Who knows

I don’t know what has been up with me this week. I feel as though I am struggling, but why, or even, what specifically is making me feel that way, I’m not sure. It’s not as though anything that has happened, or any of the symptoms that I have been battling with, haven’t existed before. Yes, there has been a lot of times where I have felt buried beneath a mountain of them, but even that isn’t really new. For some reason that I can’t actually work out, I am struggling. I hate it when I can’t put a smile on my face that feels totally real. I hate having to put one on there, that feels even slightly fixed, but I have to. I know full well, that no one’s standing over me, telling me I’m a misery guts and to get my act together, other than me, but we are our hardest critics. I am the only person on this planet, who is pushing me to be happy, that’s stopping me from falling into bed and not just staying there, something I think I could do with ease. I don’t think, there has been one single evening, when Adam hasn’t double and triple checked, that I’m OK because, he knows full well, I’m not, and I’m just putting a face on. Just as there hasn’t been a single morning, where he hasn’t left me for work, without giving me one of his quizzical looks. I don’t answer his word or his looks with total truth because I don’t actually know what it is. Everything, just feels wrong, and what does that actually mean?

I know that this damned numbness is getting to me, but that isn’t enough, to make me feel or act the way I have been. Yes, I would dearly love to know exactly where my lower limbs are, rather than just this dead heaviness hanging below my knees, and to not dread sitting still for a second as the numbness will spread and grow, but numbness isn’t enough to make me fell overwhelmed. Nor is the pain that has snuck into its core and is at this second is living wrapped around my bones. It feels like the trigger as it is from the pain, the numbness emerges and spread in every direction. Yes, I have found the start point, it took me time to work it out as pain is just a normality, not an oddity. What starts the pain, well that’s still a mystery, to work that one out, would mean working out what causes PRMS. My hands now feel so swollen that even the fact that my rings are still spinning in circles is getting really annoying. I have lost count the number of times I have fixed them in the past hour, then found myself staring at what should be fat fingers in disbelief. Clearly my sensory system is working overdrive as if it isn’t numb, it is telling me it’s itchy or cold or worse still on fire. Every part of me is alive in some way or another that no one, other than me, would accept as normal.

Every morning this week has been the same, as it along with the last hour of every day, has been the time when I have felt most keenly that life is getting tough. I do everything that I can to do all that I need to, if not in tightly timed pockets as I once did, at least within a reasonable scale to the rest of the day. There hasn’t been one morning this week where that has been achieved, not one. Somehow, the hours have flown and as suddenly as my day started with the alarm, the hour of 1 pm, has arrived. Six hours were I don’t feel as though I have stopped for a second have passed and every day, I am behind, not finished and happily fetching my lunch. Yesterday, it took me right through to three o’clock, two whole hours, that I have no idea where they have gone. I know without a doubt, that I am typing slower as the pain in my hands has been a hindrance. I also know that my concentration has been thin and I frequently seem to be staring into space, but, is that all enough, I don’t think so.

My intestine has been tight and pressing into my diaphragm every day this week, and every day, which is far from normal, I have actually moved my bowels. I did increase the dose of Psyllium that is in each of my pancakes, as I had let it slip to so little, that it was having almost no effect. I know it always takes me a few days to settle to any change in dose, so the pain increase and the pressure increase is around what I expected. The odd bit is, this dose is exactly the amount that I took before and actually caused an improvement from the day I started on it, but I suppose this is my body and not having the same effect, isn’t that surprising. I know when our internal bodies are upset, that it can have a huge impact on everything else, but for some reason, I don’t believe this would cause this feeling of struggling all the time.

I am not the kind of person who would normally huff and puff at having to do anything, but I feel as though almost every action has a prelude of maybe not an audible one, but at least an internal one. Everything from taking a drink, to having to go to the loo, is just too much effort. It’s not as though I have lost my enthusiasm for life, that is still very much here, this is a physical. Every action requires energy and it’s that energy that is missing, not the one that want to do it, but the one that has to do it. I know that this sounds somewhat iffy, but it is almost as though all these newly heightened and extensive sensations are draining the energy I have. Is it possible that nerve activity can make you tired? I know they can psychologically affect us, but can they also physically use up energy? Is it possible, that the fact my legs are numb right now, that that very numbness takes energy to create it, rather than just as I thought just a mixed us signal? Feeling worn down, is very different from feeling as though you have nothing left to give. I don’t feel as though I have the energy to get through today, I will, but it will be a series of struggled through hours, rather than a day.

