The ogre in my life

Posted on June 30, 2015 by livinginalimitedword

I found myself once again shuffling what had to be done and not doing all of it, despite there being more than enough time. Not too surprisingly the job that never got done, was the one that I hated the most, picking up the phone and talking to people. It doesn’t seem to matter whether the reason for the call is social or essential, I will avoid it like the plague. It’s so odd this fear I have developed of the phone and it is a fear, I honestly don’t want to even touch the thing if Adam is here to deal with it. Many of my working years were spent doing just that talking on the phone. I worked in Telesales for quite a while and I am still proud of the fact that I was really good at it, but I was good because I chatted with the people I spoke to rather than reading a script to them. In fact, communication has been my main work skill that traveled from job to job with me until I started to slur and stutter. I know it isn’t that alone that make me do anything but pick up the handset. I honestly feel scared now by the muddle that I know I am capable of creating without even trying these days. The mess that I jokingly call my brain is something I don’t even think about when I am talking with Adam. I can talk about anything with him, bring in a stranger and I am demolished into a verbal muddle. Strangers don’t have the patience to just go slowly with me, they all do the same thing, they try to fill in the blanks that I get stuck in and usually get it wrong. I am suddenly faced with someone who is talking at me about something I hadn’t called about and it becomes really hard for me to hold onto what I called to say and to shut them up long enough to get my question out and hopefully answered. The phone has to be my worst nightmare these days and I will do anything that I can to avoid it, even when that call could or is to my own advantage or vital to my health and happiness.

It’s so hard for those who don’t live with a brain and/or speech problems to do what they all know is the right thing, to stay quiet and just listen to the person rather than talk for them. Human nature seems to be programmed to be either “helpful” or impatient, the actual ability to deal with the person, rather than our own time, is low on our personal scales. I used to be as guilty until I had a friend who just like I am now, would become locked into a word and unable to finish a sentence. It was my first taster of just how something that is actually a tiny issue can take over a person life and even their very personality. I learned it when I was young enough to take it on through my life, the thing I had learned that most people miss, is to listen to the person, not their words. I know that sounds odd but what I mean by it is that every person talks in a different way, different accents and with different issues. When you listen to the person, you are really listening, not skipping ahead or past them and it’s a skill you have to practice with everyone, that way you never get it wrong. Rather than you governing the pace and subject, you have to respect theirs and find the balance between you.

It is so frustrating when someone else finishes what you are saying for you, especially when they get it wrong. When you are face to face with someone you can make it clear that you need help to find the word or that you want to be left to find it yourself. I have developed some facial and hand signals that Adam now knows, so I can show him if or if not I want help. They are nothing elaborate and I am sure that even a stranger would understand them, but the phone means that you can’t be seen. It means the person on the other end, especially if they are at work and just want to get you off the phone so they can do everything else, doesn’t have the slightest idea of the issues you live with. We might as well be on different planets and speaking different languages as our ability to fully understand a person we can’t see, is zero. Human communication is actually far more about body language than the words we say, so the phone is alien to us anyway. Add in a speech impediment and a dose of brain damage and that phone becomes an ogre.

Just as I have handed over the job of opening all my mail to Adam, where and when it is possible for him to make a call for me, I will ask him to do so. The problem with this one is that it involves my doctor and my medications, they are things that I don’t know if they would accept a call from him on my behalf. We are still far from the edge of him having to do everything for me, the point when we would clearly have to inform all the relevant people that he has my authority to do these things on my behalf. Everything in life seems to have these grey areas, the points when things aren’t bad enough for the full power of attorny isn’t required, but the option for help isn’t available. The rules on all these things are so black and white but the reality is that life never is. The unfortunate things are that it takes some kind of crisis to highlight when that point has been reached and unless it is sorted out and ready to go, well you are stuck. So OK, we didn’t need a legal status change for Adam to open my mail, but it took my finding myself totally distressed by what in reality was nothing more than my brain getting it all so wrong. What crisis has to occur to prove that I need help with the next thing or the one after that? Why does life have to fall into the abyss before there is a safety net there to assist if not totally catch us?

