The start of the beginning

Something has aggravated my diaphragm big style. When I woke with the pain yesterday, I was sure that it was once again down to my intestine. I had been to the loo the morning before. That meant I was due to go again anytime in the next couple of hours. Knowing that, I brushed aside any concerns and I just got on with my day. Sure enough, about an hour after getting up, I went to the loo and the pain subsided. The worst of it was relieved and what remained was my normal background annoyance. I honestly believed that was it, the day would continue without any need for a booster pill. I do my best not to just reach for my 10mg Morphine tablets at the first sign of raised pain levels. I know that a lot of people wouldn’t even give it a seconds thought, but I live by a rule that says I don’t take drugs that I don’t really need. Pain has to be constant and bad enough to make my daily life difficult before I boost my normal background meds. To my surprise, despite having a not totally but reasonably empty intestine, the pain started to rise again within twenty minutes of sitting back here at my desk.

The pain was running along its normal track. Right across the front of me following the line of my lower ribs. Dull across the central strip and reaching a sharp jagged pain near either end. As long as I am sat here not doing anything beyond typing, it is livable. That doesn’t mean that it’s ignorable, just not bad enough to stop me doing what I want to. When you have lived with something unchanged for over 2 years, it doesn’t matter what it is, I have found that you do eventually adjust to it presence. Having said that, there are different levels within what I now call normal and this was above my normal background. I was nearing the end of yesterday’s post when I was suddenly aware that I had without realising adjusted my breathing. I was once again settled into breathing in a very shallow fashion. It used to be not just a conscious decision, but a real effort to make myself do it. Our bodies are designed to ensure we have more than enough oxygen in our system. Making yourself restrict your intake because doing so causes pain isn’t normal, even essential at times. It used to take intense concentration to find a level where I had enough air, but without straining against the already tight muscles. Even then I knew there might be a price to pay. If I didn’t get it spot on, my lungs would take a sudden gasp, that, is a pain no one wants to have. There have been a few occasions where I have found myself shallow breathing on instinct when I was lying in bed, but to find I am now doing it whilst up, kind of surprised me. I don’t know why, as it makes sense that our bodies start to adjust by themselves, it’s just to date this appeared to be the exception to the rule.

All day yesterday, there was no relief from my diaphragm. I did around 1 pm, give in and take a booster. The pain wasn’t only worse, it had by that point spread all the way around me. Still worse on the left than the right and the pain was by then travelling upwards into my armpits and on it’s way triggering intercostal spasms as well. By 1 pm it had reached the point where it was driving me nuts. Plus Adam was by then sitting in the living room. Shallow breathing and talking have never really worked together. I hadn’t thought about it until yesterday, but I think that might well be the reason that I manage weekdays taking far fewer boosters. Monday to Friday, I have no one to talk to all day, so my diaphragm can do what it wants and frequently does. Booster pills may take away the pain, usually, but it doesn’t change the fact that the muscles are still tight and not working normally. As the day passed, the muscles of my chest where determined to remind me at every breath just how difficult it can make things if they choose. Breathing when you quite simply can’t expand your chest is difficult, these so called hugs must once again been coming from a Polar bear. As long as I stay relaxed and calm, no matter how tight, I can keep myself breathing. I know it is probably my imagination, but I have become convinced that at times, I can actually control it right to the point that I am breathing using only one lung. I am sure that is impossible, but it does feel as though that is what I am doing. Between spasms, the odd sudden intake of breath and just fatigue from constantly being controlled, by bedtime, there wasn’t a muscle in my rib cage that didn’t at least contain residual pain. It was another night where I could toss a coin as to whether I went to sleep or passed out.

