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……


Joining the dots

Every cell in my body is no longer just tell me, they are changing, they are now screaming it, so loudly, that my head is ringing with it. It’s about six months ago that I first felt that I was in danger of being on my feet and that my wheelchair, was once more, needed in my life. At about the same time as I found that not only; were my legs muscles becoming a fan of just collapsing; every sensation my PRMS had found to play with, had also become heightened; so to where my tremors, they were increasing; my spasms were more frequent and favouring the more intense, and my mental symptoms were, well they too were more intense; everything was moving, and moving rapidly. Six months is an incredibly short time, it’s not like when we were children, when months lasted forever, now, especially now, they have become incredibly short.

When that day came that I let the words actually come out of my mouth, “I need my wheelchair”, I had this huge lump in my throat. It was all well and good, thinking it, thinking it is safe, it’s silent and no one other than you knows that thought is even there. Saying it, is like writing your own death warrant, there is no going back. Admitting it to the world is a very different thing from the world telling you. If a doctor or the MS nurse had said, “Well Pamela, I really think you are going to have to use that wheelchair”, well I would have had someone to blame, an outside observer who had diagnosed a weakness, but I just had me. I think it was the first time where I have been the only one, behind changing my life, prescribing what was needed to deal with the course of my health. I was also doing something else, using a great big piece of equipment as a foil, not to hide me, but to hide what I didn’t want to see, or even think about. It partially worked. It was a distraction. I had to buy this or that, make sure that I had the optimum space to manoeuvre in, without rearranging the entire house. Things to do, things to think about, anything but stop and admit. I could bypass everything other than my brain, it has a nasty habit of showing the world my shortcomings. Stutters, slurs and blanks, appear throughout almost every sentence I dare to try and speak. Adam, well he’s used to it, but my visit to the hospital two months ago put a spotlight on it. The consultant spotted it the second I entered the room and tried to speak.

No one but us, knows about those maddening sensations, unless, we tell them. Well, no one can see a tingle, or a lightening shock hugging our skin, not even us. Unless we jump, squeal or flinch, they are our secret. Which probably makes them one of the hardest things for those who don’t have MS to understand. Yes, we can explain, that they feel like this of that, but the average person, they only feel something similar for the briefest of seconds. They have no concept, no understanding, or any way of even imagining, what it’s like to feel them for hours, days, months or even years. Pins and needles, so what there nothing. Maybe, until you have them running across your face for a whole day. Nothing, until someone, turns those pins into knives, and those needles into spears. So numbness, well it must be a joy to someone who lives in pain, isn’t it? You might think that, but MS has a trick unique to nerve illnesses, we can feel both, in the exact same spot, at the exact same time. Internal feelings have nothing to do with the real world. If you apply moments though the danger of numbness is real. Burnt hands from an oven, fingers from a cigarette, cuts that you don’t know are there, that fester before you spot they exist. Food and drink that falls from your mouth as you don’t really know if your lips are closed or not, as you can’t even feel them, or the food. Sensations matter, be it missing ones or created ones, if they aren’t exactly or even close to what they should be, they disrupt everything, create danger and generally, make life hard.

Last week, I described a bad spasm, bad, not because of what it did on the pain scale, but because it made my health all to visible, in a not too pretty way. Not all spasms are visually dramatic, many, like those who take sheer pleasure in stopping me from breathing, constrict, just below that pain level. To find a point, in any day, where either my diaphragm or my intercostal muscles, haven’t held that position, in the last couple of years, is hard. In that same period, I can’t say that for any other part of me. 2 years ago, I went days without feeling a spasm anywhere else. That was the point when my PRMS found my intestine, but still, the rest of me, I went days. When they came, well in comparison to my torso, I really didn’t care. They were there, they were annoying, but they didn’t last, and they didn’t hurt, beyond a normal cramp, or stitch. They were mundane and forgettable. Technically, a tremor is nothing more than a fast twitch spasm, yet when it comes to dramatic effect, back then, my tremors won hands down. The spinal twitch was the best, it swung my enter body, from my toes to my head, in sharp jolts, from side to side and still does. My hands before my chemo treatment, did a complete and expert impression of late-stage Parkinsons. Post chemo, they settled to odd spells, that never lasted long and I could hold my hand out in front of me, not steady, but not flapping all over the place either.

