Have you ever seen an iceberg? The prism of packed ice illuminates the surrounding sea. The part you can see is beautiful, yet most of its mass lies beneath the surface. You cannot know about what you cannot see. Therefore, your perception is based on what is visible, and the invisible part is completely ignored resulting in an inaccurate perception.
It’s the same with people suffering with invisible diseases. They very bravely wear a façade to mask their personal despair but once you are able to go beyond the mask and see their daily struggle to survive, I am sure you will be shocked and moved beyond words….
There is a vast majority of people who do not know a thing about invisible illnesses. I know since you haven’t come across anyone who suffers or do not live with it yourself it’s hard to comprehend, but I hope what I have to say will give you an insight into what life is like for me for the past 22 years.
It was in the year 1998 at 29 years of age I was diagnosed with having Multiple Sclerosis which is an Auto immune disorder where the body’s own immune system attacks the Central nervous system as a result Myelin the protective sheath on the nerve cells, gets damaged and the nerve cells are unable to send or receive signals as they should, this results in partial or complete loss of vision, muscle weakness leading to partial or complete paralysis.
I was diagnosed with MS when I had my first full-fledged attack of Optic Neuritis where in the Optic nerve of my right eye was inflamed causing severe pain and loss of vision. But before this full-fledged attack and a proper diagnosis I was ill and fighting a constellation of health issues like muscular spasms, severe fatigue, pain numbness and tingling sensation of the extremities, fever and infections of unknown origin for two whole years, all part of MS. The diagnosis was a huge and shocking one and unheard of but brought a strange relief that after all my sufferings actually have a name, they are real and not just an imagination as many people suggested at that time. As I started reading about it, I got to know that Multiple sclerosis is real, it hurts, it is full of challenges and struggles, it’s invisible to a majority of population since the destruction takes place inside the body. People found it difficult to believe that at the time of my first Optic neuritis attack only 8% vision was intact in my right eye as the eye “looked” absolutely normal. I had to take intravenous steroids for five days to bring down the inflammation which made me put on a lot of weight but helped me get back my vision though not fully.
From that very first attack till date I’ve had so many relapses of MS attacks in different parts of my body that I’ve lost count of it. And every time it was the dear IV Methyl prednisolone which became my saviour. People are so scared of the term “Steroid” but in my case it is the only medication that can help at the time of a flare up. But the treatment has its own downside, it comes with its own bad side effects which takes months to wear off, it weakens the bones, affects your sleep, increases your appetite, and in my case it also resulted in an early onset of cataract in both the eyes. I recently underwent a cataract surgery in both my eyes to correct my vision.
The MS was very aggressive in the first 10 years of my life with 2 to 4 relapses in a Year I was practically living in the Hospitals half of the time. It was the same time came a point in my life where I had to take a very tough decision between having a child and my health as I already had miss-carried and also had to undergo an MTP as the pregnancy and Optic neuritis relapse came together or rather it was a pregnancy induced relapse as the Dr. put it……..I chose my health and decided against having a child. Don’t judge me on it. It was the toughest decision of my life.
Let’s fast forward and come to the present day …….As of today I deal with a bone crushing fatigue that never goes away, numbness of different parts of my body, pain, imbalance, bladder problems and the vision issues each and every moment of every day…….yet I choose to wear a smile 😊 much of the time, and go on with my daily routine without complaining, that is my way of surviving with the disease, but that doesn’t mean the disease isn’t there. It just means I am doing a pretty good job covering it up. You see the mask I wear but let me pull off the mask for a moment. I do get fearful, weepy and scared sometimes. Lingering in the back of my mind is the fact that one day my future will be drastically different than it is today. MS is progressive. That means that although today I may be moving around fine, seeing things okay, tomorrow I may not. It may take a year or 20 years, but my life is changing every day. I haven’t been very forthcoming about my illness or you can say I am quite protective about it but if someone asks I answer about it very honestly……But it really pains me when some people, within a minute of hearing about my struggle tell me that they understand it and compare their flu symptoms with my MS!!