Monday, November 28, 2011

MS Walls

Nicole Lemelle

Do you ever feel isolated? I can be at home with my family and still feel lonely. I wonder if it’s because I sometimes feel like only a sliver of the person I “used” to be.

Lately I have spent time away from friends and family. Strangers too, I guess. I don’t work outside the home, so that sums up my social life! I’ve been electively away from life in general. Most people I know don’t understand what it is like living with this disease and I am growing tired of explaining.

I bury myself in my computer. My previous psychiatrist told me that too much time on the Internet, at the expense of time spent with other people, might develop into depression and social isolation. I stopped going to her because I didn’t agree!

Okay, but you have to give me a little slack. Some of this comes with MS territory.  I do honestly have very real limitations. Am I mad? Of course I am.  My emotions are about as predictable as this disease. Ask my husband!

But a friend of mine pointed out to me that maybe I’ve put up some walls of my own.

That was hard to hear, and even harder to tear down. Walls that I didn’t think anyone else knew about. Fortifications I would much rather not deal with. Accommodations I don’t want to make.

It had never dawned on me that this feeling of seclusion could have anything to do with what I may or may not be doing. Partially, because I do get out when I go to my doctor’s appointments and I enjoy going to church, water therapy and the hairdresser.

Okay, not exactly the life of a party girl … I get the point. Life is what you make of it and I can control my level of loneliness.

Maybe I’ll go back to that psychiatrist.

Nicole Lemelle blogs regularly at My New Normals. Read more about her here.


  1. I'm glad you're posting this. The temptation to say "nobody can understand me" seems so rational when we think it. Since what we understand influences how we interact, it always seems people reinforce our ideas of solitude because, low and behold, people who don't understand say and do the wrong things. I frequently fight the urge to only hang around those who understand. First off, they don't exist except in my head. Secondly, as often as not it's me who isn't explaining. I get tired of explaining why I forgot the milk or am moving slowly or am taking too long or...

    It's just frustrating.

    It stays maddening till I try to flip my perspective. What did I really say,do, or forget? Would I be annoyed? Would I understand? It's right around that point I most often have to fight my self righteous indignation to recognize I've hit one of those resistance points which mark the edges of what I need to change or need to ask to have changed. I suck at the latter. Do I invite others into my life and my kids'? If I feel like what I am doing is more than I can handle, whom do I ask for help? Is it that nobody is helping or that I'm not making my needs known? I generally feel fairly lonely which is amazing in my busy and often social life, but it's usually because I don't know how to make my situation clear in a way I am willing to express. It's my walls seeking to allow entry to only those to whom I don't need to explain.

    I love your looking at the walls and seeing what we put up around ourselves whether it be walls of convenience or walls of emotion. I hope you find insight to be happy with a crowd of 100 or even 1 who loves you. I find the hard part is knowing what I need and how to say it. As for the people we meet on the internet, I always remind myself I see only glimpses of parts of their lives and the same is what they see of me. Even if they understand what I write, even if what I write about in terms of symptoms is within their experience, even then, they only know about the side I write. Most of the time we are so much more complicated than we could ever write, and it's in those unwritten bits that our true selves are shared and experienced. As is often the case, the parts truly shared can be returned many fold by those who care. While the internet may point a direction, it loses so much in the transmission. It's like living in Plato's cave looking at shadows. If we let ourselves, we can begin to think those shadows are the only reality.

  2. I am struggling dealing with the fact that I have a severe case of MS.

  3. I have to force myself out of the house on a daily basis. Last weekend when I did so, I ran into a good friend and we got to talk. That was a nice surprise. I often go to the local diner where they know me and I feel safe. I find time there to write with pen and my journal. Keeping myself going is hard some times especailly when I sleep 12 hours a day due to my MS. I need to make the most of my time when I'm awake.

  4. Oh how you describe me...a mirror image. For me, I am MS "suspect" as every test is coming back negative with the exception of a positive MRI with lesions (white matter). How I wish I could deny this disease but in my heart I know that I have MS. It has only been 5 months since my first serious "episode" which started with dizziness, memory and speech issues and eye pain, Looking back over the years, I now see that symptoms that I attributed to my diabetes was not. I am now unemployed and dealing with loneliness and depression. Thank you for sharing!

  5. I am still struggling not being able to do alot of things I use to do but I never give up. I wish I could could get a good night of sleep myself. I always feel alone even when I am the present of family and friends.