So why the requiem, because all of this, just like the need for my wheelchair has changed too, and in just as big and as solid away as moving my chair back into my life has. My first paragraph, well it laid out the glimmer of the facts. My legs were the dangerous factor, the one part that was partially fixable by adding my chair. A wheelchair doesn’t make your legs stronger, it doesn’t stop the muscles from collapsing, and you don’t have to be standing to feel it. You might not think you are using you leg muscles when you are sitting, but you are. Sit there and totally relax your lower body and you can feel the difference. When it happen unconsciously, it affects your entire posture and body. Suddenly, you have what are in all respects two long lumps of flesh with pins in them. They are closed off, separated from reality and feel just as dead, as they would be if you tried to use them to stand. When you are in a wheelchair, believe it or not, unless you are a paraplegic you use your legs in every push. Dead legs, make every push twice as hard as they are with your legs to assist. Now add into this, the fact, that that feeling of weakness, and even deadness, is now appearing in your arms. I now, especially at the end of a day, find myself sat in a chair that I couldn’t move without, but with little of the strength or movement required, to actually achieve propulsion. My foil now feels more like a folly.

Spasms are now stronger, but that isn’t what bothers me, it is their weaker cousins that are making life tough. Doing simple things like lifting my feet so they can sit on the rests on my chair, is now literally, a hit and miss process. My muscles jump, kicking away and far too often, into the foot rest. The precision required to place in where needed is almost gone, just as it is when I’m walking. My left leg is far worse than my right, and if I had to take more than a couple of steps, would without a doubt, trip me up. Just standing can be enough, to send it off in some kind of fit, twitching and flicking itself all over the place. At it’s worst, I don’t need to even stand, it just twitches unstoppable, and those twitches in my hands, are returning. If the worsening of existing and the return of the once fixed wasn’t enough, now I also have the vanishing voice. I haven’t mentioned it for a couple of weeks, but it hasn’t gone, it just comes and goes at will. I had to mention when I was at the hospital, as it chose Monday as a good day to vanish. At least my PRMS chose that day to show itself and its latest trick.

I felt all of this growing, just as clearly as I felt my legs leaving. My concentration on making life in a wheelchair work, for me, allowed me to, not so much ignore, but more, to put aside as secondary issues, everything else. I couldn’t ignore the change in my breathing, as yes, that too appeared at the same time. Clearly, something six months ago kicked my progression into high drive. I don’t know what, I just know that my body is falling into the abyss, faster than it has done since 2 years after my diagnosis. Then, Mitoxantrone was the answer, but that was a one-off, I was told then, that I could never have it again. It does so much damage to your heart, that they don’t dare do it again. So this time, I am on my own. I know Adam has seen all of this, just as I have, he would have to be blind to not have. Like the sweetie he is, he chose to respect my lack of discussion and the blind eye, I was clearly turning on it even in here. So now, I have publically joined all the dots, brought together the fuller picture, now I just have to work on living with the results.

Please read my blog from 2 years ago today – 13/11/2013 – Sharing the same space

My day was in a bit of a muddle yesterday, it seemed OK on all the main points and I even completed the shopping that is due to arrive this morning. I don’t know how or where it went wrong but I was……..

Ready to reboot, or shut down

I have had a rather back to front start to my day today, I don’t know why but I found myself doing things in all the wrong order but for some reason, it felt right and did it really matter? I know I have said so many times that routine is so important, but I doubt that switching the order of what I do on my PC is really a violation of that rule, just a sign that my nutty brain is in one of it’s not working absolutely correctly days. I honestly found myself jumping from one thing to another forgetting all the things in between until it suddenly hit me and I stopped and double checked, to find that I hadn’t written my blog, at this second I just wish I knew what I thought I had written about, well it would make this all move a lot faster if I did. Don’t get me wrong I’m not getting fed up writing, I have a funny feeling that that will never happen, but I would be nice to actually know what I am going to write about as I honestly don’t know any more today than I do any other day, the words just keep appearing.

