Making Calm
I suffer from Multiple Sclerosis. I suffer from a cocktail of other ailments that such abbreviations bring. But 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. There is an assortment of supplements that promise good health. Is there ever hope. Never. Hope is about knowing that the disease will go away. Hope is for the foolish.
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.
More power to you girl!
I love you for the support 🙂
I am so so impressed with you Fatima. I have discovered you to be very wise with a heart of gold.
Dear Sara,
Any comment would be shallow in front of the challenges you deal with. May Allah increase your strength and the strength of those who love you to deal with MS. And my there soon be a treatment that puts an end to this scourge.
Thank you so much. And may there, inshallah be cures for other afflicted people in this world.
Thanks so much for your encouragement. It means a lot. And sometimes even a little bit can go a long way.
What can one say …
Thank you for your post and the comments you’ve made above.
Loads of admiration for the strength you’ve shown in this article … and good luck in all you do.
Perhaps hope isn’t foolish, Sarah. Things will not improve but I can hope that they won’t get any worse.
Zakintosh,
First of all thanks for appreciating the blog. I am so happy to know that today my blog became the number 1 blog on tribune, and people are actually looking up multiple sclerosis. 🙂
Hope is what you make of it. I like this quote
“We are all in the gutter, but some of us are looking at the stars.”
Best,
Zak,
You have said such a wonderful thing “Perhaps hope isn’t foolish, Sarah. Things will not improve but I can hope that they won’t get any worse.”
I will stick it on my wall at work 🙂
I have been up and down for past year with ms. I enjoyed your writing. You are not the disease.
Meter run out? hmm…..
Mine was running low, I couldn’t reach my feet to put in or tie my shoes in less than 5 minutes. I found the key to that. I hope you find yours.
I stopped eating pizza so I could tie my shoes.
I stopped eating pizza so i could tie my shoes. This made me laugh so hard.
And seriously, it is true, you must forgo some to enjoy some.
Thank you for making me smile.
It takes a great strength to go through this… day in and day out. my mother went through some of those symptoms after she had her brain tumour operation. it is a challenge but sometimes you have to take it one day at a time and you have to fight to stay happy 🙂
Mehar,
I hope your mother is better. I think you said it exactly right. one day at a time. because everyday is important.
I just wish I had the power to take people’s sufferings away. You’ll be alright.
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I came from Express tribune blog, very brave to write up and like i said dont lose hope lady!!
Thank you Farhan for reading my story. 🙂 I am glad it has led you to my blog where i will be talking about being a normal person with MS.
Thank you gentleman 🙂
I think that you have done a wonderful job putting into words what so many people with MS feel on a daily basis but have a difficult time expressing. My wife has MS and I see her dealing with so many of the same issues from the exhaustion, the endless stream of medications, to people saying “Your’re a young woman you obviously have nothing wrong with you so will you walk faster!” or “Look there is someone abusing the handicapped parking space – clearly there is nothing wrong with her.” It can drag you down. But please take some solis and strength in knowing that your words can help bring a better understanding of living with MS to people everwhere.
CE
I am so happy you understand the intent with which i have written the piece. I can understand all these incidents that you describe here. Having lived through them myself in one form or another.
People have a hard time trying to understand what other people are going to, 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.
As one whose dr *did* put a check mark in the denial box (after informing the intern that I must be in shock, she actually asked me who was the president of the country, and to say the alphabet backwards) I see you. Ive come to understand that to some, despite all love, you can explain until you are blue in the face, but they may never understand. Hold on sister. Hold on. Someone to whom you will have to explain nothing will reach out. If you can, just reach back. You wouldnt believe how many cannot endure for one hour, what we and our families go through each day. Hold on. big hugs (not the ms hug)
Dear Blu,
It is true, you can become blue in the face but no one can experience what you are going through. No one can live inside your body. Im really sorry to hear you are afflicted but you must keep doing the things that bring you pleasure in life and keep asking your loved ones for help. 🙂
I am really happy to read your experience of MS.Keep up the good work from Ethiopia
Thank you for visiting from Ethiopia 🙂 Please spread this message there.
Like i said earlier. I have had ms for a while now. I got it late in life….kind of like the age of “Monk” or Tim the Tool Man. So I kind of already have had a life.
I am not angry but…
Had I written the original post, I doubt I would had ended it with “The meter has run out”. I may have ended it with “Go to Hell ” or “Go to Starbucks”. That’s just me.
All the sympathy/empathy/understanding/pity/self pity/self awareness may be fine. But anyone can get a cup of coffee at Starbucks if they have 5 bucks. If they have 5 bucks and transportation. Not everyone has $5 and transportation tho.
