I would like to open up about my invisible illness. I first realized there was something wrong about six years ago when i came to New Zealand in couple of months I got really sick had this persistent pain in my body and I kept getting this shooting pain from my neck to lower back. My pain became more widespread, more frequent, and more intense when I was at university.
I went to several doctors and specialists had several exams for past 6 years finally I was diagnosed in 2022. The neurologist gave my invisible illness a name Fibromyalgia. I was finally relived they found what actually my illness is however it is a chronic illness which is lifelong and has no cure and also accompanied by chronic fatigue and 100 other symptoms.
Living with fibromyalgia means living with a chronic pain condition that greatly influences daily life. I feel pain all of the time and this affects my ability to do day-to-day tasks.Every task I choose to do has a trade-off with another. For example, if I choose to cook something, doing the laundry becomes more difficult.
As soon as i was diagnosed,I was forced to slow down all my activities both in personal and professional life it had gotten so worse that full right side of my body from neck to feet was in so much pain i could barely move, close my fist or hold a cup or grab the spoon to cook or eat.
Hence i had to make so many changes in my life to gain back strength and mobility slowly back to my body.I had to start taking different medications and therapies with many trials until my doctor found what worked better for me, many meds I was on, messed with my sleeping pattern made me feel nauseous and dizzy whole day and others messed with my stomach lining. I tried to work out because I felt that staying active changing my diet to vegetarian would help me sadly it worsened my symptoms even more. The most challenging aspect of fibro, for me, would be the fatigue, since it prevents me from doing a lot.
Unfortunately, there are not too many medical experts in New Zealand who have done research to understand what I have, and how it affects my daily life. My husband is my number one supporter and he helps me with my stress which is a trigger to pain, but there are also those who don’t understand or care to, so I just distanced myself from those people. I will continue to remove such people from my life, whether blood related or not, if you are not concerned about my wellbeing then I don’t need to have you in my already small circle.
In the last six years there has never been a day my body was without pain. I dont even know how it feels to be without pain anymore. I can’t be on meds 24*7 so i try to get as much rest as possible. As the meds have other side effects which causes other health issues.Honestly, i have tried all the pain killers in the world none of those have ever made my pain go even 20% less . There are times when I feel like nothing works and then i started to research and study on this illness myself.
With my findings and study for months i found out that lifestyle management is the only solution with people who have chromic illness. Since western medicine doesn’t have any cure i studied Ayurveda and gain knowledge around it and observed myself by doing trial and errors with Ayurvedic diet and practising spiritualism as a result to balance and manage my lifestyle Ayurvedic food diet which works for me in subsiding symptoms related to fatigue and stomach lining. Spirituality also really helped me such as meditation and yoga in order to focus on the positivity around me and to push myself to keep fighting with my body in order to live my life to the fullest.
As far as being open about my illness & symptoms, I hate to complain, because I know it can be annoying to hear someone talk about how much pain they are in daily, so I keep it to a minimum. I hate to hear that it will get better, when I know it’s not going to get better because there is no cure. So, I had kept it to myself. Remember to be kind to people as behind that smile we don’t know who is fighting a battle not everyone likes to open up about their struggles. I have had people commenting on my life about gaining weight or not going out or visiting families and friend. Last six years has been a roller coaster ride for me. I have been faking being okay!
My biggest battle is the pain I deal with daily, but the biggest is putting on a brave face, getting up and starting my day and trying to keep up with my daily responsibilities either personally or professionally. There was many moment in my life where i would want to scream at the top of my lungs. I just have no control over this illness that has taken over me and i would want to take my life. Then i look around and see I have family who i love dearly, and one look at them, tells me that my life is important and worth fighting for.
Honestly taking it one day at a time, is how I balance my illness in my personal and professional life, there is no other way. I had always been a high achiever and proceeded to put a lot of pressure on myself in every aspect of my life hence people always say i am lucky whenever i attained my goals whether it was graduating with academic excellence being the top scholar or getting a corporate job at management level or buying a brand new home or travelling around and buying luxury items at early 20s it is not luck it is hard-work sacrifices and most importantly journey of fighting with my own body, health and mind to live life and achieve of my dreams. I just want to say to each one of you if your healthy you are lucky one as Health is Wealth!!
I would like people to know and understand that this condition is real and it’s depressing- please be supportive. If you find that you can’t be of any help to that person suffering from Fibro, then remove yourself from their lives, and spare them further pain.
My words of encouragement for others who are living with Fibro are to try to find a doctor who is caring and believes in your pain, and work with them in finding medication that can help you control some of the pain, because right now, there is nothing that take it all away. Continue fighting, and don’t give up, we have people who need us and depend on us, so we must find a way to fight to continue living. And lastly we should all come together and help us spread the word, and know that you are not alone.
Lastly, this message was not for sympathy it was for awareness in the community which is must needed.
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