Things that help me with Ledderhose

A sense of inadequacy today!

 For one thing I was chatting with my wife about what she had been doing whilst at was at work and she was between driving lessons and she said she had been ironing the chair sashes from the wedding that we had just sold and was quite frustrated that she had only got about half of them done and was tired. I said that I was more than happy to do some this evening but she said there was no way she would let me stand and do the ironing and even though I have my stall I am still not really in a great position to be able to do that and I had to concede her point (I will come back to the stall in a bit).

The second thing that then happened was everyone at work was talking about this fun run that they are going to do and another person had e-mailed about the one they were doing and I find this so annoying as I would love to be able to run, to walk even a couple of miles and to be able to raise lots of money for charity but let’s face it again that there is no way that I can do that either.  Still I need to pick my battles and there is no point in me getting down about not being able to do the ironing (it hardly ever needs doing anyway) and not being able to go for a run as that is something that just shouldn’t concern me and in fact I am happy the others in the lab are going to do it and are hopefully going to raise some money for some good causes.  Wouldn’t it be nice if one of those causes could be something related to some research for Ledderhose disease?

There are many thing and now many posts that I have made about the different things that I use to help me get through the day so I thought it would be good to stick them all somewhere where they are together so that it is easier for people to find:

Stall: So I have a stall in the kitchen that when my foot is particularly bad I use for the washing and drying up. 

Foot Spa: See my comments here but basically it is a nice warm massage for my feet. 

Snuggle Toes: See here for the warm slippers that help me to get to sleep. 

Walking Stick: New addition that I am trying to take the weight off of my feet. 

Orthotics: Take the weight around the lump and offer much better support than anything else. See here. 

Wonderful Wife and supportive family: There is nothing like having people that will put up with you moaning about it and give helpful suggestions and great advice. Thanks everyone 

  

1000 page views on Plantar Fibromas

So now that I have hit 1000 page views I thought I would do a kind of top ten moments if you like on the blog so far. Not sure how close to ten I am going to get as it has come round pretty quick as I only started this in November and I think that it works out at about 20 views per post which is not that bad as I was only getting a few if any to start with. 

1) Understanding: Post referring to -  Understanding and Original post 

So I think that the number one thing about doing this blog has got to be the increased understanding that the people close to me have of what I am going through and actually just how much pain I can be in. I know that my partner who was fully aware of the problem was shocked at just how bad I had it and I found the blog a really good way to talk about it as well as in person. But not only her, my best man for the wedding and my mum were also reduced to tears upon hearing just how much trouble it was causing me. Everyone has been very supportive and some people (they know who they are) have been pushing for me to SIT, SIT, SIT and I think that all the sitting I have been doing has been helping. 

2) Meeting someone else with the disease: Post referring to My lovely lady lumps

I am not sure if this was really the blog or if it was the forum but in the last couple of weeks I have been in regular contact with someone who has the disease. It is fair to say that they have it much worse than I do but we have been through several of the same kinds of treatments and together we hope to be able to raise awareness of what it going on in our feet and hopefully band together some more of us so that we can get something done about it as the current solutions are just not acceptable and are certainly not well enough understood. She now has her own blog so for anyone interested see here.

3) Finding out about Rare Disease Day: Post referring to Rare Disease Day

In the process of trying to think of how awareness can be raised I came across an event that is called rare disease day. This is a get together that takes part pretty much worldwide with the ambition to increase the awareness of lots of different rare diseases. I had a look at and plantar fibromatosis or ledderhose however you like to look at it is considered a rare disease. This year it takes place on 29th February (leap day and so it only once every 4 years and so is rare). 

4) The number of views: 

Ok so this isn't a single post or a single moment but rather the coming together of everything. I have Google analytics linked to this blog so that I can see in more details what is going on. I get visits from different places which is nice but the biggest thing for me is that there are several different people, mainly across UK and USA that are spending around 20 minutes on the sure and are looking at lots of different posts and this means a huge amount. One of the main reasons for me doing this blog other than to vent was to let other people out there with this know that they are not alone and that there are lots of different treatments out there to try.  

