Teach me before it’s too late

I am sat on my not used for a very long time blow up cushion. After four days of taking the laxative liquid that my doctor prescribed to work with the Lactulose nothing had happened, apart from a very disturbed nights sleep where I kept waking with the pain of things moving but going nowhere near where I wanted it to go. I even woke up pouring with sweat and feeling terrible, but despite it all nothing other than that I could feel it all sitting low inside me, so I decided to attack it with a suppository, bad move! Well not totally true, it did get things moving, but it also started a run of spasms in a place I haven’t felt them for quite a while now. In the past it has subsided in a few minutes like most spasms, but this one, well it just doesn’t want to let go at all. The pain is so strong that it is impossible to sit down without the aid of my cushion, actually that isn’t totally true, sitting on the loo is wonderful as it puts no pressure on the muscles in spasm at all. Sitting when it feels like someone has grabbed all of your tail-end with a large set of pincers, then twisting them and refuses to let go, is not my idea of comfort, unsurprisingly I am just waiting for the Morphine to kick in. It is one of the few spasms that just doesn’t seem to like most to break by applying pressure, logic says that sitting would be the best thing possible, but the second I try it, I am on my feet again. I can only guess that it is actually deep inside me and not as close to the surface as it feels, when your insides go into a tight spasm, it can be extremely difficult to deal with them, it’s second only to on my list of horrid spasm to those in my diaphragm and intercostal muscles and only lower on the list as it doesn’t happen so often. It can be easy to fall into the false situation of thinking that spasms only happen in the muscles we know exist and use daily with knowledge, where ever there is a muscle or a nerve, PRMS will find it and play with it until it gets fed up and moves on.

Adam came home from college and went out almost straight away as my prescriptions had arrived from the doctor, so he headed out to the chemist to get the final parts of the delivery system set up. As we thought, all we have to do is phone them and let them know that I have an ad-hoc prescription waiting to be picked up and they will arrange the rest of it, but I did once again manage to get myself wound up about one small silly point. When Adam handed over the prescriptions, he was told that they would be delivered on Monday and if they found anything needed ordering they would order it in them, delivering it when it arrived. I don’t know why, but I hadn’t thought about there being no deliveries at the weekend and for the life of me, I couldn’t understand why they would be waiting until Monday to order anything that they didn’t have and it was a point that I couldn’t let go off. When my mind locks on to something, it seems to take a long time for it to be willing to let go of it again, it wasn’t Adams fault that he didn’t think about questioning that point, it just didn’t occur to him as important, but every chemist I have ever dealt with orders drugs in the second they get the prescription. It put this huge doubt into my mind about the whole thing and I couldn’t stop myself from going on about it as though it was his fault. Once I realised, I apologised as I already knew that he was somewhat wound up about something else and all I was doing once again was piling pressure on him for something he had no control over. Luckily, the chemist also phoned us to question one of the items that they thought didn’t look quite right, they were correct and it put a lot more faith on my part in their ability to live up to the service they were offering. In the last few weeks, I have been doing exactly the same thing over and over again about all sort of things. Clearly, as I keep find myself writing about different instances of this, it is something that I am truly sorry for doing and truly unable to do anything about at the second it starts. I have been racking my brain, trying to find out just what is causing my outbursts as honestly, they don’t normally happen this often. All I can come up with is that in the past few months, our lives have been nothing like normal, it has been a constant change and upheaval. It’s not just my health, we have had to deal with and buy a new fridge, TV, skybox and the suite recovered, this means a trail of shopping around, deliveries, house upheaval and the normal stress that goes along with all of that. Also, Adam has had a lot of time off so far this year as he had to use up his holidays before the end of April, which again has thrown routines out and confusion on my part as to where he is and what he is doing. We are also still working on sorting out all the that happened at the end of January, nothing this year has been normal and thanks to my pain levels being raised by my lack of bowel action, I haven’t been getting my full nights sleep every night now for months. I honestly think that all that is happening right now is my brain screaming for peace, to be allowed to just veg out at the back of my skull and not be used again for a while. Unfortunately, that isn’t going to happen anytime soon, well at least not until we have been to see the doctors in the Gastrology department again.

At times, it is easy to forget just what my body is going through and how one little change can put me into a tailspin, all of the above is enough to send me not just spinning but could have easily sent me into the biggest crash I have ever had. I know I am hard on myself at times, but to me there is no excuse, brain damage or not, to put anyone through the third degree just because their brain doesn’t work the same way as yours. Adam knows I don’t do it on purpose, that it is all too often my pain talking and my brain failing to engage as it should, he tells me over and over not to say sorry for it, but right now, that is all I can do, I just fear for what the future may hold when I don’t know later what I have said and how I said it. I have seen in plays and documentaries on Dementia, Parkinsons and Alzheimers people who either say the most incredibly hurtful things without knowing they have or out of frustration start to hit out, I fear that either might be our future, but I don’t have the slightest idea how to avoid it. I just wish there was some sort of training that we could both gain from that would help us deal with what is happening today and what might happen in the future as I don’t want to keep hurting him as I already do and I definitely don’t want to hurt him in the future in any way either.

No one teaches us how to deal with being ill, far less how to deal with someone or even ourselves when our health has made us totally irrational and unreachable at that moment. I know there are some people who don’t understand how I manage, how I stay so positive or even how I have accepted what is happening to me, all of that I have found easy. What I don’t find it easy is accepting a future that means not only the loss of all that, but also the loss of me, without there being some kind of way of bringing me back and stopping me from hurting mentally or physically, the person who I love.

Read my blog from 2 years ago today – 14/03/13 – Relationships with Love > http://bit.ly/ZK9CNq

Having to work in a different order today as I don’t know when the ambulance will be, it could be any time after 11am which will cut my day right through the middle. So it has to be writing first today and fit the rest in where I can. I have done what I was asked to and had a lighter breakfast than normal and…..

2 thoughts on “Teach me before it’s too late

  1. NO. 1….DON’T EVER STOP SAYING “I’M SORRY” NO. 2….FIND A “SAFE WORD OR SENTENCE”….WHEN I FEEL LIKE I’M ABOUT TO ” EXPLODE “, I TELL MY PARTNER, “MY EVIL TWIN IS HERE, I’M SORRY”.IF I FORGET, THEY TELL ME, “YOUR EVIL TWIN IS HERE” IT HAS WORKED,MOST OF THE TIME, SO THINGS AREN’T SAID OR OBJECTS GO FLYING,BECAUSE I HAVE WORKED MYSELF UP INTO A MAD PERSON OVER SOMETHING SIMPLE AND FIXABLE. I HOP IT HELPS YOU. TALK TO ADAM, SO YOU DON’T HURT, THE ONE PERSON, WHO IS ALWAYS THERE FOR YOU. YOUR ILLNESS AFFECTS HIM AS MUCH AS YOU:SOMETIMES MORE. FIND YOUR “SAFE WORDS”, TO KEEP EACH OTHER SAFE. PAMELA, IT’S NOT YOUR FAULT.MANY HAVE GONE MAD, DUE TO PAIN AND ANXIETY. LOVE YOU I HOPE THE LOO IS KIND TO YOU.

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  2. Nevi, why do you type/write all in caps(capitals) are you aware it’s considered “shouting” online? I just started reading your reply to Pamela, but couldn’t continue, as all those capital in white, on a black/dark background, is really too much on the eyes? I did ask you a while back, why you type that way, but didn’t get a response.

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