Alone in a Room Full of People

No one could possibly understand this. This disease is so elusive, yet so real to me.

Everybody with this disease seems to have a different set of symptoms, different age of onset or different way of coping. Fifteen years ago, I felt completely alone. No one I knew had MS, and I certainly wasn’t sure how to explain my illness or its symptoms I was dealing with.

At first, people would tell me, “it’s all in your head.” I’d feel hurt and would mutter under my breath, “well, yes! I have multiple sclerosis, it is all in my head!”

As confusing as this disease is, I am truly blessed to not be facing this alone. Since I was diagnosed, four co-workers have had MS touch their lives very personally. A friend at church was diagnosed a month after I was, and yet another very close friend three years after me. We all have MS but have completely different symptoms. I guess because I am a nurse, I more readily share my health issues; I wear my heart on my sleeve, and my basic instinct is to help others.

MS affects my vision. In struggling with this, I am alone. No one can feel the way my eyes get tired and unfocused… but I have adjusted. I rest when I can. I cry sometimes, yet I know I can rely on my MS friends.

With these folks, the “M’ and the “S” do not necessarily stand for multiple sclerosis. No, I believe they stand for much support. These “MS” friends are there when I need them, or when they need me. If we ask each other, “how are you feeling?” it’s a deeper question when you have this disease. They all understand when I say, “the fatigue monster has come calling today!” They know very personally what that means. Tired is tired, but MS tired? Now that’s something else.

We “MS” people keep at it. We all keep going. We are truly not alone. We understand that this is not a club that most people want to join, but that we did not have a choice. We can, however, choose our attitude toward this. We offer much support to each other and for each other. You, whose eyes are reading these words, are not alone either. Much Support can and will come your way in this blog room full of MS people!
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Nancy Roberts

Nancy Roberts is a registered nurse, currently working in the operating room. She is a mother of two grown children and lives in Woodbury, Minnesota. She has lived with multiple sclerosis for nearly 15 years.