What our bodies do to us is a mystery to even our doctors, I am totally sure if I were to place this in front of my Dr and say, “what do you think?” the answer would be, “It’s possible”. If there is one thing that they say more than anything else to me, it is “It’s possible”, what kind of an answer is that? I know what kind of an answer it is, it’s non-committal. It’s like everything else they say about PRMS, “Who knows?” it’s as sure as anything, they don’t. If there is one thing about this illness that annoys me more than anything else, it is all these unknown factors. I know for a fact, that I am in a tiny group, just 5% of MS sufferers. I also know for a fact, that not once have I been asked to trial any drug to see if it helps or not. All I have been told throughout is that this, or that new drug, won’t work for me. How many PRMS patients have they tried it on? Where have they found enough of us, to be sure? In the now nearly 4 years of being on Twitter, I have only found 3 others. Thousands with MS, but only 3 with PRMS, I just can’t see where they are all hiding. To me, before you can cure something, you have to know everything about that condition as there is to know. If there is a single question that they have to answer with “It’s possible”, then they don’t know enough. It doesn’t matter what you own chronic condition is, but if your specialist has to answer just once, “It’s possible”, then question everything. To be fair, I doubt there is a single condition out there, where that phrase isn’t used at least once to every patient. But that kind of confirms my conclusions, unless every single one of us, are part of any ongoing research, their research is flawed.

I believe, that almost every single one of us has been more than a little frustrated, by the fact that no one knows what causes our conditions and that there is no cure. In time, you see past that point and accept that it is just the way it is. To be honest, I got past that point with ease as what annoyed and frustrated me, was that no one could even give me a forecast of what my future would be. I still find it hard that they don’t know even from my current condition what will happen next. That to me just isn’t right. Being told that your condition is unpredictable, is frustrating enough, but add in that they can’t even give you a complete list of possible symptoms, that is agreed upon, is beyond a joke. I honestly believe that I know more, about PRMS than, every single one of the doctors I have ever seen. For a lot of us, it has become a case of not out doctors healing us, or even helping us, we have to do it all ourselves, which makes a total joke out of the medical profession. Don’t get me wrong, I have had some wonderful help and care over the years. But when it comes to my MS, other than eventually getting my pain under control, and tinkering around the edges. It has been a case of a diagnosis, followed by little else.

So once more I am faced with a pile of questions and no one to help me find the answers. As today, I am inside struggling just as I have been all week. There is still a smile on my face, but inside, I just want to give up, disappear into my bed and sleep until next week. That way, I might actually feel awake for more than half an hour.

Please read my blog from 2 years ago today – 05/12/2013 – Giving in is good 

I guess we all like to think that our lives are in our control, at least I always thought mine was but now I have at last admitted to myself that I am have absolutely no control left over mine. I know that sounds…..

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…..




Life in the dark

I had been lying in bed for no more than 15 minutes when I became aware of the tension in my neck and shoulders. I knew it had been there for a while, as it felt as solid as concrete. Normally I am good at stopping myself occasionally and just letting go of muscle strain, from tension, or just bad posture. I don’t remember when I discovered this trick, I feel as though I have been doing it forever, but it works and just making sure my muscles are as relaxed as possible, seems to reduce the spasms. Putting two and two together that stress makes everything worse add in the tightening muscles for other reasons, and it makes perfect sense. You would think that lying in bed, comfortable and locked off from the outside world would relax me automatically, but I still have to intervene every now and then. Normally as soon as I get into bed, I dropped my shoulders and pushing my hands downwards towards my feet. I then lay them on the mattress by my sides, so that they act like an anchor, preventing my shoulders from rising and tightening again before I am asleep. I suppose it wasn’t really surprising that my muscles needed to be stretched then relaxed throughout my body, it had been a fraught day.