I have been trying to work out something now for about a year, I seem to have developed a strange talent that I don’t understand at all, it has to do with the relaxation process that I use and have spoken about several times. It has to do with telling each part of your body to go to sleep working from your toes upwards, I think I did mention before that I have managed to get it down to the point that I can start at my toes and often be asleep while still working on my legs, plus that I could feel the change in each part of me as I work through it. I have also written many times that when I lie down, the sensations in my ribcage is as though my intercostal muscles are tightening and that a weight is pressing down on me, what I haven’t mentioned is this, it isn’t just my ribcage. Without even using my relaxation system whenever I lie down now, ready to sleep or not, almost my entire body now reacts to the fact I am lying down. It is as though they can’t wait for my mind to sleep, they will head off there all on their own, one by one going somewhat numb, or they stop sending me messages as to where they are. For example, I might know that my feet are about 6 inches apart, but suddenly it will feel as though they are crossed, or that one of my legs is bent, no longer touching the bed at all, but I haven’t moved. The same thing is happening to my arms, but it isn’t just their location I loose, they develop an odd sensation of a mix between numb and tingling, along with being extremely heavy, too heavy to move at all. The mild spasms I wrote about yesterday are also part of shutdown, at night of course when they start I don’t move, they just hold on as though the muscle is slightly ridged although I don’t believe they are, that is how they eventually feel. The oddest one is one I mentioned several months ago as it really is an odd one, all the muscles in my face have learned to join in this shutdown, they though start to feel as though they are going cold and slipping off my face. MS can produce any sensation that it pleases to and although sensations aren’t always painful they can be extremely disturbing and often maddening, like the itch that doesn’t ease regardless how hard you scratch, even to the point of drawing blood.

As I said this started about a year ago, at first it was occasional and usually just one part of me, as time went on it gradually started to spreading, the longer I lay there awake the more of my body it took over. Now when I lie down it starts within a few minutes and it happens all over me at the same time, until recently I really thought it had something to do totally with lying down as I never felt it during the day, but I had missed out one thing, I never really sit motionless during the day. Part of the reason for that is that I have a constant twitch in my spine, I lost my core stability a long time ago, it isn’t really a twitch but that is how it looks. From time to time it will calm down and it will give me some peace, I can stop it by wedging myself with cushions when I am sat on the settee, just as I did for the interview a couple of weeks ago. Normally when I sit on the settee, I spend much of my time leaning forwards as it makes it easier to breathe, but even then my spine goes nuts again. When I am watching TV, I will have my e-cig in my hand and I will be playing with it, or I will be rubbing a finger crossed one of my nails, I never really stop and not move at all. The same goes for sitting here, if I stop typing I start fidgeting in some way or another, I actually had become aware that I was fidgeting far more than I ever used to, I put it down to the fact I can no longer knit or do embroidery as I used to whenever I had spare time. The other day I actually did stop dead, I sat here with my hands over the keyboard but doing nothing at all, within the same amount of time as when I am lying down, everything went into what I now call my ‘shut down mode’. Just as I do every night I felt my body heading off, everything getting heavy and tingling or numb, it was identical and I remembered feeling it sat here before several times. Over the last few days I have tested it, here at my PC, sat on the settee and in bed, if I stop doing anything and I have no physical distraction, my body goes straight into ‘shut down mode’, like a screen saver, it shuts everything that isn’t being used.

Somewhere inside of me I am sure I knew what was going on, why else do I never stop and if I do, I do things like pushing a nail into one of my fingers or nipping my tongue, sending a message of mild pain that is enough to stop me shutting down. As I said earlier, sensations can be distressing and maddening, ‘shut down mode’ is both and I am sure that my distractions are all about avoiding another round of something that is welcome when I go to sleep as I now see it as part of how my body does shut down, but to find it doing the same when you are awake just isn’t right. To have gone in one year from the odd madness in one small area or another before going to sleep, to being the chosen reaction to not moving is worrying, imagination can take it much further and unfortunately, my imagination is just too good at times.


