Time to prey

I don’t know how to write about the last couple of day, or actually, even where to start, as, in many ways, this all started about a week ago. I know that I have written about all the stress and tribulation of going to the hospital and finding that the tiniest muscles in my face can really destroy you, but there is has been other things taking place, things I was ignoring as I didn’t want to believe they mattered. I’m not sure of the exact day, but I think that it was probably Friday of last week, that I started to find that my arms just weren’t up to doing the limited things I required. At first, it was just this feeling of them becoming tight and stressed. I had to keep stopping and shaking my arms out in the hope that they would carry out the next action without complaint. As the days have ticked on, it has become worse and worse. Even something as simple as clicking my mouse, made my arms feel as though they were going to explode and that I wanted to scream. It wasn’t pain, just a tension that stopped me from living my normal life.

Both of my arms are affected and as I spend nearly all of my day on my PC, well, it was just a matter of time each day before I reached that point, where not just my arms, but I wanted to explode. When your life is limited, and something is doing it’s best to remove even that little that you do have, well, frustration and anger grows quickly. The actions that I am able to complete, are all now stilted and so much slower than I am used to. In the past, I have been used to just my left arm causing me problems off and on, but this time, it is both of them, and that isn’t funny in the slightest. I have literally been sat here in tears, doing my best just to copy past a name off twitter into my spreadsheet, or whatever it was on my spreadsheet into to twitter to send. The tiniest action felt almost impossible, and each one caused the internal tension to grow and grow.

It wasn’t until this Thursday that I really started to take it seriously and to face the fact that it wasn’t just something and nothing, this was something that was totally unignorable. The exhaustion that I thought I had caused by doing just a few facial exercises, was being made worse by every tiny thing that I did, including just trying to hit a few keys on this very keyboard, I’m sat at now. My hands seem to be tingling all the time and my level of feeling I have in them, keeps coming and going. Both of them are also shaking whenever they take the notion, something that is a touch upsetting when you’re trying to light a cigarette or have a drink. It was on Thursday, for the first time ever, I had to switch off my PC just after 4:30, I couldn’t manage anymore, normally, I’m sat here until about 6:30. All I could do was just sit on the settee and hope that resting would bring them back to me. It didn’t.

My left arm is affected from my shoulder down and so far, in my right arm, it is just from the elbow down. There is no way that I can lose one, far less two, after all, they are my only mode of transport these days, there is no other way to move my wheelchair and I don’t dare to use my legs. Stopping and resting may sound like the answer, but as soon as I am motionless, they start shutting down. I can feel it starting at one point, then just spreads and spreads, taking them over totally until they just feel dead, although, I can actually still move them.

When I woke on Friday morning, my left hand was close to useless. I had to coach it into doing what I wanted, but it was once again a slow and daunting process. It was so bad, that I knew there was only one thing to do, to call my Dr for another round of Steriods. He has prescribed me another round of, and I dare you to pronounce it, 500mg once a day for 5 days of, Methylprednisolone, yet another mouthful in more than one way. At this moment, I am without a doubt, losing my hands and I am not going to let a flare take them aways from me as it took my left-hand years ago. Without a doubt, this was the wrong time for me to have gone through all the outings and so on, that, I have in the past week or so. I have been over stressed again and again and my body is once more showing me that I am not up to it and it really doesn’t like it. I have managed in the past to take high dose steroids without much of an issue, although I know that many find them horrific, to me, the worst thing about them is their taste. I don’t know how they do it, but the second they are in your mouth, there it is. It doesn’t matter how quickly you swallow them, or how much liquid you follow them with, that damned taste is there in your mouth, and it’s foul.

Adam was at home on Friday, because we had the visit from the Social Services, something I will write about in my next post as there is too much to tell today. His being at home, though, meant that as soon as he was free, he could take a taxi down to the doctors, fetch the prescription and head home again. I have to take them just once a day, but it does mean, an extra five tablets to swallow, as if I didn’t have enough of them, to take anyway. It is very much a case of swallow and hope as it isn’t a written guarantee, that anything will improve, just my best shot. When I spoke to the doctor he told me to give them for three days and if there wasn’t any sign of improvement, I will need to get in contact with the MS Nurses at the hospital. I know already that that will be a more than interesting conversation since I haven’t been there for about 8 years, I’m just hoping that I don’t have to make it, or when I do, I don’t land up again in their clutches.