I had spent most of it either in pain or waiting for the next round to start. That thought was an improvement from the day before, I was getting gaps between the severe pains rather than just one long stream of agony. The morning hadn’t been a great deal of fun, then suddenly around midday, I got my first signs that it was breaking slightly. The levels lowered and the constant chasing of pain around my insides, actually stopped for a while. It is so tempting to get over excited about changes like that, but I have learned they are not always good news. Which is where the danger of stress begins. You would think that the being in pain would be the stressful bit, but oddly, it rarely stresses me at all these days. It pisses me off, yes, big style, but stress, not really. The real difficulty when you are in constant pain is trying to not do what come naturally, tightening the muscles around it. That natural cringe and clench motion doesn’t actually do anything, other than invite or trigger more pain. Breathing through and relaxing into it is the correct action, but being human, I don’t always get it right.

I have noticed this before, but yesterday proved it to be true again. As pain starts to settle, I start to stress. I really don’t deal well with that middle phase, when you have true hope that the end is in sight. But you fear that it might throw you straight back any second into the middle of hell. I can deal with hell, purgatory is a far worse place to find yourself. When you are in heaven or hell, you know where you are, in between them, you can go anywhere without notice or warning. The constant background pain is still there, as are the residual aches from the worst point of torture, but there is a peace that you just dread being shattered. Over the next hours the peaks lessened and the levels of all other pain gradually settled. By the time I was in heading to bed for the night, pains required triggering by doing something stupid like moving. If I stayed reasonably still, so did it. It wasn’t actually until I stood up to go to bed that I noticed for the first time that almost every muscle in my legs were tight and difficult to use. It is something that often happens by the end of the day. I frequently find myself more waddling than walking by night time, last night there was an added stiffness, the further I walked the more I noticed that I had allowed my entire body to lock up. I was so relieved by the absence of severe pain but so worried about its return that I had totally ignored my normal routine relaxing sensations. I was carrying a whole day of stress.

I am still trying to find the answer to days like the last few. There has to be a way that when my body runs away with my life, that I can still maintain those things that I know are vital. I get so caught up in the pain and trying to deal with everything that is happening, that I forget to relax, I forget to take care of the small things. It is as though my entire cash of knowledge of how to survive day to day has holes punched in it or at times even deleted completely. My mind is so caught up trying to find answers that I simply get lost in the fog. All I can see and all I feel is what is happening in that second. The bigger picture just isn’t there. Yet I am almost positive that if I could make sure that if I just lived the life I do naturally now every day, it would reduce, if not break the entire thing. I know this is all part of my PRMS. Something triggers a flare or a phase like this and before I know it, every part of me including my brain isn’t working properly. When you lose your mind in a mess of pain, fog and desperation, you lose your ability to live. Worse case scenario, you lose your actual will to live.

I have lost count of the number of occasions where I have ended my day just lying in bed hoping that when I go to sleep, I won’t ever wake up again. It isn’t the pain of depression, it is the pure desperation of just wanting what you are going through to come to an end. For me, these spells are totally tied to my health. That desire appears and disappears exactly in line with the worst my health has thrown at me. I have lived through depression. I have planned over and over how I could kill myself over the years. I have even tried and clearly failed in that quest. All of it has been written about in the past, but this is a very different feeling and getting people to understand and see that is incredibly hard. It is also the reason that I understand the theory that we just need help to get through the worst and life will be good again and we won’t want to die. I get all of that, but I also know the day will come when the phase won’t end and I will be trapped there forever. I don’t believe that anyone would voluntarily want to be trapped there with me, so why should I be trapped there alone? I still believe that that point is a long way off for me, but I can see my future quite clearly. For now they are silent prayers, only thought of when it feels like I can’t take any more and not even sleep will be enough. The fact that it even appears in my mind though is wrong. Not in that I am wrong in feeling that way, but because it clearly shows that there is something wrong in my medical care that means I should ever feel that bad or that desperate.