I have little doubt as to what today will contain, my ribs told me that the second I lifted myself off the bed. A thumping headache told me just how last night was as well. I haven’t had a bad spell like this for a few weeks now. Everything has been surprisingly quite, not painless, or discomfort free, just at a level that I could handle without any thought at all. When I don’t think about things, I don’t write about them. I just wish their absence from my posts actually meant an absence from my life. The biggest thing running through my mind is not how it feels right now, but how it is going to affect me in the future. I have had a growing awareness since the COPD exacerbation that on certain days, I am getting slightly breathless just doing things like walking to the bathroom or kitchen. It’s not all the time and I haven’t been able to pin point what causes it, other than it happens more often later in the day. To date, just as when my muscles go into spasm, if I stay relaxed about it and just breath steadily, it settles down. To date, though, I haven’t actually had both at the same time. I don’t have the slightest doubt that I would manage it just as I do everything else. What I am thinking about is the future where that might happen all the time and much more severely. I am beginning to think that it won’t be a case of one or the other killing me, but a combination of the two working together.

It’s odd how I still persist in trying to keep my different conditions totally separated from each other. I know this particular separation was first caused by the consultant. He did say that even if I stopped smoking, that my PRMS could still stop me from breathing. He gave it that picture of one or the other, where the truth will probably be that they work together. That was part of the problem during the exacerbation, I kept getting extremely painful spasms. Lungs filled with water when crushed by muscles that don’t want to let go, don’t leave much room for what should be there, oxygen. Probably the only really good thing you can say about being that ill is that your brain doesn’t have the energy to really grasp the situation yours in. I didn’t once perceive any danger, other than landing up in the hospital. That was enough to be terrified of, more than enough for any one brain to deal with at one time.

It two months on now, yesterday was the kick that I needed to actually start think about it. I seem to need to have something that upsets my normal life for a whole day before they make it past my determination to ignore everything and just live. The thoughts started last night and were still there when I woke this morning. What is happening to my lungs is a complex mix and I am going to have to treat it as such going forwards. Clearly shallow breathing keeps the pain down, but I doubt it actually does the congestion in my lungs any good what so ever. Just as my immobility and spending 13 hours a day flat on my back isn’t doing them much of a favour either. I already know that I hardly cough, I never really have. But the danger of infection has to be raised by all of that and infection is the last thing I need. It’s taken me a while to realise the impact, but the only thing I have any control of is my breathing. I can reduce the amount of time I spend shallow breathing, I might just be better off taking a bit more pain and a few more painkillers for my overall health.

This morning, the pain is still there and not only did I have a headache when I woke, but I’m tired. Not fatigued, I’m tired, which means my sleep wasn’t right. Overall, I don’t feel great, but there’s nothing I can do about it. As I said something has aggravated my system. I have a growing feeling that I am at the start of some kind of flare. I could be wrong and I really hope that I am. All I know is something is wrong, something is pulling me down. Life doesn’t feel right in so many tiny ways, none big enough to pinpoint outside of my lungs, but combined are enough for me to fear that this is the start of something.

Please read my blog from 2 years ago – 17/08/2013 – Thanking the past 

I can’t find the reason for it but for the last couple of days I have been somewhat emotional. Silly things happen or come into my mind and there are these tears fighting to escape from my eyes…….

A gap in the fog

It’s odd how you can feel so good and yet so bad at the same time. It’s been such a strange week, my brain has been the clearest it has been for a long while, but my body has been taking every opportunity to show me what life with chronic illness is really about. It’s perfectly normal for me to be wondering around totally uncertain of where I am going or exactly why, or just to be sat here staring at the screen with no idea of what I am supposed to be doing. Don’t get me wrong it hasn’t miraculously vanished, if only, it’s just the fog doesn’t seem quite so thick. I have no explanation as to why my mind is that tiny bit sharper, it’s, really an odd feeling especially as I haven’t felt it for a long time, but I feel it. The rest of me, well it all feels as though the improvement in my mind has been paid for by a down step in the rest of me.

