Big steps, huge questions

I tried yesterday my idea of making pancakes out of the Psyllium and it worked really well! Much to my surprise the taste wasn’t too bad and by using salted butter, a really small amount, to cook them and a tiny piece on top to melt into them, the tasted wasn’t perfect, but perfectly edible. I made just three small pancakes about 7 centimeters round and half a centimeter thick, in total they containing about half the dose the doctor recommended, with an equal amounts of flour, one beaten egg, and some milk to make a really thick batter that sort of drops of the spoon. As I didn’t have any self-raising flour, I tried plain, which made them a bit heavy as beating in the air was hard work. I now have the right flour, so today I am going to make a double batch and try putting half in the fridge until tomorrow, I am a little worried that they might turn to rubber, but without trying I won’t know. I know the plain flour didn’t help, but they were a little heavy and very filling, I couldn’t have managed another mouthful if I had tried. I was also full for a long time after, which for some people might be a good thing, especially if they are trying to watch their weight, Psyllium could be a way of curbing appetite whilst doing their insides good as well. Anyone else who is going to try the pancakes, remember to have plenty to drink with them as the Psyllium will continue to draw water into itself even after cooking and eating. At the moment, it looks as though pancakes will be on the menu daily, but in time I am hoping that I can also come up with some other ideas that I didn’t find online as most of them didn’t really appeal. I do now also have the ingredients in the house now to try the milkshake idea as well, as I will need variety and if I am going to feel so full so quickly and a way of spreading it out over the day as I severely doubt that I will manage the whole dose in one. I will, of course, keep you updated with the possibilities and the results, which so far other than feeling full, are zero.

Diet for me has been a problem area for many years now, with my body so anti-food, but my weight still rising as I can’t do anything but sit around like a lump of lard, what and when I eat is a constant puzzle. Changing my diet totally, as that looks as though is exactly what I am going to have to do, isn’t exactly filling me with excitement. The hard thing is getting enough of everything I need to stay alive, out of the limited things that I can or want to eat. My appetite is tiny so I have developed a habit of grazing on something different every few hours, which doesn’t fit with filling milkshakes, pancakes and large quantities of liquid, which are filling on their own. When you are still mobile you never really think that closely about what you eat, even though we are supposed to. Yes, I didn’t eat certain things out of likes and dislikes, but also because I knew that tucking into burgers and fries isn’t exactly going to do anyone’s waistline any good. Being active though actually means that we can eat a lot of things that we shouldn’t and get away with it, being sedentary, not just sitting in an office, but truly sedentary, every single thing you eat just turns into fat that you don’t need. I even went as far as checking the calories required by someone in a coma and was shocked to see it is the same as someone on a diet, I was shocked as my calorie intake was below that already and the weight was still going on. I was left with one conclusion, I had to try different things until I found what worked for me. In the last 18 months, my weight has actually gone down a little and I do mean a little, as over that time I have lost half a stone so my fears of what my new diet will do to me, not just health wise or how my PRMS will react to it, I believe is a very fair concern.

This isn’t the first time that I have had to deal with something this complex on my own, it is something that has reared its head throughout my illness. I was very aware the other day at the hospital that the doctor I saw was shocked at just how little help I was receiving, even from those who were supposed to be there to help me. It is a problem that I have found over and over again, the so-called experts aren’t experts in anything other than the average. If you don’t fall into their limited range they all just group together and tell you to listen to this or that doctor, it’s almost as though they fear going against your revered medical advisor. It didn’t matter if it were the continence nurse, district nurse or the MS nurse, their answers were identical and simply didn’t work for me. It took one doctor of a higher rank in their club to say stop it all, this is pointless let us look at it from a different angle. Similar things have happened before to me so I know already that all the rest will now fall into line to back him up, like little soldiers they will take their commanding officers words as the new bible and they will just repeat them, without the slightest personal knowledge what so ever. I know that medicine is a huge field and no one can be expected to know everything, but I am finding more and more that their lack of knowledge actually outweighs what they know. It is bad enough when you have just one condition, but as soon as your health becomes a complex mix of different conditions, the knowledge of how to care for you goes out the window.

The odds say that somewhere out there in this huge world, there will be someone else with my exact mix of conditions, the chances of finding them is nil, finding a doctor who has successfully treated someone identical to me, is even less, so I like so many other people am on my own on working out how to care for me. No one, not even the doctor who started me off on this path of finding something that will help me deal with the complex mix of dead and overactive nerves in my guts, actually knows what will be the thing that will make the difference I need to make life good again. I might be doing exactly the right or wrong thing for my PRMS, but is it the right or wrong thing for my Fibro or my COPD, or will it upset one of my minor conditions, all I can do is cross my fingers and hope. The medical profession can’t help someone like me, I may keep turning to them because I am at a total lose and I may as I was this time be lucky to find someone who listens, but that is what it will always be, luck. I don’t believe that they don’t want to help, it’s just they are at as much of a loss as we are, but the good ones, well they at least try and even if their trying is nothing more than a list of possibilities, well that is a million times better than nothing at all.

I may not be in a coma, or be the size of a beached whale, but nutrition is so much more than just keeping ourselves alive, as it has to be enjoyable, if it’s not, we give up. If you want proof of that, well just look at the millions of people who are morbidly obese and the long lists of failed diets that follow them. Even when our very lives depend on it, we would rather eat what we shouldn’t, than eat what we know we should if we don’t like it or if for some reason it is not right for us. Bring all these things together and you are at the start of the battle that I have just entered, nothing is as simple as saying do what the doctor says, especially when the doctor is talking rubbish and almost as hard as when you know he is talking what possibly might be the right answer. Right now I have hope, that alone is bolstering me and making my doubts and fears seem small, but I know without a doubt that I have to be aware of them all, as it takes seconds to make my health worse and months to make it better.

Read my blog from 2 years ago today – 22/05/13 – Relief from my body

As a day, yesterday turned out OK after my shock of my online electricity bill, it just shows how what you imagine as a nightmare can be changed totally but how your phone call to complain is handled by their customer service staff. Having worked in call centers for years, I know how hard it is not just for the companies to find staff like that, but for staff to remain positive and helpful through the entire day. There is always a knock on…..

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