1. Plan ahead for routes that will work for you. I always call ahead to find out about wheelchair rental (if I need it), stairs and elevators, or other info. For a trip to DC, I researched where the handicap entrance was for each building. This saved me having to walk all the way around to find it since I knew right where to go. When we go to concerts, I buy handicap seats, even if I am feeling pretty good so that if I flare beforehand, I won’t be stuck standing. For things you can’t know ahead, feel free to improvise based on tricks that have worked in the past. If you come to a restaurant with stairs, see if the ally has an entrance with a ramp (most have a loading area), sometimes I ask permission, but other times I just sneak in without a scene. It works great.
2. Have some physical tools in your arsenal. Come prepared with tools like tape for your joints (if that helps), anti-inflammatory patches or creams, or a wheelchair or cane. One problem is that I find it hard to figure out how much I have done on a day with sightseeing or shopping. To solve this, I wear a pedometer (a higher end model) to track how far I have walked. I wear it every day and know how much I can do given my current health situation. Then when I go on an outing, I know my limit and can pace myself. If I am getting too high in steps, I may rest for a bit while everyone else goes and does a bit more shopping, for example.
3. Ask for help. I know sometimes it is hard, and I struggled for a long time with this. For example, I was with my brother and his wife and we were walking up a pretty steep hill. My husband and I have figured out that if he puts a hand on my lower back and pushes as I walk, it makes it more like walking on flat ground as far as my knees and hips are concerned. We had walked a long way and I was tired, but I still hesitated about whether to ask my brother to help. I ended up asking and he felt so good about being able to help. Also, the last thing you want is family feeling like they need to ask you all the time if you need something. This makes them treat you like a sick person. If you establish that you will ask when you need something, they will relax and treat you normally.
4. Have an escape strategy. If I am with people I don’t know, I prefer to find a way for myself to get what I need independently instead of asking the group to alter their plans. Sometimes I have to bring stuff up (like let’s take the elevator), but when it comes to asking them to go home early or not do something, I generally end up just going along with what they want and then will hurt later (violating my above goal). Instead, I have learned to plan an escape, like driving separately, so that if they decide to stay longer than I want, I can leave when I am done. If I am not sure whether an activity will work or not, I will drive separately to the event. If it turns out it doesn’t work, I can leave and go do something fun on my own rather than watching other people enjoy themselves.
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