Tag Archives: MS hug

Different sides

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To my Neurologist, I am having “MS Hugs”, to my Respiratory Consultant, I am in danger of dying at any minute. Which in anyone’s book, are vastly different descriptions. I don’t know who named it as such, but I long ago was left with just this growing desire to find the person who named it as an “MS hug” and slap them. A “hug”, is something so special that it doesn’t matter who gives us one, it has a healing effect. An “MS Hug” is anything but healing. The first time I had one I hadn’t actually come across the phrase, all I knew was that I suddenly felt as though I had a vice tightening around my chest. Eight years on, for me it has become the most dangerous of the plethora of symptoms attached to my health.

Regardless what form of MS you have, all of them can produce a “hug”. In reality, I suspect that anyone alive could actually experience the mildest version. If you aren’t that fit and suddenly decide to run, well that pain between your ribs, the one that stops you from moving, that is a mini hug. In its most basic form is a quite simply, a spasm in the muscles between your ribs, the intercostal muscles, which does mean you can have a single sided hug. When put in those terms, it doesn’t sound like much, but what few of the descriptions I have come across don’t tell you, is an “MS hug” can appear in any part of your torso and it can also be of unbelievable strength. As you might have guessed, today is a day when I am being troubled by my version of an “MS Hug”.

Long term readers already know that one of my other conditions is COPD. I actually have Emphysema, but on the good side, it is more than livable for someone who does nothing. I don’t exactly go mountain climbing or run up and downstairs all the time. I, unfortunately, have a double whammy, my PRMS decided to get in on the game. If you think about it, the whole process of breathing is controlled by muscles and every muscle is controlled by nerves. If you look at one of those pictures of a human without skin, you will see with ease that there are a lot more muscles involved other than the intercostals, when it comes to breathing. Every single one of those muscles is now causing me problems when it comes to breathing. The biggest and most important is the diaphragm, this muscle is causing me problems almost every hour of every day. It is rare now for me to be without an abnormal tightening, a feeling as though it has been wound tight and can’t operate normally. Add in spasm in my intercostals, and more dramatically the large plate muscles that cover both the internal and external of my ribcage, and breathing can get really difficult. As I said earlier, “hugs” can appear not just around your chest, a few months ago, I started to feel them much higher up, just below where my neck joins my chest.

I felt it was important to give a fuller description of what is happening to me, and how my PRMS is causing problems. As I said in my opening sentence, the two consultants involved would look at what is happening in two very different ways. I’m not aware of others ways this can occur, but as most people, I know about what is happening to me, not in detail to the million other people out there. It does, though, highlight just how easily one condition can cause problems, which mean we have to have it looked at by a completely different set of specialists. I put up with the “hugs” for years, simply because I saw them a problem caused by my PRMS, therefore, no one could help me. I was right and wrong at the same time. Neither set can stop the “hugs” doing what they do, but the Respiratory Consultant, have me on a range of medications that are keeping my actual lungs, in as good a condition as possible. I have written before about the inhalers, the nebulizers and so on which I take daily to keep my airways as open as possible, so when I do get a full on attack, so far, I have been able to breathe well enough to stay alive. I do have to add here, that so far, I have only ever had a handful of attacks that I have found myself feeling as though I might be in real trouble, but I’m still here. My biggest fear and I know the doctors biggest fear, is that they all choose to lock up at the same time, that could with ease, be lights out.

I was lucky, I had had mild asthma all my life, so when I told my GP that my breathing was getting more difficult, he put two and two together and luckily came up with ten. Mind you, I didn’t once mention that at the same time, I was getting horrendous “MS Hugs”, other than the ones in my diaphragm. It clearly wasn’t my Asthma, it was quite clearly my PRMS. Things though could have been very very different, if I’d just been referred back to my Neurologist. The longer you live with an illness, the more we are inclined to just brush things aside. We get into the habit of blaming whatever is our main condition for everything. We also dismiss the possibility that there could be anything else involved, or that anyone other than our personal pet consultant, could possibly help. Surely, if it is my PRMS at the root of the problem, then I should go and see the Neurologist, shouldn’t I? Not always, sometimes, the people we need help from, are the people who actually specialise in the result, not in the cause.