  6. I am very isolated. I don't drive anymore, my husband is a paratrooper at Ft. Bragg, and there's no public transportation in this city. I don't have any friends and the "army wives" have small kids. If there was away to get around, I wouldn't feel so isolated.

  7. i am 30 years old and have had ms since i was about 11, and finally diagnosed at 13. my family and some friends have seen me in situations from complete paralysis (when i first got sick) to being in great health and riding a four wheeler out in the desert here in vegas all day a couple times a week! (about 4 years ago) I am now for the first time in my life living on my own. I have been in this apartment for one year come december. i wasnt doing GREAT when i moved here. I am struggling bigtime with alot of issues I've never had to face before and it feels like the people in my life think I am exagerating when I tell them of my struggles. The REALITY of it is that I never even come close to telling them how bad it really is for fear of the judgement. I feel as though they have completely forgotten that I have a seriously debilitating disease! well I HAVEN'T! I am reminded of it every second of every day! It is so hard when I tell people in my life, especially my family I NEED HELP and they look at me and say "I know", "why can't you get help from the county for that, or the state?" "why dont you ride the bus to your appointments" "Why doesn't your caregiver do that?" i explain why their suggestions are not options for me and yet still.... here i am in deperate need of help! I cant cook my meals. when I try to eat, i cant hold my utensils, i have trouble swallowing...and they wonder why i look thin... "you need to eat more" as if it was just that simple. I can't drive, i had to cut my hair short cause i csn barely wash my own hair (my PCA has to help me with so many things like that but i only get her once or twice a week) i barely ever get invited to do anything or get visitors. they say "well, when we ask you, you never feel up tp it" or "we knew you wouldnt be able to do that so we didnt ask cause we didn't want to make you feel bad."
    the only one who has been there, seen it, helped me through it, lived under the same roof, pushed me when i had no will to push my friend Mike....but's me and my cat.
    (and this computer that just got internet access)
    Isolation, it's a heck of a bumber!!!

  8. I'm 48 years old and have 3 grand daughters and one on the way. I hate this MS BS so much. I think I finally understand what MS has taken away from me. On Thanksgiving I was so tired when it was time to eat I couldn't eat. My life is just starting and I feel as if it's over. I just want to do the things with my grand daughters that my grandmother did with me. But now I understand that's not going to happen.

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  10. We moved out into the country which was a dream come true for me before the MS was diagnosed. Due to inconsistencies in being able drive, I finally left my job I loved. I miss the daily contact and "face time" with others. I am realizing I am partially responsible for my feelings of isolation because as you describe, I have built my own walls. After years of having to explain every move I make (or don't make), of being told it's "all in my head" or if I would just go to chiropractor...I decided I wasn't going to allow that kind of "support" in my life. My family is well meaning (I like to think of it that way) but a weekly sometimes daily interrogation and feeling like I have to qualify everything was exhausting in itself. I work from home now and have found sites like MSWorld to be a an amazing gift. I need to do better about letting friends in...I'll work on that. Thank you for writing this and reminding us we are not alone...despite what we may think.

  11. I hear you. Myhusband couldn't handle it so we divorced. I have no imediate family and live in a new town with few friends who are busy. I don't drive anymore due to spasticity. I can't get out of my apartment by myself due to 2 steps. I am ina wheelchair most of the time. I am very lonely and find it difficult to type much and can't hold pen to pppppaper well. I try not to spend much time thinking about the negatives and am ever hopeful my situation will change. I just can't seem to figure out how to make that happen. When I'm feeling good I'd like to have something to do and someone to do it with. This sounds like poor me and I hate that. I need a good laugh :)

  12. This is my first time on a blog. I have found these comments interesting and comforting. I have had MS for 37 years but was diagnosed 4 years ago. The diagnosis explained all the strange things that I experienced in my life. I would always find a reasonable explanation for them.
    The, walls, I feel too. My walls come from me without realizing it. I go through the day in a state of forgetfulness and fatigue. I am lucky to have supportive friends and family.

  13. Hi Nicole. I am told I probably have MS but have to wait for lesions to diagnose. I am tired of explaining myself and living rural I just don't go anywhere. The computer holds all my friends now. No insurance no job, I am falling between the cracks of help. I hope to pull myself up and earn money to get help. Lonely? I think most everyone is to a point.

