Thursday, 19 January 2012

Just an update...

Right this is all done on my phone so any mistakes might not be my fault for once. I had some spare time on a train today and thought I could write a blog post.

The first thing that I wanted to cover was my Orthotics which I got on Monday and today is Thursday. I know they will not work for everyone but I'm beginning to have some hope that they will work for me. Over the past three days I have not worn them much and then today I was a little bit naughty as I used them for three hours in a row although I was seated for Quite a bit of this. The difference when I put the trainers on is subtle I can feel that there is extra support and like to think that over the course of a few hours I can tell the difference. I tried standing for a little bit today, just standing still as this is what was one of my most painful things and at the moment it still is and I could feel the pressure building. Not wanting to push the limits of them too much I took them off and switched to my normal running trainers before heading for the train. Apart from the insole containing trainers being much warmer and drying which was to be expected there was no difference, ok so actually there was.

Anyone who had read this blog will know that I not only have problems with pain in the foot but also that I twist my foot right over to protect from the pain and have a bad ankle on the other foot.

1) The ankle - this was ok, despite going up and down stairs it felt good, hopefully this will continue to be the case and that'll be one problem dealt with by the inserts.

2) The twisting - wow, after wearing the insoles I sure notice the difference that they make. After taking my feet and placing them in the running trainers everything felt unnatural, it seemed normal again after a few minutes but I guess this is why I have to break them in and hopefully they can adjust my walking completely but perhaps for this to happen I would have to get some for my slippers and never walk barefoot.

3) the plantar fibroma - It is hard to tell from such little use. When wearing the insoles the lump was again not too bad and when switching back to the running trainers I started to get the odd twinge. I'm not saying that insoles are the right way for everyone, they might not even be right for me but as a minimum I am now hopeful that they will at least help delay the disease getting to the point where it runs walking life and the next step is to try then in shoes to see if I have to get some new ones fire the wedding.

I have also been thinking about rare disease day as it is something that interests me greatly. I have mentioned it to my partner who was encouraging and as the special day coincides with her last day at work we're thinking of serving cake with a helping of Ledderhose information. I have also mentioned it to my best man who said we should at least do something, do with those encouraging comments behind me I'm thinking of implementing something.

Although the above has the potential to raise money if we sold the cakes who is there to give the money to? In a post yesterday I talked about the rare diseases and I also did a search on the official site of all UK charities to see what was out there. Looking for Ledderhose or plantar fibroma(tosis) gives no results so if I did raise any money then there would be no relevant group to give it to. The chance to start a charity is there but that requires start up money and the time to manage it of which I have neither. But lets assume that there was a charity, who would that charity give the money to? With no research really going on into this you can't even give the money to them so you would only be able to use it to give support to those who have it and can't afford what they need to get round. Although helping these people would be great it would not get us any closer to a cure which is what some people are waiting for. I have to say that I think I am lucky to be living in the UK, as although I have find that the NHS is slow getting things done I do get them done and I don't have to pay. I have had physio for two conditions, the steroid injection, the Orthotics and an MRI. That's not too bad considering I only went to my GP with this 25 months ago.

Fingers crossed that we can raise awareness, even raise funds and who knows help people get on the path to help and wanting to find a cure. After all I hope to raise awareness in a scientific research building.

I'm thinking of doing a few posts covering all the different treatment options in as much detail add I can and maybe I'll find something new and useful in the process.