Every day in the past week I have been fighting with a body that just doesn’t want to behave. My legs have been a constant problem, letting me down over and over again. I have to date been good at covering any issues, but Adam has twice spotted that I was unable to move simply because one or both of my legs weren’t able to take a step in safety. Once again the worst point is when I first stand up. I may have made it from sitting to standing, but there is either no way of taking a step or I get a spasm in my lower back that shocks me into inactivity. It is as though I am frozen to the spot and I have to hold onto something as the pain has a habit of shooting right through me. It honestly isn’t possible to move at all, I have tried in the past and the result is either no strength in my legs, meaning that I am either in danger of or do actually fall, or I cause the pain to get worse. Neither are exactly my first choice. I can’t even sit down again, all I can do is stand there and wait for it to pass, as it always does. At times, standing up has even triggered a similar effect in my arms, which is really not helpful as I honestly need them to steady myself. That usually only happens when I have been sitting on the settee, hunched forward to make it easier to breath.

This whole week has been one without strength. I have lost count how many times I have been defeated by a ring pull, or even more pathetic been unable to remove the paper seal over the top of the milk bottle. The most stupid things have become a battle zone. Add in my normal poor dexterity and at times I have just wanted to give up. My left arm has been weaker than my right for a long time, but both are of little real use at all just now. A small package arrived for me the other day, it arrived in one of those white padded envelopes which have a red stripe to pull to open it. After four disastrous attempts, I had to take the scissors to it, it took me several more attempts with them, simply because I didn’t have the strength to even use them. Once through the envelope, I was almost at screaming point to find the enclosed item, inside a thick sealed plastic bag. On the scale of pathetic, I felt as though I had fallen off the end. Even on those things that don’t take strength at all, I have struggled badly at times. You don’t think about strength and things like feeding yourself or typing, but when your muscles fail, it affects everything.

The one thing that no one but me could ever notice is my eyesight. Having said that, I think Adam did spot it the other day. I was simply trying to read something of the TV, sky has this horrid habit of backing everything in blue then putting small yellow or white print over it and even with my glasses, I now struggle big time. Experience has told me that the option can’t really help anymore than they already have. I can’t use my glasses here at my PC as if I do, they turn the screen into a worse fuzz than it normally is. I do have glasses to use when sat here, but they mean I can’t see the TV at all. I haven’t been able to make out faces on the TV that well from sitting here for ages, recently they have vanished even more. Now if two people have similar hair, I have no idea which is which any longer. Bifocals just don’t work for me so I am left living in a fuzzy existence whatever I do.

Everything just seems to have taken a step-down and has managed to make itself known. It’s not like I have suddenly developed something major or new, just everything is that bit worse. My chest is tighter, my breathing more difficult, my stomach is once again causing pain that stops me dead and just because it can, it takes my breath away. The Psyllium may be letting the contents of my intestine move forward and eventually out of me without effort, but it hasn’t dealt with much of the pain. It doesn’t matter which part of my body that you might choose, all the pain levels are just that little higher than it has been for a while. It’s not like I want to dive into my Morphine for a booster, it’s more like my slow acting Morphine isn’t quite holding it at bay. Every sensation that can be felt has triggered at will. Pain, burning, pins and needles, numbness and anything else you can name has appeared in the past week. All of this together has been the reason behind the searching I have been doing over the past few weeks into what it is that drives me and how I feel about it. It has had a really positive effect, one that both Adam and Jake have noticed and found it so marked that they had to mention the fact that I am bright and chirpy respectively. It doesn’t take a genius to work out where that has come from. My mind is once again at rest about where I am and what is happening to me. As I said, “It’s odd how you can feel so good and yet so bad at the same time”. It is odd, but when your mind and your body are in such totally different places, understanding it isn’t that hard.

I really did need to recenter myself if you like. It’s too easy to just forge forwards, to not questioning what is happening or checking how we feel about it. I hadn’t stopped for a while now and just asked the simplest question of all “Am I happy?”. I wasn’t, I was letting myself disappear under the pain and trials of my life and I wasn’t listening to me. Not my body, I listen to it all the time, but I wasn’t listening to me and I was vanishing under it all. Yes, I am brighter, I am more chirpy because I am here again and in control again. I know where I am going and what is happening, I can’t control that, but I can control my happiness. There are so many elements required to be happy, being in control, having plans, setting goals and having achievements and not one of them is affected by our physical pain, weakness or strength. All of them come from our mental well-being, something that is easy to ignore, especially when you live within a fog.