I suspect that there are millions of people out there right now in this very situation and every single one of us is doing the same thing. Pushing it to the back of our minds and just hoping that it will all be OK for a long time to come. The danger is, that not one of us can be sure that the abyss isn’t going to open up in front of us in the next second. Chronic illness is scary, it is a monster that has more arms and more legs than any of us want to think about. To me, being independent is important, but there are days, situations and events that at that second, I don’t have the ability to deal with. The buzz of facing a challenge and achieving isn’t big enough any longer to out shadow the fear of finding myself flat on my face. Right now I am in nowhere land, not disabled enough to just hand every aspect of my life into the hands of others, but definitely in need of a strong guiding hand.

Read my blog from 2 years ago today – 30/06/13 – Stifled by perception

I now know that Teressa and John will be here on Tuesday and Thursday, I’m not clear yet at what time as she phoned yesterday afternoon when I was asleep and, of course, there was no set time. I suppose it is all rather vague right at that second as they are staying with friends and what they are doing when will also have to be part of the equation. So I am just forewarn you all that my posts may be a little-broken or…….

Restructuring

Posted on June 29, 2015 by livinginalimitedword

All I have done since I woke up is to cough. Yesterday evening even Adam broached the subject and asked if I thought it was getting worse again, in other words, he thinks it is. I had to be honest and tell him that I thought that it might be but I wasn’t sure if it was bad enough to require a call to the Doctor or if it was just to be expected. What I do know is that it is now centered on my left lung as the back and lower edge of that lung complains about every breath I take, but compare it to two weeks ago and I am as fit as a fiddle. I woke last night just before midnight coughing madly and Adam appeared once again with a measure of cough mixture that did the trick. Sleeping solidly from then until the alarm sounded was wonderful. I honestly don’t think I have had a full nights sleep since this whole thing began, which doesn’t make the rest of my life any easier. Today seems to be just like yesterday. At first I was coughing and finding nothing but the desire to cough again and again. Eventually, there was a small amount of the thick nasty gunk, then the water returned and it has been nothing but thin watery liquid ever since. Once again I can’t hear any crackle or wheeze, I just feel it in an intake of air and there it is suddenly drowning me before going quiet for another few minutes.

I have once again been doing something that in the last few years I have become an expert at, I have been putting things off. I now find myself with a list of things that I have no other choice but to do today. Top of that list is to have a shower. When I went for my nap yesterday, I fully intended to have my shower when I woke. The problem was that when I did wake, all I could smell was bleach. Adam had been going mad with it in the bathroom and even in the hallway I could feel the fumes cutting into my lungs, my shower wasn’t going to happen. I have shuffled it forwards four times now and, to be honest, I feel disgusting and the fact that the shopping will be here this afternoon, is the icing on the cake, I can’t let anyone see me looking like this. I also have to make two phone calls, first to the doctors as I have to be sure that the new calcium tablets are on the list of repeat medications. Then I have to phone the chemist to add them on to their list of drugs to order for me. I also need to have a word with them about my Amitriptyline. I have been taking it for years and although the brands change all the time, it has always tasted just like they all do. When my meds arrived last there was a different brand and I thought nothing of it until I had to take it. The only way I can describe it is to say that it tastes like soap. I am usually really good at taking anything, no matter how horrid the flavour, but this one has me stumped. It has got to the point that I now actually dread having to swallow the stuff. I find myself every night sitting on my perching stool in the kitchen just looking at the little cup with this stuff glaring back at me and wanting to do anything, other than have to swallow it. I have never asked a chemist to not send a certain brand of a drug before, so I don’t even know if they will be happy to change it back or not, but I have to try.

I can’t be sure what started it, or even when, but I have for some reason recently been plagued by heartburn. I don’t mean the normal stuff that we all know, no this is turbocharged. To me, heartburn was never more than a discomfort in the area of my sternum and a burning sensation in the back of my throat. I don’t remember it lasting more than maybe half an hour and then nothing for months. This is like someone has kicked me in the chest and the pain starts in line with my stomach and goes right around to my sides. I can feel it right up to my armpits and the only reason I know it’s heartburn is as within a minute or so, the normal heartburn symptoms appear and I have to drink something so that it doesn’t burn its way through my throat. I have lost count how many bouts I have had, but strangely I have found that even a few mouthfuls of coke have the desired effect on my throat, the rest of me takes time. I have never had heartburn that wakes me up in the middle of the night before, or appears even before I have had a chance to eat something in the morning. To me, this is really odd and the only thing that makes any sense is that when my diaphragm spasms are now tight enough to actually crush my stomach and forcing the bile upwards. I have for years now been on tablets that are there to protect my stomach from all the drugs that I take. I actually can’t remember having heartburn at all in all that time, then this started. I got Adam to buy me some suckable tablets that I have taken in the past, in the past they were wonderful, now they don’t seem to be doing much at all beyond what I can do just by drinking something.

