Living with multiple sclerosis

Published: January 26, 2012
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Living with MS is not easy. Everyday life becomes challenging; an uphill climb.

I suffer from multiple sclerosis. I also suffer from a cocktail of other ailments that such abbreviations bring. However you never know what or which. You spend endless hours every week with new symptoms that could fit into other definitions. There is a concoction of medications and an assortment of supplements that promise good health, but is there ever hope?

Never.

Hope is about knowing that the disease will go away. Hope is for the foolish. Here, there is fighting; there is preparedness; and there is perseverance. I must live as the capacitor that can store every iota of strength for my depleting years ahead.

I will persevere.

How do I begin to tell you my story? There is an ocean of words behind every one that I will write. I do remember that routine afternoon when things changed.

I was working on an art project on my computer when suddenly, I saw a strange grey blur around everything. We visited a number of ophthalmologists after this, only to be dismissed repeatedly that I was imagining my vision changes. Ultimately, the mind numbing headaches, the dimming vision and a lot of online help led me to believe I had optic neuritis. I felt pain when I moved my eyes, a pressure on my eyeball like it would explode and loss of colour; over the next few weeks my world became dimmer and dimmer. Ultimately, the edges around everyday objects began to separate, and I began to see two of everything.

After a painful wait, seemingly unintelligent doctors, we finally met a neurologist who told us about optic neuritis. Optic neuritis is inflammation of the optic nerve, which carries visual information from the eye to the brain. If the nerve gets inflamed, it damages the insulation around it (the myelin sheath) and may result in permanent vision loss.

That night, as my sister and I poured over the internet, we came across a website which warned that this is a fairly common symptom of multiple sclerosis (MS). I knew MS was something sinister, but nothing beyond that. The ground beneath my feet shifted. We shut the laptop and went to sleep. Unfortunately for me, as I bent my neck forward that night, an electric shock ran down my spine.

The Lhermitte’s sign, which confirms the neck part of the spinal cord has been affected by MS; the other shivers were my own. Knowing that something was wrong, but praying otherwise, I went in for my MRI. Lesions on my brain shined white on my MRI scans. They indicated scarring (sclerosis) in my brain where destruction of the protective myelin sheath had taken place. A further physical examination by the neurologist led to my diagnosis. I held his gaze when he told me. I accepted it easily enough. He must have put me in the box marked denial.

Learning about your disease is the easy part; living with it is a whole different monster.

The first step was to do something about the vision. I was put on intravenous corticosteroids, and gradually but surely the world came back into focus by my third dose. I learnt I had relapsing-remitting MS –  the good kind. Basically, my immune system was attacking itself and the protective layers (myelin) around my nerves were getting destroyed.

In medical terminology, this demyelination impairs the nerve functions of interpreting and receiving signals from the brain. Vague symptoms of demyelination in the brain sometimes begin long before the disorder is diagnosed. For example, tingling, numbness, pain, burning, and itching may occur in the arms, legs, trunk, or face. The sense of touch may be reduced. People may lose strength or dexterity in a leg or hand, which may become stiff.  Often the disorder slowly worsens, disabling some people, but life span is unaffected unless the disorder is very severe. Luckily for me, I would have periods of relatively good health alternate with episodes of worsening symptoms. As recovery during remission is good but incomplete, the disorder worsens slowly over time.

Since symptoms vary widely, sometimes people can go years before a diagnosis and therefore don’t receive treatment before much damage has already been done. There is no known cure for the disease. Patients are instructed to count on disease modifying agents that help prevent new attacks. As of 2011, six disease-modifying treatments have been approved by regulatory agencies of different countries, including the US Food and Drug Administration (FDA), the European Medicines Agency (EMEA) and the Japanese PMDA. The six drugs are interferon beta-1a (Avonex, Rebif), interferon beta-1b (Betaseron), glatiramer acetate (Copaxone), mitoxantrone (Novantrone), natalizumab (Tysabri) and fingolimod (Gilenya), the first oral drug available.  In Pakistan, Bayer Healthcare is providing a holistic solution by ensuring a consistent supply of Betaseron, home based nursing support for administering the injections, and physio-therapy. The drug is equally hard on the body, mimicking flu like symptoms to the extreme.

I took these injections for several months, then gave up. The drug was debilitating. In Pakistan, people who do not respond to Betaseron have to find ways to manage supply for other drugs which are not available through a dependable source. And doctors cannot help much further. Support groups are limited and mostly inactive. There is an MS support page for Pakistan on Facebook with 21 likes.

It is not that MS is uncommon in Pakistan. Infact researchers from Aga Khan University have just published data from the first in-depth study of multiple sclerosis in Pakistan, enrolling 142 patients. It is usually that people with MS don’t like to talk about it. The disease is hard to explain. There is little knowledge about it. Reactions may be hard to manage. Also, supporting other MS patients requires massive reserves of energy. People going through anger, frustration, denial, and depression make a hard disease harder to cope with. And so, many MS awareness months have passed silently by.

Living with MS is not easy. Unusual and sudden fatigue, numbness, tingling, a reduced sense of touch, pain or burning, itching, dim or double vision, weakness and clumsiness, difficulty walking or maintaining balance, tremor, uncoordinated movements, stiffness, unsteadiness, problems controlling urination and bowel movements, mood swings, inability to control emotions, mental impairment, memory loss, poor judgement and inattention are some of the varying symptoms of MS. Everyday life becomes challenging; an uphill climb. Planned events become harder to plan and predict.