Today, I have woken with my body more or less for now normal. The pain hasn’t gone. The tightness of my diaphragm hasn’t gone, but they are what I would call “normal”. It’s another word that just like “journey” I hate. What the hell is “normal”? I still don’t feel like myself, I have had to stop over and over again today, just to let my body settle. To mellow out just what being alive does to me. I fear thought that today may not be the end, I spent the first six months of this year, just like this. Up and down day by day, but never totally free of it. The difference today thought is not just the disappearance of the worst of the week, but I am alive, that feeling is back and I like it. I might still be in the dark as to why this all happened and not totally convinced that it’s over, but today, I’m living again.

Please read my blog from 2 years ago today – 20/08/2015 – So ill that madness appears

I feel so much better this morning, not like I could dance down the street or anything, just more what I suppose is normal. I really don’t know what was wrong yesterday, I felt terrible and really wanted……

Just waiting

I slept for two and half hours yesterday afternoon. Normally I will sleep about an hour less than that and it was clearly the alarm that woke me. I had gone to bed without finishing everything I had to do. I just didn’t have either the energy left or the ability to take the pain any longer. By the time I gave up, I don’t think that there was a single thing from my hips to my mouth that didn’t hurt. Even my arms were screaming at me by that point and I had had all that I could bear. I knew that I was going to sleep without any issues. I was totally exhausted and I hadn’t even made it through the first half of the day. Pain has to be one of the most draining things there is and when you can’t find relief, well the only good fact there is, is that sleep will eventually take over.

I had been pinning some hope on the fact that the pain lowest in my stomach meant there was a chance that I might just actually go to the loo and break some of the pressure. There was no luck there either. Yes, I did go, in fact, I went twice, but it didn’t produce any relief what so ever. I had in the morning been putting down the fact I felt so ill, to the pressure, pain and tiredness. By the late afternoon, I had begun to really wonder. Out of the blue, my temperature was spiking, sudden spells of feeling like I was totally frozen, but sweating at the same time. Yet again my skin was feeling like it was on fire but in the way it does on a cold winters day. After two days of not feeling well and suddenly I was showing something beyond just my normal nutty body. There is one thing that not even my body can manage and that it so truly fake a high temperature. Admittedly, it can fake aspects of it, but to get that bitter coldness whilst sweating is something I’ve only ever had when something else is at work. Whatever is wrong with me, it is centred on the one part of me that spends its entire time producing pain and most days absolutely nothing else.

I have thought many times that I have found the worst part of life with PRMS, but this attack on my internal processes, of processing food and breathing, really is the list, leader. No matter how bad, anyone can live with spasms, I’ve been doing on and off for most of my life. When my MS changed and I was eventually diagnosed with PRMS, I thought then I knew what living with pain was. That assessment has gone up and up every year. Just over two years ago, this new phase began. I don’t think that since then I have had a single day without either or both diaphragm and stomach pain. Like everyone, I thought I knew how much pain a stomach can produce, I was wrong. It too has gone up and up but far faster than any other pain that I live with. Even the pain I was in from January through to June didn’t manage the highs of the last 24 hours. So OK, I am 90% sure that something is aggravating it, but that doesn’t change anything, it just means I have another way of feeling rotten. Through out the evening it just kept getting worse. Sitting was something I couldn’t manage to do in one position for even one full minute and the pain had made it all the way to my feet. Just placing them on the floor was wrong and there was no way that my legs muscles would stretch so I could put them up on the stool. All the sort of things I had expected when I was diagnosed, pain everywhere in muscles you knowingly use. I never once thought years ago about the possibility of my PRMS being involved in anything internal. I know now that was naive, but if no one gives you the heads up, you just don’t imagine these things. Yes, I knew that it meant spasm, nerve pain, nerve death and all the other joys, but I never put those first three together to make something that could stop you processing food and breathing. Funnily enough they are rather vital and unavoidable things we have to do. How do you deal with a disease that is clearly out to kill you? Yet no one can see it unless you are screaming. Medication can’t do more than slightly calm it and no one has the slightest idea of how to cure it.

