Monday, 16 April 2012
Another day with Ledderhose
Hope you are all having a good day, don't forget that my wife and her family are between them running 30km on Saturday to raise money for treatment and the British Dupuyten's Society. If you feel like donating then please message me, or go to the facebook page, or click donate on the right hand side or if you want to give straight to the Dupuytren's Society then go to their page.
But for today I am going to post about my day, enjoy....
Work is still hard going, I have some (hopefully) particularly interesting
experiments to do at the moment and this morning I was cracking on with them as I need to get to a certain point before a meeting I was giving at 12:30 (at least both the meetings are out of the way now). This involved me making up several solutions which means walking to other rooms to get measuring cylinders and then to another part of the lab to get some solution, then I needed some ice and then means walking to the ice machine, then I had to get samples and this means walking to the -80oC and standing there whilst I find my sample, I then have to run this thing and then wash all the kit which means standing at the sink and so this continued for most of the morning. I sat down at about 11am and my foot was already throbbing and I could feel that the level of pain was building to quite a high level.
What am I supposed to do? I can't sit down as I need to get the work done, I hadn't even done half a days work and I was already in a lot of pain. The thing is that there is no way around this, I had to get ice, my sampels had to be stored at -80oC and the equipment has to be stored in the communal area and there is a limited amount of space on my bench so I can't store everything there so I HAVE to get up and walk and this means I AM going to be in pain. The foot was properly throbbing, I sat down for a bit and could feel it ease but what happens when I stand again? Well the answer to that was it still hurt, it was throbbing badly again after about 5 minutes standing. It is lucky, or I guess essential that they have made some changes for me at work such as I needed to do 5, 5 minute washes and then leave something to shake, luckily I now have one of these shaker machines on my bench and I got a beaker to discard the wash into otherwise that would have been a lot of extra time on my feet. The thing is that as I have outlined above I HAVE to spend a lot of time on my feet. I have heard of several cases on the international Dupuytren's Society forum where there are people with Ledderhose who spend 10 hours on their feet and I do not know how they do this.
I was then round my parents this evening and my Mum asked to have a look at it and she was like hmm yes that is bigger, much bigger than it was before. My wife agrees so hopefully this does mean as I have said before that it is active and I am going to get the most out of radiotherapy. My Grandad was also round and made a wonderful donation to the foot fund and was saying how dreadful it must be and I of course agreed.
I was also talking to a colleague at work who has had a lump cut out of his foot (many years ago) and he is a weightlifter and he told me that today he is getting pain in the most common place where you get Dupuytren's. Needless to say he was thinking nothing of it at the time but I told him to get it checked out but that for most people it is not a problem but as he lifts very heavy weights it might cause him some issues.
Overall pain wise today was not a good day but what can I do? I can't take my pain killers as I would have fallen asleep and when you have chemicals around you that it not a good idea. So I muddled through and luckily didn't quite break down in tears. I was also pleased that when I went to see someone today they asked about it (I had given them a leaflet last week) and they were very impressed that the leaflet was made by me she thought it was professional and has very nicely offered £5 as a donation for my wife doing her run. That conversation helped cheer me up in the afternoon.
I will try and get round to doing more videos, though some feedback on whether they are helpful or not would be great? Or if you have topics that you want me to discuss then let me know. Remember I can't do anything about the way my voice sounds so you'll just have to live with that. Anyway not all my future posts are going to be videos because that would be silly, but I do now intend to investigate further the trusts behind the associations of Dupuytren's and Ledderhose with the likes of smoking, drinking and epilepsy and see if I can find an actual link in the literature.
For those who just can't wait for my posts be sure to check out this paper which I think is free and fairly easy reading.