels and fight back fatigue:
1) I experience that small and frequent meals helped me maintain steady energy levels. It stabilized my blood sugar levels and metabolism.
Initially, I overindulged into food that my body couldn’t handle. Consuming large portions caused my body to work harder to digest, leading to a drop in energy levels and feeling lethargic.
2) Food Intolerance
During the evaluation process, I discovered that I was intolerant to difficult-to-digest foods. Keeping my daily menu simple helped me boost my energy levels. My menu had a balanced shift to include fiber vegetables, healthy oils, nuts, etc.
3) I focused on what my body signaled and planned my daily activities accordingly.
4) Good Sleep hygiene practices made a positive impact by ensuring that I get enough sleep.
5) Asking for support as and when required is a healthy practice. I didn’t hesitate to ask necessary help from my friends and family. I learned a lot from others that eased health hazards.
6) I consulted my doctor to tailor treatment strategies specific to my needs and capacity.
7) I incorporated practices that helped cultivate the inner body stamina. Yoga, and pranayama under supervision as a daily practice helped strengthen my organs. Gentle asanas followed by breathing techniques helped improve my lung capacity, and blood circulation to reduce fatigue.
8) Managing stress levels is an important parameter. I practiced stress-reducing techniques including deep breathing and talking to body-mind meditation.
9) I ensured rest and proper sleep for restoration purposes.
10) Search and shifting to alternatives
I preferred not to force my body to change instead tried alternatives. The approach proved therapeutic for my mental and physical well-being.
Conclusion
Living with a rare neurological along with chronic ailments can take a toll on energy levels. However, it is possible to manage and improve the levels with the right approach.
Practicing healthy lifestyle habits, getting enough sleep, exercising, and meeting nutritional needs helped. I also let my doctor know if I’m experiencing excess fatigue to change my treatment plan. Managing stress has proved a great support in this aspect.
The most valuable realization is that each of us is unique. What truly matters is discovering what works best for our own body, rather than strictly following the rulebook or depending solely on a doctor’s advice.
DISCLAIMER
The views expressed above in this article are the author’s own and do not represent any kind of medical advice.