Changing rules

I spent Sunday night not sleeping properly. I was in pain, but this one was different, it was at the base of my stomach and with every spasm, I felt sick. It wasn’t like any sickness I have ever felt before, as it seemed to flow through my entire body and there was an edge of something I could only call fear. It didn’t make any sense, there was no reason for me to want to throw up. I have been living with intense intestinal pain since January, yes, the position of the worst pain was slightly different, but it was triggering the now normal pain as well. Normally, pain in my intestine moves with it’s contents. Intense pain as whatever is forced forward, then peace, but this new area wasn’t like that at all, it didn’t move even a centimeter. For every spasm in my stomach, at least two more grabbed me deep inside my intestine and somehow there was an echo deep in my head. I have always believed that out bodies speaks to us, they tell us when there is something to worry about, or if it’s just something that will pass. The first real thought on waking and feeling what was happening wasn’t to get to the bathroom but to wonder if I needed to get to a hospital. It was nearly 2 am, I hadn’t eaten anything since 4:30 pm, there couldn’t have been a single thing in my stomach, and the dry wrenches that appeared as I eventually leaned over the toilet, seemed to confirm that. Back in bed, I could find nothing more than a fitful sleep, sweating as each new pain grabbed and twisted my entire gut into trails of knots and that strong feeling of fear didn’t want to leave me.

Just before 5 am I woke fully, the pain was at it’s worst and the desire to be sick was stronger and believable. I made it to the bathroom just in time and I started to throw up. I brought back quite clearly, everything I had eaten it the afternoon before. It didn’t make sense and the second it was gone, all the pain ended. I do mean all of it. It was as though a switch had been thrown and it was gone. I have never known anything like it in my life and it wasn’t until yesterday afternoon, that I started to make sense of it. When I made my pancakes last week, the first three I made were far too thick. I knew that, and I also knew that it meant that I needed to be careful with them. One of the things that Psyllium does is to expand, even after going through the entire process of being transformed into pancakes, they still expand further afterward. I had tested them ages ago when I realized the danger of the powder expanding in my throat. By making them as thin as possible and turning them into rolls with jam inside, that meant one small bite, was enough to form a mouthful, that then needed just a couple of chews, the danger was gone. On Sunday, I had broken the rule as the pancake was too thick to roll, I had taken big bites, hardly chewed and just swallowed. They cleared my throat, but I think it stopped my stomach from emptying, there was the pain and the explanation of how there was food still in my stomach, and the sudden relief. I guess it was one of those live and learn situations.

It doesn’t matter how long you live, life brings you more and more lessons and it appears that illness has to be one of the hardest, but truly effective teachers. I have lost track of the things that I have had to learn or relearn thanks to my health. It is one of the ironic things about dying, you have to learn so much more than any other time in your life, with the least possible time to use it. Every new phase brings something new, be it medications, or techniques of how to do things. The worst thing though isn’t just what we have to learn, it’s the fact that most of it, we have to learn for ourselves. I don’t believe that it matters how much contact you have with medical profession either. I remember going to so many different clinics and asking question after question and usually receiving blank looks as though I had been asking how to get to Mars, not something about my health. Dr’s, consultants, OT’s and nurses, mainly don’t know the details of our lives. They seem, despite the fact they are surrounded by perfect examples, to only know what is in their textbooks. What is so hard about learning from people, especially people living the subject you profess to be an expert on? The only true experts on illness, are those living with it. If you are going to survive any chronic condition, you have to learn for yourself and have a huge amount of common sense. I was warned not to take Psyllium capsules, but nothing was said about post cooking it, or any other way of taking it. If I hadn’t been inquisitive, I wouldn’t have known the rest. In fact, I would say that it is the first rule of survival, test anything that you are not sure off. Yes, that does include your medications, especially those you have been on for a long time. If I were still taking every drug that has been prescribed for me over the years, I would be swallowing ten times what I do right now, even now it seems like a lot.

I know that I have been wondering for a long time as to why it is that the medical profession don’t seem to learn from their patients. Especially when that patient isn’t the only one to have said the same thing to them. If I were the only one wondering, them I would put it down to the fact that I was the one asking odd questions that others didn’t, or telling them things that no one else has. But I’m not. The more people I am in contact with, the more people that I am finding who are saying the same things over and over. The NHS is desperate to make cuts, to bring down the bills and to make it fit for purpose. I can’t help wondering if they are not asking the wrong people how to do it. The problem with the managers and directors of any company, is they don’t believe there are a better ways of doing things. No matter how open minded, or how much they know, they are blinkered. If the NHS are to change, are to supply the services that patients really need and save money, then why not ask us. 50 MS patients would produce a totally different view of our care than any group of consultants would. I think they would be surprised to find that most would be open to a more streamlined system, especially one that is patient driven, rather than one with a tick box agender. The reduction in unnecessary hospital visits would save a fortune and not just for the NHS. Personally, I think it is time that we all took more responsibility for our care and our own health, something I believe that we are all capable of.

I have been housebound now for nearly a full 8 years. In all those years, despite my balance not being good and more falls and wobbles than I can even remember. I haven’t broken a single thing in this house. If you were to see my home, I know without a doubt that that statement would shock you, as my home is full of fine crystal. There isn’t a single surface in any room, or any space that I have spotted that isn’t covered. I have actually been really proud of myself over that fact. I have on many occasions actually caused myself worse injury than needed, just because I didn’t want to damage something else. That, though, is a sacrifice that I have been more than happy to do. This morning, I lost my legs from under me, just moving from here at my PC to my wheelchair. I stupidly, instead of twisting to fall onto the settee beside me, I let myself go the similar root, onto my chair right in front of me. I knew the brakes were on so it should have been fine, but it wasn’t. The chair twisted and the handle on the back of it hit one of my popery bowls and sent it flying onto the granite surround of the fireplace. There was no saving it, smashed into tiny pieced all over the surround and the carpet. I know it wasn’t the best or most expensive one, but it is the fact that I made the decision for safety, of both me and my home, that I should be in my wheelchair and it smashed it. Just when I was actually patting myself on the back at how good I was becoming at maneuvering around the house, my chair when I wasn’t even in it, managed to produce the first and what I hope is only casualty. New rule in the book of life, don’t fall onto wheelchairs, pick something more solid.

Please read my blog from 2 years ago today – 29/09/2013 – Who stole Saturday 

Yesterday went from worse, to worse to, still worst. I completed my post and started sorting things out on my other accounts, but I was having great trouble actually managing more than a tiny amount without stopping and just sitting there, looking into space and feeling like hell. All the feelings and sensations I wrote about….

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