Wishing time away

Adam touched my back gently with his hand as he went to give me a cuddle and to kiss me goodnight, I nearly shot across the room in response to the pain, pain that had been building since lunchtime yesterday. I felt fine when had my breakfast but by the time I was halfway through yesterday’s post I was starting to feel really wrong, really, really wrong. I couldn’t have told you then any more than I can now what was causing it, all I knew was I wanted to go to my bed, curl up and disappear. There are spells like that that appear and just what is behind them I have never known, it feels almost as though my body is screaming at me that it is somehow poisoned, fighting for its existence against some totally unknown monster that is grasping hold of more and more of me as it travels around inside, almost playing with some areas, but in others stamping it ownership with pride. When I feel like this, pain always seems somewhat secondary alongside the feeling of an impending doom from the constant sickness that lives throughout me, I used to link it totally to food as all too often it does match up with times I have eaten. Yesterday, eating just made it worse, I have lost count the number of times that I have tried food as the solution only to find that it does the total opposite, but my body is telling me to eat, so I do. If I am lucky it will last a couple of hours and then pass, if not, it will just get worse and as it worsens, well my body goes into some kind or mad destruction mode as it triggers spasm after spasm and made sensation after sensation. Yesterday it was the pain and boy do I mean pain, I took my booster pills and they didn’t even touch it, hence my reaction when Adam put his hand almost over my kidney. I had just spent two hours doing whatever I could think of to remove the pressure on almost every inch of me from my breasts to my knees, not an easy thing to do as at best, at best you relieve one area, just to upset the next.

If I had known what would happen when I ate my lunch, I wouldn’t have touched it, but as so often happens it wasn’t until I had actually finished it, that the pain in my diaphragm started to build. Before I ate I just had my normal pressure and discomfort, but the addition of food to my system, just pushed it over the top, I spent the next hour sitting here doing whatever I could to stretch my body and to keep as much space as possible around my diaphragm, which of course meant even more shallow breathing. Having to breath by using your ribcage to control everything rather than you diaphragm isn’t easy and it’s quickly tiring, not just because your oxygen levels start to lower, but the muscles themselves get fatigued just because they are not used to doing the work. Also as the oxygen levels in your body start to lower, if you are not careful, your body takes over and forces you to take a deep breath, something that is best to be avoided. Trying to do all that and still get on with what I am doing on my PC takes one other thing that I lack in buckets, concentration, forget for a second and my body makes me pay. Lying down for my nap was something that I was really in need of, I knew that the actual sleep would be limited, but I needed to rest and I needed to un-cramp all my muscles, to my total joy, they all obeyed and my hour and a half was time well spent as I actually felt better. I actually had high hopes that the evening wasn’t going to be that bad and when I sat back down here, all seemed well and remained that way.

All was fine until around 7:30, I don’t know where it came from, but it hit me like a ton of bricks. I was suddenly in severe pain, more pain that I have ever had from my diaphragm before and the pain at the two points where it always feels as though something is trying to get out through my ribs, well I was sure this time they would succeed. Every inch of my diaphragm was tight, putting everything inside me under pressure and doing it damndest to cut me in two. I was due my meds at 8pm, so I took a booster pill, when nothing seemed to change, I held onto the fact that my normal meds, had to be at a low and that hopefully when I took them and they kicked in all would be fine. The pain in my stomach then started, three distinct points and each as sharp and stabbing as the other and all three were pulsing. I had a shred of hope that it was just wind so I headed to the loo and set about massaging my stomach in the hope it would move, nothing changed but I did suddenly empty my bladder of a huge amount that I didn’t even know was there. Doing so also did what quite often happens to me that I don’t fully get, but it caused pain to rush up either side of me abdomen and into my back, it is the sort of pain that I would have expected if it had been the other way round, not as I emptied my bladder but as it filled, it is more like I would expect from building pressure, rather than emptying. Again I headed back to the living room in the hope that the pain would settle now that there was more room in there. When your body is that out of your control and nothing that comes to mind or has worked in the past, doesn’t work at all, time goes incredibly slowly. By the time I was sitting in the kitchen taking my meds, I didn’t even know how to sit on the edge of the perching stool and leaning over to fetch the strips of tablet and array of bottles, well lets just say it wasn’t comfortable, but I swallowed each and every one of them with the largest spoonful of hope I have ever taken. I know that my meds take about 20 minutes to kick in, hence the fact I take them at 8pm, as that allows them to be fully working when I go to my bed, but the time was ticking past and as I sat with Adam watching TV and eating my 6 olives I always have after my meds, it felt at first as though nothing was changing. I was wrong, it was getting worse. All I had added were my meds and 6 olives, I felt as though I had eaten a full 16-inch pizza by myself, as though my insides were going to explode. I couldn’t even go to my bad after I had cleaned my face and put my creams on as I couldn’t bear the idea of lying down at that second, for some reason the kitchen seemed like the best option so that is where I went.

