The Perfect Storm

I received a tweet the other day from a friend, sending me a link to a piece of research information that I was more than happy to read. They have at last debunked one of the so-called “cures” for MS. For me, it was further proof that research papers really shouldn’t be put in the public domain. The article was published in the Lancet and following research paid for by the MS Society in Canada, on CCSVI. If you haven’t heard of it, it was a theory that blocked or narrowed neck veins to the brain might have been the cause. It has led to many people paying for expensive operations to be done, some claiming really good results, but many didn’t. The new research showed up something that had been totally ignored in the original, it’s not just people with MS, who have narrowed veins, and are totally symptom-free, in fact, 50% of those in the three groups they looked at. I fully understand that the publishing of medical research is really meant of the medical profession, but it is no longer staying there.

To me, false hope is worse than no hope at all, and this, is just one of far too many false hopes, that I have heard of in the time I have been diagnosed, and not just false hope for MS, for many, many conditions. In some ways, they are actually worse than the charlatan cures, as these are backed by well-respected organisations, with impeccable pedigrees, not someone with shiny shoes and slicked back hair and a dollar sign over their head. We all need hope, it’s almost a vital ingredient for a good life. I just wish, they wouldn’t publicise anything, that isn’t available today, tried, tested and rubber stamped, as I have spoken to too many people, distressed because they can’t afford the treatment they believe will save their lives. You just have to take a look at any of the funding circle websites, to see thousands of people, trying to raise the cash need for this or that treatment. Many are for well-recognised procedures, the fact they are there, is a different subject, but many are there on a wing and prayer. They would be better off spending what every money they have, just on living a happy life with those they love, for as long as they can.

I know it is up to us, what treatment we put our faith in. I guess it’s slightly different for me, as I have been told there is nothing, not even any of the disease modifying treatments already used for the treatment of MS, that will work for me, due to the form of MS I have. When you have been told something like that, you initially go through the disbelief. Yes, I searched in the hope of finding something somewhere, but when you come up against enough brick walls, you accept. I used to read every new discovery, but every single one I read always had somewhere in it, that it was only suitable for relapse-remitting MS. The odd one includes one of the main progressive forms, but none PRMS. I used to question my Neuro about them, but his answer was always the same, it’s not suitable for you. Now, well now I don’t read them, unless, someone sends them to me, and some do. When I do read them, though, I don’t look for a cure for me, I look for a cure for those to follow me, those who might at this second, be having their first symptoms. It is a fact, that all new therapies and drugs take testing, long drawn out testing. Nothing, even a new compound of aspirin, finds it way onto the market, without years of testing. Years, I don’t have.

There is one piece of information, that I want to hear far more than they have found a cure. I want to hear, that they have found the cause. I hate unsolved mysteries, the play on my mind, as I can’t believe that there is anything that can’t be solved, eventually. Personally, I have always believed that it will not be one thing, not just a virus, or just the locations it appears in, it will be a complex combination, that when the unfortunate person has collected all the pieces, they become ill. If you read from the start of my blog right through to today’s, you will find my opinion of some of those factors that build up to the perfect storm. There is one thing I am convinced of, though, they won’t find the answer until there is a universal questionnaire, that covers everything and anything, that could even have the slightest possibility of being involved. I have taken part in many online research questionnaires, in which there is always one glaring problem. They give multiple choice answers to check off, but in almost all, the answer I want to give just isn’t there. The second I find that, I know the research is flawed, and what I am actually filling in, is someone’s questions that they only want answers to, that prove their own personal theory is right. Once they do have a true questionnaire, it has to be given to everyone who has MS, regardless, of which form, and that the importance of it is truly stressed, so that those who usually wouldn’t take part in such things, will. Then, and only then, along with all the medical test results from their diagnosis, will they have a true picture, of what we the people living with the condition, really feel, think or believe. With conditions that can’t be diagnosed just by looking at the simple things, like blood and DNA alone, they are never going to find the answer. Running tests on a handful of people, have failed and failed again, so why keep repeating the same flawed process? Although, I am against postmortiums for natural deaths, these too, might be needed. I also believe, that it isn’t just MS, that would benefit from this approach. Yes, it’s time-consuming and, therefore, expensive, but if they want to really find the cause, or fully understand anything, they have to have the full data, to start with. Unfortunatly, until there is a way of doing all this for pennies, I believe, the causes will never be found.

The other day, I wrote about my thoughts on changing my pain control meds. Well, I have just spoken to my GP about the tablets I am on, and what I was hoping he would agree to. It appears, that the pain clinic was talking rubbish, I am already way above the upper levels of Gabapentin, so that can’t be increased. What we have discussed and agreed on, is that I come off the Amitryptiline and change over to a newer tablet that should have a better effect. Because I was reluctant to just do a straight swap, as I am aware of the withdrawal effect, I am going to take a staggered combination for one week then drop the Amitryptiline totally. Of course, in the time, it has taken me to speak to him, and write this, I’ve forgotten the name of the new drug, when I know, I will let you know. If at any time, I feel it’s not working for me, or the change over is too dramatic, well I will just go back to the Amitryptiline. If it fails in any way, well the only other option is for me to take an increase in Morphine. He thinks, from what I have told him, that I need to increase my current 70mg twice daily, to 90mg, but we’re not going down that route yet. I told him how many boosters I have been taking and he isn’t at all concerned about it, as he said, “That’s why I give them to you”. I don’t know what it is, but I doubt that I will ever be happy about spending my life on Morphine. I don’t even have a logical reason, that I am so against taking more. I can only assume that there was something I either read or heard, in the past that’s tucked away in my brain, just saying “No, don’t do it”, but I have no other choice.

