Settling back into hope

The internet proved it’s power again when it comes to finding, buying and receiving something you need, the Psyllium arrived yesterday afternoon, now that’s service. It may have arrived, but the problem now is how to actually get it inside me. We ran a couple of tests last night to find that my idea or yoghurt is a none starter. I hadn’t realised that it was going to react with fluid and turn into a sludge just quite so quickly, I had mixed in about a third of the dose required into a small pot of yoghurt only for it turn into an inedible sludge in seconds. Both Adam and I tasted it and it just didn’t work, the Psyllium isn’t quite as tasteless as the doctor said, I can’t describe what it tastes off, but it does taste. The second test was to mix it with diluting juice, we had a bottle of Apple and Blackcurrant in the cupboard so I used it neat and suddenly had something that looked like pink papier-mache, also inedible and incredibly claggy as it stuck so badly to my teeth that I had to go and clean them to just get rid of it. It was Adam when he was cleaning up after my test that discovered another quality of this stuff, let it sit and it will go solid, but has an odd slimy texture once set, as one of my tests did set totally. I checked online and found some suggesting you just mixed it into water and drink it as quickly as you could before it turned into a sludge, not much help as I guessed after adding water to a small amount of powder that it would need a full half pint of water and the taste would make it hard to swallow. But I have a couple of ideas, sparked by a couple of blogs, first to turn it into a milkshake, that made sense if you use something to flavour the milk, the thickness would feel right as most milkshakes are thick. So I have bought some coconut milk, some skimmed normal milk and desiccated coconut, The idea is simple, make it as cold as possible, whizz it with the drinks blender and swallow, if it’s really cold and the taste right it might not be that bad. If I can get the flavour right and add the desiccated coconut to cover some of the textures it might work. The other flavour I think might work is vanilla, but to me I think the key is flavour and cold. I am also going to try making Scottish pancakes with it, getting the amount of flour to Psyllium right is the key but then I could cover them with butter and jam, then hopefully enjoy them for my breakfast. If the pancakes fail, then I could make Blini’s but that requires messing about with yeast but I think might be more successful. It’s clearly a matter of working with the stuff until I fully understand it.

When I was searching for way to actually get Psyllium into my diet, the other thing I found something that made a lot of sense to me, they all suggested that you don’t go headlong into trying to take the full amount to start with, but slowly increase it until you see what it is going to do in your body as we are all different. There is, of course, one other problem, the fact my stomach doesn’t like large amounts of anything, how it is going to react to trying to down any of these things quickly I don’t know, I am already thinking that whatever way I take this stuff, it isn’t going to be the whole lot at once, more spaced out over the day. There is one other danger here I just thought of as I was writing, I can’t deal with extra food over and above what I eat already, even though this is a supplement, it may well mean that I land up removing something else from my diet to make space for it. I guess time will tell. I know whatever I manage over the next few weeks it is going to be slow as one thing I have learned about my PRMS is I can’t do anything quickly, it is a creature of habit and if you push it, it pushes back so I have to be careful as I don’t know how it will react to this stuff. There is nothing saying that it should cause a problem, but then again there is nothing out there really about PRMS as we are a rare bunch, I can’t even be sure that anyone with PRMS has ever taken this stuff before so it’s another suck it and see situation. That is also why I decided when I had time to think about it, that trying things one at a time was probably the best way to go, I know that peppermint oil does nothing to me as I have taken it in the past so I am safe to throw that into the mix without thought, but I am not keen to try the antispasmodics until I have settled myself on the Psyllium

It strange how just knowing something has a possibility of being beaten actually had on you. I think I had got to the point where I was resigned to the fact that I was going to land up having a stoma or at least part of my intestine removed, so there was a huge relief when the Doctor said it wasn’t going to be the answer and that there were possibilities that might not cure but should improve the situation and then took the time to go over them with us. It’s odd, but all the doctors I have met in my life, it has always somehow landed up being the doctors who are not specialists in my condition. It was an ENT specialist who provisionally diagnosed my MS, he couldn’t be sure, but he took the time to sit with me, go over what he knew and what my MRI showed, I remember spending about 20 minutes with him crying my heart out, believing that my life was over despite him telling me over and over that it wasn’t the end and he was going to send me to see the best man he knew when it came to MS. I got that same feeling on Tuesday, to get the attention from a surgeon, who clearly felt that I had been let down by too many people, to take the time and go over things that really should have been tried before I was even sent to see him, well, he is now on my short list of good guys. The rest of that day and yesterday, although exhausted, I was on a high, I had hope back in my life and the problems and difficulties ahead of me just didn’t seem to matter. In fact, it went further than that, the pain that I have lived with for so long suddenly had a new feel to it, it wasn’t any less painful, but having that hope has changed how I reacted to it, I felt for the first time as though I was going to get some control over it and some of my life back. Even now sitting here unable to find any comfortable position isn’t destroying me in the same way, it’s odd, but that hope that this just might get better, has reawoken something in me that I had slowly lost in the last few months, myself.

I know that none of what we are trying might not produce the perfect outcome I would love, I’m not that stupid as to build this into a miraculous cure, I do realise that I probably will never be totally free from it, but if it only makes a small difference, it will be worth it. I guess we all get worn down by things that show no signs of improvement or that our doctors just don’t seem to be able to get to grips with, but this has been the first one that has destroyed so much of me, so far. I add the so far, because I know that my future will eventually be filled with those incurable and unchangeable things, but this has even given me some hope that they too won’t turn out to be as bad I can imagine.

Read my blog from 2 years ago today – 21/05/13 – Lost somewhere in my mind

There are times when you feel great and totally on the ball, nothing can stop you and life is not living you, but you are living it. Then with crashing realization you note all you have done all day, is screw things up. I thought those days were over when I was no longer required to write long……