Rifka.
Here is my answer there are two times to get out to your monthly MS support meeting when you feel like it and when you don't. Pain is necessary misery is optional. Keeping company in my own head is the worst place to be. Any of this sound familiar? "True happiness comes from playing the hand you are dealt". in the 12. You have a head start you have the tools. Isolation and resentment are luxuries you can't afford. No it is not easy.
I did get a counselor as well who specializes in chronic illness she understands the other and keeps me on a good balance.
I too lost several professions. I am not my profession as I am not my MS. You know how you have to prioritize things. If you can't get out pick up that 500 pound telephone call people and ask how they are doing. I bet you had trouble with that telephone before.
Reaching out here is a start. You can always leave me a message.
Alex
Boy have I ever felt that way. I was so scared to go back to work because of my tremors. I didn't want to go to my daughter baseball game because my head was noticeably shaking. I was afraid of everyone staring at me when I went to my sons 5th grade play. I actually cried on the way to my sons play because I was embarrassed and I didn't want to embarrass him. Guess what? He didn't care...he just wanted me there. I think I actually made my symptoms worse because I was stressing over everyone noticing.
I just had to make myself do each of these things....was it hard? Yes....but once I was there it wasn't as terrible as I had imagined. This is something we are going to have for the rest of our lives. I don't want to stay at home because its safe and miss out on important things. If your comfortable doing so, explain your situation when your asked to go out. Im sure your friends will understand. If you decide to go and are half way into it and you get tired, then go home...at least you tried.
I read something about MS causing depression and fatigue , MS meds causing depression and how it can end up in a vicious circle. I might have gotten the link from Lulu's journals. Have you talked to your doctor about an antidepressant that might help with depression and anxiety? I'm sorry you feel so alone and isolated. I am kind of new here but have found tremendous support and always feel understood by everyone. Welcome. Hope things turn around for you soon!
Rifka, I found myself in your very shoes. I wanted company. I love being around people. I love the outdoors. I love shopping. I love a stroll on our riverfront.
Ms has robbed me of those things. I can't make plans because I never know if the fatigue will be so bad, I can't go. If I invite a group to my home, I am not sure I will be able to entertain that day.
But there is hope! I sat down with my friends. I explained to them how I felt that i wanted to be part of it but at times I just can't. I asked them if I could make plans and if the day of the event I cancelled could they handle it without hurt feelings. Some could and some couldn't. I told the couldn't then it was best not to make plans with me unless it was with a group and then I wouldn't feel bad. I had two friends that stuck right next to me and accepted me for what I could do.
My husband took care of my kids. They know if they visit and I need to rest, off I go. They are so gentle and kind...caring and understanding. I never have a tad of guilt.
So maybe you need to talk to your friends and family. You might be surprised who will stand right next to you.
Hi Rifka and welcome to a great place to find new friends. Yes, we really do make friendships here. This is a very caring community.
You've taken the very important first step in talking about your needs and showing up here. There certainly are a lot of us here who can easily be in the same place- wanting to shut down and go no where and see no one. This disease can be so unpredictable.
There are also several friends of Bill W. here who can definitely relate to the struggles of MS and other illnesses.
I hope you will come around often and spend some time getting to know more of the people here. We really are a pretty special bunch.
be well, Lulu