Apart from continuing to clean up the abody site, I’ve joined and posted to some MS sites / newsgroup / mailing lists today.
Thing is, if you have a regular sort of disease, there is usually a clear pathway for whatever treatment you need, and usually someone at the end who is the one responsible for the cure / treatment / operation. From here, it feels like the more high profile the disease, then the more well-worn the path you need to tread, more people know, authorities will proclaim how well they do in whatever ‘league table’ the current politicians have going. When needs are precise, defined, clear then the track to the target or goal is equally clear. But if it isn’t, it gets very murky…….

If you get a regular sort of disease, and you become unable to work, then society makes you better. It’s more beneficial to society that you work, produce, contribute. The cost of your health care is, in the overwhelming number of cases, easily offset by your contributions back to society following you being ‘cured’. It’s not that society – and governments – want us all to be healthy because they are brimming with altruistic desires, they want that because a healthy person helps push the economy forward. An unhealthy person drags the economy back, it slows them down. But what if the person cannot be made well ?

Go look at websites that deal with what I’m calling ‘regular’ diseases. When you look in the diagnosis or treatment sections, you will see lots of words like “will”, “shall”, “expect”. Now go look at the MS sites. You won’t see those words. You will see words like “might”, “should”, “could”.
Those first words are doing words. They imply action, direction, but the second lot ? Hardly inspiring are they ?

Want to find a care pathway for prostate cancer ? cervical cancer ? heart disease ? Easy…. now find a care pathway that speaks in the same doing words about multiple sclerosis. So that’s why I’ve got to find out what others have done, and take a cue from them. We can’t follow what they’ve done though because unless they live within a couple of miles of us, their system will be different – their ms care, their health trust, their social services – there is no pathway, none. Hell, it’s that foggy up ahead I’ve no clue just what will happen.

Oh well.

At least my day was brightened by a happy dance I did at 13:04 – and I know at least one person reading this will know why 😆

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