May be because I was a military kid and had to move and start over all the time I am always expanding friends. Since my diagnosis I joined two MS support groups which meet once a month. I have gotten involved in advocacy and made new friends all over the state.. Made new friends through new hobbies like horseback riding and dog training. Reached out to friends who have there own issues to help, i.e. a friend whose husband died. I try not to make it about me. Do you have a church group? You can be extremely disabled but interested in others, my friend Phil who was hit by a car and is in a wheelchair has the best social life of anyone I know. I also keep up with one of my college professors who is in her 70's and home bound.
I even buddied up with one person on the forum when I was first diagnosed we PM all the time.
I hear you! I also feel like I don't have a lot of friends who understand what I'm going through. Some of them never ask me about my MS, they pretend it doesn't exist. I'm always sure to ask them about their lives, children, work, etc. And if I mention that I'm worn out they say "oh me too" and part of me wants to yell "no, you really have no clue how bad I feel right now" but I keep my mouth shut. I figure it's just their way of trying to make me feel better.
And while online connections are great, they're not the same as an actual, honest-to-goodness-we-can-have-lunch kind of friend.
I think MS is a very isolating disease and I do have to push myself to get out there and put myself in social situations.
I am sorry your lonely. So am I. My friendships are pretty much now limited to my sis in law and my husband. Perhaps u could go to a support group and make friends there? You do have friends here but im sure you want a friend you can physically see once in awhile lol.
You know..here we have the YMCA ..its a center that people sign up for who can swim, excerise, and a bunch of stuff and different groups..or even the gym. If you go there kinda feel your way around and look for people who might be nice to talk to. I dont know how much you are able to physically handle but if you could find a nice person there they could be like a buddy who can work out with you..that keeps your muscles up to par and you make a new friend.
Another thing you could do at the gym or the YMCA or any center in your area is even sign up for meditation technique class or a yoga ...you could find friends that way too and help yourself physically in the process.
Im sorry your having such a rough time. You have my support!
I so get what your saying, same issue over here, I'm a social person, always have been and have always made friends easily but since April 09 my 'so called friends' have all disapeared, and the phone doesn't ring anymore. In the begining i did reach out and call them, or emailed but i noticed after I stopped driving and I couldnt get around, if i didn't make the first move then they were silent. Time has passed and the only human contact I have is from my family and the man who delivers my groceries, that is enough sometimes, cause it has to be.
I did read somewhere that isolation is the common experience of people dx with a disease or disability. It was basically saying that the majority of humans have an inbuilt survival instinct and even when the disease isn't contagious, instinct can over come all the social conventions. Something as simple as feeling bad or guilty for a friend can be enough to create a wedge in the friendship, time between contact extends until contact is nil.
Friends come and go through out our lives, adding friends because of a common conection and loosing friends due to life changes is normal for everybody but when your not replacing them because of your health, their absence becomes more acute. What has been eye opening for me, has been the loss of friendships within the disability community, I understand but they have been harder to loose.
Hey, i like to think i've made many new friends (across the ocean blue) so i dont feel lonely, i miss my independance more I think, though sometimes i'd like to just sit down with a friend and chat about the weather lol!
As you can see, you are not alone. Others here have the same experiences and so do I . If I don' make the first move then it doesn't happen. I will say the for the first few months post-dx, the friends rallied around me but now they are practically non-existent.
I have made friends with a wonderful lady at PT. We are planning to volunteer together at a thrift store once a week. I am so looking forward to the outside world.
The others before me gave you good advice. I hope the days get easier and you can make new connections that add to your social circle.
I do know that we all experience the same things....sometimes I just need to hear it, I guess.
The problem with this area is that there are no support groups !! I even tried to start one when I finally ran into another lady who also had MS, I got all the information from the MS Society and was ready to go.....my one and only MS person dropped off the face of the earth, i left several messages and never got a response from her.
Its as if anyone with MS here are underground. So i figured I didnt need it.
