Different sides

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…….

Remind me, what are lungs for?

I had a bad night. Most of it was spent in a shallow sleep. Constantly been broken by the pain in both my stomach and my chest. I knew what was wrong, but there was nothing I could do, I just had to wait until my body, was ready for me to go to the loo. I had been uncomfortable all yesterday, so I knew it was on its way, what I am hopeful might be the last of these excessively painful episodes. If I have worked it out correctly, this is the last of the large bulks of psyllium, from here on in, it should be the moved by my two half doses, taken at different ends of each day’s food. My intestine had been niggling at me since last went to the loo three days ago, so the timing was right. I gave up on sleep just after 7 am, two hours later, at last, I found relief. Everything my consultant told me 18 months ago was true. Psyllium is, without a doubt, the substance to keep things moving, but it would do nothing to help reduce the pain. I am sure that he patted himself on the back when I left his office, and I admit, I was patting his back as well. Wrongly, I thought that having everything moving, had to help with the pain, it had too, it was only logical. I quite honestly didn’t believe that it was just going to continue and at times be even worse. I guess, though, that when the nerves that control everything starts to die, the strain put on the remain ones, is always going to be painful.

I had hoped that once that was cleared, that my lungs would ease as well. Normally, they react badly to the pressure that appears across the top of my abdomen, so I always accept there will be pain and problems at times with getting air. My diaphragm starts throwing spasms and extra tight MS hugs appear. They quite often burn and my oxygen levels plummet. Last night, several times when I woke, I wasn’t quite sure exactly what it was that roused me. The pain in my stomach was bad, my breathing was tight and difficult, and just for a change, I was also having palpitations and sweating. Why do I never just have one thing, a single thing that I can say “Yes, this is it”?

For years now, I have been personally blaming my guts for triggering everything that is wrong with my lungs. Admittedly, there were occasions when my stomach would seem quiet, and my lungs were going mad, but this last month, they haven’t given me any peace at all. Right now, despite the fact there is no pressure at all coming from my stomach, my lungs are more than unhappy. I have known now for a few weeks that my lungs are worse off, than I have not only not been admitted in here, but also to myself. I even went as far as not bothering to use my oxygen level monitor, because I didn’t like what it was telling me. I was used to living with just 93%, but when it frequently appeared in the high 80’s, I didn’t want to know. If that’s not burying my head in the sand, I don’t know what is. I have only been telling half the story, yes, I have been tired, I’ve been battling with pain in different places, slowing down and not being able to do as much as I once did, but the one thing that could be playing a part in it all, I ignored. I ignored it, because, like everything else in my life, I can’t do anything about it. I’ve already been told it is probably the thing that will kill me, but outside taking the tablets, using the inhalers and using my nebulizer, I or the doctors can do nothing about it.

The last time I saw my chest consultant, at the end of our consultations he asked me when I would like to come back. I said “About six months from now”, he said, “let’s make it four”. I guess he knew something I didn’t, that things were moving faster than I thought. I can’t remember the exact date, but I know that it’s at the beginning of March and for once, I actually have something to say to them. Yet, I am sure I know exactly how the consultation will go. I will tell them how things are, he will send me through to the nurses, who will run a couple of tests, he’ll look at the results, up the dosage of whatever thing he thinks will help my lungs to cope better, when being crushed, then he’ll smile nod his head and send me home, for another two or four months. It doesn’t matter which part of my body it is, that is what all consultants ever do for me, because, it’s all they can ever do, for most of us.

The predictability of Hospital appointments is one of the biggest symptoms of chronic illness that I know. The longer you’re ill, the more you start to spot the similarities, the mundane relationship between each of them. I have come to the conclusion that they are all taught that knowing nod, that feigned look of interest combined with great knowledge, followed by the reassuring murmuring of caring, but predictable parroting. It doesn’t matter what their speciality is, when they are dealing with someone that they know they can’t cure, can’t even really help, they all fall into the same routine. I have even found myself becoming more and more lost as to why they ask us to even come back. Surely, it would be easier on us all, if, they just wrote up a set of prescriptions, that tweaked the drug regime every few months, rather than making us go back and forward, over and over. The only problem with that is, that they wouldn’t get paid for having a full list, always up to date and always appearing fully required.