Please read my blog from 2 years ago – 01/08/2013 – Just not getting there 

6am, I was awake, I am never awake that early but a pain in my left heel was screaming at me and 2 and a half hours later, well it calmed down but it is still there. I am making a huge guess here, but I think it is pressure point pain. I have had spells of it before but never in such

Don’t get ill

I have for the first time ever asked Adam to not go to work. I have never felt that need before to not let him leave my side, although he has often enough offered. On Sunday morning, I woke with the worst headache I ever remember having, well last night I topped that one. It was just after 11 p.m. when I woke to go to the loo, a problem there is no simple solution for when all I seem to be doing is drinking cold liquids. In itself there is a clue, cold liquids, Adam has no doubts left that I keep throwing temperature spikes. Anyway, when I woke I felt as though someone had been dancing on my brain in stiletto heels and one was still stuck through my right eyeball. I couldn’t get off the edge of the bed, just sitting there knowing I needed the loo, but with no way of getting there as that meant standing up. I don’t know how long it really took me to get there and when I did and sat down, I didn’t want to move again. My body wasn’t so much mine, as some horrid vessel that I was trapped inside. I kept trying and trying over again and again to cough as my lungs felt as though they were underwater and every breath in or out was travelling through that water in bubbles. I felt sick, distant and so far from myself that I was actually scared of heading back into the bedroom. Adam was in the kitchen so I lite a cig in the living room and sat there in the dark, wondering why I had lite it at all, it was the last thing I wanted, not something I ever say. I let it burn for a few seconds then put it out and headed back to the bedroom, I wanted to be without my dressing gown as I was starting to drip sweat, once again without being warm. Waking up at 5 a.m. to find a that a pneumatic drill had moved in on the party and I quite honestly didn’t know what to do with myself.

If I had been able to think clearly at that point I would have spoken to Adam there and then, there was something really wrong and clearly growing, but all my brain was saying was sleep. Right now I am waiting for my doctor to phone back, When I called I knew he wasn’t going to be there, but I was hoping that if I were at the top of his call back list that he might call before surgery rather than after. As luck would have it I found myself talking to the snooty receptionist. Everything about this woman is annoying but her patronising tone is her worst attribute but on I actually removed at the end of the call. I told her that I am having problems breathing, her one-word answer was “Asthma” not even as a question, it was a statement. I clearly didn’t answer quickly enough for her liking as she then said “Do you have Asthma?” I answered “No, I have COPD” and she changed instantly. I don’t know what her problem is but when she seems to think that you have something standard or minor, she’s rude. Mention my MS or my COPD and she’s really nice, but it shouldn’t be like that. She went from snooty to almost apologetic that the doctor wasn’t in until 9:30.

I honestly can’t believe how bad my head was overnight. I like everyone has had headaches, but without any exaggeration this is the worst I have ever known. Until I am told otherwise, between the pain and the way that I wasn’t really making sense of things either last night or on Saturday night, I am guessing that I was short of oxygen. Thanks to the fact that in the UK we don’t have a 24/7 medical service all I could do was wait for this morning. Our doctor surgeries and the hospital services are virtually none existent at weekends and are working on a shoestring. Part of me was screaming that I did need help and I needed it there and then, part of me was screaming I’m not going to the hospital. If I had gone to hospital as I have done in the past for bronchitis, I know they just give me a steam inhaler and then sent me home. How many hours that would have taken as I can’t just go there and come home, I would guess I would have been stuck there until today when they could eventually arrange a stairclimber crew to take me home again. Going to the hospital at the weekend isn’t something I even want to try. It seems to be one of those oddities of life, that it is your health that has made you housebound, yet the most dangerous aspect is when you need medical assistance, finding it is almost impossible. A healthy person is only as far from their nearest hospital and to medical care. For anything from assistance for anything from a sprinter to a broken limb, or heart surgeon who can say their life. I, on the other hand, can’t really say that, the hospital is no further away from me, but it might as well be on the moon when you can’t get there or home again. I didn’t need or want to call 999, you only dial that number when you are in danger of imminent death I wasn’t, but I would then have been stuck, at their mercy.