Everything around my body today is still reacting to whatever the trigger was. Yesterday afternoon I had to stop my work here at the PC, not just because of the pain in my stomach, but due to my left arm. It had got to the point that just moving one finger was beyond it. There was a tension within it that I know all too well. It is almost as though it has its own energy supply and although the rest of me was still running, my left arm was drained. My hand is still filled with mad sensations, from slow speed tingling to cramps, all centred on the middle finger out to my thumb. If I let it rest for too long, it starts to go what I can only call painfully numb. Nerves are like that, it isn’t until you have an illness of them that you discover their ability to produce two totally opposite sensations at the same time. Personally, I would prefer it if someone could just switch off all their ability to produce any sensation of any sort what so ever. I know that would produce other problems. Ones I probably couldn’t even imagine, but it would be nice, even for a short while.

Today isn’t going to be a good day. Somehow knowing that isn’t quite as daunting as it was yesterday. There isn’t a single symptom of yesterday that isn’t with me today, but I have a far more accepting mental attitude to it. I have heard so much rubbish over the years about fighting illness and it is totally rubbish. It might seem to work when you are talking about a minor illness. But you can’t spend every single day of your life at war with yourself. I don’t have cancer or a virus, something you can do those nice neat systems found in self-help books on. There isn’t an enemy to visualise, other than the one I see in the mirror. You can’t fight your own autoimmune system, you have to learn to work with it and ultimately let it do whatever it will. I was lucky as I learned that one early. Spend your day fighting and pushing yourself to do all that you think you should, achieves nothing. You might have a lovely clean house, but you will have a body in bits and more pain than you know what to do with, and that will last for days, not hours. I pushed myself yesterday beyond the point I should have. I should have been in bed long before 1 pm and I shouldn’t have set the alarm. I did and I paid for it all yesterday evening with pain that even my Morphine boosters didn’t touch. It’s no fun lying in bed wondering how much more you can take without calling an ambulance. Probably in reality a question that I am a long way from being able to answer. As no matter how many times I have thought it couldn’t get worse and I can’t take any more, both have actually happened.

Today I am accepting, I am ready for whatever it wants to throw at me and hoping that the truth is it throws very little. Life stopped being fair a long time ago and I am not the sort of person who is going to complain too loudly, as that is another thing that gets you know where. Like every other day, I will ready my smile for when it is needed and I will move forwards slowly dodging when possible all the bullets I know that are waiting for me and treating all the ones that hit home.

Please read my blog from 2 years ago – 19/08/2013 – Bad day, bad feelings

I seem to have inherited a sieve overnight in place of what I already jokingly called a brain, even writing is taking longer as if I don’t type quickly I lose not just the end, I completely lose all direction. So this could be an interesting post for me today if not for you, mind you it could turn out more interesting, as who knows what will come next, or how much piecing together……

Food doesn’t help

Yesterday spiralled downward from when I stopped writing. It was a day that found me trying to deal with my discomfort and pain by eating. I know that is counterintuitive, especially when an over full intestine causes me pain, but I had the drive to eat and I did. I guess it was some kind of comfort eating really, but unlike comfort eating, it isn’t about foods I love, it’s just about food. I guess we all turn to food in the hope it will make us feel better, but it rarely does. I chomped my way through two bowls of Granola, plus two odd tiny amounts of different ones that I snuck in later in the day. I ate about double the amount of nuts I normally would and then still popped the odd extra handful into my mouth while fetching myself something to drink. Food appeared and was eaten. For no other reason other than I knew it was there. Not too surprisingly, it didn’t make me feel any better and by the evening, my diaphragm was 10 times worse than it had been in the morning.

