I really thought that I had broken through the spell of not being able to eat, I had made it right through the weekend without missing a meal or not finishing it, then yesterday morning I ate barely half and today, I can’t even face making it. The good news though is that it has confirmed just what I thought, it is the spasm in my diaphragm and guts that are stopping me. It wasn’t that I have been spasm free, far from it, they had just reduced in their intensity, which I believe proves my theory that the locking of my diaphragm is restricting firstly if I can eat and secondly putting pressure onto my stomach with the result that I then feel sick. Proving my theory is only the first step, the next is what do I do about it, as clearly I need to eat just like everyone else, plus today and on many other mornings as well, I am feeling sick just from taking my morning meds. The fact that I still have on tablet stuck in my throat just below my voice box and my guts are throwing spasm so bad that my entire body starts shaking and sweat is pouring out of me, isn’t helping much either.
I can’t even sit when they are at their worst like that and I couldn’t type to save my life, so then I have to stand and try and let the fact my body is stretched to deal with what ever is going on inside of me. I wondered through to the bathroom when they were at their worst, why I am not totally sure, as other than the fact they are in my gut, I honestly don’t feel like I am going to go to the loo, well not any time soon. I stood for a few seconds at the sink and was shocked at just how white I had gone, I am normally rather pale, but honestly I was white, all and any colour that was usually there had totally gone, add in the sweat and boy did I look ill. When I start pouring with sweat like that due to spasms the instinct is to start shedding layers of clothing, but the house is actually really cold, so my skin starts burning as it doesn’t want to be uncovered, even if my body is tell me to.
In the past hour this has now happened 4 times and to be honest at one point I was very close to screaming for help, but who and what for? I am an PRMS patient, I get spasm, I get really bad spasms just like I am getting this morning, what could anyone do for me? Nothing! I woke up at 5 am this morning totally drenched in sweat and at the time I could find no reason for it, I had woken suddenly but when this all began this morning I knew instantly what the problem must have been last night, but the spasm must have been a sudden sharp burst, gone when I woke. Which is actually exactly what the first two spasms this morning were like, sudden, sharp and startling. I have only been up for less than three hours and I am already shattered, there is nothing like pain for stealing all your energy and it isn’t being helped by the fact I let myself get so cold, the cold always makes me want to sleep.
I may have been ill for most of my life and now lived with PRMS in full flight for the past 13 years, but I never know what to do when things get like this. It isn’t just that it comes out of the blue, that is one of the things that goes with the turf, but it is the constant clatter of questions in my mind, starting with “You know it will pass, do you really need help?”, then “How long do I let this go on for, before I have to call for help?” They have to be the hardest questions to answer, as no one wants to look like an idiot calling for help for no reason at all, or in today’s case, for one that is nothing more than trapped wind. No one want to look like a complete idiot or waste other peoples time for absolutely nothing. When a spasm is in a major muscle, like my legs or even arms, it is easier to know that there is nothing anyone can do to help, but when it is in my gut like today, or the more common ribs, diaphragm and lungs, the answer is anything but easy. It becomes a new range of questions, starting with “Is this my PRMS or is it something else”, how am I supposed to answer that one, I can’t see inside me, I could quite easily at this second have a compacted intestine that is getting ready to split, I doubt it, but I could. When it’s my chest I have on a couple of occasions terrified for a few minutes that I was having a heart attack and on others that I wasn’t getting enough oxygen. Clearly I am still here and still alive so I would have felt really stupid about calling for assistance on any of those occasions.
Until the spasms started happening in my upper body and intestine, the answers where simple, it might hurt like hell, but no one dies from a spasm in their leg, no matter how bad it is so the only thing that there is left to question is how long do you let it go on for and how much pain you can take. I have never called for assistance for those sort of pains, but I have never had a really painful spasm that has lasted longer than 15 minutes and I think that one ran away on fear as I had the phone in my hand when it suddenly vanished. I have never been given any guidance on any of this, no one gives you guidelines as to what to expect, what is normal and when it is right to scream for help, we are all left in the dark trying to work it out for ourselves and I don’t think that is right. When there is no longer a single area of your body that is unaffected, knowing if it is that or something else, just gets harder and harder and there are no simply ways of working it out. If I had called for help every time the questions started, by now they would be taking my phone away from me, but joking aside, I would have been in and out of hospital a very large number of time. No one lives with pain without questioning over and over, is this right, is this how it should feel, or is this something new and different, nor are we immune to plain and simple fear
There are no easy answers to any of it, I guess it is a case of knowing yourself, your condition and your pain levels, after that, well it’s all guess work and prayers that you make the right decision at the right point in time.
Read my blog from 2 years ago today – 19/11/12 – Looking towards Christmas