5) How people are finding the blog: See this post - Top 10 blog and forum in Google

I was really pleased when I started doing Google searches using relevant search terms and the blog and the forum both came up. Also when I look at searches that people have used to find the blog and simple searches like "plantar fibroma 2012", "cortisone injections for reducing plantar fibroma" and "are there any insoles that help plantar fibromatosis" come up makes me realise that perhaps the right people are finding the blog.

6) Getting my foot spa and chair: See here - Foot Spaaaaah

So these things happened because of the blog and because people wanted to help. The foot spa was a Christmas present that was researched and purchased by someone who is fairly over protective of my foot (for my own good) and I really appreciate having it and would probably not have ended up with it without have the blog. The same goes for the stall that I currently use for washing up and the like, this is on loan from someone because they read the blog. 

7) My foot appointment for the orthotics: See here - A good appointment 

I was in quite a bad place before this appointment as the guy who I went to see about my foot, the so called "specialist" was a completely and utter waste of space and didn't know what he was talking about and just wouldn't listen to me. I went to this appointment not feeling that optimistic but the guy was great and he explained everything in a way that I understood but it didn't seem like he was talking down to me which I often feel having a scientific background. As it is I am in the Orthotics and I think things are going well with them. Hopefully for me they will at least resolve the issue until after the wedding and maybe far beyond.  

I think making it to seven is not a bad thing so now I will list a couple of frustrating things to get me ever closer to those 10 things.

Frustrating things: 

8) Lack of people following / joining the forum: 

I wish that I had a better conversation rate of views to members or followers. I understand that a lot of the page views will be by the same people especially as I have previously said many of the people that are coming here are coming back and are viewing multiple pages but even so it would be nice to see a but more obvious support.

9) Money - Well lack of it:Relevant post 

The book I mentioned that looked really interesting and maybe helpful in terms of understanding would be great to have but at over £100 it is such as crazy price hat there is no way I could ever afford it. Also there is the fact that people with money can get whatever treatments they want and pretty quick whilst the rest of us have to wait.

Well that is a rap as they say. Ok so I only made it to nine but I think that is quite good and perhaps I will do another post like this if I reach 10,000 views and then again at 100,000 and 1,000,000. Certainly would have raised awareness if I get to those sorts of numbers. 

Plantar Fibroma support forum

Foot Spaaaah: Helped my Ledderhose

Foot Spa:

At Christmas I was one lucky man as I was given a foot spa to give my foot little feet a bit of a break from the plantar fibroma pain and allow them to relax and sit back in bubbles, heat and vibrations. I think it is this one or one like it and I am shocked at the negative reviews that I have seen so far MySpa Foot Spa.

Basically it is a little tub that can hold your feet, it has little nodules on the bottom and you press the button on the top to get it started, one press is massage only which I have to say I don't find does much but my partner loves it, whilst a second press will give you bubbles and some heat to help keep the water warm. I tend to start by filling it up with pretty warm water as with a product like this you can imagine that the heat that it does provide isn't fantastic but then for the price and time they say you should use it for I am ok with that.

I whack my feet in and I don't know if it is just the warm soothing water or the bubbles but the aches and pains in my feet are swiftly forgotten, they fade away and I can relax. The actual product itself is quite noisy but I can hear the TV over it very easily and can really relax, might be easier with some headphones on though. Not much else I can say about it really other than when I take my feet out they do start hurting again but for about 20minutes I have much less pain and love to relax in this. Since the flu left me I have been trying to use this once a day and enjoy my time in it.

Below is a picture of the foot spa followed by a video of it bubbling away.

The foot spa

I have also started a twitter account, this is going to be much more general than me talking about my foot but may reach a wide audience and help to increase support on the forum which would be great. My Twitter feed is shown in the sidebar and can be accessed by