 

Please read my blog from 2 years ago today – 05/06/2014 – Time to kill the bedside

One of the problems I have had all my life is an enquiring mind. I know that many won’t see that as a problem at all, but trust me it is, as it has managed to cause me more strife and lost friendships than anything else. I have always soaked up information, stuff that most people forget or don’t even listen to, in itself that can be a good thing, but the downside is that I have never understood……

Joining the dots

Every cell in my body is no longer just tell me, they are changing, they are now screaming it, so loudly, that my head is ringing with it. It’s about six months ago that I first felt that I was in danger of being on my feet and that my wheelchair, was once more, needed in my life. At about the same time as I found that not only; were my legs muscles becoming a fan of just collapsing; every sensation my PRMS had found to play with, had also become heightened; so to where my tremors, they were increasing; my spasms were more frequent and favouring the more intense, and my mental symptoms were, well they too were more intense; everything was moving, and moving rapidly. Six months is an incredibly short time, it’s not like when we were children, when months lasted forever, now, especially now, they have become incredibly short.

When that day came that I let the words actually come out of my mouth, “I need my wheelchair”, I had this huge lump in my throat. It was all well and good, thinking it, thinking it is safe, it’s silent and no one other than you knows that thought is even there. Saying it, is like writing your own death warrant, there is no going back. Admitting it to the world is a very different thing from the world telling you. If a doctor or the MS nurse had said, “Well Pamela, I really think you are going to have to use that wheelchair”, well I would have had someone to blame, an outside observer who had diagnosed a weakness, but I just had me. I think it was the first time where I have been the only one, behind changing my life, prescribing what was needed to deal with the course of my health. I was also doing something else, using a great big piece of equipment as a foil, not to hide me, but to hide what I didn’t want to see, or even think about. It partially worked. It was a distraction. I had to buy this or that, make sure that I had the optimum space to manoeuvre in, without rearranging the entire house. Things to do, things to think about, anything but stop and admit. I could bypass everything other than my brain, it has a nasty habit of showing the world my shortcomings. Stutters, slurs and blanks, appear throughout almost every sentence I dare to try and speak. Adam, well he’s used to it, but my visit to the hospital two months ago put a spotlight on it. The consultant spotted it the second I entered the room and tried to speak.

No one but us, knows about those maddening sensations, unless, we tell them. Well, no one can see a tingle, or a lightening shock hugging our skin, not even us. Unless we jump, squeal or flinch, they are our secret. Which probably makes them one of the hardest things for those who don’t have MS to understand. Yes, we can explain, that they feel like this of that, but the average person, they only feel something similar for the briefest of seconds. They have no concept, no understanding, or any way of even imagining, what it’s like to feel them for hours, days, months or even years. Pins and needles, so what there nothing. Maybe, until you have them running across your face for a whole day. Nothing, until someone, turns those pins into knives, and those needles into spears. So numbness, well it must be a joy to someone who lives in pain, isn’t it? You might think that, but MS has a trick unique to nerve illnesses, we can feel both, in the exact same spot, at the exact same time. Internal feelings have nothing to do with the real world. If you apply moments though the danger of numbness is real. Burnt hands from an oven, fingers from a cigarette, cuts that you don’t know are there, that fester before you spot they exist. Food and drink that falls from your mouth as you don’t really know if your lips are closed or not, as you can’t even feel them, or the food. Sensations matter, be it missing ones or created ones, if they aren’t exactly or even close to what they should be, they disrupt everything, create danger and generally, make life hard.