Came here through Express Tribune, I totally understand your pain. As a Muslim, don’t stop believing in Allah, recite surah fatiha over everything you eat or drink. Make a family member do it. In shaa Allah you will see improvement. I honestly dont know what to say. Your blog made me cry.
Thanks for writing this. It was really thoughtful and well-written. You should take your writing seriously … you’re really good at it.
I will try to take out the time 🙂
Hareem,
I am so sorry to make you cry. I think perhaps it resonated with the feelings of many other people who may not have the disease bu are suffering from something they can’t explain. Best of luck in all your endeavours.
🙂
I am a 24 year old male Pakistani. I was always \’sun shy\’ and avoided milk products like anything. I was diagnosed with MS immediately after my graduation from uni. I an attck of optic neu. I was put on betaseron here in Karachi. After a visit to the doctor due to some weakness, he took a vitamin D test. I was deficient of it. So I started taking supplements and about 5-1min of sunshine a week. If not that due to the heat, I eat some sardines. Now it is normal.
But what I am trying to say is that were you also low on vit D? There is some correlation. I can feel it some how but cannot prove it.
Thanks Tman. Yes, there is definitely a correlation, but it is one of the factors. After a while you get to know your. I know my trigger is stress. Anytime, there is any kind of emotional, psychological, physical stress on my body i start to get worse.
I hope you figure out all your triggers too.
AOA every one………guys i m 38 years old…….i have motor neuron diseaese…..so what if i have…..Allah ki zaat paak haamaray sath hain…….muslims death se nahi durtay…cause death is a bridge btw us n pyaray Allah……sarah do u have any contact#?……if have then plz b in touch wid me.
My dear sister Sarah I can fell your pain
Its now 10 days i am trying to know much more about MS
can you call me at 923004480470 I am I Rawalpindi
My of my family member also diagnosed MS 5 days ago 32 years old
Need your help
Thanks
My Dear sis
If you are not able to call me please give me some doctor name who you think is good or best for MS in Islamabad or in Pakistan
Thanks
Dear Faraan,
Im sorry I have not been able to respond. Dr. Amir Ikram in Lahore is very good.
Hello Sarah Omar,
MS(Multiple sclerosis), A real bad disease to have. I would not say people but rather even most experienced doctors in Pakistan dont know about this. PIMS doctors dont know about this, I dont believe that AGA KHAN UNIVERSITY knows about this.
No one knows how many types are MS are there, Let me tell you , there are 4 types of MS. 1)Relapsing MS 2) Progressive MS 3) Secondary-progressive MS 4) Primary Progressive MS
Which type of INJECTIONS/MEDICATIONS to take to treat a specific MS type.
How to treat it, I guess no one knows or just a few people. What is REBIF interferon beta1a, Rebif Interferon 22,44,66 potency injections etc etc.
Salam and Regards,
Junaid Abbas
Junaid,
I think there is growing awareness about the disease. There are a bunch of good doctors in Pakistan who can help. Unfortunately there is little in the form of treatment except medication. Although there are diets and lifestyle changes that have known to help people. Is there anyone you know who is affected by the disease?
Let us know if you would like to be part of a larger group to spread awareness about this.
I never knew about this disorder, till my friend told me about it
Your moving expression made me learn how to get along with my little dear friend who is on this medication. Sympathy is not required. Support but not knowingly. Love untainted pure. Something that could reduce mounds of pressure, is to take care of the medication cost.
Husain you are right,
More than anything the treatment costs can be taxing. Perhaps there should be a fund. Hmm. I know a few stories where doctors are reluctant to diagnose poorer patients. Bigger questions come into play.., will they be outcast from their communities, who will assume responsibility for costs etc.
Thanks for writing.
This is extremely well written and I can so relate to everything you have written! Being an MS patient myself, it is very hard to tell everyone that your legs are stiff and that it is not possible to walk even a step further! People just see you and they ASSUME that you must be doing great because you look great! After my diagnosis, I didn’t know where to turn for help. There is not even a single MS treatment centre or support group for MS patients in Pakistan. Often I find myself trapped in my room, especially during the hot summer days, because moving around becomes a problem itself. That’s why I came up with the idea of starting a Society for MS Patients in Pakistan in the hope that I will be able to help other patients and their families in understanding this debilitating disease.
I am glad you could find some solace in my piece. something you could relate to.
It is true people react much more sympathetically to symptoms they recognize like a sore throat or a fever. I have been through it, i struggle through this. The hardest part is perhaps rallying for yourself, making noise and having people around you understand what you are going through is not your average fatigue.
I would like to take your attention to this page however:
MS Research & Patient Welfare Trust Pakistan (MSR & PWT)
https://www.facebook.com/groups/153124628002/
There is a group, and there are people. Infact the year I was diagnosed, they had had their MS conference earlier that year. It is just a matter of coming together. 🙂