My birthday present to all my clubbies:

If you are a clubby, you are already amazing. You know about struggle, about pain, about disappointment. You are already friends with hard work and sacrifice, with learning how to adjust your expectations and desires to make them manageable and realistic. But you also know how to work harder than others to make your dreams a reality. You understand the ignorance and intolerance of others, and learn early how to deal with those negative factors.

 

All of these things mean you are more than halfway to wisdom, understand the suffering of others better than most. These are the foundations of character, of resilience and courage. You know that fashion and popularity count for far less than integrity and kindness, and that joy is something that when earned is more full than when bought cheaply. You already know what matters, and know even more what does not matter.

 

You are a clubby. And that is amazing.

In Answer to: Does anyone know how to ease the pain when you have club foot on both feet when you have been walking and standing etc for so long, the next day you can't get up, walk etc cos its so sore:

OK, this is of course the main question all clubbies face. And there are many solutions, tho none is perfect - you sort of have to try various combinations until you find the one that works best for you. Remember - none are perfect. If there were a perfect remedy, I wouldn't need to do this blog!

First - you need to look at your own behavioral habits - you need to learn to obey your own "half-way point." This is the point of walking and standing where you know you are exactly halfway to the "oh, crap, am I going to have a bad day tomorrow" state. And respect that point - when you hit it, turn around right then and there, or sit yourself down and rest, with feet up if possible, to potentially - note that word - extend your halfway point further. This may or may not work - experiment to find the right point for yourself.

Second - you need the best shoes and best custom - not off-the-shelf, but actually custom-made - orthotics. These two items should matter more to you than a new car, or the latest whatever, because they are your first, and best, friends. If you have poor support and balance, that half-way point is going to be mighty short. If this doesn't make sense to you now, believe me, it will sooner or later. You will be much happier if you get the point sooner.

Third - soaks. Buy a big tub, big enough to put your feet in up to your knees. Fill it as high as you can (remember the displacement theory, unless you like a wet floor!), with as hot of water and epsom salts as you can, sit a chair in front of it, and slowly drop your feet into the tub. Don't forget to bring along a good book - you will be there until the water goes cold.

Consider elastic foot/ankle supports - see elsewhere on this blog for a link to some good styles.

Elevate your feet whenever you can - above the level of your heart. This will help reduce the inflammation. Make this a regular practice, and you will see the best benefit.

The best anti-inflammatory drug is aspirin. take enteric-coated aspirin if regular aspirin bothers your stomach. Aspirin is actually better at reducing inflammation than steroids and such. Plus, you don't need a prescription.

Massage. Make a good friend of a massage therapist, and teach them how to treat your feet the right way. Very highly recommended!

As you might notice from all of the above, the central point is to put yourself and your feet first in your life. Treat them nice, and they will give you many years. And do try to avoid having a doctor talk you into more surgery - it might work for a short time, but believe me, you will only move the pain somewhere else. Especially if they want to fuse something. I know this isn't the answer you hoped to hear, but it is an answer that is honest and founded on many, many years of experience, not just my own, but from many other clubbies. If you haven't found it yet, do join the Facebook group adults/teen with club foot, at https://www.facebook.com/groups/24892886820/?bookmark_t=group and meet hundreds of other clubbies from all over the world. Hope to see you there!

Updates, and Such...

Been gone a while, family situation. Have been occasionally over at the Facebook clubbie group, lots going on there. One of the current discussions has focused on the occasional bad apple who is eventually ejected from the group. Every community has them, even clubbies. I am more surprised there aren't more in such a disparate group, I suppose. I mean, given our increased potential for mental health issues, with all the stressors we deal with, and all. And then there's that gal in the UK that wants to become an amputee even tho she has nothing wrong with her - Munchausen's syndrome, for sure, but still, quite upsetting for the difability community already struggling just to be taken seriously.

I've been thinking about the issue of chronic pain, and how it has shaped many of my perspectives over the years. I blame no one for what I have and what I deal with, tho I do blame the medical community for ignoring us clubbies, as they also do with many of what are known as "orphan" diseases and syndromes. If there is no potential for a profit, what's the point of wasting one's time, seems to be the unacknowledged rationale. But dealing with such pain daily can make one either very crazy, or deeply philosophical - tho I am not ruling out a variable melding of the two options into some mutant third way. I seem to have opted for the deeply philosophical - most of the time, at least - and try my damnedest to find solace therein. I am successful on occasion, and can perhaps claim that has kept me out of jail thus far. Pain can make one do "funny" things, as many of us know.

I have had occasion of late to seek resources for other clubbies - doctors, orthotists, footwear, etc. I have been mildly successful for the most part. I realize that for you gals, my entreaties that you seek sturdy, well-made shoes seems antithetical to your deepest footwear desires, but I cannot in good consciousness suggest the sexier alternatives, as they simply don't work on our type of feet. What makes such shoes sexy sadly makes them both ineffective and subsequently harmful. Maybe you'll thank me later, who knows?

I again ask all clubbies visiting here to complete the survey, and to do so as completely as possible. I am working toward forming a not-for-profit research foundation, to raise money for serious research into post-club feet syndrome, and this survey will assist in making the necessary pitches for funding - we need to show numbers and data if we are to be taken seriously. I am not (currently) asking you for money, just data, as your contribution to finding real solutions to our shared situations. Step up and be counted, my Clubby's!

Well, I will get back to the on-going series on compensation and clubby pathomechanics, but I am rather slow at the moment, sort of recovering, you might say. Patience, my friends, patience.......