The itch scale

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……


It’s not hard, just listen

It appears that it is truly possible to forget anything, even the position in your anatomy where you keep your tongue. I know I have had it all my life, but for the last few weeks, I have been repeatedly biting it. If it were in the same spot, well I would say it was swollen from all the biting, but it’s not. I have developed the ability to bite any section of it that happens to be in the way, which it appears to be a lot of the time. Anything from a stinging nip to an agonising full on crunch. It has even got the point where my mouth is now complaining by inventing the flavour of blood. I have checked over and over, but it is totally invented, not the slightest even pinkish huge to show that there might have been one real drop. I have no proof, but the only thing that I have been able to come up with is that it is all part of the odd things that have been happening in my neck and face in the past couple of months. There are so many stupid little things that have been happening, that I am sure it has to be. From the feeling of grit in my throat to losing my voice, numbness and dead area’s on my face, the sensation of dribbling and constant itching around my lips, the list keeps growing. Biting my tongue and even the inside of my mouth on occasion, even when not eating, seems to be just another part of a growing problem in the same general location.

I haven’t noticed in anything that I have read, but to me it is purely a logical conclusion, that if the nerves in one area of your body are affected in what are recognised symptoms, that the same nerve groups can produce other sensations and effects, not directly recognised as MS symptoms. From my own experience, I know an active area, does do unexpected things that there is no other logical explanation for. For example, if my PRMS can cause me to choke on food, throw spasms that make it almost impossible to breath, cause me to lose all feeling over one-quarter of my face, slur my speech due to weakened muscles and nerves, I am sure that it is behind the biting of my tongue. All the others are recognised symptoms, tongue biting isn’t, but the likely hood is, it belongs there as well. The truth is, that if there is a muscle or a nerve involved, where ever it is, that is doing something a normal healthy one shouldn’t, it is probably down to my PRMS. Therefore, if you have PRMS, don’t waste your life searching on Google for why anything odd has been happening for more than a week, you already know the answer. Note the word “odd”, there are a million things other than MS that can make you ill, if it sounds like a symptom of something, then question, if it is just basically “odd”, annoying, irritating and enough to drive you mad, it’s probably your PRMS.

In some ways, that is actually a really good description of any chronic illness. It doesn’t seem to matter what condition it is, there seems to be a universal truth, besides the pain, or the discomfort, they have an uncanny knack to be able to annoy, irritate and drive us mad. Quite often the hardest part of living with any condition isn’t the direct symptoms, but it’s the limitations on our lives and their uncanny ability to just make things difficult. I have often wondered if we haven’t spent too many years looked at chronic illness and disability in the wrong way. Everything seems to be focused on helping us to return to, or to mimic the lives we had before. To come up with aids, that allow us to go on as before, rather than working out new ways to achieve the same end. The perfect example of that to me is the work being done right now on building robotic aids, such as the exoskeleton. Scientist seems to be determined for some reason to put a paraplegic back on their feet, regardless of all the other issues that would bring with it. Undoubtedly their work is not only amazing, but groundbreaking and startlingly impressive in their field, but would it really give freedom and life back to someone who’s legs don’t work. Putting them back on their feet, wouldn’t fix all their other issues that come with their conditions, it feels more like a gimmick, rather than a true aid. I can see huge potential for its use in industry and other fields, but health, really? If those same robotics experts, were to turn those skills, into creating something that actually improves the lives of the disabled, I believe they could change lives very quickly and dramatically. Simply by starting with redesigning the wheelchair, what it does and how it is used. If they started by simply asking every wheelchair user what the issues are, they would quickly come up with a priority list and I am sure they could radically change lives in a short period of time.

