Though I strongly suspect that the change in one’s life and perspective after being diagnosed with Charcot foot is the same for others as it was for me, I can only vouch for how totally whack my life is now as compared to before. Like, where to start with comparing the list of “who I was” with the “who I am, now”? I guess we can start with the whole living-with-my-parents bit. After swiping a whopping 30 years of independence (from the “who-I-was” list), to giving it up for Mom constantly asking me if I am ok, and do I need anything…(“who-I-am-now”, not to be confused with when I was 5 years old, though the lines are a bit fuzzy). My parents are only trying to be as helpful as possible, of course, and only want a safe healing for me. But, I went from a rock goddess of independent living to just a costume of a super-hero, left crumpled in the corner, forgotten till the next Halloween or party. Well, at least that is certainly how it feels. Friends call and come over often in the beginning, but their lives of busyness and my life of not, slowly pulls apart the amounts and frequency of their visits. Not their fault, and not sure I even minded, because most days I don’t think I’m quite ready for prime-time, if you know what I mean! If you don’t know what I mean, well….it’s that it can be very easy to do the ‘ol “I’m not going anywhere today” Thing…the: “Who’s gonna see me, anyhow?? (n o b o d y)….soooo, why bother with make-up, and cute clothes, and all the accouterments, r i g h t? But, anyhow, I truly understand my friends reluctance to visit, and their wanting to just…hold their breath, like I myself am doing, actually, waiting for this whole thing to blow over and me to return to the “who-I-was”. In all honesty, I’m not too sure if that’s even possible, to go back to being the old me. First of all, I’ve had to box up some bad habits, like the occasional “whooo-hooo” drinking and smoking days, and place that box up in the attic for storage…probably forever. Actually, I wasn’t a heavy smoker… I’d only smoked 2-3 cigarettes a day, but since smoking effects your lower extremities in that it restricts blood flow, and has the double whammy of effecting your peripheral neuropathy too, I have made the decision to ditch them altogether so that my foot has a better chance of healing. My doctor said it was the best thing I could ever do for myself. He also mentioned that with Charcot foot, smoking could trigger inflammation or something, and it’s best not to take such a risk. Damn! I honestly won’t miss the smoking too much, (well, ok…a little bit!) though I surely will miss that woman puffing languidly on her cigarette, tossing back her head and dramatically exhaling smoke in film-noir elegance. Ok, ok….wake-up! Smoking is not chic, sexy or elegant…but you see, it is a perception of “who-I-was”, that will linger in my mind. Best to consider the new, non-smoking me to be a definite positive of the “who-I-am-now”!! (But only because I have to!)
But, let’s get back to living away from home. In my case, it’s staying with my parents, but it may be different for you. Some of us may be staying with friends, or perhaps even staying temporarily in a rehabilitation center or convalescent home. The reason for this is that in the early days of our diagnosis we are so caught off guard that we aren’t able to do a few basic things for ourselves. The major reason for me is that I could not navigate the stairs up to my condominium. And I didn’t have the ability to stand long enough in any one spot to be able to prepare meals (how to cook with both hands on a walker??!!) Learning to do daily things and get a rhythm to our routine takes a bit of time, but it does get better! My independent streak kicked in pretty early on, and now I actually don’t need help with anything. This will happen for you too, so don’t lose hope on being independent again someday!
Though our lives have surely changed with Charcot foot, and it seems at times we cannot connect our current reality with how our lives were in the past, you really are still the same person. Over time the “who-I-was” and the “who-I-am-now” merge back into one cohesive person, so hang in there, fellow Charcoters!
Cassandra, Charcot chacha copyright 2015