Last week, I described a bad spasm, bad, not because of what it did on the pain scale, but because it made my health all to visible, in a not too pretty way. Not all spasms are visually dramatic, many, like those who take sheer pleasure in stopping me from breathing, constrict, just below that pain level. To find a point, in any day, where either my diaphragm or my intercostal muscles, haven’t held that position, in the last couple of years, is hard. In that same period, I can’t say that for any other part of me. 2 years ago, I went days without feeling a spasm anywhere else. That was the point when my PRMS found my intestine, but still, the rest of me, I went days. When they came, well in comparison to my torso, I really didn’t care. They were there, they were annoying, but they didn’t last, and they didn’t hurt, beyond a normal cramp, or stitch. They were mundane and forgettable. Technically, a tremor is nothing more than a fast twitch spasm, yet when it comes to dramatic effect, back then, my tremors won hands down. The spinal twitch was the best, it swung my enter body, from my toes to my head, in sharp jolts, from side to side and still does. My hands before my chemo treatment, did a complete and expert impression of late-stage Parkinsons. Post chemo, they settled to odd spells, that never lasted long and I could hold my hand out in front of me, not steady, but not flapping all over the place either.

So why the requiem, because all of this, just like the need for my wheelchair has changed too, and in just as big and as solid away as moving my chair back into my life has. My first paragraph, well it laid out the glimmer of the facts. My legs were the dangerous factor, the one part that was partially fixable by adding my chair. A wheelchair doesn’t make your legs stronger, it doesn’t stop the muscles from collapsing, and you don’t have to be standing to feel it. You might not think you are using you leg muscles when you are sitting, but you are. Sit there and totally relax your lower body and you can feel the difference. When it happen unconsciously, it affects your entire posture and body. Suddenly, you have what are in all respects two long lumps of flesh with pins in them. They are closed off, separated from reality and feel just as dead, as they would be if you tried to use them to stand. When you are in a wheelchair, believe it or not, unless you are a paraplegic you use your legs in every push. Dead legs, make every push twice as hard as they are with your legs to assist. Now add into this, the fact, that that feeling of weakness, and even deadness, is now appearing in your arms. I now, especially at the end of a day, find myself sat in a chair that I couldn’t move without, but with little of the strength or movement required, to actually achieve propulsion. My foil now feels more like a folly.

Spasms are now stronger, but that isn’t what bothers me, it is their weaker cousins that are making life tough. Doing simple things like lifting my feet so they can sit on the rests on my chair, is now literally, a hit and miss process. My muscles jump, kicking away and far too often, into the foot rest. The precision required to place in where needed is almost gone, just as it is when I’m walking. My left leg is far worse than my right, and if I had to take more than a couple of steps, would without a doubt, trip me up. Just standing can be enough, to send it off in some kind of fit, twitching and flicking itself all over the place. At it’s worst, I don’t need to even stand, it just twitches unstoppable, and those twitches in my hands, are returning. If the worsening of existing and the return of the once fixed wasn’t enough, now I also have the vanishing voice. I haven’t mentioned it for a couple of weeks, but it hasn’t gone, it just comes and goes at will. I had to mention when I was at the hospital, as it chose Monday as a good day to vanish. At least my PRMS chose that day to show itself and its latest trick.

I felt all of this growing, just as clearly as I felt my legs leaving. My concentration on making life in a wheelchair work, for me, allowed me to, not so much ignore, but more, to put aside as secondary issues, everything else. I couldn’t ignore the change in my breathing, as yes, that too appeared at the same time. Clearly, something six months ago kicked my progression into high drive. I don’t know what, I just know that my body is falling into the abyss, faster than it has done since 2 years after my diagnosis. Then, Mitoxantrone was the answer, but that was a one-off, I was told then, that I could never have it again. It does so much damage to your heart, that they don’t dare do it again. So this time, I am on my own. I know Adam has seen all of this, just as I have, he would have to be blind to not have. Like the sweetie he is, he chose to respect my lack of discussion and the blind eye, I was clearly turning on it even in here. So now, I have publically joined all the dots, brought together the fuller picture, now I just have to work on living with the results.

