Just a thought

There is no warning, not even the slightest one. Suddenly, I am tired. Bang out of the blue, I feel as though I could lie down and never get up again, but I know this tired, it isn’t real in any way, shape or form. If I were to go to bed, right at that second, yes, I could lie down, close my eyes and lie there for probably, up to an hour, but sleep, no way. I have known this for so many years, that I now have it nailed. If you were to feel it this second, you too would think that sleep was the only answer, but getting to that bed, would be one of the most exhausting journeys you would ever make. Your muscles would be wooden, heavy and hard to move. Every step, or in my case, every turn of my wheels, is painful, slow and leaden. Coordination is a process you are aware of, but not successful at. It is a laborious trip, one that less than half way through, you know, you shouldn’t have even started. If you are standing that danger grows, whatever you do, don’t close your eyes, no matter how they try to tempt you and they will try. It’s dangerous to close your eyes, as where ever you are when you do so, will feel like the spot you just couldn’t and shouldn’t ever leave again. As your eyelids fall, a wave flows through you, pulling you away from the conscious world, while heightening every sense your body has. Your entire body is suddenly alive and every centimeter of your skin is tingling. As darkness fills your vision, your muscles start to collapse and you are trapped between two worlds, ones which neither really want your presence. Rejected by sleep, abandoned by wakefulness and unless you are lying down or at least seated, you know, you will fall as your balance is gone.

It is right now that you long to feel an arm around you, another body that will take away the strain of movement, the fear of falling and that feeling of rejection by life, but you had better start praying that they don’t speak you. Your brain is so far away, that words are not there to be used. You feel almost drunk, but without the euphoria or that warm glow that alcohol brings. It’s not just your body that is affected, you have all the bad side of drinking, without any of the good. It is around about now, that you start to feel sick. Remember, all of this has appeared from now where, it doesn’t matter where you are, or what you are doing and there are no rules either about how long it will last. The final twist, no matter whether you go to your bed, or you stay up, you aren’t going to feel any better either way. Going to bed may seem safer, but for me, when the world is swimming and I feel sick, lying down makes things worse. Staying up, keeping your eyes open and getting on with life, is hard, but it actually is the best way to continue, as there is no winning, just waiting for it to pass, and it will when it’s ready.

I don’t know if that belongs to Fibro or PRMS, I have had equal numbers tell me over the years that it belongs in both camps. I don’t suppose that it really matters which, just that chronic fatigue exists. I can remember having spells of it right back into my 20’s, and it was one of the things that used to force me to go to the doctors looking for help. Not when it hit, hung around for an hour or so then vanished, but when it appeared and hung around for days. Almost every time without fail, I would be told, “It’s a virus, go home and rest”. When I returned a week later, I would then be told helpfully, “Viruses can take months to clear, I’m sorry theirs nothing we can do”. If one of them had just done a blood test, sent it off for proof, I might not have taken so many years to get a diagnosis, or if one of them read my notes and saw, that I constantly returned complaining about pain, well who knows. These days, well it varies, it can still hang around for days, or just an hour or so. The most common, is the sneak attack, the one that wipes me out and leaves me floored for a short period of time, maybe an hour of so, then vanishes as fast as it attacked. If what I described where to hit you right now, I know you would be totally shocked, but try and imagine, how it feels when it vanishes just as quickly. We are used to symptoms that build, that move in graduated steps, both in their arrival and departure, quite honestly, the fact that this doesn’t, is probably at first, the most distressing trick that it plays.

Like everything else, there are variations in its strength, what I described I would put pretty high on the intensity scale and almost exactly what hit me yesterday afternoon just after 2 o’clock, and it hung around until just after 4. I didn’t go to bed, as I said, nausea and lying down don’t mix well for me. I usually land up leaning over the edge of the loo wrenching at nothing. Trying to push through and attack like that though is tough. The temptation to just close my eyes and rest my head on the desk is great, but that’s no better than going to bed. I honestly think it the closing of my eyes that is the real problem. I have tried taking my antinausea drugs, but they don’t work that well on this, which just adds to my belief that it’s all tied to my eyes, not something physical. Mind you, it doesn’t stop my taking them, trust me you too would clutch at straws. The point of my writing this, though, wasn’t just to describe how it feels, or to seek sympathy, it does have a third purpose and important one.