Assumptions are one of the most degrading things that people do to each other. The majority of people would without a doubt, look at my life and assume, that the biggest improvement that could be made to my life would be for me, to be able to get outside. Wrong! I haven’t actually made a list from which I could tell you where that would rank, but I do know that it isn’t anywhere near the top. Just as I don’t believe, that the majority of paraplegics don’t really, want to be stuck in an exoskeleton, I don’t really, want to be able to go out. Once you have made it through that initial stage of shock and grieving, for what you have lost, something that happens at every stage, you grow accustomed to your life and trying to backtrack to an earlier stage, quiet often doesn’t improve anything. To an able-bodied person, getting out and about is something you just do. To me, it is a process that starts long before that, as to go out, I would have to get dressed, not just pull on pyjamas. but real clothes. Each and every piece of it, facing me with mobility issues, dexterity limitations and not to mention pain involved all the way along. Then there is the whole process of doing my hair, putting on makeup and making myself feel presentable. I would be less than half way through all of that, and I would just want to go to bed, but I would be faced with having to undo, all of that, first. Starting to get the picture. Yet, it is the one thing that everyone who hears that I have been here now for 8yrs, immediately comes out with the stupid question, “Can’t you move somewhere else?” The insults held in that question, are numerous, and enough to make me want to punch their lights out. I smile and say “Like many, we can’t afford to.” It’s easier than explaining the truth.

From the well-meaning to the should know better, assumption, is without a doubt the biggest and most insulting thing that anyone can do. Yet, from scientist to medic, to the media and right on to our own families, they all do it. There is one huge mind jump from a glib, “I want to walk”, to “I want to be put in this huge ungainly piece of metal and plastic, that is reliant on battery life and impossible to go to the loo in” but somehow, that is what someone heard. Yes, I do know it is in the development stages, but it is unlikely to ever be elegant and invisible under normal clothing. I might fancy going to the pub occasionally, but that doesn’t mean that I if I lived on the ground floor, that I would ever go there. In fact, living on the second floor, takes that thought out of my mind without pain, it just isn’t possible, rather than a tantalising possibility to torture myself with. Nothing, is ever going to be better for people like myself, or even those with far worse disabilities and illnesses than I have, until the day comes that someone actually, asks us, and actually, listens to our answers.

Please read my blog from 2 years ago today – 11/10/2013 – Set to embarrass

Something has triggered a round of twitches and jerks, to date I have been one of the luckier ones when it came to twitches as I have seen many who have them seriously, huge and drastic jerks that take over their entire bodies. For some it is not just the movement that is disturbing, I know that some find…..

A mind of two halves

Whatever is happening out there in the world, right here, winter has arrived and the lead into Christmas along with it. Sorry, if that disappoints you, but I am sure there are quite a few out there, that are right there with me and fully understanding my reasons. The best Saturday night TV viewing of the year has begun, “Strictly come dancing” followed by “Dr who”. It’s odd how two programs, that are the total opposite of my normal style of viewing, have so totally taken over my view at this time of year and the excitement that I find in the fact that they are both back. I am anything but a bubble gum TV viewer, give me a good documentary or failing that just the BBC news and I am happy, but I just can’t resist these two programs. I guess we all have those guilty secrets, those things that our mind tell us are ridiculous, but our hearts jump with glee at the mere prospect of. So that’s me happy until Christmas, even though the good “Dr” doesn’t run until then, I know the “Beeb” won’t let me down. They always find something as deeply bubble gum and good to take us through to the end of the year.

It’s odd how you change over time to fit your abilities and demands. 30 years ago, I didn’t really care what was on TV, I had too much to do to pay that much attention. Every evening once all my tasks had eventually been completed at around 8 pm, I eventually sat down. Well, I did have two kids and a typical home for the time. No gadgets, beyond a washing machine and a hoover, and I was a fussy housewife, so enough to keep me busy from 6 am to 8 pm. When I broke for the day, it was to knit and sew clothing for the family, or decoration for our home. TV was a background as the radio was during the day. 25 years ago, I was a DJ, didn’t care about my home as I was never there and as for TV, I never saw it. 15 years ago, once again a proud housewife and busy business woman, constantly working or cleaning, with no time to just sit down and watch anything. Now, I don’t clean my home Adam does, I don’t work, I don’t go out and I don’t have the dexterity to make anything. TV, the once somewhere in the background item, has become my companion. Regardless of anything else it is always on, and I always have something to watch or at least listen to from a continual supply of programs I have recorded or downloaded. Right now I am listening to a documentary about world war 2, as I write. Yes, I can do both, not as well as I once did, but I can. The silence without it would drive me mad.