……To those I would like to say…..Dear all, MS causes some real nerve damage In the brain and spine of the sufferer causing continuous chaos throughout the body which is hard to decipher and it cannot be compared with any of your seasonal illness. Please don’t do that. I am living with a chronic progressive incurable disease. That means it’s not going away unless a cure is found….and no there isn’t a cure yet. All those supposed cures available online, aren’t cures. They are either symptom management techniques, wishful thinking or money-making schemes. Nothing has been found to completely remove MS from someone’s life. Nothing aside from a miracle…… I have my bad days and at times terrible, horrible really awful days. Getting out doesn’t make them better. In actuality going out has the potential of making them worse. Me doing more will not make my MS symptoms less. Yes, exercise is important, but it has to be done carefully. That old saying “no pain, no gain” doesn’t work for me. If I get to the point of pain, I’ve pushed too far, and my body is going to rebel for days, if not weeks. I have to do everything carefully and with great planning. Sometimes my bad days happen within minutes of a good moment. That’s just how rebellious my body can be……So please think twice before telling me that I need to get out more or I just need to lose weight to feel better. That’s not the cause of my struggle and it is not the answer to my pain. Before judging me for my bad days, bad mood or even my bad responses towards any kind of insensitivity about my illness, keep these things in mind……Please…. I am the same person I was before my MS diagnosis. I am intelligent, caring, full of fun, loving, sensitive, ready to laugh at any given moment and a great friend. I also have the potential to be angry, moody and frustrated. All still part of who I am. I would like nothing more than for MS to be cured, but as of today that really doesn’t exist. Please don’t look at my disability as if that’s all that I am. I am still me….MS and all. The only difference is that I need a lot more love, support, care and understanding. I would much rather have someone fighting alongside me than against me. Rashmi Balraj Saigal – MS warrior Designation – Home maker – A qualified Chemistry teacher and coach who taught senior sec. Students for 15 years. Now a full-fledged Dog Momma saigalrashmi@yahoo.co.in
Let’s fast forward and come to the present day …….As of today I deal with a bone crushing fatigue that never goes away, numbness of different parts of my body, pain, imbalance, bladder problems and the vision issues each and every moment of every day…….yet I choose to wear a smile 😊 much of the time, and go on with my daily routine without complaining, that is my way of surviving with the disease, but that doesn’t mean the disease isn’t there. It just means I am doing a pretty good job covering it up. You see the mask I wear but let me pull off the mask for a moment. I do get fearful, weepy and scared sometimes. Lingering in the back of my mind is the fact that one day my future will be drastically different than it is today. MS is progressive. That means that although today I may be moving around fine, seeing things okay, tomorrow I may not. It may take a year or 20 years, but my life is changing every day. I haven’t been very forthcoming about my illness or you can say I am quite protective about it but if someone asks I answer about it very honestly……But it really pains me when some people, within a minute of hearing about my struggle tell me that they understand it and compare their flu symptoms with my MS!!……To those I would like to say…..Dear all, MS causes some real nerve damage In the brain and spine of the sufferer causing continuous chaos throughout the body which is hard to decipher and it cannot be compared with any of your seasonal illness. Please don’t do that. I am living with a chronic progressive incurable disease. That means it’s not going away unless a cure is found….and no there isn’t a cure yet. All those supposed cures available online, aren’t cures. They are either symptom management techniques, wishful thinking or money-making schemes. Nothing has been found to completely remove MS from someone’s life. Nothing aside from a miracle…… I have my bad days and at times terrible, horrible really awful days. Getting out doesn’t make them better. In actuality going out has the potential of making them worse. Me doing more will not make my MS symptoms less. Yes, exercise is important, but it has to be done carefully. That old saying “no pain, no gain” doesn’t work for me. If I get to the point of pain, I’ve pushed too far, and my body is going to rebel for days, if not weeks. I have to do everything carefully and with great planning. Sometimes my bad days happen within minutes of a good moment. That’s just how rebellious my body can be……So please think twice before telling me that I need to get out more or I just need to lose weight to feel better. That’s not the cause of my struggle and it is not the answer to my pain. Before judging me for my bad days, bad mood or even my bad responses towards any kind of insensitivity about my illness, keep these things in mind……Please…. I am the same person I was before my MS diagnosis. I am intelligent, caring, full of fun, loving, sensitive, ready to laugh at any given moment and a great friend. I also have the potential to be angry, moody and frustrated. All still part of who I am. I would like nothing more than for MS to be cured, but as of today that really doesn’t exist. Please don’t look at my disability as if that’s all that I am. I am still me….MS and all. The only difference is that I need a lot more love, support, care and understanding. I would much rather have someone fighting alongside me than against me. Rashmi Balraj Saigal – MS warrior Designation – Home maker – A qualified Chemistry teacher and coach who taught senior sec. Students for 15 years. Now a full-fledged Dog Momma saigalrashmi@yahoo.co.in
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