I have had my eyes opened to that fact. I hope, that what is happening to me, opens the eyes of those who read this. I don’t think it matters what our core illness is, or what we think we know, sometimes, we just need to ignore all of it, and put our trust in a whole new set of possibilities.

 

Please read my blog from 2 years ago today – 11/04/2014 – Learned reactions

I really am wishing today that there was a shop where I could buy myself a replacement foot, to be precise a left foot. When I started finding myself sitting with only the balls of my feet on the floor, I thought that the only problem I had ahead of me was the shorting or my calf muscles, but now I know differently. I am getting more and more pain in my ankles the worst is my left one, I can only think that this constant position of wearing a really high heeled shoe, but without the shoe, of course, is straining and also ceasing up my ankle joint. Even when I am sitting with my foot off the floor, or even lying down, I keep finding my foot in exactly the same position, part of the result…….

I can dream

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I woke this morning with pain off the scale in my back and my upper legs. I know that it’s going to take a few days, by yesterday I made a decision to try and relieve whatever is going on inside me. I was forced into upping the dose of Psyllium as the quantity I have been taking for the last couple of years, just wasn’t working. Years ago, I was told that I had IBS, because, I was complaining about the pain, but following tests at the hospital, it turned out that I don’t. The consultant said he could understand the first diagnosis, as, many people these days think that that is what they have. In my case, it is yet another thing that is down to my PRMS. All forms of MS can cause problems with nerves where ever they are. Mine have caused all the muscles responsible for the transit of food, to simply not have the strength to do the job properly. My problem wasn’t due to lack of fiber either, as the bulk of everything I eat, is high on the fiber scale. It would make no difference what was in my diet, I was always going to have problems. He suggested the Psyllium, something he actually says everyone should have daily and forget “the rubbish of the 5 a day, the government promotes” his words, not mine, as it is far more effective. It does two things, firstly, it is a bulker. I may eat well, but I don’t eat a lot, the Psyllium would make up for that problem and create the bulk needed to help move everything through me. Secondly, it has a slimy quality, the reason I make it into pancakes, drinking it, is impossible, I don’t care what anyone says. The new dose did the trick when it came to getting things moving again, but the pain has been ridiculous.

I have come to the conclusion, that the double dose, is forming a huge bulked up lump, that my muscles are finding just too difficult to shift. They’re doing it, but slowly and with a lot of complaining. Yesterday, I took my huge pancake and cut it in halves, to be eaten morning and late afternoon. With my ultra slow transit, it means that I have several days worth to still get rid of, hence the pain. Being overloaded, put pressure on my spine and all my internal organs, including my lungs. From where the worst of the pain was, I knew that it was probably going to be another 48 hrs before I would next go to the loo, and I just couldn’t bear that. Taking a laxative, would do only one thing to me, cause hour after hour of increased spasms that might, but usually, don’t help at all. Once more, I had no choice but to try a suppository. As much as I don’t like them, they are far more controlled and act far faster. Yes, they cause more spasms, I do realise that, but at worst, the spasms they cause will last no more than an hour. It took 25 minutes, and it caused me some huge spikes in pain, but it worked. Now, at least, I have some hope that I have created space for the rest to move on. About an hour ago, I gave up and took one of my Morphine boosters so I’m not perfect, but neither am I still cringing every few seconds. At best, I expect this to settle over the next 4 days, at worst, it could take a week. It’s one of the oddities of my life, that just having a backed up intestine, that I can do nothing about, it means I have problems standing, lying down and breathing.

It took me months to get my head around the whole thing, as when it first went off the scale, a couple of years ago now, I honestly thought I was dying. Of all the things my PRMS does to me, it honestly is one of the things that I find the hardest to deal with. Between the so-called “MS Hug”, spasms in my diaphragm being made worse due to the pressure from below, and the restricted space caused by that pressure, meaning less space for much-needed air to fill, death seemed to be the next logical step. Apparently, it’s a 50/50 split, as to whether it will be my COPD or my PRMS that will squeeze that last breath out of me. Trust me, I would love to have straight forward IBS or constipation any day. Over the last couple of months, I have been having growing problems, hence, my desition to double the dose. I did last month add in half as much again from the original dose, but it did little to nothing. Sometimes it feels as though my life has become one long experiment. I get one thing sorted out, and something else falls apart, and I am back trying to find what I need to do, just to be comfortable enough to go on. I suppose that is one of the reasons that our doctors fail totally when it comes to helping us to live. How do you treating something that is never totally the same, from one day to the next?