Neither they nor I can change what is happening. The only good thing about seeing them is that they help me track the progress of this damn illness. Occasionally, they give something away, just a clue as to how you really are, and what they really expect to happen next. But still, the biggest clue of all is the time to the next appointment. If it’s a year, you’re doing well, even six months isn’t that bad, less and you can start to worry, or start preparing yourself for what is coming. Right now, I am tired and if I stop writing now, I will have time for a much-needed nap. You see, it doesn’t matter what’s happening, something, just have to stay the same.


Please read my blog from 2 years ago today – 13/02/2014 – Why are you following?

I managed to free my pinky on my right-hand last night of the two rings that I thought would have to be cut off! I guess the reduction in fluid did help a bit, but add in the booster pill I took and I was able to just pull……




The heart of a spasm

Just before I went to bed last night I was gripped by extreme pain, pain that I had to cover up as I knew without doubt that Adam would be on the phone getting me an ambulance that I was totally sure I didn’t need. The pain in my chest that I haven’t now had for several weeks was back and it was as bad as ever, because I have had it several times before I knew I wasn’t having a heart attack, but I was having problems because of it in taking a deep breath, I wanted to cough for some reason but because I couldn’t fill my lungs I couldn’t. It didn’t last long maybe 2 or 3 minutes and started to clear just after the end of ‘Holby City’, I sat for a couple of more minutes, then headed to bed. Not long after I lay down it happened again, truly acute pain in the middle of my chest, first spreading up into my armpit and through to my back and my entire left lung cavity. I couldn’t really tell, anymore than I have been able to in the past, if it was actually the intercostal muscles, my lungs or something else, but I am sure it isn’t anything to do with my heart, which I know would have been Adams worry and I knew if I told him before I went to bed he would have been awake all night worrying, so I had said nothing. Over the years I have become very good at not reacting on the surface as I know how much he worries. I wouldn’t have believed how much pain I can take without a word, just a few years ago I would have been like anyone else, I would have put my hand to my chest and at the very least winced in distress. Now I don’t let anything show, Adam worrying and fussing would have change nothing about what was happening. I know he will read this and be angry I disguised what was wrong and simply took it in silence, but I hope he understand now and sees that I was right, there was nothing to worry about.

I am guessing that it is some sort of spasm as it is sudden, an incredibly sharp but crushing pain that tenses, holds and then sudden release, just as spasms do. Sometimes it covers both sides of my chest not just the left side and often it goes up into throat and shoulder bones, leaving behind the shadow of the pain for hours after. This morning when I was making breakfast it happened again, but this time the worst area was much higher, almost as though it was some type of heartburn, but only because of where it was, there was no burning or feeling of acid reflux at all. When it is high like that I can break it’s hold, all I have to do is swallow a mouth full of something, the swallowing action makes it let go. Right now the upper half of my body is totally in the shadow state, everything has a light pain or bruised feeling, but as long as I keep my breathing shallow and I am just sit here, I am fine, moving around aggravates the pain as any bruise would react. The pain is identical to the pain I get in my guts, identical in pain levels as the spasm on both side below my ribs the other week, the only difference is that this doesn’t last nearly as long. My guts can lock up for 20 to 30 minute, let go and return several times in a few hours, so far this hasn’t done that and the worst level of pain last no more than 2 or 3 minutes, taking longer to fade once it has let go. It hadn’t occurred to me until last night that they may be connected, well the two areas have very different functions. For now all I can do is monitor what is happening and wait to see what happens next, but I guess this is something more to tell the consultant, although she is a Gastroenterologist Consultant, with the similarities it may explain what is going on at least with the sharp spasms, if not the pressure and discomfort.

I suspect I am far from the only person who has learned to cover up what is happening to them, not to deceive, but to protect those we love. Adam knows that I don’t tell him everything, or about any of my falls unless I have to, but it isn’t that I don’t want him to know it is that I don’t want him to worry any more. I know how much he worries about everything and if I were to go into details of everything when they are happening, he would panic a lot. Since he started reading my blog he has learned much more than he ever knew before, the difference is though that by the time he has read it, it is over and I am clearly still alive and functioning, all without him stressing once.