I needed help, what most these days would be called walk-in help, as clearly I am still alive and I wasn’t dying. In fact, if I were to go back in time to my twenties, I would have just phoned my GP’s number and I would have been put through to a duty doctor, who would have come to me. That was standard NHS treatment, not just for the elderly or terminal ill, if your baby had a temperature the time of day didn’t matter, you called. If I had called last night I would have been put through to NHS 24, a switchboard of people with scripts to read. Yes, I have done it in the past, they normally ask if you can get to the hospital and that’s where you go. The passenger transport ambulances don run at night, but only as single crew member, which means no stairclimbers, a 999 ambulances would have to have been pulled to collect me and take me to what they call minors, where there is a duty doctor. I have to admit to having been just living on a wing and prayer, that this wouldn’t happen, that I wouldn’t need medical assistance outside of weekdays and daytime. My GP is great in one respect, he is happy to listen to me and to prescribe without seeing me, doctors who don’t know you, won’t do that.

Just like at this time yesterday, if I keep my body as upright as I can, I seem to breath without too many problems. I just sat on the settee for ten minutes, leaning forward as I was searching for something on the TV, by the time I stood up, all I could hear once more were bubbles. Cough, and I rearrange them, I still can’t cough it up which is probably why I couldn’t breathe last night. I had pools of phlegm that just bubbled as I breathed, blocking the oxygen from filling my lungs. When Adam ask if I wanted him to stay at home, I for the first time ever said yes. My thinking was that with luck my Dr would call back sharply and Adam could then jump in a taxi to collect it. I am sure that an antibiotic and a nebulizer will sort this out quickly, but only if I get them quickly. Now I find myself sitting here both feeling really crap and guilty that I hadn’t told him to go to work.

Read my blog from 2 years ago today – 14/06/13 – Secondary pain

They call it sods law, I call it B* annoying. For two nights I have climbed, no sorry fallen, climbing indicates real control, going to bed is more a case of my setting up the motion and instinct taking over. But yes it has been two night ………..

One day

Over the last couple of days, my diaphragm has been driving me mad. It isn’t the fact that I have to spend my time constantly thinking about getting enough oxygen into my system without being in ridiculous amounts of pain, it is just the constant pressure and discomfort that really gets to me. Pain can be managed, I know that and yes I manage it to the best of my ability, but to date, I have found nothing that actually makes sitting with a constant pressure band around my midriff comfortable, Morphine and doing my best to keep the muscles that I can control relaxed just isn’t enough. Everyone focuses on pain when you have something like PRMS, Fibro or COPD when you have all three, well that seems to be all that they see, my pain, trust me discomfort is just as bad especially when it never seems to give in and just give you peace. In many ways, I would actually go as far as to say that it is worse than pain, as pain has an answer in the shape of a little blue booster pill, the pain leaves but that discomfort, it never leaves unless it chooses to. My entire day is spent shifting, moving and trying to relieve it, there doesn’t seem to be any pill that I have that makes a difference and to make things even worse, it just doesn’t change, it just goes on and on and on.

Last night when I went to bed I was in true pain, the usual mix of the left side being sliced through by a sword and my right being hacked at by a saw, while a piece of razor wire is wrapped around me daring me to take just one deep breath. I took a booster pill and lay down waiting for it to take over and for sleep to take me out of the whole situation. Just like so many nights in the past year, I lay there scared of not taking deep enough breaths to ensure there was enough oxygen in my system. When I was having the tests that showed up the COPD and the fact that the spasms were affecting my breathing, one of the tests they did was to just put a monitor on my finger to measure the oxygen in my blood. At that point, I was once more shallow breathing and I was shocked to see that the oxygen in my system was far too low. Ever since then I have done everything I can to not take more than four or five shallow breaths without then taking a deeper one, but the problem is always the pain and discomfort. I know also that that is another reason why I am always so desperate to go to sleep as I know my body will adjust and take care of itself without my worrying about it. I lay there awake long enough for the pain to subside and for me to be left just with that band that was grasping at me tightly, just as it is right now. The pressure over my kidneys and right across my front was the only thing left that I could feel and despite going right through my relaxation system, nothing was shifting it. Sleep, regardless of how much you are craving it is hard to find on nights like that and the result is always the same, stupid things enter your head and start chasing each other around, making things even worse. I don’t think it actually took me that long to slip off, but neither did it take long for me to wake again when the booster pill wore off, leaving me to having to go through the whole palaver over again. For some reason, the middle of the night session is always the one that take the longest to return to sleep again from. I am sure that it is because I have had some rest, but not nearly enough and I was getting less and less by the minute.