I read up a lot but I was not ready for it; the heavy swing of a pendulum that will hit you each time with something frightening. I remember the first time my energy left me. Urgently and without warning, like being hit by a truck on a beautiful morning. Willing my arms to move, and my legs to listen; first lovingly, then angrily. The time when I could listen to the words of a loved one but could not put them together. Or the time when I got stuck in a moment with no idea about what had happened before and what was coming later. Living with crushing pain, yet interacting with people at home and work with a smiling countenance. Doing your how-do-you-dos, with endless pills.  Just keep going, says a voice. Going mindlessly at times. Wondering what it is like to be in another body. Sometimes the smiles run out.

How can you explain to someone, something that doesn’t have a fever, or that doesn’t bleed. How many times I have heard the words, “But beta, you look fine!”.

How do you explain to the loving and demanding relationships you have created around you?

The meter ran out today, I just can’t.

This blog was originally published here.

Sarah Omar

Sarah Omar

A Communications Specialist who has worked in the field of design, communications and Public Relations. She currently works for a USAID project and blogs at makingcalm.wordpress.com

The views expressed by the writer and the reader comments do not necessarily reflect the views and policies of The Express Tribune.

  • http://www.zaidzamanhamid.wordpress.com Zaid Hamid

    I had to google for what sclerosis means…Recommend

  • bee

    Brave lady! i totally understand ur feelings sara but i would still say that don’t loose hope! i know that treatment only improves the symptoms of autoimmune disorders like Multiple Sclerosis but the disease never gets off. Being a muslim, keep faith in Allah! who knows that one day u get up in the morning and u r told that now there is a drug available that can really knock off the disease. You can be a great support to the people living with MS n other debilitating diseases, share ur experience with them and let them know about the “do’s” n “don’s” n the way u have been fighting with the disease till date. Offcourse the treament does matter but the thing that a patient needs the most is the “emotional support”. it might sound a little cruel but this isn’t the worst yet, i must say. imagine a person whose body is paralysed below neck., ain’t u better than him? u hav still got some life in u sara! Come on, stand up n fight! u can do it! Be a role model to all those having MS n last but not least u r not alone!!!Recommend

  • Ifrah Mirza

    Dear Sarah, I hope and pray that Allah eases your pain and gives you health despite human failing to find a cure. I’m one of those people who have only heard about MS. Your article has helped me learn about something that may affect any of us. Prayers for you. Recommend

  • http://www.facebook.com/#!/pages/Jahanzaib-Haque/149352001744540?ref=ts Jahanzaib Haque

    I wish you the best in your struggle. Peace.

    Recommend

  • Pk

    Praying that you get alright. Very sad, your story.Recommend

  • Anonymous

    dont stop believing..Recommend

  • saima

    Prayers with you Sarah! May you be given more patience and strength. You are a brave girl. And you write really good too. Recommend

  • sars

    Hope your illness remains kind and better medical therapy is discovered for it. Hope that funding and reserach develop here instead of our usual solution of trying to “ban” disease rather than finding solutions Recommend

  • Paki-Away

    Sarah, dont lose hope, Inshallah things will get better and you have a long and amazing life ahead of you. 1 of my closest friends suffers from MS aswell, while she may not want to talk about it all the time, she is one of the most positive people i have ever met. Life is challenging im sure, but your story will provide hope for many many young people out there.
    Take care and good luckRecommend

  • Asmara Nomani

    Sarah is a true fighter and I see her everyday fighting her daily battle,with a gorgeous smile on her face!Infact someone like her gives strength and hope to a person like me to fight my own little battle…
    Way to go girl…we know with your faith and strength you will set an example for ones who are actually in “denial”…You are a role model for people who give up on life after such a shock,and loose the true meaning of it!
    There’s still alot of work needed for MS and you have the courage to accept it,fight it and create awareness for everyone!
    Bless You!Recommend

  • http://www.sabahat24.blogspot.com Sabahat Zakariya

    You have pointed out a big problem in Pakistan, the lack of support groups of any kind of problem. Here nobody is willing to be proactive about such things. It is a great loss for all. I wish more people would be active in sharing their experiences with people similarly afflicted (in any way).

    This was a beautifully written and brave peace. Thank you so much for writing it and sharing it.Recommend

  • Fatma

    Sarah
    you are a brave woman and may you remain steadfast in your struggle to have a good quality of life. Please continue writing and sharing your thoughts. This blog has been so informative about MS and its symptoms, which afflicts many, but is rarely understood. Keep smiling!
    All the bestRecommend

  • Maleeha Azeem

    Kudos to you for writing this article and sharing your experience. We all need to know more about MS, and this article humanizes the experience of living with MS, and makes it relevant and immediate for those of us who know little about it. Thank you for sharing this. Anyone who reads this will be in a better position to understand and support friends and families who live with MS, and that’s an achievement of which you should be very proud. Well done! :) Recommend

  • Ali

    Im happy and My eyes are filled sara! My love and prayers are for you, You are symbol of braveness for my family and we know why.. only thing to win over MS is the love of life,, Sara oneday you would wake up free of it, if you have such brave heart.. drugs would assist but the healing would start from your inside, the desire to live and live happily is the only drug which already u have in your heart and we have no doubt you would win..Inshallah.
    love you..Recommend

  • Silent Sufferer

    It is the tragedy of humankind that they do not understand pains and diseases and ailments which are not obvious, such as yours.

