When I first started blogging I had no idea what I was doing. I had heard about blogging but since I don’t have a lot of free time, I had not read many blogs. Then while Lynn was in the hospital, I was talking to a nurse whose husband also had MS and we talked about how difficult it was to go to support groups. If you’re the primary caregiver, getting away from home for very long is a major effort so belonging to a support group, while it might be beneficial, was just one more thing I would have to do without.
I tried Facebook at first to see if I could connect with other caregivers but to be honest, I’m just not that sociable. I’m not a “one-liner” kind of person (obviously as my prior blogs demonstrate) and just giving a “shout out” to someone doesn’t feel like we’re really connected. Therefore, I rarely even go to my Facebook account.
I realized I wanted to “talk” to people who could relate to what I’m living. I thought there might be others out there who were going through the same thing and who might want to also connect by responding to what I had shared. That’s where the idea of a blog grew….and it’s exactly what I needed.
When I write this blog I feel like I’m actually talking to someone. I don’t know most of you but if you’re reading this, it may be because you know someone with MS or you have had to care for someone who could not care for themselves, or you otherwise related in some way with something I’ve said. That gives us a connection…a sense of community. When I get comments back on something I’ve written, I feel understood and that I’m not alone in what I’m doing. Blogging truly has become a virtual support group for me.
What’s really cool is that sometimes someone will actually send me an email and they share their story with me as well. I feel like I have friends that really get it because they are really living it, too. We’ve become a family of caregivers–people who care enough to give of themselves. So thank you for being there for me. It’s really very healing for me to share my life with you.
PS, guess who has also started blogging? Lynn. He has just done two so far but he saw how much I enjoyed it and is trying it himself; only his is about writing. You can check his out at http://authorrisingtide.wordpress.com/
I soooo remember those days of not being able to find the time for support groups and then whenever we somehow did everyone in Patti’s MS support group had mild MS and of course every spouse caregiver in mine likewise had a spouse with mild MS – our lives living with severely progressing MS was more like an alien invasion of their support group. 🙂 Then again we began our journey before the Internet so blogging was not an option in those early years.
Excellent entry, I am always curious as to the why.
Caregivingly Yours, Patrick
Donna, I can’t get up Lynn’s blog – can you write out the name again? Thanks!
sharon
a few people have been having trouble with it. I think it might need another slash. Here is is again
http://authorrisingtide.wordpress.com/
Take care, Donna
Donna,
This is Linda’s husband John. You are doing the right thing and approaching it the right way. I know Linda is trying to do it the same way. I’ve been writing some posts but have trouble not having it sound like a busness letter. I give Lynn a lot of credit for starting his own blog. Maybe I’ll do the same if linda’s relativems.com gets rolling a little better
I can’t believe I found this. My husband as had PPMS for 13 going on 14 years. He is now paralyzed from the neck down. I was his total caregiver until last year. We then got a great guy Sam to take of Tom , he started out 3 days a week 8 hours a day, then we went to 4 days now we are @ 5. I had a very hard time giving up control of Tom. I loved caring for him, our marrage had changed and it felt like that was my only way to connect to him. Well I just could not keep up the emotional or physical pace. I wish I had know about this blog then.It was a very hard decision for us to make. Emotionally then financially. Insurance does not cover caregiving. Why not? Anyway glad to hear I am not alone, hopeI can help some others with my story. It seems with MS you are always crossing bridges you don’t want to cross. It’s so very hard watching your loved one slip away. I miss just holding hands, having Tom hug me, so sad. We try so very hard not to think about all of that and only look on the bright side. I still have him , his mind is great, he is still Tom except for the body . Anyway I am going on to long. Just wanted to say thanks enjoy the post.