Monday, 19 March 2012

Ledderhose update: Monday

I don't really have much more to post about today so I will have a moan in minute. I have been slightly productive today as I have contacted several more people about whether they would be willing to do an interview. I am now trying to get people that have had any kind of treatment so if you are willing to do this and have LD or DD then please get in touch...

Right so with the pitch over today I am just going to complain about my foot today. The first real twinge was at 10:26 (I checked my watch) and I could feel it throbbing through journal club (12:30-1:30) and come 3:30 I was ready to give up and just had to sit down for half an hour and let the pain subside. I then battled through until 6pm as well I had to and I had an important experiment to do and now I am at home and in a lot of pain when I am just sitting here typing this. I hate the pain and I hate this disease but I am doing what I can and I have great support and lots of people that care for me and that helps a lot.

The pain did vary between locations today as when I was standing the pain was very much in the arch of my foot and really really hurt and when I am sitting the remaining pain is mostly down near my toes but this isn't always the case and just is what happened.

The other thing that annoys me slightly is that you cannot get RT (radiotherapy) on the NHS for this disease but from what I have read and heard it is one of the best treatments as worse case it is going to do nothing but it can be great. Also everyone is saying how it only take 10minutes max to do the dose each day, are the NHS machines really busy all day every day that they cannot fit in the few Ledderhose patients that are going to need this kind of treatment over the course of a year?

Anyway I don't get any days like last Tuesday and Wednesday though it is surprising how close the margins are as today was really bad but I think it is more about the start time as today was really really bad from 3pm ish onwards when last week is was from when I woke up. Though on good news I didn't notice my right foot today.

:-)