    I see visual snow 24/7, vitreous floaters/opacities, tunnel vision, yet I am fine. I am fine to the world, to my surroundings, to my university colleagues, and am expected to perform at my best.

    I will not let anyone else know about my ailments, unlike you. I will not appear weak, stupidly designed by evolution, I will not unveil my evolutionary and genetic flaws to others around me. But like you, I will fight to live everyday and take what is mine, no matter how much a healthier bastard tries to snatch it.

    Good luck to you in your life. Recommend

  • Misha

    My heart goes out to you.Recommend

  • Dee

    I know you don’t need sympathies, just cure. My prayers are with you that Allah lessen your pain and bless you with health.Recommend

  • Silent Sufferer

    Look at all these “my heart goes out to you” foolish comments. Would your “heart going out” take away the suffering of Sarah? No. You are indulging in your healthy life. Recommend

  • Omar

    What you have written is so incredibly powerful.
    It resonates because it is true and heartfelt.

    You are the bravest person I know.
    And together we will prevail in this fight. Recommend

  • http://syedaabidabokhari.wordpress.com The Only Normal Person Here.

    You are a strong lady. You will through it. Just dont lose hope.Recommend

  • Pinky

    thank you for creating awareness by narrating your own experience :) jazzakAllah!
    i hope the medical world finds a cure within 5-10 years & you get to enjoy a pain-free life :)

    meanwhile lets consider voodoo..lets transfer your problems to a would-be suicide bomber of TTP ;p now thats a beautiful smile :)Recommend

  • Mahboob

    An incredibly brave and courageous narration reflecting your inner strength. Even though you suffer you deem it essential to highlight it for the benefit of others while gleaning a bit of comfort or solace. Great….You have propelled me to go in for further investigations myself.
    My belief remains strong that Allah Himself provides an answer to our worries and He alone has the Power to rid us of all afflictions……I give myself into His Hands..
    Stay well girl….He will surely provide you with an answer.Recommend

  • Jahanzeb Effendi

    I have come across patients belonging to the lower socioeconomic group visiting the Civil Hospital Karachi Neurology Out Patient Department. As a student I examined a young, married lady who came in with two young kids and her husband. I examined her. She complained to upper limb weakness, especially decreased gripping strength. As a student I presented the case to the attending physician who immediately knew the lady was suffering from MS. I was shocked . That was my first encounter with a patient in just 2 days of OPDs.

    However, what troubled most was that after prescribing the medication, the attending physician told me to refrain telling the patient that she suffered from M.S. I was very confused and was explained that its ethically unfair to hide it from the patient, but in our society, especially with the lower socioeconomic group, risking telling the patient would devastate her life. Not just herself, but her immediate surrounding will not accept her. She might be divorced, kicked out of her in laws and would eventually die in depression and despair.

    Such are the harsh realities we face in Pakistan.

    Sarah, life is unfair sometimes. But there are people who are surviving without the knowledge of this disease. That patient will never afford to get the treatment that would be available to you. There are countless patients. MS is under reported in Pakistan. May God give you strength to face your ailment and spread the light and hope for others. Recommend

  • Shafaq

    Hi,
    I don’t feel like telling you to continue to have faith because i see that you have it already and i don’t want to give u example of people who are suffering from worst ailments then yours (physically and emotionally both) as i witness it every single day myself but i surely feel like telling you how i felt when i read your blog…the strength of a human spirit which in case of adversary finds its initial reaction to be that of;feeling incapable of fighting and yet finds the strength to face it and continue to live with it .This is the only choice life gives us ;to continue till its written.. but there is a choice we do have ;whether to live with the things that we don’t approve of; in our lives (sickness ,heart ache, losses and so much more) happily or sulk at it and how admirable i feel you are that you have chosen the former path where you have found a way to express yourself impeccably with words and you choose to fight. I do feel thankful for the good days of your life(in between remission that is)..so i pray for the good days to last longer and the bad days to be full of thoughts and hope of good days.
    All my love to you.Recommend

  • Sarah Omar

    @Silent Sufferer:
    @bee:
    Dear Silent sufferer. My prayers for you. It is difficult to come out of the shell that protects us from probing eyes and minds. It is important to have a support group around you and let ppl know what kind of help you need from them. You dont have to suffer alone.Recommend

  • http://blogs.tribune.com.pk/author/430/faraz-talat/ Faraz Talat

    What sorry fool of an ophthalmologist was not able to detect a case of optic neuritis? I learned to do that in med school, how on earth can an experienced specialist miss the inflamed optic disc on a fundoscopic exam?Recommend

  • Parvez

    It’s nice of you to share the experience you are going through, so that others may be a little more aware. I wish you strength so that your burden becoms a little lighter.Recommend

  • Sara Sullivan

    What a powerful article: thank you for sharing and for opening yourself up honestly. It is beautifully written even as it is hard to read about your suffering. I am impressed with your toughness to keep up the fight and especially to process it in a public way so that others might benefit: that is very generous. Recommend

