I decided yesterday to try an experiment, it’s actually something I have been thinking about for a while, but just hadn’t quite had the correct things in the house to try it. At the end of June, I was experimenting with different ways that I could find that were palatable to get my dose of Psyllium into me. With my intestine and bowel nerves more or less useless, the consultant straight away took me off all the meds my Dr had prescribed said Psyllium was the only thing that would work for me. He was right, but he didn’t say just how horrid this stuff is, or how hard it is to disguise it. I found a couple of recipes that worked, but weren’t great and required me to sacrifice one of my meals, just to have the space to eat them. Even the pancakes, which were undoubtedly the best, were incredibly filling and required a lot of other things to disguise the taste, which is somewhat like an odd kind of grass. So what I tried might sound totally back to front, but it really works. I stripped back the pancake mix, removing all the flour and adding two extra eggs, as I had noticed egg covers the taste slightly. Just eggs, milk, Psyllium, a spoonful of honey and yeast. Once risen I was delighted to find that what I had was an incredibly light and frothy mixture, that spooned with ease. Normally it would be heavy, risen, but still heavy and as time ticked on, it set. Not only did it drop off the spoon with ease, it needed little spreading out in the pan as it did most of it itself and cooked with ease.
The batter looks horrid, even in the frying pan at first it looks more like a mollusc than a pancake, especially as the air bubbles bursting making it look like they were breathing. I knew that the yeast would have no effect on the finished article, it’s there just so I can spoon them into the pan, and it’s elastic quality lets you spread them out without too much trouble. What I was left with we an incredibly thin, light cross between a pancake and an omelette. Just two has the total measurement of Psyllium needed and they taste good with just a few drops of lemon or I would guess anything else. I did actually eat half of one with nothing on it. At last I have a way that I can with ease eat this stuff that had been a trial since my doctors told me I had to have it. They are so light that I believe anyone would be able to add them into their day as a snack and not a meal replacement that all my other recipes turned out to be. I don’t know the exact reason, but I can only think that the flour and Psyllium formed some kind of reaction that just made everything heavy. The final test will be answered tomorrow, how do they react to being frozen, exactly where they are right now, solid and awaiting defrosting.
Everything does seem to get harder and harder the more of your body decided to shut down. I know that is just logical, but it is so hard to accept that even the simplest things like taking a couple of tablets can turn into a drawn-out and dramatic event as you once again choke on them. I quite honestly can’t think of a single normal everyday action from going to the loo to getting to sleep that is not somehow affected. I have just sat here for a few minutes thinking and I honestly can’t come up with a single thing in my life that is straight forward any longer, or not a million miles from what I would have considered “normal”. The longer you live like this, of course, it becomes your new normal and you do honestly forget how simple life once was. Looking back I know with total honesty, that if someone had painted out my future to me in detail, I would have asked to have been shot there and then. Yet here I am, living what I would have thought a total nightmare and perfectly contented and happy in this life.
I guess that any of us can look at a list of symptoms that any condition might contain and think that we could live with them. What we don’t see is everything else that comes with those symptoms and the impact on things that we never expected would be changed at all. Somehow without us even knowing at first that it is happening it nibbles its way into our lives. I remember about a year post diagnosis being sent to the hospital as I had mentioned to my GP that the problems I had with my bladder were getting worse. For years, I had accepted that my bladder often took ages to empty, leaked and gave me the little notice that it even had anything in it. I had just accepted it as part of life and got on with it. When I arrived the sister in charged asked me to go behind the screen and sit on the commode which had some system that measured not just quantity but flow and pressure. I was to let my bladder empty by itself, not to apply any muscle pressure, just let it do what it did naturally. She told me it was the worst results she had ever seen, I didn’t dare tell her that it was one of my good days. The result was that I was taught to use catheter three times a day to ensure that my bladder was empty as there were dangers in leaving it the way it was. I religiously did as I was told for the first three or four months. But the impact of doing so was to me a worse issue than not doing so at all.
To me the embarrassment of being in the loo for 10 -20 minutes, as that is how long it took to firstly prepare the catheter, insert, use and clean up afterwards. That was as long as I didn’t have a spasm, especially not one in my bladder, plus finding a way to dispose of the catheters discreetly was too much. It didn’t matter if it was at work, when I was out or even at home if Adam or anyone else was here, I felt embarrassed. Add in the fact that back then the catheters were too big to conceal in my normal handbag and the whole thing just grew in my mind into this monster. I stopped using them. I still don’t use them unless things are really bad, then I do, I am not stupid enough to not do so. For me, the solution was worse than the symptom. Bladder issues, they sound so innocuous, the least important and the one with the least impact of my list of symptoms. Something that anyone can deal with and live with. But think again. Always going out with a bag filled with catheters and all that went with them, carrying spare clothes, underwear and freshening sprays in case a leak went where I couldn’t so easily clean while out, like my wheelchair seat cover. Constantly worrying about smells that weren’t there, accidents in public that you can’t cover up. Having to wear what were then bulky pads just in case, plus carrying spares if needed and then not being able to wear your normal clothing. Bladder issues on the surface seem minor, they’re not. Now start imagining the more major ones, that list of symptoms is no picnic when you look into what it really means to the person living with them.
These days I struggle to get things into me and out of me, that is where being housebound is a plus. At least here in the privacy of my own home if I choke on my own saliva, I’m not completely embarrassed. If my bladder lets me down, well I can fix it, there is no one here to see and no one who is going to make me feel stupid. But that doesn’t make living with them any easier, it’s just there knock-on effects that are now diminished. I might not have imagined any of this could happen to me, or anyone else if I am honest or that I or anyone could still be happy despite it. Trust me, we can.
Please read my blog from 2 years ago – 31/07/2013 – A question or 100’s of them?
I can’t find a single muscle or limb that will give me peace although I am doing everything I can to find a position that suites them precisely, a situation that has now lasted for 4 days. Like almost everything, when I wake they are…..
AS TIME GOES ON, WE LEARN TO ADJUST.THE PROBLEM; WITH OUR PROBLEMS; IS THAT THE HEALTHY JUST CAN NOT UNDERSTAND, WHAT THE PROBLEM IS. I GET SO SICK OF PEOPLE TELLING ME (DOCTORS TOO) “I READ OR I HEARD THAT THIS OR THAT WILL FIX IT. NOTHING AND NOBODY CAN FIX ANYTHING. FOR US IS >>LIVE WITH IT..OR SHOOT YOURSELF IN THE HEAD>> WE CAN DO NEITHER. ANY ANSWERS, PLEASE LET ME KNOW AT email@example.com. I’M DESPERATE !!!
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