In the UK, our government has been pushing to get those who are long-term sickness benefit back to work. If you have been reading my blog for a while, you will already know that I worked right up until 5 years ago when after working from home for 3 years, I was made redundant. Despite being housebound, I fought to try and find another job for over a year, then my health took a downwards turn and I was forced to admit, that my working days were over. I am a great believer that working if at all possible, even if it isn’t in our chosen field, is actually good for us, so in a way, I agree with them, but I don’t agree with how they have been going about it. Especially when it comes to those of us with invisible illnesses, as what your doctor and your consultant say about your health is of no importance at all. You have to attend a meeting where you are assessed by a non-medical person. I haven’t been asked to attend, but I have spoken with many who have, plus, I have kept up with the reports in the media as to what has been happening. There have been many horror stories, of people dying from cancer having their benefits removed and being told they have to go back to work, then dying without the support they should have had, within months. Equally, there have been many who have returned to work and managed better than they expected. Neither end of that spectrum, unfortunately, surprises me.

I wrote this because, I read a post from another person with MS, who had just been told, she was assessed fit to work. I don’t know, if she is or isn’t, what I do know, is she wasn’t a person who expressed herself with a great deal of eloquence. She wrote in great detail about her pain, and her difficulties with mobility, then in a handful of words she gave her version of the above. “I get sick, I can’t stand, I’m so tired, that I just want to give up. I can’t do nothing and I don’t want to. It just happens, like without warning. I can’t work like that.” I knew just what she was meaning, but if you haven’t lived with it, it sounds like nothing at all, something not worth a mention in any way what so ever. Her descriptions in writing about her condition were poor, weak and lacking in feeling. When you write, you have the time to add in far more flourish than you do in conversation. I was left feeling that she was being sent back to work, not because she was well, but because she lacked the ability to describe exactly, what her health, was doing to her, and the impact, that it had on her daily ability, to do anything. It left me wondering just how many people have been found fit to work, simply because they lacked either education or just the simple skill of how to express the reality of their lives. I have heard many times people saying that these meetings are unfair. I have also heard it said that the tests are fair and representative of what is expected in the workplace. Either way, there is one thing that is always going to be true, if you can’t express yourself, well and with confidence, you are never going to be fully understood. Everyone, even those who are supposed to be impartial, judge everyone, by their own personal standards, especially, when it comes to educational background. It shouldn’t happen, but the poorer the area someone comes from and the worse someone comes across, the more likely, is the assumption, that they are swinging the lead.

The “work capability assessment” isn’t a universal system across the UK yet, but this is a quote from the Guardian Newspaper  and refers to a study taken place in these areas, “according to a study that linked the tests to 590 extra suicides and hundreds of thousands of additional antidepressant prescriptions.” To me, there are only two people in this world who are qualified to say if I am able to work or not, me and my doctor. There are no other tests, other than those that assess us medically, that can be brought into this equation. I know, that my doctors suggested that I gave up work 5 years before I did. I believe if I had, my health now would be worse, but not everyone is like me. Whichever way you look at it. these assessments are wrong.

 

 

Please read my blog from 2 years ago today – 26/11/2013 – Hospital and back

I have been home now for a couple of hours now, just trying to catch up on all that hasn’t been done. I have to say the whole trip to the hospital went incredibly well, the ambulance arrived just when…..