  • Sumiah

    Sara I completely understand what you are going through as I have had a similar experience. I was abroad in pakistan and I had the exactly same symtoms. I was diagnosed with Optic Neuritis.I was given a whole load of steriods which alhamdulilah worked and saved my eyesight. On my return to the UK I had the whole tingling in the legs sensations and so on. I have been to hell and back.They thought I had MS but then I was told it was Neuromylitus optica (Devics disease) which is a similar condition. Conatct me if you more info on my treatment and the specialist centre I have attended. I hope you recover and have faith for there is no bigger power than Allah. Recommend

  • nadya raza

    beyond the shadow of a doubt i see you fighting. I know you will persevere. I know that no matter how many curve balls life may throw at you, you have always been a fighter. Thank you Sarah for teaching me today about the courage and strength of a human heart that just wont back down, come what may. All my love and prayers to you. May He bestow you with more courage, more fight and more resilience. You will be a permanent resident in my house of prayers. Allah bless you and your loved ones. Always. Recommend

  • Mashhood

    I wish you hope and strength. Recommend

  • szi

    hi, hear surah rehman talawat three times every day. it is available on youtube and in mp3 format on different websites. best is by qari abdul basit. I am sure that it will help. ameen…Recommend

  • shaw

    There is nothing in Medical Sciences that cannot be handled
    .Please visit websites of Mayo Clinic and Cleveland Clinic and interact with online questions with their consultants
    .Please get a second opinion from a reputed institution (Mayo,Cleveland Clinic,John Hopkins)by going on their websites and using second opinion services
    4.Contact a Pakistani Neurologist here in US for further help-there are many who would help you-google pakistani neurologists in US
    do not be afraid-there is a solution to everything
    shaw
    Recommend

  • Nadiya

    Sarah, my brave girl. Thank you for sharing your story and helping us to understand your disorder! How deceptive neurological disorders can be, it is so difficult for others to comprehend pain that is not physically apparent. Always remember that what you suffer in this world erases your sins and makes you a better place in the Hereafter inshallah. You say you are a fighter, so don’t lose hope! Despite the fact that I am a doctor, I always say that there is so much we do not know about disease, especially immunological disorders. If you are not satisfied with what medicine has to offer, you must explore alternative therapies, in particular look at dietary changes and nutritional supplements. We are realizing more and more how much of a part the gut plays in immune disorders. My prayers are with you. May Allah give you strength!Recommend

  • Happy Harry

    Dear Sarah,

    I’d like to take a moment to salute you and all the people who are living with a degenerative disease, and I pray to Allah that he cures all of our ailments (Aameen).

    Warm Wishes!
    HarryRecommend

  • Sarah Omar

    @Jahanzeb Effendi:
    Dear Jahanzeb,

    Thank you for telling me about this. It is sad, but your supervisor seems like he was a very wise man. MS management is expensive. I have thought about it often times. i know i am lucky that i can afford medication. I dont know how ppl with lesser incomes cope with the disease, mostly i dont understand how they can even get diagnosed. MS diagnosis can take years, even with most intelligent follow-up.

    But he is right. She might be divorced, kicked out of her marriage and die of despair. You will be surprised how strong the stigma is in higher earning households. People do not want to divulge a disease their daughter may suffer from for fear she may not get married or face other social issues. It is seen as a social weakness that can affect her prospects for marriage and work.

    I commend you for bringing such an important aspect of this to light. I hope other people, perhaps doctors, healthcare practitioners will have something intelligent to add to this.

    Maybe you would like to do some research and write about it.

    Thank you and best regards.Recommend

  • Sarah Omar

    @bee:
    Thank you for your support Bee. I know there is a lot of ongoing research on MS. The Cleveland Clinic is especially known for specializing in autoimmune disorders. But research takes years of clinical trails and safety with any new treatment can only be studied over a period of years. But i do plan to write about the things you can do to manage it more effectively and how you can try to lead a near normal life. :)

    Best.Recommend

  • Ghulam Dstagir

    Our holly Quran Says “Or Allah ki rehmat se na umeed mat hona”. This is our believe sara only Allah can prevent us by every diseases in the global. I wish to May Al-Mighty Allah bless you.Recommend

  • Yasser N.

    What a brave person you are! Thanks a lot for sharing your pains. May God bless you with more courage and strength.I pray for you Sara. Yasser N.Recommend

  • Hameed

    It takes alot of courage to accept and live with a debilitating disease like MS. I truly understand the social aspect of trying to explain a disease about which not many ppl have awareness. I pray and wish you the best. May you lead a healthy and happy life. Recommend

  • Sarah Omar

    Beautifully written by my beautiful brave Sarah ! MA.
    I see you , feel you , hear you .. know and believe in the courage and power you possess with which you shall live a full wholesome life with your family , friends and loved ones .. as you already are ! With a smile so beautiful it makes our day more lovely !
    With continued research , alternative therapies , bravely trying out anything and everything new with courage and hope and still moving forwards with more …
    The knowledge , understanding , acceptance of your disease .. having the love and support of people who matter and being blessed with the means to live through it .. with an intelligence that might actually have us see the cure in due diligence by yours truly ! :)
    Love you and have you in my prayers , everyday !
    May Allah bless us all with good health and make our path easy for us .
    Ameen .Recommend

  • http://peddarowdy.wordpress.com/ Anoop

    What a terrible disease. My Aunt, a sweetheart, is affected by this. She cant even move her legs or arms properly, confined to a chair and cant even sit up straight without help. It just aches me to see her like this.

