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I have Lupus, Rheumatoid arthritis and Fibromyalgia. I had a medical crisis just before my mid twenties which lasted two years, followed by an intensive period of recovery for another two years. During my medical crisis I was in and out of consciousness and totally incapacitated until I finally awoke permanently and had to re-build my life by learning everything again.
After I awoke it took me six months to regain my personal memories. Within my first two years of recovery, it usually took me a few hours after I woke up each day to remember who I was and all my other personal memories, and I experienced mild Autoscopy (floating outside the perimeters of my body).
During my recovery, I often slurred my words, forgot what I was saying mid-sentence, and expended an immense amount of energy in maintaining a conversation. My short term memory was bad, but my long term memory grew monthly. I spent several years practising the names of family and friends because although I recognized them and remembered all our shared history within six months of recovery, I could not always remember their names or nouns in general. Those closest to me grew accustomed to the different names I called them and things, and still call them from time to time. They laughed at me and I laughed at myself. They responded to me irrespective of what I called them, and they knew what I meant when I said the fridge on the ceiling was too bright, so they turned down the lights. I called most things “tomatoes” and most people “Doris” (the name of my best friend, who happens to be my cousin). I decided the birthdays of my loved ones would be on any day I chose, as would saying Happy New Year and other seasonal greetings. I gave people their birthday presents, birthday cards, graduation and anniversary gifts several years in advance and on whichever day I chose.
I have always lived according to defined yearly goals. It was a strange experience that for the first two years after I woke, I had one goal a month. Month one, brush my teeth every day. Month two, stop using the bucket by my bed to pee in the middle of the night and try to make it to the toilet. Month three, try to at least eat breakfast even if I throw up because I cannot live on food replacement shakes indefinitely, my stomach must get used to digesting solids again. Month four, try to stay awake and sit upright for at least three hours a day. Month five, try to walk up stairs. Month six, try to walk outside for ten minutes a day. And so on.
It took me two years to re-learn basic physical activities of walking, eating, digesting food, etc. For several years I suffered from terrible plantar fascitis (pain in the soles of my feet), which made walking agonizing. Every step felt like a hundred needles were being stuck into my feet, thankfully this eased with orthopaedic shoes and orthopaedic insoles. After several years battling constant pain and chronic fatigue, I was diagnosed with Fibromyalgia. Fibromyalgia is a functional somatic illness that results from how pain signals are processed in the central nervous system, often resulting in sympathetic hyperactivity of the autonomic system. The illness is characterized by chronic widespread pain and allodynia (a heightened and painful response to pressure) in the musculoskeletal system and connective tissue. Its other symptoms are debilitating fatigue, headaches, sleep disturbance, joint stiffness, difficulty with swallowing, bowel and bladder abnormalities which often cause Irritable Bowel Syndrome, prolonged muscle spasms, weakness in the limbs, nerve pain, muscle twitching, heart palpitations, numbness and tingling, electrolyte imbalances (water – sodium – potassium fluid balance), anaemia (decrease in red blood cells), and problems with mental processes (known as “fibro-fog”), which usually affects short term memory functionality and concentration (it affects some patients in their long term memory).
I took a proactive approach to all my health issues and continued with physiotherapy and eating a diet high in fruits and vegetables both through juicing, steaming or eating them raw. Because I had always been a go-getter, it took me several years to figure out how to manage my time without depleting my newly limited daily energy, as I soon discovered that using the entirety of a “good energy day” only resulted in an even longer period of recovery. I grew in strength and in mental and physical ability each year.
When I was able to read again, I re-read all my books from nursery rhymes to my academic texts and I read everything I could lay my hands on about my illnesses and improving general health. When I had improved enough to function within some degree of normality, I did voluntary work with terminally ill patients in end-of-life counselling and provided support to bereaved families. When I was able to have a five-hour day (i.e. the total number of hours in a day when I was awake), I trained and worked as a florist, an interior designer, a make-up artist, a beautician, a chef, and many other jobs within my hobbies, usually for a year at a time. I did this in order to practice my speaking and interpersonal skills with people other than my family and to get exercise my body. When I was able to study academically and retain the newly learned information, I studied and practised as a nutritionist and an Anatomy and Physiology consultant. As my strength and memory grew, I found my way back to private practice as a trauma consultant, life coach and what others term as a “spiritual” teacher.
When I felt ready to resume the books I had started writing in my early twenties before my medical crisis, I put psychological consultancy and life coaching on hold, and began writing. I also resumed my passion of singing, song-writing, dancing and nature photography. I still have dyslexia when speaking and spelling, although I rarely experience dyslexic symptoms any more when I am reading. My advanced mathematical abilities have not returned to their previous state.
I now operate at 40% of my functionality prior to my illness. My mother assures me that this is surplus to requirements.
My health has grown and continues to grow from strength to strength.
I am extremely happy, completely at peace and grateful to be alive.
To the parents, siblings, partners, children, relatives and friends of those with chronic illnesses that actually practically help, be blessed in your aid, your patience and your support – This is not easy on you either. We thank you from the bottom of our hearts. To my fellow sufferers of autoimmune and other non-directly-visible and incurable chronic illnesses, I hope my story gives you some hope, or in the very least makes you smile. There is light at the end of the tunnel. Let’s make lemonade with our lemons.
With much love and best wishes,
Veena Xoxoxo IF YOU WANT TO ASK ME A QUESTION ABOUT MY LIFE PLEASE READ MY F.A.Q PAGE FIRST AS YOU MAY FIND I HAVE ALREADY ANSWERED IT THERE. IF YOU STILL HAVE A QUESTION FOR ME PLEASE POST IT ON MY F.A.Q. PAGE OR EMAIL ME AT email@example.com. THANK YOU.
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|© 2014 Veena Nankani www.veenanankani.com My web content, posts and pictures may be shared on social media but may not be used for commercial purposes without my consent. Veena Nankani - Author of “Mum Knows Best”, Life Coach, Nutritionist, Motivational Speaker, Writer, Poet, Professional Reviewer and Entrepreneur.|