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  • Erika James-Jackson   Aug 15, 2017 2:24 PM
    Thank you Nancy! This is a perfect post...we all need Much Support in one way or another. Yes this disease is tough and certainly keeps you "on your toes" with its unpredictability, however we are strong! Take care and be well.
  • koucla1  Aug 15, 2017 2:28 PM
    When I was diagnosed with MS I couldn't walk and the doc pretty much said I would never walk again. That was many years ago and many steps ago and the support system we have now is great! Your story is filled with hope and conviction and courage. Keep spreading the word... MS is not the end of your journey... It is just the scenery.
  • Maria Wieand   Aug 15, 2017 2:54 PM
    Thanks for sharing this blog, when I started to read this I thought it was written by me and I was reading my day to day experiences. Glad I am not alone.
  • Judith Bourland   Aug 16, 2017 10:03 AM
    Beautifully said, Nancy! And so true. Supporting each other and knowing you have people who do support and understand the best they can has to be helpful to you. You are not alone as you say. Keep writing!!
  • delightedhands  Aug 16, 2017 12:08 PM
    My younger brother was diagnosed several years before me....I sure needed his support that first year.... His positive attitude set the stage for me. This was a great post, thank you!
  • kwec7744  Aug 23, 2017 11:45 PM
    Hope that you are coping with your MS challengers. To play in the MS game, you don't even have to throw a double six. However, the membership fees are a little costly.
  • Valtx17  Aug 28, 2017 8:48 PM
    I can totally relate, there is often a sense of feeling alone. At work I often wonder if co-workers can pick up on the fact that there are days I short circuit. My main issue is dizziness and feeling my legs tired. I try to be positive and when friends / family ask how are things, I chose to say everything is okay. Your comment about people saying it's all in our heads. I think how ironic it literally is all in my head, the disease causing my ailments. Thanks for sharing.... learning as I go along. New MS diagnosis.
  • Xavier Martinez   Sep 3, 2017 1:46 AM
    I need some help I been having symptoms of MS but I was told by my doctor that my MRI on my head came back normal I continue to have symptoms of MS would it be a good reason for my doctor to order a MRI on my spinal cord or do a spinal tap
  • Charity Farley   Oct 12, 2017 10:42 AM
    Hello. My name is Charity Farley. I am a 44 year old mother of 2 ( one biological son and one stepson), and have been married to my soulmate for 22 years. I began seeing my husband when I was 14 years old, and we have been together for a total of 29 years! He is so very good to me and I love him with all my heart! Almost exactly one year after we were married, at age 22 years, I was hit with MS. When I was diagnosed two and a half years later, it terrified me. My father's mother had chronic MS. She was throne through the wringer, and died at age 45 due to the disease. I have been given praise for many years for being strong. However, since 2006, now 2017, I have been dealing with unbelievably severe pain from the bottom of my skull down to the bottom of my back, and radiating down my arms hands and fingers, down my legs feet and toes. Over the years, the pain has become stronger and stronger, hitting me more and more often, and lasting longer and longer. On top of all of the other medications I am currently taking, I am on narcotics for the pain. I also use a TENS unit to help, as well. Of course, I have been to a load of physicians, hoping to find someone who can help me with the ungodly pain I am in 95% of the time. This pain has become so severe and is greatly debilitating. Hi can be found lying on the couch, with a TENS unit on, and either sleeping or screaming out to God for help! The pain has become so severe and lasts for so long, I am at a point where I am about to lose it and no longer wish to be alive. I am a Christian woman, thus I am not suicidal... Nothing, absolutely nothing, is worth going to hell for! Suicide is not an option! However, I have thought a lot about physician-assisted suicide. The best way I can explain the pain I feel is comparing it to an abscessed tooth that makes your whole face hurt. It feels as though someone has both ends of my spinal cord, and is pulling my spinal cord so tightly that it feels as though my spinal cord is going to break! The level of this horrifics nerve pain is normally at about an eighth or 9, sometimes 810. Neurontin helps, but only a little. Same goes for the narcotics I take and the intravenous steroids I get every 3 months, for two days. The steroids used to help tremendously, but now only very little. I just can't take this pain any longer! It's too much! I have a pretty high tolerance for pain, but it has become more than I can bear! I keep searching for help, but no one seems to know what could possibly be done, other than what is being done already. I am on Neurontin, methadone, hydromorphone, ropinirole, intravenous steroids every 3 months, and after researching it... I even smoke marijuana two try and ease the pain. Of course, I'm on other medications that have nothing to do with the pain, but for Ms in general. I also use a TENS unit. All of these medications help very, very little nowadays. There does not seem to be any way of getting away from this pain! It has ruined both my life, and also my husband's life! I have been living in severe pain, depression, sorrow, fear, and anger. I also have other symptoms such as severe vision loss, equilibrium problems, can't think as well as other MS symptoms, and on top of all this... I am going through menopause! I am now at a loss of what to do. I even tried going to Philadelphia for ketamine treatments, for RSD. These treatments did not work at all! And, of course, I have prayed and prayed for years to be released from this horrible pain! I don't know where else to turn here on Earth. I can't seem to find anyone able to help me! Is there any one else dealing with this kind of pain? Is there anyone who knows of any nothing else I could try, or someone else I could see?!?! This pain has broken me? At this point, I am willing to beg for help! Thank you so much for reading this very long comment. I just wish to convey as much of my dilemma as possible. Thank you again! And God bless you all!
  • evangelina374  Oct 26, 2017 5:17 PM
    Wow. I couldn't have stumbled on this post by accident. Thank you for sharing this Nancy. I am fortunate to have a supportive and loving family, but I am the only one in our lives with this disease. So although they see me struggle, the deep understanding isn't there. No matter how I try to describe the sensations my body throws at me. I needed to see this post, because lately, the deep is deeper and the light seems further, but I keep going.
  • ires  Dec 7, 2017 12:03 AM
    I only give this suggestion to charity Farley because she mentioned she tried marijuana. Have you ever tried edible gummies made from marijuana? It is not the usual head buzz. I've had ms for 35 yrs and my husband has very bad pain due to back problems edible gummies pinapple flavor or mango work for his pain and my spasticity. Hope you get this so you can decide if you would like to try this option.
  • bonnie whitescarver   Feb 3, 2018 12:07 PM
    I have been on Betaseron since 1995 and am considered taking one of the new oral pills. Would like to hear from people who have done that and which pill they decided to take and why.
  • Firefly23  Apr 30, 2018 1:23 PM
    at 24, I know the struggles you face. I feel like I am judged because of my disease by my family yet, I still try. I cry and scream but I have to try.
  • liscojr  Sep 27, 2018 3:25 PM
    My husband has the double vision symptoms at times. I really worry about him driving to & from work. He says it’s not so bad that he can’t drive and that he doesn’t want me taking him to work. I know he needs to keep as much independence as possible. Is there anything you do that helps when this symptom attacks?
  • thughes73  Nov 21, 2018 10:13 PM
    Your blog is how i feel 80%of the time
    Thank you
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    Mooney726  Dec 11, 2018 8:17 PM
    I'm greatful for you sharing... I need to read this.
  • kate sloan   Dec 21, 2018 3:06 PM
    It's hard you want to go out do things with people and bam! You feel like crap, yet look fine... The guilt of letting family down is real. Sometimes I just wish give me a deformaty.... That way people see the sickness. They are more empathetic for some reason. Hang in there everyone on the holidays. Rest and know your limits.
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    deluchembe  Jan 6, 2019 2:17 PM
    Nancy, I cannot thank you enough for making this post! I’ve been desperately searching for other individuals whose vision has been affected by MS. It’s difficult walking throughout life having to explain to others why my computer screen is zoomed in, why I need to stand so close to read a text, and why glasses won’t help... let alone having to explain the fatigue/tiredness/and tingling sensations in my legs and arms. I’m glad I have found Much Support in this community :)
  • deviraveendran  Jan 29, 2019 10:00 AM
    Thanks for sharing
  • fannygrace  Apr 3, 2019 11:46 AM
    Your story is very reassuring I hope I can get to that point some day.
  • dreaminofmeadows  Apr 20, 2019 3:05 PM
    Thank you Nancy. I needed this today.
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    Hi Nancy. I really like the alternatives you created for the ms initials. My Mom had ms and my Family and I came up with much sweetness for her. Much support is really beautiful.
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    angelishome17  Oct 12, 2019 8:06 PM
    I glad that someone gets thank you for sharing!