I knew very little about MS when Lynn was diagnosed. I knew that it was a nerve condition and that it was often first diagnosed due to vision impairment. I knew also that it affected a person’s ability to walk. However, I knew very little detail about it–like there were four types. So my first way of coping was by reading. I love to read. If I’m sitting still, I have to be reading whatever is around me (unless I’m watching TV of course).
I have found that the more I know the better I can cope with what is going to happen. Not so with Lynn. I was looking up everything I could find on the internet and reading all the information we were given by the doctor. He didn’t want to know anything. Still doesn’t. I would find something that I wanted to share and he would tell me not to. He has the belief that if you know what COULD happen (i.e., the bad things) then just by knowing, they are more likely TO happen. There’s something to be said about that. If you feel bad and don’t know what is wrong, you keep pushing ahead but if you find out that you have a serious disease, then suddenly you start acting more like you have a serious disease….not everyone… but a lot of times that happens. So I look up things and keep them to myself. I also find out things from the doctors or other healthcare professionals about what could happen, and keep it to myself. It’s hard not having anyone to share that with. I respect him not wanting to know but it’s hard being the one to know that the procedure he’s about to have could result in x, y, z. Most of the time it won’t but I’m a realist and so I look at all those possibilities and think about the “what if’s” a lot.
That’s the main reason I started this blog. I don’t have anyone to talk to about the “what ifs” that understands. I’ve thought about joining a caregiver support group but that is impossible for me. Lynn can do very little to help himself right now and cannot be alone for long periods. It’s difficult to have someone come stay with him while I’m gone because he’s on intermittent catheterization and he cannot help transfer to or from bed to wheelchair. That limits who can help a lot. We also live in a rural area some 45 minutes from Richmond so anywhere I would go to attend a meeting would mean being away a long time. That is just not possible.
When Lynn was in the hospital recently, I met another wife of someone with MS. We had a lot in common; particularly the inability to go to support groups and the desire to share with someone who understood. I thought then that maybe there was a way to have a virtual support group on-line. I set up a Facebook account but I don’t know how to get the word out on that plus I don’t want strangers to have access to the lives of my “friends” so I thought maybe a blog would be better. A blog would allow me to share and others to comment and share as well. That would be the closest thing to an actual support group.
So if you also want to share your story, trials and concerns, I’m here to listen.
Just a few suggestions about sharing:
- Remember whatever you say is public and may be seen by anyone, copied to other locations, or misconstrued so be careful what you say.
- I recommend not fully disclosing who you are or where you live so you can maintain some privacy but that’s up to you.
- Keep it clean. Please do not use profanity, make crude comments, be disrespectful or insensitive. If you do, I’ll delete the comment.
- Please do not use it to add spasm, solicit business, or bash anyone. Again, …I’ll delete it.
My hope is this blog will be a place to share and gather support. If you have something to share or something to ask, feel free to post a comment.