Everyone knows the some of the major symptoms that go along with different chronic illnesses. The biggies like loss of balance in MS, or memory issues with Parkinsons, but quite often, it’s the odd little things that go with them, that really drive us mad. Everyone at some point in their life will have had an area of skin that just won’t stop itching, but there is nothing there to be seen, well those are the sort of things I’m talking about. Those annoy “itches”, that just don’t go away, expect, these aren’t itches. Right now, for me, my itch, is my throat. I mentioned the other day that I have a problem swallowing, well that is only part of the story. I have several issues with my throat, some serious, other clearly on the itch scale and I know that the other day, I made light of the subject and moved on, but it’s more than an oddity, it is a slightly scary oddity, annoying and often drives me right up the wall. I don’t know exactly what causes it, but sometimes, when I am just sitting and doing what we all do, breathing and swallowing our saliva without any conscious thought, suddenly, my throat just locks up. It feels a little like there is suddenly a vacuum that is so intense, that I can’t breathe, swallow or oddly even open my mouth without forcing it to. I don’t mean with my finger, just with my brain, it has to be a conscious thought. Otherwise, I go into this cycle of trying to swallow, as though I have something choking me, but I can’t and don’t need to cough, as there is nothing there.
The first time it happened, I admit that I was scared. I honestly felt as though I couldn’t breathe and I wasn’t going to be able to take another breath. Everything was locked, set as it was and unchangeable. Sometimes, I can’t get rid of the air that is in my lungs, at others, I can’t find fresh air to fill them. It always feels as though the tubes to my nose, have closed, not as the feel when blocked, no, this feels as though they are sealed. There is a sensation similar to a vacuum in my mouth, it is so tight, that I can’t break it and it stops me doing anything about it. Personally, I think it is some sort of spasm, that closes off the entirety of the back of my mouth, throat, soft palate and nasal canals. For a long time, I thought that all I could do was to keep on trying to swallow until the spasm broke, as it always did. It took time and was extremely uncomfortable to do so, and the longer it went on, the more I would begin to panic internally, but I couldn’t see any other way around it. Adam has seen me struggling over and over with the worst and tightest one, which still distress him, far more than they do me. I eventually worked out that with a concentrated effort, I could actually open my mouth and that if I took a sip of liquid, I could trigger the instinctive action, of swallowing, and break the spasm. Instinct can work with you, or against you, as it is instinct that makes me sit fighting with it, rather than just taking a drink. When you can’t breathe, instinct tells you the last thing you should do, is add liquid. As I said, at first, it was scary, now, it is one of those annoying itches, that I just have to live with. For the last couple of days, it has been driving me totally up the wall.
That one is big and dramatic, but ask anyone with MS, there are loads of smaller ones, and some, are totally identical to an itch. The hours I have spent scratching must be in the high hundreds, but unlike a real itch, ones produced by MS, doesn’t respond to anything. You can scratch, apply gallons of cream, or have a bath, but it still itches. I have on more than one occasion, scratched my actual skin off, only stopping when the blood starts to flow. You can’t help it, you just scratch and scratch, out of pure frustration. No one pays that much attention to someone scratching, but I’ve had more than my fair share of odd looks because, I’ve been continually & violently rubbed at the end of my nose, my ears or my hands. Twitches, go next on my list of annoyance. I’m not talking about the ones people can see, they usually don’t have any sensation behind them, the ones I’m talking about are actually purely a nerve signal twitch. I don’t know why, but it has always been my nose that does it the most and annoys me the most. Even though I know it isn’t moving at all, I can’t stop feeling a little bit like a rabbit, and fearing that what others might see. Even when I am alone, it doesn’t take long before I am angerly rubbing and vocally showing my frustration as I do so. Whilst I am on the subject of noses, there is one other annoying thing they do, although, I have to admit, this belongs really low in the annoyance scale, but my nose drips without any drip. Honestly, it can feel as though there is a droplet, just sitting there ready to fall, when theirs nothing there at all and just like the invisible twitch, they keep happening.
Finally, in position four on my annoyance list, are jerks. I know “jerks” annoy everyone, but it’s not that type of “jerk”. Mine are those sudden involuntary movements. Some can make me laugh, like when I’m sitting totally still and my hand or foot will suddenly flys up in the air, but when your entire body suddenly jumps, it’s not so funny. Like all the annoying things, they don’t all just happen once and vanish, jerks can repeat and repeat and repeat. Most people will have had those moments when trying to go to sleep, and their body suddenly jumps, waking them up again. Well, it’s not dissimilar to that, expect, I can be eating, drinking or doing anything at all. When they go into repeat, well I’m sure you can imagine, what that would be like 10, 15, 20 times in one hour. It makes life difficult. Go and search as much as you like and I promise, you won’t find any of these on a symptom list, but there very much part of my life and the life of millions of others. If I’m honest, they can at times be far worse than the spasms or any other officially listed problem, it’s just no one tells you about them. Just as everyone with MS, doesn’t have the same combination of symptoms, I’m sure that each person could make up their own list of annoying things. In fact, I bet the same could be done by every single person who has a chronic condition. Our lives are never just what the medics say, but tell them about them, and they nod knowingly, and that is almost as annoying.
Please read my blog from 2 years ago today – 08/01/2014 – Do you know, I think I do?
After more than a month of searching online and driving myself slowly mad, I have at last an e-cigarette set that actually works, it actually works a lot, lot better than the one I had before, even when it was……