I wish that I hadn’t tried to listen to my body as the exact thing it was telling me not to do, turned out to be the closest I got to an answer, going to my bed. I had sat in the kitchen for another ten minutes while I had a cigarette and took the one med I didn’t even think about earlier the strong laxative that I take when all else fails. I had it in my head that at the least if it was wind and not tightly locked spasms as it felt they were, that it might shift it, I was willing to try anything, even a medicine that I know causes pain, back to front maybe, but what else could I do. Cigarette done, I had no other options left but to go to bed, it was then that Adam when to cuddle me, I so wish I hadn’t jumped as I know it is Adam’s constant fear that he is going to cause me pain and now he knew he had. I just didn’t expect the pain that it caused in any way what so ever and all he had done was touch me, he was nowhere near the point of closing his arms around me. By the time I reached my bed I had been in incredible pain that just kept growing for an hour and a half and I was filled with dread by the whole idea of adding presure onto everything by lying down. All you have to do is read back a few posts to know that bed is the worst place for my diaphragm, the whole process of being flat on my back just intensifies things and last night was no different, but there was one wonderful thing that I hadn’t expected at all, all the pain in my abdomin, slowly vanished, no wind, no forceful thumps as things moved, it just faded away as did the spasms in the tops of my thighs. Somehow, shifting my weight from vertical to horizontal, changed it all and all I was left with was what was happening in my upper quater. I had spent so much time breathing with my ribcage that it felt as though my entire right lung was on fire and the sensation I often get of my lungs and broncial system being pushed out of the way by a large sphere being forced into my chest cavity was intense. I could actually feel ever atom of air passing down from my mouth right into my lung and I knew that sleep wasn’t going to come easily. I had been lying there for about half an hour when I took a decision that I have never done before, I took another booster pill. I honestly didn’t care by that point if I felt as though the whole world was floating in my brain, I just couldn’t take another minute of not being able to preform the simple machanical action of breathing and I was exhausted by the whole evening. To be honest I don’t remember any strange effects in my head at all, I just eventually found the sleep I was looking for, but it took my normal 70mg of slow release and 20 mg of normal Morphine to bring the pain to a level I could eventually sleep.

Today, well this isn’t going to be a good day, I already know that. The laxative has done nothing, the meds I took this morning, just as lasts nights did have activated the pain in what was already a very uncomfortable diaphragm. Part of me wants to call the doctor and part of me says what for, today is Friday, I wouldn’t even get any new meds from my GP before Monday and what new meds can he possibly give me other than more Morphine. Right now, I can manage as the pain and discomfort isn’t anywhere near where it was yesterday, but it’s not even luchtime yet.

Read my blog from 2 years ago today – 24/04/13 – Redefining myself

Making my mind up yesterday to go with what I have to seem to have made a difference, it wasn’t a cure, but by cutting what I put out on twitter and not trying to force myself to write what had no chance of being completed, meant that I slept better in the afternoon and I had time to……

2 thoughts on “Wishing time away

  1. Reading your blog makes me feel so very humble Pamela. We all moan about our aches and pains but people such as your self and my husband included who suffer hourly pain and discomfort through a debilitating illness bear your pain so bravely. My feelings are to try to comfort you by reaching out and sending my love to you to help you on your journey!Thank you for your blogs they must be so helpful and comforting to so many people who read them!🌷 XX

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  2. I WISH THAT I HAD AN ANSWER. I WISH I COULD HELP YOU. THE ONLY STUPID THING THAT I CAN THINK OF IS THE OLIVES. I TOO EAT THEM AT NIGHT OR MORNING,JUST SO THAT THE MEDS DON’T EAT MY STOMACH AWAY.2 NIGHTS AGO; AFTER A FEW OLIVES, I HAD TO USE MY PORTABLE OXYGEN MACHINE.I COULDN’T BREATH AND THE PAIN WAS HORRIFIC.THIS IS THE THIRD TIME OLIVES HAVE DONE THAT TO ME. I KNOW YOU ARE VERY DIFFERENT FROM ME; BUT IT’S ALL I CAN THINK OF NOW. HOPE TOMORROW IS BETTER FOR YOU………NEVI

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