Please read my blog from 2 years ago today – 13/11/2013 – Sharing the same space

My day was in a bit of a muddle yesterday, it seemed OK on all the main points and I even completed the shopping that is due to arrive this morning. I don’t know how or where it went wrong but I was……..

A mind of two halves

Whatever is happening out there in the world, right here, winter has arrived and the lead into Christmas along with it. Sorry, if that disappoints you, but I am sure there are quite a few out there, that are right there with me and fully understanding my reasons. The best Saturday night TV viewing of the year has begun, “Strictly come dancing” followed by “Dr who”. It’s odd how two programs, that are the total opposite of my normal style of viewing, have so totally taken over my view at this time of year and the excitement that I find in the fact that they are both back. I am anything but a bubble gum TV viewer, give me a good documentary or failing that just the BBC news and I am happy, but I just can’t resist these two programs. I guess we all have those guilty secrets, those things that our mind tell us are ridiculous, but our hearts jump with glee at the mere prospect of. So that’s me happy until Christmas, even though the good “Dr” doesn’t run until then, I know the “Beeb” won’t let me down. They always find something as deeply bubble gum and good to take us through to the end of the year.

It’s odd how you change over time to fit your abilities and demands. 30 years ago, I didn’t really care what was on TV, I had too much to do to pay that much attention. Every evening once all my tasks had eventually been completed at around 8 pm, I eventually sat down. Well, I did have two kids and a typical home for the time. No gadgets, beyond a washing machine and a hoover, and I was a fussy housewife, so enough to keep me busy from 6 am to 8 pm. When I broke for the day, it was to knit and sew clothing for the family, or decoration for our home. TV was a background as the radio was during the day. 25 years ago, I was a DJ, didn’t care about my home as I was never there and as for TV, I never saw it. 15 years ago, once again a proud housewife and busy business woman, constantly working or cleaning, with no time to just sit down and watch anything. Now, I don’t clean my home Adam does, I don’t work, I don’t go out and I don’t have the dexterity to make anything. TV, the once somewhere in the background item, has become my companion. Regardless of anything else it is always on, and I always have something to watch or at least listen to from a continual supply of programs I have recorded or downloaded. Right now I am listening to a documentary about world war 2, as I write. Yes, I can do both, not as well as I once did, but I can. The silence without it would drive me mad.

Once silence was a joy, now it just reminds me that I am sat here alone. Silence sounds somehow like a prison. A reminder that I can’t make the noise that once filled my life. That I am locked inside its walls, with no escape. During the day, the TV teaches me, learning something all the time is one of the few things I can still do although I have no outlet or requirement for that knowledge, it somehow makes me feel more complete, more part of the world. No matter how well you might adjust to being housebound, the one thing you still need is to feel attached to the world. For me, that is what learning does. It can be history, or any other subject if it deepens my understanding of life, then it is keeping me connected to it. My last job was probably the job I actually loved the most. What I loved about it was that I never stopped learning, from the day I took on the role, I never stopped. I taught myself everything I could need and more about computers, from programming then onwards. I had to learn about business, laws, regulations and best practices, all needed updating constantly, I spent more time researching than anything else and I loved it. When it ended, I felt lost.

I didn’t even realise what I was doing when I decided that I was going to learn all I could about the two world wars, a subject that chose me rather than the other way around. It had just been there one day after a show I chose and I didn’t change the channel, oddly, it was interesting and that as they say ” the rest is now history”. I had unintentionally replacing that discovered need through work to learn, by learning about life. I can’t tell anyone how to replace what they miss from their working life, but I bet that learning something new, would help anyone and TV is a wonderful passive way to learn and doesn’t cost you a thing. Keeping our minds entertained and busy is essential. Sit on your settee day in day out doing nothing and watching endless bubble gum and movies and you are going to deteriorate before you even see it happening. Just like good posture and good relaxation helps out bodies, I truly believe that learning helps our minds to stay connected.