  14. Beyond frustration, but hopeful between flare ups, I can not afford to give up or in, although my family and friends can't understand, how I forget my son at school, what I may have been doing just a few minutes ago, or why I stagger from time to time, or just have to lye down because I just don't have energy anymore, I have 20 years of symptoms, positive MS panel and no lesions which means no true MS diagnoses....

  15. Taking out time to cry it out today, week 4 of continuous headache, blurred vision, muscle spasms, shaking, nausea, mental confusion, memory problems, severe fatigue, and aches and pains....Feel as if I'm starting from square one, all over again, time off work, and being invaded by MS, unable to function freely again the worst I've had in a long time....Venting and waiting to exhale and get back to myself.

  16. Nicole! I'm so glad you have written this post...

    I feel isolated much of the time. Although I still work , drive, and do some of the "normal" things in life, I am very isolated.

    My isolation comes from both myself and from others ... I isolate myself in that I have a fear of pushing myself too much and then being too fatigued to work (which I have to do)... and isolation comes from others in that THEY have put up walls keeping me bound... others are afraid, or put out, or don't know what to say, or don't know what to do... my very best friend of 26 years walked away from me the day I was diagnosed because she didn't think she could come to terms with MY illness... now if that's not a fine how-do-you-do!

    Bottom line - I think we are all isolated, but not only by ourselves but by the "normal" world too. Our self-induced isolation I believe comes from the instinct to protect the self from harm, emotional and/or physical, from fatigue, from judgement, and on and on and on.....

  17. This is dead on, Nicole. Thank you for posting this and congrats! Way to go!

  18. I have MS 20+ years now secondary progressive. I too build walls. I have a sign hanging in my room that states: "I build walls not to keep people out but to see who cares enough to climb over them!"

    I am still mobile for the most part I get around with a rollator walker & drive an adapted van. Due to POOR SERVICE & PEOPLE NOT KNOWING THEIR JOB at THE SCOOTER STORE I CANNOT transport the wheelchair I got from them (IT BROKE THE WHEELCHAIR LIFT IN MY VAN 2x & NO ONE WANTS TO FIX IT). I am limited to short shopping trips or I go to Walmart, Lowe's places that provide scooters for customers because I can't walk far. I TEND TO ISOLATE TOO - FEEL ALONE IN A CROWDED ROOOM!

    It takes alot for me to get ready & get out each day then I encounter people ILLEGALLY PARKED IN HANDICAPPED PARKING (this problem increases 10 fold around the holidays) & people who park in the ACCESS AISLES NEXT TO HANDICAPPED PARKING (it is AGAINST THE LAW for people even with a handicapped permit to park here). People also are LAZY & like to leave SHOPPING CARTS in the HANDICAPPED ACCESS AISLES this makes a HARDER TRIP EVEN HARDER - THERE ARE SO MANY THOUGHTLESS & INCONSIDERATE PEOPLE IN THIS COUNTY (Nassu County NY). THESE ADDITIONAL UNNECESSARY OBSTABLES DISCOURAGE ME FROM LEAVING THE HOUSE.

    In addition to the MS I am an insulin dependent diabetic. I have a small (12 lb) Service Dog that alerts to my diabetes. It is an ODD DAY that I DO NOT catch hell from someone who questions Esperanza's Service Dog Status.

    So why do I go out?

    It is not only good for my Service Dog (she can use wee wee pads in a pinch) but emotionally I NEED PEOPLE as much as I hate to admit it. I have to go for PT & Massage Therapy & I see a Social Worker weekly and a psychiatrist monthly not to mention the myraid of other medical professionals and I attend an MS Support group on Saturday mornings. What I do is MAKE ONE APPOINTMENT PER DAY (except SUNDAY I need to rest one day) then I feel OBLIGATED TO GO OUT TO KEEP MY APPOINTMENT. Even if I am only out for an hour or two each day at least I am looking at something other than the 4 walls of my rooom or my computer. I LOVE MY LAPTOP. I could stay on it 24/7 but mentally I know I need to interact in person with others even if a good many of them bust my chops about parking or the dog.

    I turned 50 yesterday & was so depressed becausae this is not where I imagined my life to be at this age. I question what I have given the world what my personal worth is (I have no monatary worth). I know that this too shall pass & I need to keep working toward my goal of starting my own company so that in 10 years when I turn 60 I don't look back & say - what do I have to show for myself?

    LIFE IS NOT EASY. I have struggled every day since the day I was born. But is because of my perserverance and tenancity I have made it to 50. Faced with all I have been through MANY PEOPLE would have given up a long time ago.