 

 

 

Counter-intuitive

Tiredness and nausea got the better of me last night and I headed to bed early. I wasn’t long after 8pm, just long enough for my meds to be kicking in and I simply couldn’t face any more of the day. Adam had some studying to do before college this morning, so I didn’t have to go through that guilt kick that echos around me when I have to give in. Making my decision to do what is right for me, doesn’t mean I won’t feel that it’s wrong, but it did make it oddly easier to take the decision without hanging around for ages swithering about it. I had actually been feeling sick for most of the afternoon and neither my nap nor my anti sickness meds seemed to be touching it, usually they work really well. By the time I was due to take my night-time drugs, I once more found myself sat in the kitchen looking at them and wondering if I was going to keep them down. There is nothing worse than that feeling and it’s one you don’t ever find yourself having to fight until you are really ill. In the past feeling sick meant you just didn’t eat or drink anything when it is at it’s worst, these days I don’t have a choice, I needed and had to take them. Lying down was a blessing and pure relief, when the world is swimming, horizontal is the only position that feels safe and sleep took over quickly. It didn’t last that long though as with less than an hours sleep I found myself awake and in the worst pain I have had in the past couple of weeks in my abdomen.

There didn’t seem to be a single part, top, bottom or sides that weren’t screaming at me and it was totally out of the blue. I just said a couple of days ago that everything had been surprisingly peaceful, but not last night. I lay there for a few minutes hoping that it would just pass, that it was just a trapped air that just needed to move, but it didn’t. The pain was so intense that it was causing my nervous system to go into overdrive. Odd sensation from the insides of my thighs being frozen while my feet were on fire, to pins and needles in my hands and the skin sliding off my face were all there, but when my pet hate, that feels like bubbles just under my skin running all over the place started, I decided it was time to put a stop to it. I knew that there was no other choice than to take a booster pill as it wasn’t going to settle by itself and if I wanted any more sleep. I don’t get what it is about lying down that amplifies the pain, but the second I was sat up on the edge of the bed to take my tablet, the seed of the idea that I might need outside help vanished. Yes, the pain was still there, but it was bearable when sat up, which isn’t a word I wouldn’t have attached to it seconds before. I always thought that it was a psychological thing, as in you have nothing else to think about once you are lying down in the dark. The pain isn’t any worse there, it’s just that you have nothing else to distract you, clearly that was rubbish. Nothing had changed other than my position, if something major was going on, I would have felt no change, position doesn’t change facts.

This morning I am in exactly the same position, even though I actually slept well once the booster took over. There is this immense pressure that I know without trying if I were to lie down right now, would change straight into pain. It’s knowledge like that the total screws with your brain, because it doesn’t matter how tired I might get, I would in the “normal” world be faced with a set of choices, stay awake until I can’t stay awake anymore, try it and see which means putting myself possibly in pain, or taking a booster half an hour before. The first doesn’t work at all, do that and I will send my PRMS into free fall and I will suffer for it for days. Clearly the final one doesn’t really work when you can be fine one minute and dead on your feet the next, planning and chronic illness don’t go together, ever. So I am left with the suck it and see approach, but that causes problems as well, as the booster takes time to work. This is just one of those wonderful loose, loose situations that our health has lined up waiting for us, but it’s also a great example of how you can be left feeling that you just can’t win. There are times when it feels as though there will never be one simple act that you can just do, without having to weigh up the possibilities of what the outcome will be. I don’t thnk there is a single thing in my life any longer that I unlike the old me, although I might think I have choices, I actually don’t.

I can only guess, but I think that if I were to look back over the course of my illness as the real choices in my life have vanished at the same rate as my health has become worse. I never thought that there would be a day when I would find myself looking into my own kitchen cupboards and have to dismiss nearly 90% of what is in there as impossible for me to eat for an array of reasons. I couldn’t have even guessed back then that I would be facing a life without choice, so OK right now I do have some choice, but they are getting more and more limited. For years, I have been guarding the choices that are freely mine, like whether I smoke or not, what colour my hair is, silly things but things that are my choice. Living inside a tight routine, one that was the only way of holding my PRMS level, removes much of the choice that most people have, but it was worth it. From talking to others who also have MS and some with Fibro, they too have found that routine has been almost magical in the way that it lets us remain reasonably well, if not healthy.