I have been working on what my new routine should look like. The biggest change is that I have built into it rest points, times when I simply stop doing whatever I am and go and do something else. For example, I used to have my breakfast while I sat here working through my online stuff. Now, I stop. I am taking my tablet, eating breakfast as a focused on meal rather than something that is happening in the background and once finished, I sit and go through what I want to add into my schedule for recording on the TV. I have allowed for short breaks like that throughout the morning. My work schedule is now constructed in such a way, that once I have finished my blog, and the tweets about it, the rest can be done whenever I want throughout the rest of the day. I am hoping that by just breaking the ridged structure down and stopping from time to time, that I will not wear myself out quite so quickly or quite so totally. Having spent a couple of weeks being forced out of my old routine may just have been the best thing that could have happened. Even what I put out on Twitter has changed, not in content, but in quantity. I no longer have this tight list that I stuck to daily, now if I don’t feel like doing this or that, well I don’t.

All that might sound really trivial and as though it is something anyone would do when they don’t have the health of a flee, but to me it is really hard just now. I have it so well ingrained into me that life has to be a productive venture or it isn’t worth anything, that being able to stop and do nothing of worth, is hard. I know without a doubt that I have been pushing myself too hard, but it is incredibly difficult to fight against everything you have ever lived by. Just stopping for a few minutes is hard enough, bearing in mind that I don’t remember ever taking a lunch break in any job I have ever done, yes ciggy breaks, but eating, well that could be done when the work was finished. When you are having to literally reprogram your soul, it’s hard. This new freedom to do what I want is odd, as I can’t find things at the moment other than games to fill the time. Years ago I would have sat and done some kind of handicraft, but with my poor eyesight and crap dexterity, well embroidery, knitting and all the rest of them, just isn’t possible. I might have eventually accepted that I am not up to being superwomen any longer, but accepting that I can even be a shadow of her, well it is both hard and it hurts.

For me, it doesn’t matter what my health throws at me physically, how much pain, discomfort, fatigue and all the other things it finds to play with, it is the mental attitude changes that I find the hardest. It is beginning to feel as though those changes are having to be made more often than in the past. I knew this time would come, the point when want and ability were two totally different things and that want would be the one to suffer. Even though I knew it would happen, it doesn’t make it any easier to actually accept.

Read my blog from 2 years ago today – 29/06/13 – Thoughts

Yesterday and so far this morning have been filled with pain in my legs, it is one of those shift about and twist days, but with little real relief. I sometimes wonder how I have managed to gain wait as although I would class myself clearly as immobile I rarely ever actually manage to sit still for long. I know that I frequently joke about switching them for…..

Hiding in the past

Posted on June 28, 2015 by livinginalimitedword

I nearly did it this morning, that alarm sounded and I didn’t move. I lay there after turning it off for a couple of minutes then pulled myself up to sit on the edge of the bed. Even there I wasn’t sure as it took me more than ten minutes to put my cloth on and as I pulled up my last sock, I was still thinking, you could just go back to sleep. There is clearly something deeply set inside me that says I have to get up, I have to be active at the time of day that day starts for the world as I am part of it. I can’t believe just how hard it is to say “Sorry world I’m going back to sleep, I need it”. I do know that a large slice of it has to do with making sure that during the week Adam is up and out for work, something I have done throughout our marriage as getting up is something he is really, really bad at, but today is Sunday, there is no work. Programmed by my family from birth that having a lie in was something we as a family didn’t do, that there was always a reason to be up and if you didn’t have one, they would create one. Mind you, I also don’t remember those arguments so well documented on TV between teenagers and parents. Both my sister or my even older brother, like me just dutifully followed the rules and got out of bed, arguing back, wasn’t allowed ever. Mind you, I don’t even remember talking back to my parents at all, or even talking unless being spoken to first. Victorian rules ruled and personally, I don’t think that was such a bad thing. I actually only remember being able to sleep funny hours when those hours were created by my work. Ah that great god of life, work, it really does have a lot to answer for. If we had the money for Adam to not work, well I honestly think my world would change overnight and lie ins would become part of normality, not a horrific argument between, mind, soul, body and heart. I doubt even then that I could do it every day, but at weekends, I might just enjoy it.