Please read my blog from 2 years ago today – 07/09/12 – Pain Relief Update

A few weeks ago I wrote about a test I was trying with a new cushion and pressure socks to see if I could get some relief from the pains I have in my legs, I hadn’t forgotten to update you I just wanted to give it a bit more time to see what the results really were. The pressure socks do seem to have had a positive result and I am finding the pain in my lower legs has greatly……

12 hrs and counting

It happened! That thing I’ve skirted round and feared to write as it might have been the last bit of temptation required for my body to make it happen, yet with no invitation at all I crashed last night at 7:45! I didn’t wake again until the alarm clock demanded that I paid it some attention, 12 hours of sleep strangely feel identical to 8 or 10, or even my average of just 6 that I used to work on. I wouldn’t mind if sleeping made me feel better, believe me I would stay there for several days in a row, if it meant that I would have one complete day of just feeling well. Although I moan about sleeping and I often feel guilty about it as I do realise that it is actually a blessing for most people with MS to sleep well at all. But it’s kind of odd to be thankful for any illness, yet strangely I am, if I had to have MS I would choose to add on Fibro, they may make my life hellish at times when awake but the combination I have to say is a gift, an odd one yes, but still something to be thankful for.

Since I have now actually reached the 12 hours straight at night with no difficulty, I am left wondering just how far this can go. Like so many things that in my heart I believed just wasn’t possible for an person to do without medical assistance, it has sparked those follow on questions. I’m sure you don’t need me to spell then out, but this is one of the strange side interests that illness brings with it, what is it actually possible for my body to do? I think from long before I was diagnosed with any of the conditions that I share my life with, I had already begun to be surprised by what my own did for no reason at all. For years I had spells of sleeping large numbers of hours, hard to deal with when there is a toddler in your home, but they happened. As did the sections of pains, and numbness that drove me made, wore me down and landed me up being treated for depression. The strange thing was that I always felt better when I was prescribed Amitriptyline, the drug of choice in those days for depression, now the drug of choice for nerve pain. I was never convinced I was depressed but when I said I was exhausted and just couldn’t cope with life, I was told I was depressed. Now I know it was Fibro and MS in their early phases, the treatments I was given accidentally was the right one, but that was luck and luck only.

The year Jeffrey was born I remember having several period of having problems dropping things, my hands just not working properly. I had a lot of time on my hands in those first 3 yrs of marriage, waiting for my job of being a mother to actually begin. I used those long hours to make clothes for my as yet not born family, I knitted, sowed and crocheted, but I would all to often be unable to manage at all, diagnosis of medics, was arthritis, an interesting one as there was no swelling or redness to my joints, but there I was with hands that didn’t work. I also remember my left leg would often go dead, not when I was sat down or asleep, it would just go from under me, diagnosis sciatica, but no shooting pain down the back or my leg? I even went blind in one eye for about 4hrs, I was in hospital at the time and one Dr came to see me, she just told me to sit still and see if it went away, it did, but no more attention was paid to it. Now 30 odd years from those small starting points, I now can’t think of one part of my body that actually hasn’t manage to make itself known through pain or hasn’t manage to do something I just didn’t think it could do. I had this mad idea when I was a kid that my body was here to carry me around and allow me to do the great things in life that I knew were out there to enjoy, now, well it has become an amazing place to be on it’s own, I doubt that it will ever not be a surprising place to be as it comes up with even more unexpected events to enjoy or not.

Progression means that those events in my life are getting closer and closer together, and their affects are more intense. Now I can’t think of a single day that I could list as unaffected, or uneventful in what my body throws at me to deal with. I am now feeling and noticing the progressive side of all of this more and more, I have passed that tilt point I suppose, the point where there are no longer breaks in anything they just keep going and slowly getting worse. Where I used to have the odd spells of numbness somewhere in my body, now I always have some point that is numb, there is never a moment I am aware of when there is nothing numb at all, the same goes for all the other symptoms as well, they are no there all the time. Probably this is why the gift of sleep, although annoying as hell as it reduces my life dramatically, has proved itself to be a true gift, sleep is a wonderful relief from it all.