To date, I haven’t come across one person who has said that routine has failed them as time has progressed. I said a couple of days ago that I was going to think through the whole process as it is so clearly not working any longer. I haven’t sorted it all out yet, but I don’t think that throwing the routine out will actually help, but clearly working reactively to each day is equally a bad thing. Counter to what logic would say, nothing is really simple when you don’t have a choice.

Read my blog from 2 years ago today – 4/06/13 – Is it age? Is it health? Or is it just life?

I wasn’t too sure that I was going to write about this morning, in the last few days things have followed as always with what is wrong with me and what is happening in my thoughts because of it. I was thinking through some possible starting point, I always work in the same way with just a sentence and then it flows on its own. But I was having trouble to find just…..

One steps forward, two steps backwards

I hoped as I wrote yesterday that the previous night had been a one-off, something that could but wouldn’t happen again, well at least not anytime soon. I didn’t have the same things last night, but it was a night of broken sleep, simply because once again I was feeling sick. Last night is the only night without large quantities of alcohol, it didn’t matter if it were at 8pm when I took my meds or at 4 am when I last woke, I was at that point where I was almost sure that any second it was actually going to happen. It isn’t that severe at the moment, but I am still feeling sick and I have honestly had enough of it. Last night I was blaming it on a mad idea that I had to try taking another of those peppermint oil capsules at around 2:30 that afternoon. By 7pm, I was sat on the settee with heartburn and yes the taste of peppermint overpowering everything. As the evening progressed I started to feel sicker and sicker when I took my meds I also took an anti sickness pill which totally failed to work at all. Come bedtime, I was even unsure how I was going to make it across the flat to the bathroom and then to bed. It was while I was lying in bed for the first spell of fingers crossed horizontal prayers that one of my theories appeared and it is a valid one. I am wondering if I am actually allergic to peppermint.

All my life, mint has been a flavour I have done my best to avoid, not an easy thing to do if you think about it. I don’t remember having any bad reaction to it in the past, just a really strong dislike of all things minty. I even hate it in toothpaste, but it’s in the majority of all reasonably priced ones, so I put up with it, after all it’s not a huge amount. It has been one of those things that has annoyed me all my life, that daily I have to put mint in my mouth and the world offered few other options. Clearly I have no choice, but it even goes as far as the fact I have never been able to stand kissing anyone who has just cleaned their teeth. Anyway, my theory is quite simple, is my strong dislike, actually my body telling me to stay away from it because I am allergic to it? Even this morning I woke with a headache and feeling sick, milder than yesterday, but it’s still there. The only other time in my life that I have taken peppermint oil it wasn’t as concentrated as these capsules and I only took it at night when pregnant to help with indigestion. I don’t remember taking it for long, but it is so long ago now that I would be surprised if I could remember anything else. Last night when I told Adam that the peppermint was causing heartburn, he suggested that I took it before eating rather than after, but after how it made me feel later, I’m thinking more along the line of not taking it at all.

Just a few years ago if you said to someone that you were listening to your body and doing what it told you, most people would have burst out laughing at you and put you on to their list of nutters they have met. These days, it seems to be the first thing that people tell you to do once you are ill. I have lost count how many people have actually told me to listen to my body as it knows best, even people in the medical profession. What I never thought would happen, is that sometimes your body is screaming so many things at the same time, that you still don’t know what to do for the best. It is over a week now since I last got through a full day without feeling sick, from mild to yes actually throwing up. I am now at a loss again as to what is causing what and what I should do about it. It is tempting to put it all down to the Psyllium and peppermint oil, but something is stopping me from doing so. What’s stopping me is simple, how I feel just now, could equally just be and acceleration of how I was feeling before I started on them. I have no doubt about the peppermint causing the heartburn, but the nausea and the desire to just go to bed, are all too familiar. Throw in the pain and fatigue, and I am in rather a sorry state if I am being honest and I don’t have the slightest idea what to do about it.