When it gets me as badly as it has at the moment, I spend a lot of my day just checking my oxygen levels. It is one of those things that is easy to know when it’s wrong, but hard to treat. I have all the normal inhalers which, at times, I grab and use, but most of the time, they do nothing. As yet, they haven’t invented an inhaler that deals with spasms. At best, they help with the COPD side of things, but if it’s not my COPD causing the worst of it, all I can do is keep watching those numbers fall. I know that the doctors are simply trying to give me a fighting chance, with all the drugs that I take for my lungs. If they are as good as they can make them, will maybe, just maybe, I can keep breathing. I knew on my second visit to the chest clinic that they were a bit lost as to how to help me, and that other than the consultant, not one of them had seen anyone like me before. They are used to dealing with lung conditions, my problem is the mechanical system, not the lungs themselves. If they were in a normal body, well yes, they’re not the best, but they’re a long way from done.

I have had this dream now for years, that something new will appear and that after they have done all their horrid tests, that they will turn around and say, “Well this is really simple, one little operation and it’ll be fixed”. Mind you, I doubt there is a surgeon out there, who would want to operate on someone like me, but I guess, I can always dream.

 

Please read my blog from 2 years ago today – 07/02/2014 – Protection through love

I’ve been reading snippets from previous posts and my feeling that my ribs and diaphragm are playing up more seems to be true, not that that helps really in making them better, but it makes me feel better, as I KNOW I am……

 

 

 

 

 

Joining the dots

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

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

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

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

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

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

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

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

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

Tied into hell

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Things aren’t good. I thought I felt it on Saturday, just that edge that I was slipping into somewhere I didn’t want to go. I spent the morning with the fire on, I was so cold, it didn’t matter which room it was, I was cold. But on Saturday, that passed yesterday it didn’t. It was on both thought that same cold, the one that has eaten inside you, but can flip in a second to you feeling the sweat building and needing to escape it. On neither day could I put my finger on anything, I just didn’t feel right on Saturday and by Sunday, I truly felt as though my energy and my spark for life had been stolen. Somehow there was nothing there apart from a desperate desire to sleep and to escape the ever increasing pain. I have a nap every day nearly always setting the alarm for two hours but sleeping only one. On both days, the alarm woke me and I came out of a sleep that I didn’t really want to leave. When I got up yesterday, the number of things that felt wrong were growing. Pain levels were rising and the desire to not do anything was so strong that I didn’t even manage to sit at my PC until my normal 6:30, by 5 pm I was desperate to escape it. I changed the TV program, closed everything down here and moved to the settee and started almost straight away to yawn. Nothing felt right. nothing felt normal and I still couldn’t put my finger on anything.

It had just gone 6:30 when I started to feel my mind slipping. I have been there several times before and it’s a really hard place to explain. It’s almost as though I am fighting to stay in the here and now as my mind is telling me I don’t really belong here, I belong anywhere else in time it chooses but not here. Not being mad, I know this is wrong and I know it is some kind of hallucination, one that when I am awake I can fight, but at times in the past it has scared the hell out of me. I have tried desperately to understand it and it wasn’t until I had my COPD exacerbation that I worked it out. When I was at my worst I know without a doubt that the levels of oxygen getting to my brain was too low. I frequently found that I was making no sense, to the point if you go back to the posts I wrote at the time, that I defy anyone in making sense of all of them, as I can’t even do that. I also found myself living in a half world of being everywhere else other than here and each was as real as the next. Last night I was on the edge of one, looking in, feeling the pull and pushing it away but talking, changing position or anything that meant I was in control. My breathing wasn’t great. My diaphragm and three sets of intercostal ribs were in spasm and weren’t letting go. The intercostals were so tight that my normal position of hunching forward where it is easier to breath was more than painful. There was no relief, no comfortable position and I had taken my permitted Morphine booster with little relief, if any. You would have to have been blind not to see the pain I was in and knew that Adam wasn’t just concerned but felt useless. He offered over and over again to do whatever I wanted him to, to help, but there was nothing he could do, no even anything I could do. At one point, I was so cold, so terribly cold, that I had to ask him to put the fire on for a while. It’s Summer here, but it felt like the middle of winter.

