This is such an interesting and timely discussion. I divorced five years ago after 30 years of marriage, and my sons live hundreds of miles away, so I live alone. That means no one sees how bad I feel. My SFN involves pain, weakness and fatigue. My friends know that I can’t join them for a 2 mile walk, or a day of shopping. But no one offers to help me with my gardening, for example ( even my gardening friends). Here in the South lots of us enjoy lovely yards and flower beds. This summer I am having trouble maintaining mine, and mowing my grass, but no one offers to help. Our friendship is based more on fun things, like days at the pool, going to outdoor concerts and picnics, and shopping trips to nearby cities. I have talked about my pain, and weakness, etc for the past few years, but since I don’t look any different, and have dropped out very gradually, it hasn’t made a big impact on them.
Well, there is a new wrinkle here. My long-time complex partial seizures have returned. Gradually at first, but now it’s a daily occurrence. The post-seizure stage of confusion, dizziness and sometimes double vision is lasting longer each time. My daily seizure is a few hours after I get up, then I’m home bound for most of the day. Well, seeing me like this has changed everything. I think the word seizure is scarier and more real than neuropathy.
When or if your friends and families see you using adaptive devices, which you may need some days but don’t use (thats’s me and the cane) it’s harder to ignore the changes. I’m pretty good at finding a chair while others are standing. That’s not very noticeable. Asking your friends to let you out at the door in stores and restaurants, when you used to walk two miles with them for exercise, is hard to ignore.
I hate that it took seizures for my friends to take my illness seriously, but this week I have gotten cards, flowers, food and rides. Maybe I’m the first in our group ( age 60’s) to force everyone to face their own inevitable aging and possible crippling illnesses?