Yesterday was my pancake-making marathon, I have definitely decided for now that the best, simplest and most flexible way of eating Psyllium is pancakes. There are so many different things you can add to them so they just don’t get boring. I would recommend though that you use yeast to raise them, as it makes a much lighter mix as Psyllium does make everything heavy. I am at last starting to get some results as well. I have actually in the last few days started to go to the loo without straining for hours or pain that makes me feel as though I am going to pass out. It’s a slow process but it’s happening and that to me is a wonderful result after the past six months of hell. I think I have worked out why it works as well. Clearly not all the nerves in my intestine are dead, more weakened and unable to manage the daily transition most are. 10 – 14 days I know is slow and a very long time, but the sliminess that the Psyllium produces, means that even my weak nerves can manage to get it out of me eventually. Now knowing that that isn’t actually doing me any harm, I can live with that. It has been really hard to know what was working and what wasn’t. Firstly because of my week of not eating due to my COPD exacerbation, then I had a stomach bug a couple of weeks later and I was once more empty and back at the beginning of having to fill myself before I knew if it was going to work or not. Day 11 of food arrived and result. I’m not expecting to go daily as I don’t eat enough for that, but as long as I go every few days, then I won’t be complaining. As I said yesterday, the daily pain is just something that I will have to live with, but that’s a different issue.
I am finding this switching everything over to my new site hard going. My brain really doesn’t want to take in all the information that setting something up like this takes. I had been over and over the same problems so many times and forgotten so many times where things are, that my head almost hurts with all the coming and going. I know that without a doubt this site is well set out and easy to navigate, if you have a brain that remembers. For someone like me it is a total nightmare. I know that there will be a point when I do remember and I don’t have to relearn what I worked out and thought I had under control an hour ago, that point can’t come quick enough. I know that there won’t be a single person from my old site who isn’t pissed off by having to move, but I bet there are only a handful of us having issues like I am having. I know this is an extreme situation and no business plans to go under, but when you live with brain damage that sees change as a personal attack, being forced to deal with the new and complex is a step beyond a nightmare, whatever that is. Because I am who I am, I didn’t do the sensible thing. I didn’t spend several weeks setting things up and reading everything about the site before starting the actual work of shifting and working in a new environment. That would have been sensible. My brain doesn’t do sensible, it just does panic. It only knows how to react these days, not plan it. I got the message the site was closing in December, and I had to do it there and then. On the good side, the panic has gone, I’m just living with confusion and the ever resident frustration.
I am still at a loss as to what happened to my right arm yesterday. It was lunch time before the numbness wore off totally and I could actually feel it when I stuck a fingernail into it. It was weird all morning picking up my glass and to feel it in half of my hand, but not on my index and thumb. I had to keep checking that my thumb was doing the job as it felt as though the glass could fall any second. Not being able to trust my body is something I am reasonably used to. It can be scary at times, as I find myself constantly jumping in expectation of my falling, or tripping, or dropping something. Most of the time it is perfectly OK, but the longer you live with a body that doesn’t act in the way it should, the more that mistrust grows. I have been extra jumpy in the last few weeks as since my exacerbation I seem to be finding myself not quite so well balanced. Sideways steps keep appearing in all my forward motions and nerves are jumping and throwing me off constantly. If you go to put your foot on the floor and suddenly you foot jumps tilting itself upwards towards you knee, it’s more than off-putting. Especially when your foot hits the floor at the wrong angle. I have also noticed a marked weakness in my legs. To date, I have been able to stand on one spot for about a minute without having to check my stance or sit down. That seems to have changed as well. My legs just don’t feel able to hold me that way, I have to move about more from foot to foot and at times my knees seem to buckle with more ease. There is also a greater loss of balance at play as well, which just adds to my need to move from foot to foot. I for some reason I have my eyes shut, like when I am washing my hair, even though I do that seated, I can feel myself slowly tilting. It’s not just in my legs, my arms are misbehaving all the time as well. I have lost count of the times I have been unable to pick something up or I have hit things instead as my hand has jumped. I am sure now that the exacerbation triggered some sort of flare or acceleration, I suppose it would have been surprising if it hadn’t. It’s the reason that both Adam and I fear me catching any bugs and so on, as my PRMS will react in some way to it, even a simple cold has a knock on of some sort.
I have also been very aware that my eyesight is worse following the exacerbation as well. Everything has an extra layer of unrequired fuzz. I know my right eye problems have nothing to do with my PRMS, but as it’s my left eye that seems weaker, the culprit is easy to find. It is still my greatest fear that it is my eyesight will be the first thing to give in completely. I don’t have any reason to believe this, just the normal human fear that the one thing that would stop me dead in living my still partially independent life might be the first to succumb. I suppose we all have our personal fear of what might be the first thing to go, but I bet that eyesight will be high if not the top, on everyone’s list. Piecing together all these small things and others I have mentioned in the past month, along with their timings, well I think anyone will see the same pattern that I do, my right arm was just the missing label required for identification. With luck, it will all just settle down, without it, well we will see. My ever present friend the waiting game has another string to observe over the next few weeks.
Please read my blog from 2 years ago – 20/07/2013 – When weakness take over
There is nothing like fighting with a bottle of coke where the factory has added the cap so tightly fixed that you just can’t open them. If you don’t at this second in time have a set of old fashioned nut cracker, I suggest that you buy some right now. Of all the silly little things I bought years ago it is the one I have used the most. Fabulous for opening Champagne, well in my case Carver with ease, if you take your time, as they do slip on the plastic tops they are equally good on…..