I woke last night once again needing to head for the loo. My mind may have worked out how to sleep every night for ridiculously long periods of time, but my body hasn’t. I pleased and surprised that I managed to get to the bathroom, stopping off for a cigarette and back to bed, without once seeing Adam. As always, wheels or not, I did the entire journey in total darkness and without banging into anything too heavily. More importantly, I didn’t wake Adam. I was lying in bed, starting to head back into sleep and feeling rather chuffed with myself, when I suddenly noticed that the entire right side of my face was freezing. I didn’t have to think about it, I knew it was the nerves playing up. There was no other reason why only one side of my face should be trying to tell me, that the outside temperature was several degrees below zero. There has been no improvement in my face sensations and movements at all. It is still my right side that is the worst and it does seem to still be spreading. More and more of it keeps sort of setting if you like. The movement required to speak or even smile at times, from my side, feels set still and unchanged. Adam has stopped asking if I have a cold, but I am becoming more and more aware of it, even without his reminders. What I don’t like personally, is that I can now feel it far more clearly, right up to my eye level and crossing the bridge of my nose. There are no time limits as to how long things keep getting worse, or when they will stop or even get better. All anyone can do is wait and see.

I really do seem just now to be falling apart again. The speech changes that the doctor noticed when I was at the hospital wasn’t due to the right side of my face, but the fact that I can’t end my sentences and get lost in my words. They too are happening more and more. In the last couple of months, I have been really aware of them, usually when things are tense or uptight. In the last couple of days, they are happening even when I am totally relaxed. A year ago, I would have held onto my last word and not let go until I found it’s missing friends. Now, I just stop. It is as though without permission, my brain has decided that there isn’t a point in fighting it any longer and that I have accepted that my brain just isn’t up to it, I haven’t. I am now totally unable to finish what I was saying, the blank is so deep that I don’t even have that feeling any longer that the word is on the tip of my tongue, as it isn’t. It has totally vanished for all time and there is no way of finding it. That was something that used to happen occasionally, now it is the norm. Worse still, it used to happen a couple of times a day under normal living stresses, now it happens every few sentences, even without stress. I knew exactly what my consultant was pointing out, what I didn’t know was that it is now as active as my muscle problems. Yesterday, was a mess, from my sentence to my last. Adam quite sweetly tried to say that it wasn’t that bad and was only showing signs of getting worse in the last couple of days, when I checked him, he shut up. Proof, he was just being nice.

Everything seems to be active just now, I don’t know why, but that is just the way it is. I guess, I am in another relapse, it’s just a matter of waiting until it comes to an end. That’s always the problem, they can last hours, days or weeks and when you live also with progression, it’s always hard to know which is which.

Please read my blog from 2 years ago today – 27/08/2013 – Connections of life

I don’t know why I didn’t think about it before but I now can see a clear reason why I choose to blog rather than just join into one of those groups, well actually I can think of million reasons not to join a group, but that’s another post. I started years ago with one of those slopes that once stood on never….

The point of strength

For the last few months, I have been tucking the edge of the duvet in to prevent my feet from wandering onto the floor. It was one of those really annoying things that I was doing in my sleep. The result, though, was I woke with my body arched like a banana and my back screaming in pain. The pain was so bad, that despite being cold, I often took ages to bring my legs back under the covers. When we decided to buy the king size duvet for our double bed, the spare duvet supplied proved to be the answer. Until last Friday night, this worked perfectly, the only issue was how I have to get in and out of bed. It means a painful manoeuvring of my legs into a tucked position just so I can getting in and out, but on balance, it wins hands down. I woke in the early hours of Saturday to find myself lying on top of the bed. How I got there without hurting myself or waking up, I don’t have a clue. Getting back into bed showed me that the duvet was still perfectly tucked in. I had to have sat up in the bed, brought my legs out and lain down again. To have done all that without noticing any of it, simply amazed me. I was even more shocked when I woke in the early hours of this morning in exactly the same position. Several months ago, I joked about the fact that I might just be about to take up sleep walking. I really was joking back then, as my legs slipping off the mattress wasn’t exactly a truly thought out move, this clearly is. I have already decided that tonight when I get into bed, that I will tuck the upper half of the duvet in as I lie down. Hopefully that way I will stay where I am supposed to be, in bed.