When I was taking the steroids last week, I had to have something in my stomach before I took them, Adam took on the role of making me a slice of toast each morning. I am not a great lover of what most would call normal toast. I totally hate it when someone puts marg or butter on it while it is still hot, as that just makes soggy warm bread. That first love/hate was easy for Adam to achieve, in my opinion he is world class at letting food go cold, but I didn’t push my other likes and just ate what was there. I have since then had an urge that I haven’t fulfilled until this morning, proper breakfast toast. Yes, there is a recipe for breakfast toast and I think my Mother created it. First burn your toast totally, there should be nothing other than black to see. Then let it go stone cold, and only then cover in salty butter and thick cut marmalade. Then cut the toast in two and place your knife between the two outer burnt sides and slice in to form a pocket, now spread butter in there as well. There is something about the combination of salt, carbon and marmalade that makes it not just nice but to me moreish. Mind you, it might just be that my Mother was such a bad cook that her toast just seemed wonderful in comparison to everything else she served up. Either way, it is one of my comfort foods, something that when I don’t feel great I treat myself to as I know without a doubt that it would be heart-attack country if eaten daily as we all did as children. With the pain in my chest, today felt like one of those mornings where I needed a cuddle and there is nothing like childhood food loves, to do that with style, even if it leaves my kitchen filled with smoke and the entire house smelling of it. I don’t remember it, but with 6 of us in the house all having at least two slices every morning, the kitchen must have been like going into a cave each morning, probably another reason that we had breakfast in the dining room.

Yesterday, there seemed to be a really good improvement in my chest. My coughing was more subdued and I didn’t feel as though I was having to fight through layers of fluid to just fill or totally empty my lungs. Lying down was still an issue, they didn’t like it much, but still they were better, all in all, I had a bright view of what I though the next few days might hold. Overnight I was up twice and on both occasions I took a dose of cough mixture that calmed things long enough for sleep to take over again. Waking this morning to find that just breathing was a painful process, did come as a bit of a shock. It was as though my ribcage had locked and each breath was a gradual stretching process, slowly allowing more and more air in. My throat once again has a tight achy feeling which reminds me just what is wrong when I take anything but a slow controlled breath. I can only guess that I was coughing more than I was aware of last night, as to feel like this, I would have expected hours of continual exertion. Everything is ticking over just below the level that I would think of calling the doctor again. Yes, I am still coughing stuff up, including the watery liquid, but I don’t have that crackle and rattle all the time any longer, just during and for a few seconds before I cough. The crossover of conditions is clear today as well, as I know without a doubt that the pain throughout my body is down to my PRMS and my Fibro, neither take well to having disturbed sleep. There is no mistaking the deep muscle ache and fatigue, nor that feeling that my body just wants to collapse in a heap.

Thanks to a letter that arrived yesterday morning from my doctor, I am now taking even more tablets every day. When I was at the hospital they did some blood works and one of the things that they showed up is that somehow, I am deficient in calcium. If someone had asked me to sit and make a list of things that I might not be getting from my diet, I wouldn’t have even put calcium on the list. It doesn’t matter how bitty or faddy my diet ever gets, there is one thing that is almost always high on my list of foods, dairy. I eat cheese and/or yoghurt every day and normally in what I would consider good quantities. I have been careful to alway make sure I eat foods outside of dairy that contain calcium whenever available, as I was warned 15 years ago when they diagnosed my Fibro that I had early signs of Osteoporosis in both hips, but worse in my left. To be honest, I always thought the damage was most likely due to the fact that I had never thought anything of going on a 10-mile walk as I never owned a car or when DJing, dancing none stop for four plus hours. I wasn’t ever the type of person to be found just sitting down, I was constantly on the go, so my hips had been taking a battering from birth onwards, far more than most peoples. What I don’t ever understand is why every vitamin tablet I have ever taken, prescribed or not, is the size of a horse tablet. These things are the same size as my 600mg Gabapentin tablets, which get stuck in my throat all the time. I really don’t understand why companies insist in making these things so big, surely it must be as clear to them as it is to me, that two or three small pills go down easier than one huge thing.