Impact point after impact point

My concept of time is clearly no longer anything like it was in the past. I know they say as you get older time moves faster but when you have 6 hours a day less of it, well clearly that is going to have an impact. Adams coming and goings and the TV schedules are the only things that really stamps time on to any day. I was thinking earlier that if Adam wasn’t here for some reason for several days I think I would really loose total connection to the days or times all together, which is just such an alien concept to me. I have always been one of those people who lived my life at least 10 minutes ahead of the rest of the world. I was never and I do mean never late for anything! In fact I was often hours ahead of everyone, as I would start work at 5:30am daily when there was no reason for me to start until 9am, it just suited me as I had set hour a month to work and when well that didn’t really matter so much. So to find myself with only one point in the day that is fixed, when the alarm goes off in the morning is more than a little odd compared to my life to date.

Having MS and now being housebound has so many knock on effects that to the outsider, most would never even think about. It isn’t all about being ill or being unable to leave your home, there is an ever ending list of impact points, things that in an average life wouldn’t actually cause a seconds thought, if any thought at all. Lets say a button falls off your shirt, no biggie, you just find a needle and thread and put it back on. First biggie, could I actually pick up in one movement that button, or is it going to be a case of chasing it until I have it boxed in with no choice but to allow me to lock my thumb and finger in a pincer action. This is ignoring that dropped buttons are usually on the floor, somewhere that reaching is hard but if I had to get down to it’s leave then almost impossible to get back up from. A needle is again a challenge to just pick up, remembering where I keep them is another, but to thread it when you can’t see the hole and just catching hold of the thread, in fingers that can’t feel either well, but lets say I have done that. Now I have to find the coordination to actually sow, whilst holding on to all individual items at the same time. Now take this one example and start going through your day, we will make it a day off work so it is easier. Go through your day step by step, applying just the details I have given you, we will ignore the pain and the stiffness or any of the other things, lets for now just use what I have written here. Work your way through the day, from making your first cup of coffee, or not, through to you last action of the day going to bed. Starting to get the picture. People think about the big impacts of illness, the pain and the fatigue, but they miss that illness isn’t all about being ill, it is about the impact on life, simple daily life.

In many ways it is those small impacts that means I could no longer live alone, not the major symptoms at all. I already rely on Adam to do so much for me, simple things like the housework, dishes, washing, everything that any home requires someone to do. If I was here alone for several days, well the place would be a complete tip by his return, because of what I can no longer do. I feel terrible that I constantly ask for his help, but those choices that you make daily to fetch a glass of coke, or empty the kitchen bin are as out of my control, as the pain in my legs is. It is if I am honest, the small impact points that I come across daily, that makes life harder and harder to live with. The frustrations of living with not having the ability to look after you world, is amazingly high, and equally degrading to your quality of life. I asked you to imagine one day with simple limitations, well now add in everything you have read in my blog to date for that same day, and yes you have guessed it, imagine that is your future. Your picture of life when trapped by illness may be building but I can’t put into words the total reality, nor can I write it well enough for you to step into my shoes, if you like.

If all I had to do was live a normal life but just with the addition of pain, even the same levels that I have, I think I could do that. I really believe that if pain was the only issue, I could still be working, I could still be who I was, it is all the other symptoms, the smaller ones that many forget when they think of illnesses like the one I have, that makes you disabled not the pain. The exhaustion, the lose of dexterity, memory, strength, mobility, visual problems, brain fog, muscle weakness, speech problems and on and on. Pain is one and only one part, but it is the one everyone thinks of above all others, as the most terrible thing to have to live with. Don’t get me wrong, I would be elated to be rid of the pain, but pain really is just part of the picture, but a picture I hope you are closer to understanding the more you read. Other wise well what I am I doing this for, I do this for all who read and all who want to understand the world illness plunges not just me, but millions of other into.