Once silence was a joy, now it just reminds me that I am sat here alone. Silence sounds somehow like a prison. A reminder that I can’t make the noise that once filled my life. That I am locked inside its walls, with no escape. During the day, the TV teaches me, learning something all the time is one of the few things I can still do although I have no outlet or requirement for that knowledge, it somehow makes me feel more complete, more part of the world. No matter how well you might adjust to being housebound, the one thing you still need is to feel attached to the world. For me, that is what learning does. It can be history, or any other subject if it deepens my understanding of life, then it is keeping me connected to it. My last job was probably the job I actually loved the most. What I loved about it was that I never stopped learning, from the day I took on the role, I never stopped. I taught myself everything I could need and more about computers, from programming then onwards. I had to learn about business, laws, regulations and best practices, all needed updating constantly, I spent more time researching than anything else and I loved it. When it ended, I felt lost.

I didn’t even realise what I was doing when I decided that I was going to learn all I could about the two world wars, a subject that chose me rather than the other way around. It had just been there one day after a show I chose and I didn’t change the channel, oddly, it was interesting and that as they say ” the rest is now history”. I had unintentionally replacing that discovered need through work to learn, by learning about life. I can’t tell anyone how to replace what they miss from their working life, but I bet that learning something new, would help anyone and TV is a wonderful passive way to learn and doesn’t cost you a thing. Keeping our minds entertained and busy is essential. Sit on your settee day in day out doing nothing and watching endless bubble gum and movies and you are going to deteriorate before you even see it happening. Just like good posture and good relaxation helps out bodies, I truly believe that learning helps our minds to stay connected.

I woke last night once again needing to head for the loo. My mind may have worked out how to sleep every night for ridiculously long periods of time, but my body hasn’t. I pleased and surprised that I managed to get to the bathroom, stopping off for a cigarette and back to bed, without once seeing Adam. As always, wheels or not, I did the entire journey in total darkness and without banging into anything too heavily. More importantly, I didn’t wake Adam. I was lying in bed, starting to head back into sleep and feeling rather chuffed with myself, when I suddenly noticed that the entire right side of my face was freezing. I didn’t have to think about it, I knew it was the nerves playing up. There was no other reason why only one side of my face should be trying to tell me, that the outside temperature was several degrees below zero. There has been no improvement in my face sensations and movements at all. It is still my right side that is the worst and it does seem to still be spreading. More and more of it keeps sort of setting if you like. The movement required to speak or even smile at times, from my side, feels set still and unchanged. Adam has stopped asking if I have a cold, but I am becoming more and more aware of it, even without his reminders. What I don’t like personally, is that I can now feel it far more clearly, right up to my eye level and crossing the bridge of my nose. There are no time limits as to how long things keep getting worse, or when they will stop or even get better. All anyone can do is wait and see.

I really do seem just now to be falling apart again. The speech changes that the doctor noticed when I was at the hospital wasn’t due to the right side of my face, but the fact that I can’t end my sentences and get lost in my words. They too are happening more and more. In the last couple of months, I have been really aware of them, usually when things are tense or uptight. In the last couple of days, they are happening even when I am totally relaxed. A year ago, I would have held onto my last word and not let go until I found it’s missing friends. Now, I just stop. It is as though without permission, my brain has decided that there isn’t a point in fighting it any longer and that I have accepted that my brain just isn’t up to it, I haven’t. I am now totally unable to finish what I was saying, the blank is so deep that I don’t even have that feeling any longer that the word is on the tip of my tongue, as it isn’t. It has totally vanished for all time and there is no way of finding it. That was something that used to happen occasionally, now it is the norm. Worse still, it used to happen a couple of times a day under normal living stresses, now it happens every few sentences, even without stress. I knew exactly what my consultant was pointing out, what I didn’t know was that it is now as active as my muscle problems. Yesterday, was a mess, from my sentence to my last. Adam quite sweetly tried to say that it wasn’t that bad and was only showing signs of getting worse in the last couple of days, when I checked him, he shut up. Proof, he was just being nice.

Everything seems to be active just now, I don’t know why, but that is just the way it is. I guess, I am in another relapse, it’s just a matter of waiting until it comes to an end. That’s always the problem, they can last hours, days or weeks and when you live also with progression, it’s always hard to know which is which.

Please read my blog from 2 years ago today – 27/08/2013 – Connections of life

I don’t know why I didn’t think about it before but I now can see a clear reason why I choose to blog rather than just join into one of those groups, well actually I can think of million reasons not to join a group, but that’s another post. I started years ago with one of those slopes that once stood on never….