It feels as though every year they have added something to my list of things to swallow. The only years I have gotten away with it, were the years that I hid from then and they seemed to forget about me as well. I am always reluctant to even speak to a doctor until I am sure that there is something wrong that I am failing to correct. My reluctance has actually grown thanks to this mess with my chest. I can’t help but draw the conclusion that if I hadn’t been told to change my diet, I wouldn’t have been hit by an exacerbation. Thanks to that happening, I am once again waiting to head back to the hospital to see the consultant as my GP feels that I need to be reassessed, which sounds like code for more tablets to me. I will wait to see what they have to say, but the desire to just slip into the background is growing again.

Read my blog from 2 years ago today – 28/06/13 – Playing Doctors and Patient

I have been mulling over something in the last few days that so far I have no exact answer to, but I still feel the truth is clearly here somewhere. As you know I spent years fighting the system to be diagnosed with MS, all the time convinced the doctors were getting it wrong and I have just been through it again with my COPD, although this one only took 18 months not 13yrs, both these things and a few more minor ones in the past, have built two pools of thought. The first is simple in it is…….

Which is which?

Posted on June 27, 2015 by livinginalimitedword

I am beginning to think that my chest is never going to be clear again and that I won’t ever make 5 minutes without coughing. I tried through the first half of yesterday to take things really easy, but it was for nothing as by the time that my naptime came around, I still couldn’t sleep. By the evening, well my entire body was rebelling, lack of sleep is never a good look, but a lack of sleep, the need of a shower and a body in pain, is even worse. I still feel like I am carrying a dose of the flu, as that is the closest I can get to describe how I feel on top of everything else. I ache everywhere, from my toes to my neck, every time that I have to stand up there is this overwhelming desire to lie down instead. Even my decision of having a treat of a flat bread last night turned out to be a bad idea, yes, I really enjoyed the taste and everything about it, but halfway through, it became a struggle. It’s odd how you can live so many years, but still not listen to your own body over one simple thing, when it tells you, your full. The last quarter was actually a struggle to push in, but push I did and quickly wished I hadn’t. I guess it also shows just how little food my body wants to accept, less than one portion of bread, is nothing. Finding myself at a point where food is more an annoyance than a joy is still alien to me, but it is something I have lived with for so many years, that in an odd way, I am used to it. I am no different from anyone else out there, hand me a good restaurant menu and I will read it salivating all the way, but put those foods in front of me and far too quickly, I can’t eat anymore. Over the years, my mind has caught up with this and I don’t order or buy anything that I know won’t be eaten by me or Adam, if I fail, but it doesn’t stop me from wanting to be free to eat what I want as I used to be. The one thing that I can’t get my head around is the fact that they say you need 2000 calories just to keep breathing each day, but I eat way below that normally and I still gain weight. Someone somewhere has got that one wrong and it’s a pain.

My body feels totally exhausted today, I thought it was bad yesterday, but it has notched things up a level even though I think I slept well. I just covered my eyes and sat for 20 seconds in the dark, my arm taking the weight or my head and I instantly felt sleep creeping in. My body seems to be almost crying out to me to stop, but if I do, what then. Right the way through since I became housebound, I have done everything that I can to stay in line with the world. The idea of slipping into a lifestyle of being awake all night and sleeping well into the day just doesn’t sit well with me. Last week when I was really ill, I accepted as I had no other choice, that I slept until my body was happy to stay awake. Somehow my routine held, I still was awake during the day for short spells and slept all the way through the night. Despite doing all that I can to be part of the world this last week, I have had every morning this overriding feeling that mornings, well they should now be part of the night. Every alarm that has sounded has been a shock to my soul. Getting up has been a struggle and the desire to lie back down and sleep immense. I keep telling myself that it is just the tail end of this exacerbation, but I am expecting it to work like a bug and I just don’t know if that is the truth. As always, the online sites tell you about how they start, how they feel and what to do, but not one tells you how long it lasts, how quickly you should recover or any of the questions that are still running around in my head. Just as with my food, I don’t want to throw out the balance that I have maintained for so long, but right now, I don’t know how to maintain it either.