Technically, I have been ill for 33 years, but not one of those years do I see as being ill. They were my normality, they were just the way things were and I lived through them. So to say now that I am ill, to most would sound really wrong, of course, I am ill, I’m always ill. Today I can draw a clear line and say without a doubt that for the past week, I have been what I would call ill. That is a picture I am sure many will relate with, illness has a huge range, a range that runs from acute to chronic and because you are one or the other, doesn’t mean you can’t have both. I know I am both, but I’m not sure if the chronic is behind the acute, or it’s totally separate. You can’t strip one away from the other, our bodies don’t work that way, we are whole creatures and we feel everything as a whole and that is where the problems begin. My pain levels are raised today, everything is raised today, normally I can pinpoint the catalyst, normally I can be sure of what I am saying and writing about my health as I don’t ever feel there are grey areas. I long ago gave up trying to say this belongs to my PRMS or this to my Fibro and that to my COPD and so on, it doesn’t matter which is behind it in normal everyday life, as I just get on with it. But today it does matter, can I cure this, do I need assistance, is it something serious, I don’t have the slightest idea.

I am so used to dealing with everything my body throws at me, in just getting on and living my life, that finding myself feeling as though I want someone else to make me better, is an alien concept. That is how I feel today, that I need someone to take care of me, to make me feel better and to take this whole thing away and just let me be my normal in pain and ill me. If I could hide, if I could vanish into sleep and wake feeling better, I would. Last night showed me this isn’t going to work that way. My magical sleep isn’t my wand of life right now, as I woke just as I went to sleep, feeling acutely ill and completely confused by it all.

Read my blog from 2 years ago today – 30/05/13 – Where your partner stands

Today started with an unexpected bonus, Adam had read my blog from yesterday and without saying anything made a rather sleepy and squinted eyed journey across the living room to give me a kiss. He wanted to apologise for the snipping and impatience. I didn’t write it to get such a reaction, I wrote because I wanted to……

Keeping it small

I just had far too much for my breakfast, I fell for an offer on hot cross buns and landed up buying two packs rather than one, nothing unusual there for any shopper, but I never throw food out until there is no other choice. There were six buns that had to be eaten today, I know that Adam will without a fight happily eat three for his breakfast, so I ate the other three, one bun to many. Now I feel as though I have just eaten a huge overly rich three-course meal and my insides are telling me so, why is it I can one day eat two, but try three and I want to throw-up? There is such a fine line between comfort and wanting to explode and not just when I try to eat hot cross buns. When you do nothing, well you don’t need that much to eat and if you eat too much, well the weight piles on as I already know, slowly I have been eating less and less, my appetite has diminished along with my mobility, but the scales still tell me I am eating too much. I try to not eat too much at any one time, I have become more of a grazer than a feaster, so I am not surprised that now feel over full.

Food to me isn’t something I am over bothered by, I know that sounds an odd thing for anyone to say, but I have been the same right through my adult life, unless I am really tempted by what is on offer, I just don’t want to eat. I will and always have been happy to live on the exact same diet day in day out for months without even thinking about it. Adam doesn’t like it one bit and has always done his best to try and get me to eat the foods he likes, but there appears to be a golden rule, if he likes it, I wouldn’t touch it. Food has to be either lushes or decadent for my interest to be sparked, I am not the type of person who is tempted by normal everyday foods, my idea of a nightmare meal would be something like steak or beef burger and chips, or even a curry, in fact, anything else that I would call average British fare. Add on all the issues that food causes me, the choking and then the digestive problems, well, food is just easier to be kept simple and little. For me to be tempted to eat every meal on every day, I would have to be moved into a five-star hotel with a Michelin chef cooking every meal for me, but even then I would be asking for small portions. The odd thing is that I know without even trying it that I would very quickly get fed up of even the best foods and would start requesting my mono meals of choice. It appears that like everything else that lives alongside chronic illness, appetite becomes something that is under a microscope and our likes and dislikes are all amplified. For some reason when your entire body is working against you, it can also feel as though the outside world is doing exactly the same thing, what is meant by Adam as a caring gesture, like the bars of chocolate he kept buying me, somehow turn into some kind of challenge, I feel as though I am being forced into eating them to keep him happy. I eventually had to ask him to buy no more of it as I didn’t like it that much or want it, I thought the fact it took me weeks to eat one bar might be enough for him to get the message, but the truth never reached him and had to be spelled out.