No YMCA here either !! And I may be better off than others even though I have my hard times...I almost feel guilty now...BUT its a good topic.
Its funny but yesterday I started getting a couple of phone calls from people. I know there is a God !!
REN....I do have pneumonia and am on my 3rd round of antibiotics..that is why I have been breathing so much more.
I didn't know about the pneumonia or I don't remember (LOL) but it still is the pits to have been sick so long. Hopefully the 3rd round of antibiotics will do the trip. You know, 3rd time's the charm. There are some nasty germs out there that are resistant to antibiotics.
Hopefully, when you feel better physically then the loneliness will improve. I do not have a MS support group near me either. I have met 2 others in my area with MS but hose friendships are in their infancy. I hope they will grow with time and become closer friends.
I've got my fingers crossed that the 3rd round will do the trick!!
I have been interested to see the reaction of friends to my dx and like you I have been surprised and disappointed by some people's reactions. I have also been overjoyed and pleasantly surprised by other people who I had thought were not such good friends who have gone out of their way to help me in practical ways. So it works both ways.
The one thing that struck me from your message and other people's responses it that everyone has accepted that the friends who you think have disappeared have gone for good. I think it is often a good idea to reflect on those who you have lost touch with and just consider if there could be another reason why someone has dipped out of your life. We sometimes are not aware of what is going on in someone else's life, and it is easy when we are feeling vulnerable to make assumptions that may not be correct.
So what I am encouraging you to do is to ask yourself if there is anything you can do to reengage with people who you used to enjoy spending time with. This could be challenging and you would have to be prepared to face rejection (and you would be able to gauge this by responses and excuses). Perhaps you have already done this?
It sounds like you were trying hard before you became ill and now have just reached the point where you accept that you life has to move on..and this will not include some friends from the past. It can be hard severing this chord and separation is a loss.
I think there is always room for new people in our life and again it is about thinking what you can do to try and find opportunities where you live to make new friendsl. This sounds difficult for you when driving is such a barrier and you feel isolated where you live. So you need to ask your husband to help you to get out more.
It sounds really tough having had pneumonia 3 times and I really hope that you begin to feel better soon. Take care and you may feel lonely but you are not alone and have friends on this site. However...this is not the same as having face to face social contact with others and I beleive that this is so important.
Sarah makes a wonderful point .... reach out to those people who you lost contact with.
The friend I had lunch with today I met about 38 years ago. We were thick as thieves and she helped raise our son in his first five years - before she had her own children. Then we both had daughters and we continued to help each other out and we inseparable. We had so much fun together and our husbands got along too. We were girl scout leaders together for our daughters ... you get the picture.
Then they moved - all of about 10 miles away. And life got in the way. Things got busy and we went our separate ways. And rarely talked - maybe once every year or two.
Fast forward 20 years - our kids are all grown and we finally have time for ourselves again. I forget how we even reconnected, not that we were ever disconnected. We just didn't take the time to talk.
My son popped up and asked what ever happened to my relationship with this friend - I could honestly answer "nothing." We hadn't had a fight or disagreement. Life just got in the way.
Now we're back to seeing each other regularly - she has been my traveling buddy to go to Columbus for appts. We get to visit on the way up and back and today we even had lunch that didn't involve a doctor appt. LOL
She is really one of my best friends - never stopped being one.
I'm not sure what message is in my rambling here other than don't give up on relationships. They are worth the effort.
Its not rambling, we just need to do it sometimes. I do the same.
Sarah, did make some good points and I have followed thru with a lot of it.
A lot of my casual friends live it the city but some of those do come here occasionally for get togethers....and the ones that live closer, its true life does get in the way.
I called a couple of friends that normally stay in touch and they were, as usual were glad to hear from me and said " phones work both ways"
My old,old friends and I stay in touch with no problem.
This has brought it all into perspective for me...
I think I am a bit SPOILED ! ?? And Ren is correct, I do tend to feel this way when I do not feel so good.
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