Tomorrows reality

I think my lungs are just that bit better this morning, well I feel like I can actually breath most of the time. Once again I am hanging on the phone waiting to book an ambulance for Thursday, and I guess I might be waiting for a while, that is at least….., wow I take it all back that was quick and easy this time, too easy. Sorry but I just don’t trust them that much, the good thing to me is the appointment is at 5:45 pm, so I am hopeful that most of the clinics that have patient who need transport will be over by then. Now I just need to fill in all their forms so that I have them ready to go. I am thinking of doing that tomorrow and doing it while I am blogging so that I can give an idea of what they ask and what is needed to be relieved before you even see a doctor. I am sure that there are many out there who have like me never been anywhere such a place before, so some of you may find that helpful. I am not doing that today as Jake is coming to see me at 1pm today, so I want all my blogs and so on done before he arrives. Jake can’t open a pay pal account but he likes to buy things on Ebay from time to time, so I set it all up and if he wins he brings me the cash and collects his item, I have one of those items sitting here waiting. I actually haven’t seen him for a while so it will be nice to have a brief catch up. He has been the most constant of friends I have had, we may not see each other a lot but we speak every week and he makes a point of calling me. He cared for his father in his last few months and I think he has a better understanding than any of my other now vanished friends.

I try hard to explain and pass on what I have learned not just here but on twitter and Facebook, but I am touching still a tiny number, and of course they are the ones willing to listen, you can’t make people listen you can just hope that something touches a nerve and the learn from there. I expect that is something that I have in common with bloggers around the planet, a wish to pass on information, not for our own self glory, but so that a tiny part of the world is changed for the good. I wish I had the power of the TV channels, not one of which have I ever seen showing programs that explain those changes that are forced on millions of their viewers. Yes there is the odd program that will appear out of nowhere, or a story line in a soap that lasts a couple of months but that is all I have ever seen. Sorry dreaming out loud again! What is on TV just now that I am finding a refreshing break from all the Christmas programming is the doomsday programs about the 21st of December, sorry but I just love science faction, as in what if our planet was….? How could be survive if….? It never ceases to amaze me how much of it I have heard in Scifi, just proving how great their research is before they start to write.

I have recently received several approaches from well meaning people with what they believe is a cure for my MS, I do research each of them, but I always find one of two things, lots of money with no proof, or that it is something once again for people with relapse remitting MS. It is 12 months since I started to blog, strangle on the 21st, but in all that time and with all the people I have met on Twitter, here and Facebook, I have only once found one person who had the same version of MS as I have, I have made contact now with over 22 thousand people, and no list of hello’s from people with PRMS. It has made me realise more and more that the chance of any cure for me is zero. I had little doubt before I started all this, as well medical breakthroughs take years not days. If today a scientist had that eureka moment, it will probably be 20 – 30 years before anyone tries it on humans, I won’t be around to see that even start. I thought that from about month 6 after diagnosis, but the longer I remain in contact with the outside world and count those like me, my chances are now guaranteed to be zero. So my life is what it is and clearly that is still a good one, it is also one without false hope, something I think can be more damaging than the illness itself. I would drive myself nuts if I were to sit here searching for that cure, that magic pill that will change everything, acceptance of where you are is really one of those important steps towards living a good life, in your new environment. My hope is there, as big and as strong as ever, but my hope is the hope that I can continue to live this life for as long as I can, not that I will be well tomorrow skipping down the street.

Belief in Placebo

I was about to start writing when one of those infomercials appeared, what it was selling really isn’t that important as 100% of the ones I have seen I have never wanted to buy or made me laugh, just as this one did. As once more was for one of those gadgets that no one ever actually needs. You know the type of gadget I am talking about, as like me, I bet you have at least one of them in your cupboards, that miracle item that was going to change your world, then you used half a dozen times and had until now forgotten was actually there. I know for a fact I have a couple at least, and they prove just how well a good sales person can make you buy what you really don’t need. I made a point about 20 years ago to just not look at those glossy little magazines that tempt you with the next great gadget, just as about 8 years ago I stopped reading those article claiming to have the miracle treatment that would cure my MS, the only real difference between the two, was money.

Recently I have come across several telling me that I could be cures and all I had to do was spend a huge amount of money, drink or take some potion and or stick to a diet. I have always been of the view that if there were any truth in their effectiveness, them my doctors would be telling me to take that treatment. I am not saying that some people have been helped but I have always felt there was a large amount of the placebo effect involved in the improvement in their condition. If you are in the UK and reading this you many have like me seen a program on Channel 4 the other week were Derren Brown cured huge groups, with many different conditions, some with complex fears, so bad that they ruled their lives, some with OCD. They were given a blue pill that was simply sugar, being Derren Brown it was all done very convincingly so I could see how these people could have totally taken in the possibility that it would really be helped. It was this group that they followed and all but one, was cured. There were other groups that we found out about near the end, he had also gave the same tablets to them, several had really bad medically diagnosed allergies, all were cured, including a boy with seriously bad dermatitis, he was totally cured as well. The proof of the show to me was that the human brain can have amazing powers that we are just scrapping the surface of, the placebo effect might in itself be a cure for many things.

I am not saying, in case anyone should think so, that we should all run off and pay a huge amount of money to take a quack cure, but my view of them has changed to a small degree. I think that it is possible that if someone believes enough, that they can relieve their symptoms from any condition, I don’t think you could cure cancer or even my MS, but I now see that you may well see a huge improvement, a twist if you like on positive thinking. I can’t help wondering though if like the gadget we think will change our world if the people cured by Derren Brown, in ten years time have forgotten what he did for them and they are back at point A with a cure in a cupboard somewhere forgotten about. I have said many times that self belief plays a huge role in my life and without it, I am sure I would not be as well as I am.

We all know, including the medical world, that placebo’s work, if the person believes for many it will happen, I can’t help wondering if more time was put into helping people deal psychologically with their illness, if the result might be, people who can live a fuller life with what ever their condition is. Hopefully that would also remove the openings for the scammers, the quacks just looking for money, as what they supply is the belief, a psychological crutch. Done properly and there through out the life of the condition, then it hopefully the treatment wouldn’t land up hidden in a cupboard, some might find that that is where their condition actually goes.