My brain never stops to amaze me with the things that it comes up with just to make life that touch more complicated. It’s hard enough to walk around the house when I am awake. The idea that it is going to take me for a wonder in my sleep may sound funny, but I fear the results might just not be. Having said that, it has been a while now since I last took a tumble. I seem to be doing a lot of stumbling in its place. The strength in my legs just disappear, or more frequently, I find my toes stubbing off the floor. Luckily, it’s normally just my leg or my foot at one time, but they have happened together. Finding your leg suddenly not there, or not having the strength in them to stand up, doesn’t get any easier. I thought that when it started happening like so many other things in my life, that I would get used to it. Clearly I will always be surprised, as it happens out of the blue, but it’s that shock angle that I thought would settle. Every time it happens, it feels like the first time. I am always shocked that the muscles have failed and returned. The closest I have got to understanding where the shock came from is because when my left arm failed, it was dead for months. This business of not there one step back the next is somehow more unsettling. It’s like I am being stalked by an event, it’s hanging around in the background watching and waiting for the next opportunity to catch me out. There is also that added threat, that I will go for that next step so that I don’t fall, expecting it to be fine, only to find that that was its last step forever.

Progressive illness is living your entire life under a threat. None of us has the slightest clue which part of our illness will get worse next or what it will do to us when it happens. Most progressive illnesses are slow and steady, a bit by bit process. PRMS and I suspect the other forms of progressive MS often seem to act in sudden jumps. Because most of the damage done to us is caused by lesions destroying the nervous system, so we don’t always get clues. often the nerve will continue to work normally until the last second when the Myelin is totally cut in two. I frequently describe it as the lesions eating me, as that is the picture that appeared in my mind when I first read about it. I saw this evil little PacMan type creature, not cute at all, eating away at my brain. That was where they first found them when they performed an MRI, there they were, loads of them, eating my brain. Whether it is in my brain, my spine or anywhere else, right now the preparation work on removing something from is underway. The threat is in action, in fact, multiple threats are in action and I’m just waiting to discover their results. Clearly there are often clues when I start to develop a weakness, or like my chest where the muscles are being triggered to get tighter and tighter. Just like spasms the messages are being sent but are miss read due to distortion. Like sending a message down a multi-core wire that nicks in it. The message gets there, but it is crackly and odd sounding so the muscle reaction is also distorted. The threat is there all the time, what will it do today, tomorrow, next month or next year. How distorted will those messages be and how long before they stop forever?

If you were to think about it every minute of every day, you would go mad. If I were to sit here right now and just make a list of all the symptoms, the areas their in and the possible outcome of what is happening, it would be horrific. That’s just for right now, that’s not how it will be in an hour from now, it’s always changing. You can’t let yourself monitor it constantly, not even daily in detail, as that is the road to disaster. That I think is where our personal strength comes into play. We have to be strong enough not to drive ourselves mad. To stop ourselves from wallowing in the actuals, possibilities and results. You can’t stop yourself from reacting mentally when your foot drops, or you can’t breath or your bladder hasn’t held until you reached the bathroom. Reacting is normal and impossible not to do, but wallowing, that is painful and not needed. It takes strength to accept, sort it out and move on. It takes strength to grasp hold of your thoughts and direct them in a different direction and not to return. Our strength has to be mental, not physical. It is also a strength just like the physical one, that you can train, exercise and enhance. The more you use it, the stronger it gets. It doesn’t matter what our health does to us, that mental strength is what will carry all of us through and into our futures. Pain, discomfort, embarrassment, fear and despair, are all controllable.

I know that threat is always there, that my health will come up with more and more things to test me. I know that warning or not, my body will always catch me out and do things I never once imagined possible. But I believe that I am strong enough to keep putting it where it belongs, here in my daily posts and not in my daily life.

Please read my blog from 2 years ago – 23/08/2013 – The truth of pain

Once more back sat at my PC and with little surprise Adam is snoring his way thorough the 3rd of his holiday days. Just wanting a day to be normal isn’t enough, even when all the elements of……….

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…….