    On top of that, my Uncle, a middle class retiree, has spent everything he has to make her life better. I only hope I can make enough money someday to help them out.

    I cant imagine what her future will be like. I only hope they find a cure, or atleast a way to either prevent or stop its terrible effects.

    May God bless the people who are suffering from this.Recommend

  • http://www.facebook.com/shabbera Shabber

    Sarah, I am going to be visiting Pakistan next week. As a medical student I am trying to get information on existing projects in Pakistan that can lead to increased public awareness on various health topics including for instance MS as you have quiet boldly and courageously been tackling given the lack of diagnostic and management infrastructure there. Can you send me an email with further detail as to any existing facebook link and/or contact information with support groups who I could contact once I reach Pakistan? That would be appreciated. My email is [email protected]

    There is a lot that can be done, I think its just a matter of getting the public involved and bringing the people with MS out from the shadows.

    Regards

    Shabber Recommend

  • Aamnah

    Very couragous of you to write that piece Sarah! All my prayers with you..hope and pray that Allah gives you health and eases all your pain .. Inshallah!Recommend

  • farhan

    My prayers are with you but dont you lose hope lady!! Live your life and v brave of you to write this :)Recommend

  • http://www.wowelldone.blogspot.com Baji

    @Jahanzeb Effendi:
    Your comment was really informative. ThanksRecommend

  • Bee

    @Jahanzeb Effendi:
    Whatever u said is unfortunately true. i am also a doc and i have seen so many cases, when the family n even the doctors offer no mercy to the patient and this is more fatal than the disease itself. Illiteracy is the biggest factor behind this abandonment., because in most cases people have no understanding of the disease. We doctors can really make a difference by helping the patient and his family understand what the disease is, whether its contagious or not, could it be genetically transmitted to the offsprings or not, treatment options, complications and the best we could give to him is the emotional support.
    @ Sara Omar:
    As i said earlier u r not alone! i n many other people r with u :) i read it somewhere “Pain is inevitable, suffering is optional.” hope u get my point :)
    Stand up n fight for urself n for those who need u!! Recommend

  • Sarah Omar

    @Shabber:
    Dear Shabber,

    It is something i have been trying to do ever since i got diagnosed. I have ofcourse been in two minds about how much i can disclose about myself and my disease, in the process. But if everyone is afraid we can never get anywhere. I would love for better awareness on the subject. For people to be able to share and discover things that work and things that dont. an.

    Can we bring the people with MS out of the shadows? Can we connect them better with better resources. Can we teach caregivers how to help. Can we teach others about common sensibilities. C I look forward to your trip to Pakistan.Recommend

  • Fatima Najeeb

    Sarah, such courage, determination and strength, you really are amazingly unique.

    It is never easy to open your hearts to people. You have done it with ease. Remarkable!

    I’m sure it has touched many hearts and proves inspiring for a lot of people. I have found this so extraordinary and that too at so many levels. You have inspired me at a very crucial point of time of my life. I thank you for that, my friend.

    You will do fine InshaAllah. All our love and prayers are with you in this struggle.Recommend

  • kaalchakra

    Sarah

    Thank you for this amazing piece. I wish you every luck and every success in confronting your challenges. You should know that by writing about your experiences, you have provided inspiration to many of us who are far far luckier in health.Recommend

  • http://sumaiyahasan.blogspot.com Sumaiya Hasan

    Hello Sarah!I read your post and i dont know what to comment.I have studied about multiple sclerosis in my 3rd year and I understand how diificult it is to live with it.But I must say that you are such a brave lady and moreover inspite of all your tensions and worries regarding this problem of yours,you managed to post here and create awareness regarding the symptoms and specially about the medicines.Most of the people otherwise think like you that its just some eyesight problem.All my support with you.May God help you fight it and give you lots of courage.Wish you happiess and health.
    Regards,
    Sumaiya HasanRecommend

  • Raza Khan

    Sarah..it is extremely hard to read about your suffering, about which I’d never known about during my time at FIRMS. I’m very impressed by your courage and strength to face this travail and by generously sharing your experiences so others can benefit from it. Just stay positive and remain strong as you always have been..my prayers and best wishes are with you. May God help ease your pain. Keep smiling! Recommend

  • Salman

    Sarah, It was so painful reading about it, how difficult going through would be; actually i can’t even imagine. lots of prayers and good wishes for you…may Allah give you courage and resilience to deal with it…keep fighting.Recommend

  • Mariam Chughtai

    In a moment of utter despair, i asked my brother, how do you go on when life throws so much at you? His answer changed so much for me, He said, “One day at a time”. Because all you need is the courage for one more day. If my brother told me what i should do, you have showed me how its done. Beyond MS, Sarah, you’re an inspiration to so many of us and in so many ways.. many of whom you will not meet and many of which you don’t know about. With gratitude, Mariam. Recommend

  • Maria

    Avery well written and touching article. I hope that advances in gene therapy may yet effect a cure in your lifetime. As you point out, you have the relapsing-remitting form of MS. One of my childhood friends is virtually wheel chair confined due to the illness.Recommend

  • kaalchakra

    You know…this might be a place to speculate…I have known a few individuals who have been challenged by MS. And they have been all, each one of them, the nicest, loveliest, smartest, most unforgettable people you will ever find…Of course, I am generalizing from a biased sample but I wonder if there is something to it.Recommend

  • Nadir

    Dear Sarah,

    You are truly very strong. And i sincerely pray that you stay that way for the future. Very well articulated blog.