When I found that porridge was suddenly making me feel sick when I ate it, I had to find something else, so I tried to eat yoghurt every morning, a month and a half on and it too is making me feel sick. It has become something I was having to force myself into eating, hence the not so hot idea of the hot cross buns. When breakfast started to be a meal with too many problems, I thought that maybe it might be better to have something around 4pm instead. I started having soup, which apart from one particular type, has been fine so far, but I don’t hold out much hope in continuing it as I am now starting to feel sick in the early evening, so badly the other night that I had to ask Adam to fetch me an anti-nausea tablet as I didn’t dare move just in case. Other than lunch, everything that I eat these days seems to land up making me feel sick, I can only guess that it has something to do with what is going on in my guts, but it does also make me just a bit angry. This is now the third time that directly or indirectly, my PRMS has turned food into an issue, I have either through luck, changes in my PRMS or changes in my lifestyle, managed the other two and been able to return to not a normal pattern of eating, but at least one that has allowed me to be able to eat enough to live. Three times I have found myself in the position where I can’t eat and every single one of them has one thing in common, food makes me feel sick. To date, the doctors have been of absolutely no use other than to put a gastric nasal tube down my throat for three years. I eventually got rid of it once I was housebound, not having the stress of getting ready to go out, leaving the house and being in the office, meant that I started to find food that bit easier, but I have never since then been able to eat normally, it has had to remain small amounts when my body can take it. Now I once again find myself facing an appetite that just doesn’t want food and stomach that makes me feel nauseous when I do force it to take something.

In all it has to be about 10 years since I was actually able to eat a normal diet, 10 years of picking at this or that, trying to find some way through the mess that is my body. I know it has to be fed but what no one has been able to tell me is how to do so without it either wanting to come back up or getting stuck inside me. After 10 years you would think that I am used to it, well in many ways I am, but I am also incredibly fed up with it all as well. From the outside, it might appear that it is phasic, it’s not, it’s just it has been going on so long that I don’t really talk about it, but I do admit that like everything else from body pain to diaphragm spasms, the mess with my guts seems to be making it worse and I am spending more and more time feeling sick, regardless of portion control. I know that nausea is part of MS, but the link to the amount eaten isn’t something that I can find anywhere.

Read my blog from 2 years ago today – 28/03/13 – Navigating help > http://bit.ly/10U1ZXp

Today is the big day, Teressa will be married this afternoon! Despite all the changes in date and the whole trauma of actually getting John here, we have made it to the long awaited wedding. There are still several hours to get through before I log on to the live stream so it is a case of keeping busy….

Who needs air

I seem to have totally gone off food again, I ate two mince pies and a small yoghurt yesterday and that was it. I didn’t really feel sick or anything, yes the odd bout of a nauseous sensation, but they aren’t lasting all day, just a few minutes hear and there, the rest of the time I am just not hungry. Not even the remaining treats I had bought for the Christmas and New Year period aren’t tempting me, I just find myself looking at them with ambivalence, no matter how good they look I just don’t want them. I had bought Adam a steak as one of his, I though that he would really enjoy it as he is unlike me a meat lover, last night he decided to cook it and at the same time he fried some onions and mushrooms. It is a fact that the one thing that makes all humans feel like eating is the smell of cooking onions, I felt nothing, not a single bit like having something to eat, which seemed somewhat odd, especially as I had eaten almost nothing. This morning when I went to take my tablets, the time I normally make breakfast, I couldn’t find a single thing that I wanted to eat. My stomach was simply saying no thank you to everything that my eyes offered it. Once again I think it may have something to do with the spasms that I am having in the upper half of my stomach, for the last few days they have been driving me mad. Even just sitting here is difficult as I keep feeling as though I need to stretch out my mid region in the blind hope that somehow that will remove the pressure being caused by the almost constant spasm. It is even more difficult to eat when your diaphragm and guts are locked into a game of who can put on the best spasm and for the longest, I just wish they would grow up and behave themselves, just like petulant children they have become annoying.

