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…..

An unexpected result

Yesterday was totally exhausting, the early start at 6am when I woke in pain, wasn’t the best start for a day that I knew was going to be difficult, but that’s what my body does best, annoy me in any way it can. Adam had taken the day off as he always does when I go to hospital and once we were both ready to go we sat as always with him bobbing up and down to the window, just to see if that noise was the ambulance arriving, when it did he heard nothing other than the front door buzzer, just as I did just sat here quietly at my PC. Our trick of getting him into the ambulance worked as it always does, they never seem to say no, although if you mention it when booking they always say no. As always the crew was really lovely, for a change one of them had actually tried going up and down stairs in the stairclimber, so totally understood when I said that I hated the thing, my opinion hasn’t changed at all. In fact, I would say that I now have another reason to dislike the thing, as the vibration that goes through me when it drops down each step, shuddered and shook my insides and by the time we were at the bottom, well the pain on my left side reminding me exactly why I was leaving the house again. For once I was greeted at the front door by not by the normal rain so I didn’t get the normal joy of rain coming straight down onto my face as the tip and shift me into the back doors of the ambulance, it was really nice to get there dry, if blinded by the odd thing in the sky I haven’t seen for such a long time. It’s only a 5-minute drive if that, from our home to the hospital, so we were in good time for my appointment and as usual as Adam works there, he pushed me through the corridors to where we had to go and were seen in just minutes.

Introductions over, I handed the doctor the sheet I had written up in trepidation, as I said before I honestly thought it would be put to one side and ignored, but he listened to what I said about not being able to remember or to always put things into the spoken word and he read. I watched as he worked his way through it, as I kept expecting to see that he was just skimming through, but he took his time and stopped occasionally to ask something before returning to the sheet again. He stopped when he reached the piece that said I was on Lactulose and he stopped dead looked at me and told me to throw it in the bin, not to take another drop of the stuff as in his words, “It’s a sugar filled rubbish that does nothing useful what so ever for anyone, out it in the bin”. I did question it as I thought at least that it was helping to keep my stools just that bit softer, but again he was direct and said “Don’t take any more” in a way that had me almost wanting to answer ” Yes Sir”. When he finished, he stopped and said, well I totally agree with you final line, then asked if it would be OK to examine me, while he left the room to fetch the nurse, he helped me onto the examination table and then disappeared, I had to ask Adam then to read me the final line as I didn’t have a clue what it said. My heart sank a little as Adam read back what it said “I am at a total loss as to what to do to relieve it.” I really didn’t want to hear that at all. The examination only took a few minutes, I had to ask them for assistance twice as I couldn’t either roll onto my side or get off the bed, it was at a really odd angle and pushing myself up was just impossible.

Sat back in the wheelchair at the desk beside Adam, there was that horrid silence before the doctor actually spoke and he was really nice and really seemed to totally understand the problems that I was having. He too confirmed that the problems are all down to my nerves not working properly, but he reassured me that the pain I am in isn’t a sign that the gut is about to burst, it is purely nerve pain being caused by my PRMS. He agreed that the nerves aren’t pushing things through me, but he didn’t think there was any operation that would help me, he then went through the possible ones and said that the removal of my large bowl and the attachment of a bag would help with constipation, but he didn’t believe that it would help with the pain. He was quite convinced that the pain would probably continue as he believes that it is my screwed up nerves that are behind it. He then asked me which was more important for me to be rid of, the pain or constipation, clearly to me the pain is the bit I need help with. We discussed the medications that my GP had put me on and he told me to stop all the laxatives as all they were doing was causing unhelpful spasms and wind, both which would make the pain worse, I agreed with him wholeheartedly and said that was why I couldn’t take some of them every day as the pain prevented me from sleeping and that in turn upsets my PRMS. We went over the useless help I had had from the MS Nurses, who simply told me to take the meds my GP prescribed, the pain clinic who told me there were two drugs they had available, both marijuana based and both in their opinion were useless and not worth taking, and my history of the whole problem when spoken about with other medical professionals including my relationship with alternative medicine, which is not favourable. At that point, I was almost convinced that I was once again going to be left just to get on with it, but he reached forward picked up a pen and piece of paper and started to go over things that might possibly help.

