Dreams to the future

It is strange how your life can be taken over by something without you giving permission or actually realising it is happening. A year ago I never thought that I would be writing a daily blog and being very active on both twitter and Facebook, somehow it all happened. Life for me has followed that pattern all to often, drifting into one thing after another and still no real direction in anything. I think it is true of most people, we just are, and we just do. Clearly when I started to blog my goal was for me to have a record, and I had no feeling or desire at that point to take what I was doing beyond that point. I found myself though with a purpose and a direction, which is kind of funny when you think about it. My life and my writing are all about actually not being in control any longer, but it has delivered the first strong goals I have ever had. I don’t think that I have actually written them down before as they are so long term that I have no idea if I will ever succeed in completing them.

When I started writing that clearly was about my MS and little else, how it affected me and how things felt when they were happening. It grew from there into my second blog which was my feeling about all kind of different subject, post that were designed to make people think about all kinds of topics that they may never have really thought about or even heard of in some cases, to me that was the fun side. Between the two I opened myself up totally to the world, there is little now that is still unsaid, not hidden on purpose just not said yet. Just before I started my second blog I branched into Twitter and it was my rapid growth in followers that started to lay down the ideas of the goals I now have. MS is not the focus any longer so much as all chronic illness and most of all those who are housebound. No matter where I have looked or searched that is no real information or network for those who are housebound, nothing that gives them a voice and it really feels and looks as though we are the forgotten ones. It was this that pushed the current goal of writing a book, I was asked by several to do so and it is turning into a slow process as I have already scrapped it twice as I wasn’t happy with it, version three is about to be started, hopefully this time it will work for me.

Once I have my book complete and published in what ever format I eventually settle on, then I can move on to the next step one that I think will start to make the most difference. I have this idea of setting up a support network for those who are housebound and their carers, a place where information can be pulled together, not medical definitions but as I have done here, where an person with any chronic condition can add their description of the way it affects them. Hopefully there will be enough people involved over time that it will supply description that people can actually understand in layman’s terms that it will be a resource for all. As I said a big plan that I might not ever be able to complete or even get of the ground.

I have come across so many people who are living lives that the ordinary person in the street working 9 to 5 have no idea even exist, people who repeatably say to me that I put there feelings into words, but I can only do that for the things I know about, there have to be others who can also do this and add to the site supplying help in away that is just as important as any medicine, the knowledge that you are not alone, others are going through the same thing. Once housebound you don’t meet others, you can’t talk to other patients you might have once met at a clinic or a support group. Being isolated from the world is one thing, being isolate, trapped by an illness is another. I want to raise the profile of all those in my position, including their carers and families, just having others in the same position words, to reassure you, means an amazing change in how you feel and how you cope.

Well that is it written, that is my goal, a long way off and may be just a dream for ever, who knows, but I do know that there has to be a better way of keeping the world open to all, surly the internet can supply it and provide that missing link in our lives.

Research, missed opportunities

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Sometimes when it comes to research I fear that the picture above is the real problem in finding a cure for anything, lots of different people holding lots of different parts and not bringing it all into one place. I do know that there are many many researchers who do share info and that a lot of the charities act as information hubs, but I worry that there is a hidden gem, that tiny piece that could be the key that unlocks and brings everything together hidden in plan view. I am a long way from being the only person who blogs about their illnesses and I again am not the only one who documents the changes as they happen, who is the person or organisation that are pulling all the blogs together.

You and I know that when you visit a Doctor to discus you illness that you never really explain in detail what is happening and has happened in the past, so even your specialist is going to here hundreds of voices saying what at root may be the same problem, but it doesn’t sound like it. To expect a Doctor to pick up something that has so far been overlooked, is actually an unfair responsibility on them, anyone will not if all the different voices are saying the same but when said in different ways or omitted, they don’t really stand a chance. If I asked 50 off you to describe the last headache you had I bet you that no more than two or three would match, from the rest there would only be a handful that describe it in enough detail to form not just an understanding but enough detail for the reader to put themselves in that position.

Blogging is still a new phenomenon and I expect very much over looked when it comes to a pool of information. My own experience a few months ago left me far from sure the work was by any means on track. So many discoveries have been made in science by what you could call accidents or chance by people who have thanks to reading or hearing something, they have a light-bulb moment and the discovery happens. I hate to think that within all those blogs are the eureka moments that could catapult research forward enough to lead to a cure or a prevention method. On the surface the simple solution sound as though a bot could be the answer, but as an analyst the problem with that type of data pull is, you get back what you asked for, not the unknown.

The figures of research have passed my by now twice once because I was asked with in month of becoming housebound to join a heath survey and check for the over 50’s, you had to attend at one of the hospitals and all your medical problems were to be documented each year for 10yrs, then the experience above that I mentioned, their questions were so far off the reality of MS that although I made suggestions the whole thing remained unchanged. Part of the problem there I think was that they university running the program had read a book on MS and based their questions on that, rather than talking to the people who actually lived with the illness. Breakthroughs happen daily in medicine, illness now that they cure a 100yrs ago killed but I just truly feel that an important resource is being missed, that resource is us, every single human on the planet who has ever been or are ill.