Farida Raj's book 'Unbreakable Spirit' is a tribute to all those who are 'Navigating life with Multiple Sclerosis', a complex and lesser known condition. The slim, accessible, easy-to-read self-help book delves into the physical, emotional, social and psychological dimensions of the illness and covers all relevant areas succinctly. MS affects mainly those in the 20-25 (-40) age bracket. The book is filled with stories that illustrate what this condition is like - a young girl whose arm freezes mid-throw on her honeymoon, a young executive suffering from extreme heat sensations that restricts her social and professional life, a marketing pro having incontinence issues, sexual problems in a young couple and so on.
Understanding MS
Multiple Sclerosis is a chronic neurological disease that affects the Central Nervous System - the brain and the spinal cord. The brain controls how we think, learn and feel while our nerve cells carry messages back and forth between the brain and nerves through the body. The CNS controls behavior and regulates the body's physiological process and this is what is affected by MS as explained below.
'Myelin' is insulation around nerve fibres which allows efficient transmission of electrical impulses or nerve signals to the brain. In MS, an autoimmune disease, the immune system targets the myelin sheath that surrounds nerve fibres and damages it, thereby making nerve signals inefficient.
This can result in symptoms such as fatigue, numbness, tingling, unsteady balance and weak legs, vision abnormalities, coordination issues, emotional changes - common place enough to not take them seriously. But they say that if you have an episode for a prolonged period of time - like say for 24 hours - and you have two such episodes, you need to get them checked.
Types of MS are relapsing MS, active MS, secondary progressive MS, primary progressive MS, benign and malignant.
The key then is early diagnosis by consulting a neurologist with your medical history. The neurological examination, tests like an MRI or a lumbar puncture test give a for diagnosis.
Being an autoimmune disease, there is no cure for MS - one merely manages symptoms.
Since the symptoms are non-specific it is not easy for MS patients. Even after the diagnosis is made patients suffer from confusion - not knowing about the disease, treatment, managing relationships. Farida says that it makes sense to engage neuro professionals, nurses, mental health pros. Treating MS - includes treating fatigue, depression, anxiety.
But You Look so Good
The problem with MS is that the symptoms are not easily seen by the outsider and they cannot understand what symptoms such as heat related issues/ fatigue/ pain and sensory losses/ cognitive loss/ vision/ involuntary rapid movements/sexual problems/ bladder and bowel movement/ swallowing difficulties/ speech difficulties/ muscle weakness/spasticity/ ataxia and tremor/ dizziness and vertigo are about. MS leads to low self esteem thanks to all these.
Impact of MS on Youth
Since MS affects youth mainly the young patients face challenges that are physical , emotional and psychological, social, education, career, relationships, parenting, finances etc.
Love intimacy Relationships
Farida dedicated a chapter on this core aspect and how MS can affect relationships. For those with MS relationships can get affected due to - sexual dysfunction, pregnancy related issues, disease progression, relapse, medication management, symptom management, parenting challenges, physical limitations
Diet
A big part of managing the disease is having a balanced diet. Farida recommends eating anti inflammatory diet/ rich in omega 3 fatty acids/ vitamin D/ whole grains/ healthy fats/ avoid processed foods. Hydrate well. Be careful with gluten and diary.
An improper die may cause inflammation, worsen symptoms. cause nutrient deficiencies, bone health issues. digestive issues, weight management issues, gut health, cognitive issues, mood and mental health, reduced immune health
Confronting Fear and Embracing Hope
Much of the book is about the 'unbreakable spirit' and about dealing with the disease with hope. Farida encourages MS patients to confront their fears and to embrace hope. Instead of withdrawing she encourages them to engage with neuro professionals, join support groups, focus on diet and exercise, manage stress, take help from family and friends, and even participate in advocacy.
Care givers
Farida devotes a chapter to care givers, often the unsung heroes in these stories. Care givers provide daily care - bathing, grooming, dressing, toileting, exercises, food, housekeeping and giving medicines. Their challenges are myriad and are often not addressed - dealing with the physical and emotional demands of the patient, making lifestyle changes, financial challenges, emotional and psychological impact on them and heir families, balancing of multiple roles, social isolation and even their personal health getting affected. Caregivers must engage in self-care, seek support, accept help, set boundaries, maintain a healthy lifestyle, communicate openly.
Misconceptions about MS
Being a lesser known disease, there are many misconceptions about MS. Some of them are that it is contagious (not), its a mental illness (no), fatal (no), affects older people (no), same for everyone (different for everyone), affects mobility (not always), has a specific cause (no), is caused due to a weak immune system (no), pregnancy worsens it (no), alternate cures cure it (no).
Creating a Positive Mindset
Apart from taking medications regularly, having a proper diet and doing other physical things as required, it would help MS patients to create a positive mindset through - self awareness, gratitude, surrounding oneself with positive people, setting realistic goals, having a proactive mindset, stress management, engaging in self care and seeking professional support.
Self care includes establishing a routine, organising information, using assistive technology at work or to deal with daily life, arranging the environment so its convenient and simple, employing therapy, addressing heat sensitivity, use of smart phone apps etc. One can also engage in the following to be at a stable mental and emotional space - meditation, positive self talk, visualisation, gratitude journaling, goal setting, stress management techniques, social support, seeking Cognitive Behavioral Therapy, Mindset reframing etc.
Advocacy
Farida encourages MS patients to take up advocacy. To do that one must educate oneself, raise awareness, support an MS organisation, support MS research, engage in advocacy efforts, promote accessibility, foster inclusivity, volunteer and participate and more importantly, share personal stories
Alternate Therapies
Interestingly Farida, a counsellor and a believer in holistic healing, explores alternative therapies such as Ayurveda, Acupuncture, Siddha, Reiki, Pranayama and the Win Hof method. She also touches upon the Joe Dispenza approach which is a holistic self-help method that engages the power of the mind, neuro plasticity techniques, placebo effect, self healing etc. She briefly touches upon quantum physics and how everything is connected and how we create and uncreate in our thoughts.
Some communities for support
Multiple Sclerosis Society of India (MSSI) - The main organisation in India dedicated to providing support, education and advocacy for individuals with MS and their families. They have chapters in various cities in India.
https://www.mssocietyindia.org/
https://www.nationalmssociety.org/Resources-Support/Find-Support/Online-Communities
MSSI - Hyderabad Chaptyer
AMAN, 8-2-589/11A, Road No.8,Banjara Hills,
Hyderabad – 500 034
Telangana, India.
Contact No:
9390055598.
Email id:
mssihyderabad@gmail.com
Help Line No.
Mrs. Meena Gupta
093910 31711
Mrs. Renu Swarup
098490 15313
https://www.mssociety.org.uk/care-and-support/online
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'Unbreakable Spirit' is a noble endeavour, an honest attempt to genuinely help those in need of information about the disease, in an accessible manner. It condenses a lot of relevant information to the patient, the caregiver, even doctors on the book, and points in the right direction for further action. It is well-written, well researched, maintains the fine line between being a source of information and a self-help book and being an academic work that goes beyond the layman. And like all noble endeavours, Farida's book will help millions of MS patients and caregivers find solace, support and a healthy self-esteem. Wishing Farida all success with her 'Unbreakable Spirit'.
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