We actually have both a written list and a lot of things that he spoke about as possibly helping as he believes that it is going to be a case of trial and error until we manage to get it under enough control to be livable. He also noted that it had been a really long time since I had had any blood work done, they are now doing the normal full spectrum plus a test for celiac disease, which surprised me as it is hereditary. Having read about it now, I see why he wants to rule it out, but I expect that is what it will be, ruled out. When Adam and I got home, we both went online and started to research some of what was on the list and some of what was just spoken about and we are both in agreement where we are going from here. First, we have ordered two diet supplements the first is Psyllium Powder, he actually recommends that everyone takes 29grams of Psyllium every day, he actually said that the government should stop trying to get everyone to eat 5 a day and just to take Psyllium instead, as in his opinion it is a magical substance for our intestines. It must be the powder though as the capsules don’t work so well, it’s tasteless and it can be mixed into anything, online we found people who added it to all their baking or apple sauce, but I think I’ll just put it in some yoghurt to start with. The second is peppermint oil capsules that have to have an enteric coated, the coating stops you from digesting it until it is into your gut rather than in your stomach. On the subject of diet, he said that a lot of people like me who eat “healthily” have problems with their guts, apparently you can be too healthy and although not said, both Adam and I got the feeling he was saying “eat some rubbish it will do your body good”. I am to try the two supplements for a full six weeks to see if they make a difference, I guessed what he was saying, it might make things worse to begin with, so give it six weeks before dismissing it as they have to become part of my system rather than something my body wants to fight. The third step, I have to wait a few days for, he is going to write to my doctor, but he also wants me to start taking a different spasmodic on top of the one I have, he listed three and as I knew already, it is a case of trial and error, I will have to find the one that won’t upset my PRMS.

There are a few others on the list including eventually an operation to fit a nerve blocker, but he seemed really keen to keep me away from operations, something I have to agree with. He joked that the letter to my doctor was going to be longer than the piece he read written by me, I very much got the impression that he wasn’t impressed by the care that I haven’t received throughout the whole thing and said he was happy to see me again, but as he is a surgeon it would only be in a support role as he really feels surgery won’t help. We thanked him but I’m not going to waste his time, we both felt that we were armed with information that gave us enough to work on and enough suggestions of where to go if it failed. He also asked if he could keep the piece I had written as he felt that it was important that it was added to my notes, which made me really happy as you know that was something I was hoping for as going forward, it is all there, no more repeating and repeating and no one can ever say they didn’t know as it would be more a case of them saying they didn’t read. On the whole I was pleased with everything that was said and done, yes I was a little disappointed that there wasn’t a quick fix, I’m human, we all want the unobtainable. I don’t look forward to more weeks of pain and having to try different things just to get some peace, but it just might work, if it doesn’t well we can go back to my GP and say we have tried it all, let’s try the next level of attack. I also have to get used to the idea that alternative medicine might just have the answer, he strongly suggest trying anything that might help and to not shy away because I feel it’s quackery, he has seen these things work and I had to agree that I have nothing to loose other than the cost and everything to gain if I can loose the pain.

Once we had finished our purchases online, I went to bed and slept for over three hours, which included sleeping right through the alarm sounding for a full minute. It was Adam who eventually turned up in the bedroom to tell me it was 5pm and that I needed to get up, he was right, bed time was closing in quickly. I was so tired yesterday that I never really went online other than to buy what was needed, so I have a lot of catching up to do today, but I will get there.

Read my blog from 2 years ago today – 19/05/13 – A body filled with memory

I have a new toy! I know that a few months ago I said I wasn’t going to do this but on two days last week I found myself with nothing recorded and nothing on TV that appealed, which I hadn’t already seen. I know have my TV linked to my router and I can now access “On Demand”, although I have just downloaded my first list of programs I have to say from what I have found already I wish I had done this months ago. That is all too often, the most annoying thing when you dig your heals in…..