You may have picked up from that my latest faddy diet. I seem to be totally fixed on Granola and nuts just now. Apart from the odd bowl of noodles or some yoghurt and of course, my Psyllium pancakes, they have been my only food for the last month or so. On average, I get fixed on a couple of foods and eat nothing else for about six months at a time. Even though the house is full of loads of other foods, even when I am comfort eating, I still go for those that are in vogue. It is so part of my life, that now I have reached the grand old age of 53, I doubt I will ever change. Oddly, it is partly down to my health that I now have the freedom to eat this way. Other than a period in the 90’s when I had no one else to feed but myself, my food has been governed by others. Proper meals had to cooked and shared and that meant so called normal foods and eating patterns. I discovered a long time ago that my health doesn’t allow me to eat late in the day. I try hard not to eat past 5 pm if I can. Adam doesn’t like to eat until after 7 pm, so our meals are now totally separate. We each cater for ourselves and that means we both get to eat whatever we want. Freedom for my fads again and a freedom I totally love. No matter how much I love it, I can see that it might turn into a huge issue when I am no longer sorting out my own food. I can’t see a nutritionist ever giving my choices of the same thing day in day out for months the green light. And none of my fads has ever ticked all the nutrition boxes.

I never thought about food at all really until I found myself unable to eat quantities. Slowly over many months, I found eating more than a small amount at a time was making me feel ill. Something that is still the norm. If you read back through my blog you will find that I talk often about having a gastric tube. That was how bad it got. For three years, my food was supplied drip by drip over the course of a day. Even speeding the flow up caused me to be ill. When you can’t eat, oddly just like being housebound now means that I don’t miss the outside world any longer, I stopped even thinking about food and had no desire to eat at all. I literally had to wean myself off the tube and back onto food. My food intake may not be the best, but it is more about what I can eat in a day, rather than what I should eat in a day. There is no way that I could manage to eat the physical quantities of what would be classed a normal person food. Out of interest the other day I decided to measure my normal daily food. Since I started eating granola for breakfast several weeks ago, I used a ramekin to measure it out. I took this as my standard measure and it appears that I eat around 4 ramekins a day of solid food, that around 24 fluid oz in volume. Most people would have that in one evening meal, but however you look at it, I consume almost nothing. Clearly, no matter how little, or how badly wrong on the nutrition scale, it’s enough to keep me alive.

I don’t know why but when the nerves in my intestine started to die off, it didn’t come as a surprise. I have known that getting food into me was an issue, getting it out of me joining in as well, well it felt normal. I don’t need to understand all the reason behind why my body does what it does. All I ever want it to know if it will remain this way or if it can be fixed. More and more the answers come back that it will stay this way or get worse. I ate too much yesterday. I did what my body wanted and ate and ate. Today, my body is screaming back at me “Why did you do that?” I felt bad yesterday, today I feel worse and I can’t help feeling it is all my own fault.

I lay in bed last night, unable to go to sleep as I was in pain from my diaphragm and my breathing was a mess. The whole afternoon and evening had been dominated by the feeling of pressure inside me. I knew the pressure, it was the one that nearly drove me nuts in January. Just as tight as my diaphragm was, so was almost my entire lower torso. Trust me it is a miserable feeling and one that wears you down minute by minute. Lying in bed was only making it worse. I was lying there feeling the pain of every breath as it pushed my aching ribs into the mattress. It was the first time that I had ever been that clearly aware of not just the pain in the back of my diaphragm, but every movement it made. No matter how shallow my breathing, there it was pushing painfully in my back. I lay there cursing every extra mouthful I had eaten and it’s added pressure inside me, it was the only reason I could find for the fact I could feel something so strange. Last night was the first time that I have ever been forced out of bed by my back. I got up less than two hours after lying down to take a booster pill, I had no choice. It might have had nothing to do with the food, but I could see how easily a connection could be made and a reason not to eat could appear. Almost as soon as the pain subsided, I found sleep, a sleep I hoped would fix the whole mess. It was a wish too far.

I many not be lying in bed, but every single bit of what I felt last night is here with me right now. If anything, I feel worse. The fact that this has taken over 2 hours to write is partial proof of that. Everything feels wrong. I can see with ease that once I have eventually completed my online activity for today, that bed is exactly where I am heading. Maybe tomorrow will be better.

Please read my blog from 2 years ago – 18/08/2013 – Growing weakness

It’s strange how you can let go of things that many say they could never forgive, but then find your stuck, going round in circles unable to even think the smallest word of forgiveness. I suppose it’s because forgiveness is a two…..