    Take care. Recommend

  • Riaz

    God bless you and Sara i am advising you Dua . recite it frequently .InshALLAH you will be fine very soon.Ameen
    “Rabbi Shrahli sadri, wa yassirli amri wahlol ‘uqdatan min lisani yafqahu qawli” (Qur’an- 20:25-28)
    “My Lord, open my chest for me, and make my task easy, and take away my handicap in speaking, so that they may understand what I say.”
    Recommend

  • Hassan Shabbir

    This life is so unfair. V can c this all around us. But you should not lose hope as rightly pointed out by one of the readers a wonder drug can come me time. Use ur disease to com closer to God. Life here after won’t b unfair that’s for certain!Recommend

  • Sarah Omar

    @Asmara Nomani:
    @Omar:
    @nadya raza:
    @Fatima Najeeb:
    @Nadiya:
    @kaalchakra:
    @Pinky:
    @Fatma:
    @Sabahat Zakariya:
    @Paki-Away:
    @sars:
    @Anonymous:
    @saima:
    @Ifrah Mirza:
    @Sara Sullivan:

    Friends,

    I am so happy you understand the intent with which i have written the piece.

    The reason i wrote this, especially under my own name, was to spread some awareness, and help people stop being afraid to tell others they have some unknown ailment. Help them understand the kind of support they may need.

    Today, the blog desk informed me that my blog post became the number one blog on tribune. People have actually started looking up MS and optic neuritis; as they appear in hot topics in the side bar.

    My blog also got picked up by the MS Awareness Project. But more importantly, the change i want to see is in Pakistan. Where anything unknown is a stigma, and its expression is avoided, frowned upon or dismissed.

    People have a hard time trying to understand what other people are going through, some rarely have the patience; and in grave reality it is a fast fast world where everyone is trying to do their own keeping up.

    Cheers to you all.Recommend

  • Aaron

    Hey Sarah,

    I had no idea you had been diagnosed with MS. I read the whole article and thought the writing was brilliant. I wish I could write like you! I always have to pay someone else to write for me! should have listened in school!

    I hope that the Doctors can ease your symptoms and that the medicine doesn’t have bad side effects, and that your family/friends in Pakistan will support you.

    If you ever fancy a trip to the UK you are welcome to stay :)

    Keep us updated with your progress.

    Aaron xRecommend

  • Maaham

    The day you lose hope is the day you lose entirely. Don’t let this disease take over, overcome it and you will be a stronger person. Even though you feel it isn’t getting better, you should still think to yourself ‘I will overcome this and nothing is impossible.’ Living with this disease, like you said is a whole different monster, but isn’t it like that with everything? In the beginning it scares you, angers you, makes you feel hopeless, but as time goes on you realize that there are ways for you to conquer this and eventually surpass it.
    Have faith Sarah baji. Your health will improve. I know it will. Recommend

  • bushra

    @Sarah Omar:
    hey i wrote this ! :) Recommend

  • bushra

    i was referring to the my comment post above that appeared in your name . my apologies .Recommend

  • BRUISED INDIAN

    Ms. Omar; I am taking it upon myself to do some research for you here in India (New Delhi), more out of courtesy and trying to do something meaningful during my vacation here, please allow me the honor of doing so.

    You have my email address or the moderator / administrator shall provide it. I envision I shall come up with something in the next 48 to 72 hours.

    By the way.. I didnt have the heart to read your blog after the first few lines…. however would like to say that I am humbled by your courage and determination. Recommend

  • Dr A K Khan

    The famous physicist Steven Hawking has MS but has not stopped him making great contributions to science.Recommend

  • Syed Muhammad Imran

    Dear Sarah,

    You are for sure one brave lady. I have known you for some time but never could I tell that you were suffering. Hats off to you and your will to go on.

    Let me assure you that one day you would fight this disease and win this battle. Allah SWT is with the brave.

    I would pray for you!!!Recommend

  • Humanity

    Sarah,

    Your courage gives us hope in human perseverance. I would like to share this piece that I watched today .. There is a mention of MS in this remedy ..
    http://www.cbn.com/media/player/index.aspx?s=/mp4/LJO190v1_WS

    You will be in my prayers. All the best!Recommend

  • Sarah Omar

    @Paki-Away:
    Dear paki, I’m sorry that you close friend is suffering. Is hers a more serious form of the disease. You can tell her I would love to talk to her if she requires any advice or support in my power to give. Best.Recommend

  • Sarah Omar

    @Mahboob:
    I’m sorry I was not able to respond to your comment earlier. I thank you for your support. I realised u mentioned u were going in for further investigations. Maybe you would like to explain and someone in this thread may be able to provide help or guidance.Recommend

  • Sarah Omar

    @Dr A K Khan:
    I am so pleased to see a doctor comment on this blog. I was wondering when that would happen.

    To your comment I would say Stephen Hawking is a genius; I am not.

    However, hawking, who is known to say that heaven is a fairy story was asked by an interviewer for the guardian.. So now that we are here,What should we do?