Bedtime should have been the end of it, I should have vanished into sleep and woken this morning, but I woke at midnight. I was sweating and terrified, I couldn’t work out what was scaring me so much, but whatever it was, I had escaped it. As I moved the covers off me so that I could get up, I instantly felt my skin turn to fire as the cold air touched it, just as it did when I took my dressing gown off before I went to bed. It’s a sensation that I know all too well. Not only is it on fire, but it feels almost like someone is slicing it off me in strips using a blade made of ice. I quickly dressed and headed to the kitchen, after taking a small detour to the loo. I was desperate for a cigarette. I haven’t felt such a demanding need for nicotine for a while, it’s something miles above just wanting a cigarette, it’s the kind of craving where you feel you could kill anyone who tries to get in your way. Not that I would, but you know what I mean. By the time I was sitting drawing in my much-needed calmer, I knew exactly what I had seen or imagined and had scared me so much. I saw it again as I put on my dressing gown but dismissed it. Sitting quietly in the kitchen I had no doubt that I had just failed to save the life of someone who had slipped from my hands into the middle of a frozen sea. Every time I closed my eyes they were vividly alive and there just in front of me, screaming for my help, then gone under the waves. It was all still there in front of me when I checked the alarm and saw that it was 3 am. My whole night was destroyed by it, right through to 8 am when I woke reaching out into the room trying once more to pull them somehow back on board but failing. I got up.

I know that all of it could be just one of those things, or it could be a the peak in my Morphine causing vivid dreams, but dreams aren’t there when your eyes are wide open, as they were when I woke and I could still see them as I did over and over last night. I could smell the ocean, the diesel and a sweet acetone smell that seemed stuck in the back of my throat. Nor was I dreaming when I got out of bed, with the fear and sensation that I was stepping off the edge of the ship, whilst telling myself that reality was when I touched the floor, just as I did. Dream or hallucination, I don’t think I am qualified to say, but either way, I hate them. When something feels and looks that real, it’s the last place you want to be. It may have nothing to do with the way I feel, or my spikes in temperature, but they feel connected as they appeared together, along with feeling generally unwell. Something is wrong, again. If I had never been here before, I would like the first two times it happened be completely terrified for my sanity. I’m not, well at least not yet. There is a clear connection between these real waking dreams to not feeling well. Not once have they appeared without it. They also always are linked to raised levels of pain in my chest, be it front or back, just my intercostal and diaphragm, or floods of water that I choke on, or congested so badly I wheeze. I am not cold right now, but I don’t feel well, but on the good side, I am quite firmly in the here and now.

Every time this has happened I have been left with one thing I just can’t answer. Do I tell my doctor or not? No one wants to appear stupid or to want to be diagnosed with some sort of mental health issue. How do you say to your doctor, “I’m calling because I have once more been living in World War Two or I just spent the day in a Medieval castle?” Maybe it’s not so much my saying it as what he might say in response, that I fear, or maybe I fear them both. Logic tells me that this and COPD could be connected. I don’t have the proof, but it makes sense that lack of oxygen could easily be the source of what I saw and felt. Why can’t my brain choose something more relaxing, like lying in the sun by a stream on a summers day? Rather than being abused by a barrage of chefs in hot sweaty castle kitchen or worse still being hunted by U-boats at night. It was just one more night and part of a day, spent fighting between reality and what, I just don’t know.

My lungs are already locking up and I still don’t feel right, but at last in the past two hours my mind has been mine. Every minute of distance between there and now, makes me question if I should even have written this. Is it real enough to be noted, or should I just have put it down as an aberration. When I started writing this blog, I made a decision that no matter what it was that happened it had to written. No matter how disgusting or painful, the words had to be here in case someone out there is searching to see if they are not alone. Well, I have always stuck to it, what you make of it is up to you.

Please read my post from 2 years ago – 03/08/2013 – Assessing the milestone

TARA!!!! I have made! At last the magical sum of £60 which means at last Google will be paying my earnings from the Ad on my blogs into my bank account! This is the final proof that Advertising doesn’t pay

https://livinginalimitedworld.com/2013/08/03/assessing-the-millstones-16286644/

A gap in the fog

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

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

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

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

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

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

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

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