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This blog is another opportunity to feel grateful. Thank you, Universe, for continuing to bless me with recovery and health.
Living with a rare neurological disease can be challenging, especially, managing energy levels.
I wondered if I missed the prerequisites, or if it was something else.
In this blog post, I share my experiences and insights behind persistent low energy levels and how I dealt with them. Let’s find out…
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?
In 2016, I was diagnosed with a rare disease called Isaacs’ Syndrome. Isaacs’ is a neuromuscular health condition that stems from muscle hyperactivity. In the process, I also discovered that I had Lyme disease. Lyme is a bacterial illness that gets transmitted through ticks.
Glaucoma also accompanied me. Glaucoma is an eye-related disease that damages the optic nerves. And Membranous Glomerulonephritis is a progressive kidney disease. I faced tremendous issues with my gut, stomach acid, and digestive enzymes. During my journey, I also developed Irritable Bowel Syndrome (IBS), Diabetes, Frozen Shoulder, Eczema, and Blood Pressure.
My list of alien symptoms was visible and played havoc way before the actual diagnosis was made.
My symptoms were related to neurology, gastroenterology, and ophthalmology. There was so much confusion in the air. The list included various deficiencies, diarrhea, indigestion, and inflammation. My journey became about understanding my limitations in almost every sphere 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.
Isaacs’ Syndrome is characterized by the overactivity of nerves that stimulate muscle fibers. The key reasoning was its autoimmune component, muscle overstimulation, cramps, twitches, stiffness, involuntary muscle firing, and chronic inflammation.
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 with 42 pills daily. It mainly included medicines for Isaacs’ Syndrome, the chronic conditions, diabetes, and IBS.
The list comprised painkillers, immunosuppressants, steroids, and sleeping pills. Also, oral and intravenous antibiotics, anticonvulsants, insulin, blood thinners, statins, and beta blockers. Even corticosteroids, diuretics, probiotics, and food supplements.
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.
Major therapies included IVIG, steroids, and plasma exchange. Homeopathic and ayurvedic medicines were also a part of my daily prescription.
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.
The diagnosis odyssey was filled with constant mental chatter, worries, and fear. The uncertainties post-diagnosis weren’t any better and 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, burning up a lot of 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 help me maintain steady energy levels. It stabilized my blood sugar levels and metabolism.
Initially, I overindulged into food that my body could handle. Consuming large portions caused my body to work harder to digest, leading to a drop in energy levels.
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 activities accordingly.
4) The Spoon Theory helped me spread activities to avoid overexertion. It aided in conserving energy for important activities.
5) Good Sleep hygiene practices made a positive impact by ensuring that I get enough sleep.
6) 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.
7) I consulted my doctor to tailor strategies specific to my needs and capacity.
8) 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.
9) Managing stress levels is an important parameter. I practiced stress-reducing techniques including deep breathing and talking to body-mind meditation.
10) I used natural supplements.
Flaxseed oil (a source of omega 3), Epsom salt (muscle relaxant), White Sesame seeds (muscle stimulant), etc. to boost energy levels.
11) I ensured rest and proper sleep for restoration purposes.
12) 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.
13) I consulted a renowned Ayurvedic practitioner for my symptoms and body weakness.
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.
DISCLAIMER
The views expressed above in this article are the author’s own and do not represent any kind of medical advice.
