Here are some factors that lead me to my own MS isolation: I have a dread of being out somewhere with no bathroom in sight. I have a trick bladder and bowel, with fluctuating functionings. During remission they are somewhat stable, but not 100% reliable. I’ve had some public close calls, and I’m tired of explaining to unknowing people that I’ve got to go to the bathroom right NOW. I also have some instability with my left leg. During remission I can navigate without a cane, but I am petrified of tripping and falling. I have taken several spills in the past few years, one time seriously banging my elbow on my parents’ concrete porch as I tripped up the small step. I get nervous in new situations where there are a lot of steps or uneven terrain. Finally, if I am having MS lethargy, I want nothing more than to avoid people who might think I just have the flu or a “bug.” I get tired of well-meaning folks asking if I’m okay.
These above-mentioned physical impairments can cause me to hibernate in the house. Luckily, if I can muster up the chutzpah to try new things and go to uncharted places, I’m usually rewarded with new energy, good memories, and new esteem.
Here are some ideas for broadening your MS world and widening your community circle. There are ideas for all levels of ability:
Try an MS organization’s activities
If you are within a reasonable distance of an MS organizational chapter (wherever you live in the world), investigate planned activities with other MSers. Check out local events online or in current newsletters. If you are physically able, try to volunteer for a fundraiser, where you will meet other people with multiple sclerosis who want to help the cause. The great thing about MS societies is that no one questions your level of ability. There is no need for explanation.
Speak with a counselor about coping techniques
Oddly, many people with MS avoid contact with the outside world, but they don’t realize they can seek help for their fears. There are various types of counselors who work with people with chronic conditions. They can help people with multiple sclerosis come to terms with their fears and help them to venture out and free themselves from the self-destructive nature of isolation.
Find an MS support group
If you are not geographically near an MS organizational chapter, you might want to investigate local multiple sclerosis support groups. They can be found online by doing Google or other search engine queries, or you can find them through local hospitals or rehabilitation centers. These are great resources for MSers because trained social workers can provide plenty of information. Often the hospitals themselves have ongoing meetings.
Find support, camaraderie, and information online
Despite your physical condition, you can find lots of support online. There are message boards, websites, blogs, chat rooms, and other ways to keep connected with others. A good source for message boards and chats is MSWorld.org. Another recent discovery (learned through a fellow MSer) is the website MS Friends, where there is a 24-hour peer support line for immediate need. There are also resources and current MS news items. A fairly new MS chat room, hosted by a great blogger and neighbor (from Delaware) can be found at Joan’s blog “A Short in the Cord.” She welcomes all new chatters from anywhere around the globe. And she’s extremely nice! Last but not least, check out the MS Carnival of Bloggers for many many links to bloggers who understand. If you start your own blog, you can submit a blog post to this bi-weekly consortium of MSers. Just contact Lisa, the ringmaster. There are also several blogs that I personally read, listed to the right in the “Blogroll.”
Give credit where credit is due
Venturing out and facing the unknown or making contact with others in the same situation can be frightening. Pat yourself on the back for taking the first step.
