“No man is an island, entire of itself.” ~ John Donne
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 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, maybe I’ve put up some walls of my own.
That was hard to hear, and even harder to tear down. Walls 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, 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, the gym and the hairdresser.
Okay, not exactly the life of a party girl. But 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.
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Original article appeared on -The National MS Society Blog
I have had MS in a mild form for as long as I can remember but I managed the fatigue and avoided the sun. When I had my first serious relapse I went to a Dr that was able to diagnose me with MS in 2006. I now live in my room. My husband is a good caregiver although it isn’t easy for him because he works. I have lost all of my friends and family because I just can’t keep up. They have no time to try and understand what MS does to a persons mind, emotions and body. I get occational emails from my 35 yr old daughter who tells me that this is the way I am choosing to live. That I just need to get over it. I do get lonely sometimes but am usually too sick to notice. I have never blogged before now but maybe it is time to meet people in a new way?
Barb, maybe it’s time.
Isolation…it is my constant companion, but I have learned to love her. I enjoy my isolation as I am not dragged into other peoples daily drama. I do what I want when I want. As far as friends are concerned, you find out who your true friends are when you have an illness as we do. It doesn’t have to be a life of pain & despair. My husband works & I am home alone, with the dogs all day. I have planted (ok I didn’t my husband did) in a elevated 8 x 2 ft planter. It’s the right height (scooter height) & I go out early before it gets too hot & putz around. I cook (not gourmet meals) but by the size of the 2 of us I’d say we aren’t starving! It’s what you make of it. I choose to LIVE; maybe a little differently but I still enjoy it. Keep your chin up Nicole, it could be a lot worse I like to say.
I feel lonely everyday just got married and the relationship I have with my husband is like literally like roommates and I don’t know what it is sometimes I wonder is it my M.S. most of my thoughts are why did I get married. Anyway I am lonely. 🙁
Bridgette, I so sorry for what you are going through.
A few years ago I wouldn’t have agreed or understood your comment but today it rings true for me. It is nice not to be mixed up in other peoples drama and bs. I too have dogs that keep me company and they are wonderful. I do miss gardening very much but I paint watercolors and finger painting is fun too. Take care. Barb
Isolation has to be worked away. It takes more strength to be aktive, meet friends once in a while than it takes for people that don´t have special “situations”. I once replied on one of your great letters, about how I was feeling isolated. Your reply was that, as I remember it or at least translated it, that I have to work on meeting people in some way not to feel alone. That really helped me at that time. Kind of lika a wake up call, not to feel sorry for myself. But I really feel and understand what you are writing about this week. Lots of love to you Nicole, and to everybody out there feeling isolated 🙂
Helen, I like the way you threw the ball back into my court. With that being said, do you belong to any online sites ?
You have to help me because my english is not that good, I now a days say thinks that I shouldn´s say and that I before didn´t say. I have been in conflict with several friends and also my sister because the way I express myself is not ok in social life. My problem is of the cokgnitiv kind and my brain don´t work as it should. Should I translate “belong to any online sites” as if my comment was to direct and therefore wrong? Help me understand myself.
Helen,
Sorry to here that. You will always have friends on this site.
I know isolation 7 months ago I had relapse, my whole left side was paralyzed. Head to toes. My friends have not come to see me. My husband work and he also my caregiver. I don’t leave unless to Dr appointment. Just able to go out without becoming totally exhausted. I spend lot time on my tablet. Checking blog along with this site, playing games, and Facebook. What else are we suppose to do? People really do not want to hear about what MS doing to us. They don’t want see my wheelchair. MS sucks plain and simply. I still take my meds exercise and try keep a positive attitude every single day. Don’t feel like your the only one.
Hi sweet Nicole!
Regarding to the feeling of loneliness and then solitude I was recently out with a new group of upcoming student members of my favourite NGO of choice. I was in a wheelchair. I knew of a few people there but last time we had seen one another I was up and active! They never mentioned that my situation had obviously changed. I felt invisible as hell. We had known each other for several years beforehand!
Anyhow, I went from being the center of attention to being invisible.
Needless to say that I have returned to being all alone where it’s safe.
Bless you all, Sar
Hi. New here, and the posts on isolation got to me. I have secondary progressive MS and am largely confined to bed, need a Hoyer lift to get into my wheelchair. I live in my own house with my partner in a lovely retirement community. Wonderful people here, but everyone is old enough to be my parent or grandparent, and making new friends is very difficult. Friends of 30 years have dropped me,which hurts, I have grieved the loss of my athletic self, my horses, my kayak.
Anyway, I make a point of going to communal meals and events, but I’m tired of being invisible. I feel as if I died and no one noticed. I’m a poet, so am glued most of the time to books and the computer. But I wish I had friends who would just drop by for a cup of tea.
For me the walls protect others from me. How are you they ask? How do you think?!?!?!?! I want to say! To avoid being rude disrespectful and mean, it’s best for me to keep some walls right where they are.
People asking questions… My experience is that they want AN answer, but not THE answer, shaggy with details. Humor helps… people ask how I’m doing, and my reply is “Usually, I’m tempted to ask–how much time do you have?” Laughter, then I say “Better some hours, not better some hours; just like, y’know, life.” They feel happy because they got AN answer, there was laughter at our common very human experience and maybe just a touch of “Hmm… that really IS life, isn’t it?” Meanwhile, the poking at you has evaporated and people’s attention is taken to something else.
I’m missing time with soul-feeding friends. Alas, they have to come so ME, in the current state of things… But here’s something to try: I was in a VEGAS casino (long story) and I wheeled up to a blackjack table where there were ZERO players and a dealer looking quite lonely.
I said “I’m not here to play, but I do have a question for you, that I don’t expect you get a lot, or ever–how ARE you?” Dealer took a moment–definitely a question they don’t get a lot–but we had a few quite wonderful moments.
Be nice to someone. Someone will be nice to you. Feed someone’s soul; someone will feed yours.
What goes around, comes around.
Nicole,
I love your new website! I must say that it is difficult to attend functions when people stare and ask numerous questions. I had a psychiatrist bugging me at a function and he treats people for anxiety! I hope that your counselor realizes that solitude , within reason,can be good for the soul .