Half an hour before the alarm sounded, I woke suddenly and did what is the closest I ever get to flying out of bed, a sort of slow twist with a stiff flip would be a better description. To top off my night, I had what I have reported before as the worst spam in hell as you simply can’t break it, right between my legs but so deep inside nothing reaches it. Between that and my diaphragm, I couldn’t even get myself dressed, all I could manage was my top and to grab the rest of my clothes and leave the room without waking Adam. I knew from experience that I wasn’t going to be able to sit to put on the rest of my clothes, I went to the only place that I could think of where no pressure would be applied, the loo. It isn’t an ideal place to try and reach my feet to put on my socks or even get my legs into my trousers, but it was the only place that I had the slightest chance of achieving such a simple act. I then spent the next fifteen minutes of my day sitting on the arm of the settee, trying to find some way of applying pressure, for once I did have some success, well either that or the Morphine kicked in super fast. Right now, despite all my daytime meds, discomfort still reins, including a shadow ache where I would rather not have one as I can do little during the day but sit. This post is beginning to feel like one long moan, but it’s not, it’s more a case of saying to those who don’t live inside a chronic condition that pain isn’t the worst thing there is, there are things that can’t be changed and plague our lives in a way that is hard to get across in any other way than I have. Just like a moan, it goes on and on and nags away at you like a reminder that you really don’t need.

One day, its the dream that most of us live with, just that one day, one day they will find a cure, one day they will fix the pain, one day they will bring back the comfortable we no longer know. One day I will be able to walk without waddeling or dragging a foot, one day I won’t have even a minute of that feeling of being cut in two. One day I will be able to lie down and feel the comfort of my bed rather than the band that squeezes the air out of me, but one day just gets further and further away, rather than closer. What ever our condition is or the drugs that they give to us, the one thing that seems to be missing is the understanding that comfort is probably the most important thing that they could possibly work on for those of us who won’t be here to see the other one days.

Read my blog from 2 years ago today – 21/04/13 – Inviting in the inquisition

I was a foster child from the age of 13 to 16, it left me with a really negative impression of the social work departments, it wasn’t that they failed me, actually they didn’t. I was given exactly the care I needed at the time I needed it, including them knowing I needed to be on my own before I was even 16, I was responsible for myself living in the YWCA. So their assessment and provision of services tailored to my needs, well I have to give them 10 out of 10, but I have still this total negative feeling towards them……

Pushing the boundaries

Yesterday just sort of happened, right through until I went for my nap absolutely nothing of interest or note happened, it was just a day, as I said until I went for my nap. Lying down seems to trigger so many things, but I already had my diaphragm creating pressure all around my lower ribs, so I wasn’t that surprised that the strange sensation of having a ball shoved inside my ribcage, whilst wearing a corset. I know that sounds somewhat strange, but it really feels like there is a sphere right in the middle of my chest touching both my spine and breastbone, but where it causes problems for me is it feels like my lungs are being pushed out of the way to the sides of my ribcage, where of course it is hard to breathe as they feel trapped and every breath burns, the worst of it is directly behind the sides of my breast. Not only does it burn in my lungs, but every breath is felt in full detail from my throat downwards. It is far from the first time that it has happened, but it is one of the more unpleasant sensations, please note I said sensation as it isn’t directly painful as you might expect. It is as though everything has turned tight and compressed in every direction, the only true pain comes if I fight against it, trying to take a deep breath when it is at it’s tightest does cause pain, but if I keep my breathing steady and within the confines of what is permitted, it is more uncomfortable than painful, mind you I have never tried it without my meds and I don’t want to find out either. I have tried to work out exactly what is happening but I can’t explain it at all, as it doesn’t fit any single or even collection of muscles, it is almost as though that entire area where the sphere is, is locked in some way. Like a lot of things, there is only one thing to do and that is controlling my breathing, stay calm, relax and let it pass. Panic is the one thing you can’t do as that quickly causes muscles to tense not just around the area affected, but all over your body and that makes the whole thing so much worse.

