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…….