It would be so easy to just give into both these things, to say to hell with it and to sleep and eat whenever the urge takes me, but I honestly don’t think it is sensible. Everything from the last 30 years of my life has told me that routine is the one thing that keeps me going. If I am honest, I am scared of letting it go, even if I were to time cap it as that is one of the answers I have considered. Part of me says that I should put a two-week goal point and to just do what my body wants until then, then to worry about the routine. There is also an even bigger part of me that finds that totally terrifying. Maintaining my health has been a long slow process of working out what keeps me at my best. It has taken years of trial and error and every error has been pretty much the same, followed by a crash. I honestly fear that if I were to give into what my COPD is saying to me right now, that the result will be a PRMS crash. Which is why I said yesterday that I wish I had a dedicated person to deal with it all, I would be more willing to give change a chance, if I knew I had the backup. Until the last couple of weeks, my COPD has been a secondary condition, something that was there but didn’t really have the impact behind it that my PRMS had. On the whole, I ignored it and I thought it was ignoring me. I did daily what I knew worked for the condition that I believed was the biggy. I know that the specialist had thrown my diaphragm spasm into my COPD, but we were agreed that they belonged on the PRMS stack. Clearly this is the reason that I have been thrown so hard by the fact that my COPD has the power to take over my life like this. I also don’t now know what I should be doing, trying to balance and protect myself is always my first order, but how do you balance two things so different and keep both happy.

Two days ago I thought I was really getting better, I actually had a few hours of feeling good. Now, well after yesterday and how I feel today, I don’t have the slightest idea what to do but the one thing I do know is I am still not well. If I could split the two conditions as I have in the past, I would, but now I am not totally sure or not if everything outside of the cough, might actually be a PRMS kickback, a mini crash if you like. The overpowering fatigue and the pain could clearly point to that, but it also fits equally with a COPD exacerbation. This is an awakening to me, I am suddenly caught in the midst of a world that I don’t know, that I can’t out wit, preempt or even get my head around and I don’t like it.

Read my blog from 2 years ago today – 27/06/13 – And all over a Peach

I have just enjoyed a lovely summertime breakfast which included Peaches and Nectarines, well one of each, just two days ago I was cursing ASDA for there sending me so many, I had ordered both, but they sent even more as subs. There now being not just a bowl full but a sizable mountain means I can eat as many as, whenever I feel like it, even……..

Where next

Posted on June 26, 2015 by livinginalimitedword

It’s going to be one of those odd days, I know it’s just started, but I can feel it already. There is something about that first hour of the day that somehow does one of two things. It will warn you of what lies ahead, or it will trick you into a false sense of security that you’re actually going to have a great day. I used to put those feelings down to how well I had slept and how much I had ahead of me on my daily ToDo list, I was surprised to find that work actually had nothing to do with it and sleep very little. Even though it is Friday, Adam is snoring gently on the settee, he isn’t starting college until late today, so the fact he actually got out of bed was a bit of a surprise. Usually because of my strict daily routine, what time and where he is during the morning has no impact really on what I do. This morning, this morning for the first time I can remember I wasn’t at all pleased to find out that I could have had at least an extra hour in bed. If he had only mentioned it last night, I would have asked him to reset the alarm and let me sleep just that bit longer. When he told me this morning, I was at first angry with him but I quickly realise that he had no reason to even think I would be thinking that way.

I have noticed all this week that I have left over a desire to lie in bed from last week. I understood it when I was really ill, but now, well I can say with my hand on my heart that I am a lot better, but still I want to sleep. I can’t be sure yet if it is just the fact that my body is still run down, or if I am not actually quite as well as I would like to think I am. I know that they could be one in the same thing, but I really did feel on Tuesday and Wednesday that I had a real energy inside me, the sort that only comes with health, not from just feeling better than the day before. Yesterday, it all crashed back down in a gentle way if that makes sense. As the day went on my desire to just sleep grew and grew, all I seemed able to do was to cough and to feel overly warm in that sticky way that normally goes with being ill. I kept putting it down to not having enough sleep the night before, but I was doing so very much aware of the fact that I didn’t actually believe it myself. Right now, I feel like I did this time two weeks ago when I was on my way downwards. Then I was telling myself all sort of things in the hope that all of them were wrong, but that’s something I think comes with chronic illness. Plus, of course, I was still on that high from seeing the consultant, when I was still under the belief that his ideas might just make my life that bit better. The consultant gave me one good week, one week on a high before my body took exception to one of the new items in my diet and went into a spin.