    “seek the greatest value of our actions” he said. Recommend

  • http://www.facebook.com/shabbera Shabber

    @Dr A K Khan:
    @Sarah Omar: Actually Stephen Hawkings does not have MS, he has a motor neuron disease related to AML (Amyotrophic Lateral Sclerosis) – which is characterized by progressive combined upper lower motor neuron deficits especially in the Ventral horn of the Spinal Cord. AML is also known as Lou Gehrig’s Disease. Basically person looses most if not all motor control over their body, but all sensation remains intact. Its kind of like trapped in your body. MS only impacts the nerve sheaths of your central nervous system, not peripheral nervous system, therefore the symptoms do not mimic paralysis. Recommend

  • Sarah Omar

    @Shabber:
    Thanks shabber. I think we know that, but the point being made was of a different nature. When are u due in Pakistan.Recommend

  • Maria

    very moving! Sarah… stay strong :)Recommend

  • http://www.facebook.com/shabbera Shabber

    @Sarah Omar:
    I am arriving Inshallah Friday morning :) Feb 3rdRecommend

  • Faryal

    Sarah, I suffer from MS as well; possibly the same symptoms as your’s. Only we know that as much as we try and explain people what we have gone through or go through every day, it will never be enough. But, I guess that’s alright, is it not the case with every disease/condition. Its alright to know that we have this, accept and live life to the fullest. That’s what our religion teaches us as well, live every day as if it were your last. Sad, that I had to go through such a condition to understand this, but at least I did. Don’t know what my future is going to be like but right now I know that life could not be more perfect. I am blessed to have the most amazing family, I am set to be married soon to the most supportive guy and to be a part of his family who are as supportive as my own. I work as passionately as I used to, socialise, etc etc as normal as i could be. Couldn’t ask for anything more and can’t thank Allah enough for what He has given me. So, if it living with MS, that’s alright; just ‘blessed’ that way :)Recommend

  • http://www.msdwteam.com Majid hasan

    InshAllah Allah will help you !Recommend

  • Nida v Leersum

    Sarah,

    It was important for me to read and understand what you are going through – but it made me also realise that despite your daily struggle and fight, whenever we talk on the phone you sound so cheerful and happy – one would never guess anything is wrong. Thanks for sharing. It is really a beautifully written article and I am certain it will inspire many others. Love. N.Recommend

  • Humanity

    I urge all to watch the video by Dr. Terry Wahls – “Minding Your Mitochondria”

    http://www.youtube.com/watch?feature=player_embedded&v=KLjgBLwH3Wc

    She is a living proof of reversal of the debilitating effects of MS through changing her diet. Recommend

  • Sheri waqas

    You are one brave woman Sara,fighting not whining……..could have easily said….why me?may ALLAH AlMIGHTY give u strength and inner peace….somehow I am so ashamed of myself,cribbing even when I catch a coldRecommend

  • Muhammad Zahoor

    Sarah
    You are a courageous lady and I am sure you will overcome the problem. We will try to promote the message for awareness raising in this regards.
    Warm regards
    ZahoorRecommend

  • KamiSyed

    Its very courageous of you to live with MS and deal with it every day knowing there are not cures available. You sure have remarkable strength and courage because you never show any signs of weakness and feel to be so happy and live. I think you blog helps a lot of people in understanding MS and then knowing how to cope with. I wish there are more support groups in Pakistan because it realy helps other patients to learn from the experience of patients who suffer from a medical condition. Years ago at the prime of my youth I was diagnosed with hepatitis. Even the Doctors didn’t knew much and was not a big help since they just told me to home and live with it. It wasn’t until after a year later I started proper treatment and there were many ups and downs during the whole time since hepatitis too is not a completely curable condition. It was support of family and friends and the knowledge and self research I did on internet helped me survive the whole phase. Recommend

  • Faraz Fareed

    I dont know what can i say to that will make you feel better, to be honest i have no such thing to say to you but what i can tell you is that having the courage to carry on with life with such bravado under such mitigating circumstance requires courage that is beyond my comprehension.
    I can only hope for the best for you and tell you that you will always be remembered in my prayer. May God be with you and give you courage to continue your journey with the same brimming confidence.Recommend

  • http://www.facebook.com/shabbera Shabber

    @Sarah Omar:
    Dear Sarah,

    Would it be possible for me to visit or interact with MS patients that you know during my visit to Pakistan. I would like to meet to better understand their unmet needs so that in the future I can advocate more efficiently in larger forums vis a vis this disease and others as well. My current knowledge-base regarding the overall paradigm of medicine is very limited due to my insignificant amount of time spent in the country.

    Please do let me know.

    Regards

    Shabber Recommend

  • AK

    Sarah….I’m an Indian based in UAE..Deeply moved by your article. Just to tell u, my wife has been diagonosed with MS for the last 6 years, and somehow we are trying to fight off this disease. So far, we have had limited success, but yes, we have been able to keep several problems at bay.

    Have you looked at alternative form of medicine…For ex. Ayurveda…or Chinese Accupunture, or probably chiro…or even the banned drug- Low Dose Naltraxone (LDN)
    The drugs u’ve mentioned have too many complications and side effects…More so, You’ve gotta take a closer look at the economics behind it…Look at the prices for these drugs!!!
    For sure, their goal is to generate millions of dollars…it seems finding a cure for MS is not in their interest, as a cure may lead to collapse of all these pharma-giants.