Not panicking is something you have to learn to do quickly, from the first time you have a spasm onwards, panicking just makes the whole thing worse. Whether lying in bed or sitting here, panic is the perfect recipe for disaster, at least when I am lying down relaxation works and eventually puts me to sleep, the greatest escape there is. To date when I am attacked during the day I find the opposite works, well for most things and that is distraction. Mild everyday spasms with the medication I take to control them are actually something you can ignore if you are busy, they feel more like a tightening or pressure than how I remember them being before, just like a cramp and normally stronger. I have lived through years of them without medication and I had managed to even teach myself not to jump about like a lunatic, well at least not when there were people around. I became reasonably proficient in that deadpan face, whilst biting the inside of my mouth, strangely creating pain often allows you to deal with pain elsewhere. Yesterday was different for two reasons, firstly I don’t normally get bad attacks out of the blue like that, there is more of a build up pattern things slowly increase until they peak, but I had no warning what so ever, it was there. The only thing that made it fit in any way was my diaphragm and the fact I had just changed my position to horizontal. I didn’t realise as I eventually managed to slip into a dozing state, where most of my body no longer existed and all I that was left of me was my ribcage, was that it was just the start of it.

All evening I was in pain, despite having taken my booster pill in an attempt to keep it at bay, but my chest just wasn’t going to give in, there was hug after hug and spells where I sat silent, just hoping that Adam wouldn’t notice or start talking as I was busy controlling my breathing. I don’t remember there being much more than ten minutes of peace before something else happened, trust me it drains you having to breath slowly and shallowly. Adam was late home and went straight into the kitchen to catch up with the dishes, as a result, we had just an hour together, in an odd way it was a blessing. He worries so much about me, far more than I do, but I know that I will be fine, that this is just another part of what happens, but tell him that I can’t breathe properly and well he is off worrying, putting unnecessary stress on him and he has enough without it being added to. In a way, I was dreading going to bed, but on the other, I was so tired that I couldn’t wait, life is normally like that inside my body, totally contrary feelings, with no in between. I am sure that it took me more than half an hour to go to sleep, despite of how tired I was. Sometimes it can be a real battle getting my breathing right, my ribs can force me into taking very shallow breaths, but there is a danger in going with it if you don’t take in enough oxygen strange things start to happen. It starts with tinnitus and then hearing your pulse getting louder and louder in your head and a feeling throughout your body as though it is tingling and fading at the same time, then comes the pounding of your actual heart, all clearly not good and signs of oxygen starvation. There really isn’t any choice, I have to breath more deeply but I also don’t want the pain that goes with forcing your lungs up against a tight ribcage, it is a loose loose situation, with only one real answer, find sleep, auto pilot always works best.

I only slept until 4:30 when I woke once more in pain and bursting to go to the loo, it was in many ways the start of my day, as I only slept fit fully for the rest of the night. Right now, well it seems to have settled down again to it’s normal level for daytime, just my diaphragm tight as normal and my breathing, well because I have been writing about it, it is of course not as easy as it should be, it’s always best to find a distraction and trust me this was no distraction at all.


Please read my blog from 2 years ago today – 10/10/12 – Thinking 

Last night I deliberately delayed taking my meds as I wanted to be able to locate the source points of my pain, it was a painful experiment but one I thought was worth doing I was wrong. I have hoped that without the drugs interfering I would feel clearly what was happening rather than a numbed muddle. the result was…..