The postman rang our doorbell yesterday afternoon, for a moment I couldn’t remember anything we were waiting for that could possibly require him to do so. Adam was in the kitchen so he went to the door and appeared shortly afterwards in the living room holding a small package for me, it’s odd how my brain does that to me, totally 100% sure about something, then suddenly it tells me a completely different story. The second I saw it I was also 100% sure that it was my new sleep mask and I was right. As with all these small parcels that arrive it was a jiffy bag and one like all it’s friends, almost impossible to open, I honestly with the companies who made things realised that it is a human who has to open it and normally one who doesn’t want to be showered in shredded paper, simply because the glued closure is set so well that even a Gorilla couldn’t re-open. Once through the built in barriers I unpacked what I can only describe as a miniature seamless bra, you know the ones that nobodies breasts actually ever fit into, they just sort of hide inside those oddly shaped mounds that clearly are designed to make anyone feel inadequate, despite the tags telling us they are the correct size. If I thought the shape was odd to look at, it got even odder when I put it on last night, as there is something totally wrong in knowing there is something over your eyes, yet you can open and close them with ease. Why this function seemed important to its maker I am not sure, but opening your eyes to discover total darkness like I have never seen before, even on waking in the middle of the night, is alarming, more like going blind than waking at night when you can always see something. Having said that the reason I bought it, to relieve the pressure over my nose worked perfectly, unlike the earplugs I bought thanks to their boasts of being better than the rest, I’ll stick to the foam ones which really do work.

Despite the fact I had a comfortable mask last night as I already gave away, I did wake up last night. As often happens I at first wasn’t sure what my reason for being awake was, I had this memory of hearing something like someone trying to brake through our outer front door, something no one could actually do as it is solid Victorian storm doors with wrought iron locks, braces and hinges, so despite believing that was what I heard, especially as I had my earplugs in, how could I have heard anything that clearly, so I just lay there for a while. I guess I was starting to drift back into sleep when I heard it again, but this time I knew it was much much closer, like right inside my bed. What I had heard was myself, to be precise it was my breathing and the rattle and draw sounds coming from my left lung and it explained why it sounded so loud, as I was really hearing the vibration it was causing. I coughed several times but it made no difference, so I got up went to the loo and then into the kitchen, yes for a cigarette. To a none smoker that will sound mad, why fill your lungs with smoke when clearly they aren’t working correctly, well I don’t understand the reasons or science, if there is any, but it really works and no not by making you cough. I have never had a smokers cough, it is something I have never understood as I was an extremely heavy smoker, but after enjoying my way through two cigarettes, my breathing started to ease slightly and I headed back to bed. Even now, despite having a diagnosis of COPD and a stop watch ticking away my life, I still don’t cough. What I once thought was a strange bonus, I now can’t help wondering if it isn’t going to be my undoing. The filling up with gunk that I can’t or don’t cough up is the reason that I no longer sleep on a flat bed and that was actually how it had all gone wrong. I had for the first time in years, slid myself down the bed, so I was almost clear of the slope and I had drawn my legs up by tilting my hips slightly, leaving the rest of me flat on my back, I haven’t been able to roll on to my side for a long time, I simply don’t have the strength.

Now that I have thought about it, I realise that I might also have the answer as to why I don’t want to eat this morning, my breathing is still a little laboured and when I sit and breath shallowly for a few minutes, I can feel and hear it rattling inside me. It is one of those catch 22’s, I can’t take a deep breath because of the spasms, but I need to to keep my lungs clear, I really can’t win some times.

 

Please read my blog from 2 years ago today – 04/01/13 – Everything is happening at the WRONG time.

Well I know I am sat here and I know that it is Friday but it all seems wrong, not for any terrible reason but because I am in that state that even you are probably in the post Christmas muddle. We are adjusting to………