After spending so many years ill, you would think that you would build up this veneer that doesn’t let you be pulled into false hope. I guess because it was coming from a doctor I didn’t see it as false, I saw it as a true chance, the opportunity if not to be well, to be just that bit better. I stupidly allowed my hopes to be raised and yes, I should have known better. The past has shown me over and over that at best the doctors might just be able to keep me steady for a while, but not one has ever managed to make me feel better, even for a short while. I wanted to believe, I’m no different from anyone else, the one thing I long for is to feel better than I do now, however that now is. Yesterday I was sat here at one point and reality sort of slapped me in my face, I wasn’t going to get better. I might not feel like death warmed up, but I wasn’t going to be without that pain in my stomach, the diaphragm spasms, the struggle to find air or any of the pain that the rest of my body is constantly in. In fact, I have realised that in a lot of ways, that attempt to through diet to keep my body clear of build-up and the pain that it caused, had being shown up for exactly what it was. Being curled up in bed dying for over a week, meant that I really didn’t eat anything, just toast and milk. I kept trying, but I just felt sick, the odd thing is, I am still right through to this morning, still going to the loo and opening my bowels. It doesn’t take a genius either to spot that what I am passing is still the food I ate when I was working on actually eating Psyllium. My body is still more than two weeks behind, things have been moving with ease for the last two weeks, which is better than straining, but it still wasn’t moving any faster. Nothing has changed as far as the nerves working on moving things through me, they are at the same virtual standstill. On the good side, well the good side is that I am sure I am almost empty for the first time in months, but that happens when you don’t eat.

I can’t be sure if it is the Psyllium or the other foods that I had to force into my diet to make it edible that actually triggered the exasperation, I doubt that I ever will know. What I do know is that I still feel sick at the idea or eating and after anything that I do sneak inside me. I know that food and I have never been the greatest of friends and I know that I can’t live without it, but right now, I am both being made ill and thanks to the last fortnight, now have a new wariness towards food. I feel as though I am very much trapped in a lose-lose situation, with the additional fact that no matter what I do, I don’t seem to be getting any better and living in danger of just getting worse again.

I slept well last night, thanks to the cough bottle again. I did try to sleep without it, but my body had other ideas both at 11 pm and 4 am, both fixed with ease and both led me back into a deep sleep. I so wish though that Adam had told me about his late start, as I feel weak and in need of sleep, just as I did all last week, I just want to hide in my bed and sleep the hours away. My chest is jumping madly from water to gunk, nothing, not even my cigs are giving me more than a few minutes without the desire to cough. You don’t know how much I wish that I could go back three weeks and be there sat in that consultants office, armed with all the knowledge of the last three weeks. Right now I don’t know if I am ill, or just chronically ill, which it is that has the biggest hold over me is impossible to say. I don’t understand enough about what has been happening to my lungs, or how two things that I can’t put together with ease in my mind, actually came together to leave me feeling this way. Health used to be simple, either you had it or you didn’t, but when you have a collection of medical conditions that are fighting each other all the way, it is a war.

I know that I said it the other week, but right now there is nothing I would love more than to have one doctor, one person who was in charge of me. Each specialist knows his own area, but the consultant I saw last month knew nothing about PRMS, COPD, Fibro or any of the rest of them, if he had, he would have foreseen the possibility of what actually happened. I am more than happy to put in the work, the tests and the trials to find what my body can take, can do and even the possibility that it might all go wrong, but only if I had a person there to turn to. I am not up to doing all this alone any longer, I don’t have the physical strength or the mental agility to stay one step ahead of it or to keep taking risks that might just make me worse. Without that help, I am left feeling somewhat lost, unsure of who I should listen to, what I should try and if there is even any point.

Read my blog from 2 years ago today – 24/06/13 – Finding the joy in living

They say that life only doles out to you, what you can deal with and to an extent I actually think there is something in that. But I think there are two things that make much more difference to your survival ability, the first and I now think most important is simple acceptance, not giving up, acceptance is a very different thing. I have from where I’m not sure always had an attitude of well this or that has happened, I can’t undo it…….