    I strongly suggest you look at something known as the ‘Liberation Therapy’, or CCSVI. Although some further research needs to be done on this, majority of patients have had positive results.
    Its all about how you manage your symptoms. U’ve gotta stop thinking something known as MS exists…just work on managing symptoms through strong diet regime and alternative medicines that have almost NO side-effects.
    Look at the option of visiting India.

    Wish you success in fighting off this so-called disease.Recommend

  • Sabika

    My dearest Sarah! You were always a very special girl… reading this article has increased the respect I had for you. You are a symbol of strength and life for everyone! May Allah bless you with the best of everything – u deserve it for being so patient and strong! Recommend

  • Sarah Omar

    @Faraz Talat:
    Dear Faraz,

    I’m impressed. Where did you go to med school. And how did all the senior opthamologists miss the signs.

    It seems the younger ones are more up to date and careful with their analyses.

    Best,Recommend

  • Sarah Omar

    @Anoop:
    Dear Anoop,

    I’m sorry about your aunt’s condition. Would you be willing to talk about it. Would she? What kind of treatment is she pursuing. And what kind of MS does she have. I would like it if you contacted me directly. :)Recommend

  • Sarah Omar

    @Shaw,

    I am so happy you know so much about treatment and education options. My husband and myself visit the Cleveland clinic website from time to time to discover, and discuss new options that can improve our quality of life.

    Are there any good Pakistani neurologists you are aware of who would be willing to be part of a transatlantic online circle to help not just me but others with the ailment.

    Best,Recommend

  • Sarah Omar

    @kaalchakra:
    Hmm..its simple kaalchakar, being in pain, and reflecting about the frailty of human existence is a humbling experience. It changes you.Recommend

  • Sarah Omar

    @BRUISED INDIAN:
    Dear Bruised Indian,

    Thank you so much for taking it upon yourself to do some research. I have heard of so many strange and miraculous cures coming out of India. And i have wanted to visit not just India but China as well.

    Please let me know what you discover. I dont think the moderator will provide your address but you can post it in your comments on the blog.

    I think i should cross my fingers :)Recommend

  • http://peddarowdy.wordpress.com Anoop

    @Sarah Omar:

    Sarah, I dont know what type of MS she is suffering from but will try to get the info.

    She is trying out homeopathy and the results have been terrific! She is able to walk, my Uncle says and is able to go around the house without any help. More progress is expected, according to the Homeopathy Doctor.

    I will try to get as much info as possible. I do know that she is being treated by a Neurosurgeon in Narayana Hrudayala in Bangalore.

    My email is [email protected]. Please feel free to drop a message so that we can exchange emails.(If my complete comment goes through).Recommend

  • Vikram

    Sarah, hope also means a cure may be found, I just saw on Internet stem cell research is being started for.remyelination and neuronal repair. Look for latest research and latest treatment of mutltiple scelrosis. Probably you know all about what I mentioned, I just wanted to share. Check more info on stem cell trial at msrcny.org/stem-cell-trial-spotlightRecommend

  • Vikram

    You should also explore yoga option. Search yoga and MS. msactivesource.com/ms-yoga.xml. I think this website has some free yoga DVD, Recommend

  • Sarah Omar

    Dear family, close friends and others who have posted here,

    Thank you for all your support. It means a lot to me that this message has spread so widely and so many of you have helped me do it. Please remember, anyone in pain or who is suffering needs support. It does not have to be a disease which is the greatest demon in someone’s life but anything else which may be far more debilitating. Disease is the final expression of the body that something was wrong. And now it is failing.

    In my case, in addition to many, my caring husband and his enduring, inexhaustible support and fight for me, with me, has kept me going.

    If god has given us enough energy, resources, faculties, or talent; however much of it; we can all be somebody’s anchor. It is the only way we can change the greedy ways of this world. I try everyday, to find someone who needs my help, and do the best that i can.

    You all can do that too, in your own little ways.

    Kindly leave your emails in your comments if you know anyone who is suffering from MS, or is themselves. Also if you are aware of new research, or are a doctor who would like to become part of an MS support family.

    Best regards,Recommend

  • Raza Bangash

    Praying for you. Allah bless u and stay strong. Recommend

  • http://www.alternativefueltechnologies.net Khan Tasadduq Hassan Golra

    Sarah you made me a lil worried about yourself but yeah gr8 awareness you’ve created. No doubt a very strong article of yours gave me an appetite to think about myself, I felt same symptoms and I think its affecting my vision as well. Now we all pray for you to recover and off course we had a gr8 time togather. Life has never been by choice, but these are the tutorials. Your being that brave is highly appreciated as you have seen the comments. We love you

    Fee Amaan AllaahRecommend

  • http://www.alternativefueltechnologies.net Khan Tasadduq Hassan Golra

    Sarah you made me a lil worried about yourself but yeah gr8 awareness you’ve created. No doubt a very strong article of yours gave me an appetite to think about myself, I felt same symptoms and I think its affecting my vision as well. Now we all pray for you to recover and off course we had a gr8 time togather. Life has never been by choice, but these are the tutorials. Your being that brave is highly appreciated as you have seen the comments. We all love you

    Fee Amaan AllahRecommend

  • Saleena

    Yours is truly an inspirational story Sara Baji. By accepting your condition and not losing the will to live.. you have won more than half the fight already. May Allah shower His blessings upon you and give you the courage to keep on striving. Ameen. Best regards and prayers. Recommend

  • Faysal H. Rizvi

    When!!!!!!!! How? Where r u?Recommend