There are many different thing that I could post about
today. As I said I am planning on doing a post from my book very soon and I am
also planning on doing a post on radiation as this may well be the next course
of action that I have to take and sure enough I will do that soon and have
already started to find out information on this and have found there is not a
lot out there on Ledderhose so perhaps I will have more success with
Dupuytren’s?
But today I thought that I would do a little post on what I
find it like to live with Ledderhose disease. I know there are many people out
there with the disease and it would be interesting to see how my experience
compares and also this might be useful
for those who don’t have the disease and want to understand what it is like for
someone who does have it.
So what is it like to have Ledderhose disease?
Well for one thing you tend to have pain in your feet (or
foot) more often than not and for a lot of people this may not be an issue but
I work in a science lab. For people that don’t work in a lab which I imagine is
most people that are looking at this then let me tell you that you spend a lot
of time on your feet as you will need to go to this machine to do that or this
bench to run that thing or even to the special lab to do that work or the other
lab to use their machine and then upstairs to get some pains and down the
corridor to get to a seminar. I reckon that on a normal day before I got this
thing I would spend at least 6 hours on feet but I have since managed to cut
that down by moving some of the above mentioned machines to my bench space and
this has helped to some extent.
Still as I said you have pain in your feet for a lot of the
time and although it may be minimal there is pain in your feet (at least in my
case) pretty much all of the time and only on the really good does is there
nothing to complain about. The pain that be pretty intense and I suffer from it
in several different ways. So firstly there is the obvious pain that you might
expect that is associated with the lump. If pressure is applied to the lump
then WOW that hurts and a lot of the time the background pain radiates out from
this point. Actually describing this pain is not that easy I mean basically
imagine that you have ½ marble sticking out the bottom of the arch of your foot
and every time you step you apply pressure to it… sounds nice doesn’t it? So
other pain I have is also found in the toes of my feet, right at the base of
the toes and it runs along the entire foot. I have to say that I am not 100%
sure what causes this pain but it hurts quite bad. I also then have it when I
get twinges in my foot and this can come from nothing and can be when I am in
bed or when I am playing on the playstation and these really hurt a lot.
Ok so that is the pain dealt with but there is more than
that. I mean I used to love playing badminton and going for a run and things
like that. Now though I don’t play badminton which is a shame as I loved
thrashing everyone and I enjoyed running and now I can’t do those. It extends
further than that though as when we are going out we have to think ahead to
what we are doing and where we are going to park and I am going to have to
spend much time on my feet and when can we rest my foot. This gets annoying as
it reduces our ability to do this spontaneously.
On the bad days you think about the future and how can I
teach my kids to play football when I struggling to walk and how I am going to
stop my weight ballooning when I can’t do the exercise that I want. The thing
though that I hate the most is the helpless feeling that I have. I mean what
treatments are there? I have had steroids, I have been to a physio, I have
Orthotics and I have tried everything we can think of to get my foot to feel better.
There is nothing left on the NHS but surgery and it has a high recurrence rate
and a big chance of problems so what can I do.
The good things though are you realise just how much
everyone loves and supports you and if anyone wants to donate to my wife and
family who are raising money for the British Dupuytren’s Society then please
donate here or make a pledge on facebook as for the time being this is the only
way of us doing it as they are such as small charity.
Facebook page here:
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