 

Please read my blog from 2 years ago today – 07/01/2014 – Chipping and Changing

We have a large gold fan in our living room, it’s on the wall in the living room just above the sideboard. Back when the room had Christmas decorations filling any space large enough to take them and even the odd one…..

Finding belief inside yourself

I am starting to really feel the house being colder but I am still holding off the idea of putting the heating on. I have always been aware of the amount of electric and gas we use but it is worrying me now more than any other cost that we have to cover now that I am not working, I normally love winter and opening the curtains to see the world white with either snow or just frost, so far I have seen it only once, but this time it filled me with dread. Illness eats into so many small corners, what was once a simple joy is now a fear to be dealt with. I suppose much of my life could be seen that way, especially from the casual observer, but it is a million miles better than most think. I was asked this morning how I dealt with the really bad days, if I was totally honest I would say the simplest answer is that I deal with just as any other day, they start, I write, I read, I eat, I sit and I sleep, what changes is the time spent doing each and the speed each thing is done. I have like others that I now know, wasted time telling myself I will put that off until tomorrow, as tomorrow will be better, it is simply a case of kidding myself, yes tomorrow might be better, but it will never be again good. As long as I can find inside me, that feeling that life is still worth living then I am good and I go on. It is a belief, something you can’t be taught, it comes from inside and I believe that life is good. I don’t know what will be or if it will ever arrive a point that I will loose that belief or what I will feel if it did disappear, that is something that for now I can’t answer.

I find it hard when others want me to answer in a few words what it is that makes me still able to say I am happy and I can live this strange life that I find myself locked in. I worry that maybe I will say the wrong thing for that individual, as I don’t think there is a blanket one size fits all answer to any question like that. It may sound glib but I am happy because I am. If I asked you to analyses why you feel today is a good day or why last night you wanted to have a few glasses of wine, or why you love your partner, they are things that giving a concise and true answer to is impossible, because there is never one thing it is a mix of so many small things that make all of them what they are. Being happy is no different, nor are the other things everyone want answers to, I am what I am for more reasons that I expect I can even think of.

There are loads of things that I believe would truly help others to manage their illnesses and they are all written here in different posts, but the biggest one is here in this post and that is the belief that life is still good, that there is more than enough happiness to keep the balance tipped in favour of living and living with hope that life will remain good. You simply have to believe.

Hope in History

I am more than a little aware of the fact that I give a very upbeat impression of disability and I am not going to change that, sorry I can’t it’s just me. It isn’t just am image or a false persona by any stretch of the imagination, I was born with a glass half full nature, I was also born with a, listen to both sides of everything personality as well. I have always in life found it impossible to accept anything without first finding out for myself, the phrase “I am telling you it is right, so accept it”, the most ridicules thing for anyone to say or go along with. To me nothing in life is black or white there are shades not just in between but over and under them as well. This belief even at an early age got me into and out of trouble regularly and has lead me on many a path that were interesting and beneficial to my life.

Many people who have a chronic illness find comfort in religion, I myself have slipped in an out of belief from a child onward, having been brought up in a rather fire and brimstone version of the Church of Scotland I attended both church and Sunday School regularly, but at 15 I set out to find where I belonged and found not the answer I had expected. In 6 moths I went through my training to become a Catholic, attended some Buddhist gatherings in Aberdeen, listened to the teaching of an Indian Yogi, and read books on Islamic and Jewish teachings. I realise now, that I was a little young to have headed of on my quest, especially in the 70’s, when the teachings of ‘Peace’ where heavy in their impact on many generations, especially the teenagers. My conclusions at the time left me not as sure about the world but sure enough that I didn’t feel the need as I though everyone did then, to follow any religion at all. I learnt enough then to believe that there is a God and that every religion has it’s good and bad point. Through out my life, like many I am sure, I have flitted in and out the Christian faith, when my son Jeffery died, the church swept both me and my ex-husband up and supported us without asking. The forces padre’s always swing into action and we needed their support. Alone and many miles from our families, the Church we attended offered us support from every member of the congregation to their ministers, it is that experience that makes me fully understand why many disabled people find religion a comfort, as they offer so much that at times of crisis their network of organisations can be a great lifeline, but it was also a Padre’s actions that made me leave the Church and I haven’t been back.

So why am I telling you all this, well firstly as you should know by now, I don’t shy away from any subject, but I have found that there is an assumption that because I am a happy thoughtful person, that it has to be because I am a religious person. My religious beliefs have really not changed a great deal since I was 15. I am the person I am, because of my life and what I have seen and learned along the way, and from my love of history. I suppose, that I could say that I believe in history, the past has told me far more about life then anything else and like religion there is good and there is bad. I don’t draw my strength from anything greater than knowledge and knowledge to me is the greatest religion of all as includes all faiths, all theories, and all doctrines.

Whether you are a member of a religion or not is a personal choice, and if you have a mother like mine who is an Elder in the Church of Scotland it’s not an easy choice or peaceful choice to make, as still she thinks I should go to church. I do believe that to survive much of what is thrown at those who have poor health or disability, that you have to have a faith in something, if you want to believe in little green men arriving with a cure that is fine, or the mercy of Christ and God, or like me it is science, what ever it is faith is in a strange way what gives us hope, having hope is what makes anyone a happy, strong, giving person. If you have hope it is hard to be bitter, or angry, or depressed, or any of the other range of emotions that I have seen written down as so called ‘normal’ reactions. I have faith in science to control my pain, easy any of the symptoms and in one day finally finding the cure, even if it is too late for me, I still have hope because history has shown me we some how always get there.