On the move

I found myself sitting on the toilet, watching my left hand intently. I have had odd spells of tremors for years now, but this, this was somehow different. It wasn’t my entire hand that was moving, it was just my fingers, almost as though they were playing an invisible piano, apart from my middle finger, it alone was moving side to side frantically searching. My tremors have returned, visible to the world, not hidden and slight, but in a fashion where the slightest glance can see. My hand was the last part of me to think that it was funny. For the past week, my spine and legs have been dancing around like a stringed puppet in the hands of a child. I was sat there, staring at the last thing that I believed that I still had total control over, proving once again that I was wrong.

When my health took its major dip, the one that led to my being give chemo, to kill off my immune system, in the hope that when it kicked back in, it might not be quite so aggressive towards my body, tremors were the most visible symptom I had. I shook like a jelly on a plate. Like now, and as it has been for 13 years, I have little control over my core. Somewhere in my spine, around about my waistline, there is a nerve that enjoys jumping. The result is that I sort of shudder and quiver. Back then it was constant and there was nothing I could do about it. Now, well, it comes and goes, right now, clearly it’s here. I have learnt tricks, like sitting in the corner of the settee, with my back pushed back into the cushions, so that the tremor is limited. If it is my hands that I want still, well I can either, which looks kind of silly, spread them tightly into a star, or, turn all my fingers in, so that my nails rest on my thumbs, somewhat like a lose clench. Of course, the one place where I can stop nearly all of them is lying flat on my back in bed. It’s easy then to pin everything in a way that makes any movement both difficult, and unlikely. To date, the one thing I can’t hide is when my legs start to jump. Even in bed, that one is visible and according to Adam, keeps him awake. Tremors may not hurt, but when your body is in constant motion, and you’re a poor traveller like me, the side-effect of seasickness is always around.

Why I am suddenly in constant motion, I have no idea. Stupidly yesterday even Adam asked, “Do you know what triggered it?” If I did, don’t you think that I would avoid it? What I do like, is when it is at its most violent, Adam has decided that it is up to him, to provide stability. I like it, because, he wraps his arms around me and doesn’t let go. He is clearly scared that I am going to fall, or that I will career into things. At times, he offers to hold me, even when I am sat down. From the look on his face, I can tell that it appears as though I am in pain from it, but I’m not. The closest to pain that my tremors cause really doesn’t come from them, but from my stomach or a spasm somewhere, combined with badly placed tremors, well, comfort is far away. It goes without saying, that I drop more things, send more cigarettes flying through the air, and gather bruises, as my limbs slam into furniture that of course, I know is there, but they have clearly forgotten.

Although I have seen tremors listed as a symptom of PRMS, in fact, all forms of MS, I haven’t really seen that many people writing about them, actually, I haven’t seen any. To the outside world, those who know little about us, it is a symptom more often associated with Parkinsons, what many don’t realise, is the two conditions hold a lot of similarities. On days like today, even I wonder, but as I already know the truth, I just quietly shake and wait in hope that tomorrow it will be gone. I remember years ago, when I was still actually taking the bus to work, so that says it has to be about 14 years ago now, that having a tremor was useful. I had grown used to the fact that my condition was invisible, suddenly people could see there was something wrong. I didn’t care what condition they thought I had, as long as someone was kind enough to offer me a seat. Back then they tried sending me to physio, in the belief that if I could strengthen my core muscles, then I would stop dancing around. Like almost everything I tried, it didn’t work. It did help to improve my stomachs flatness, but they weren’t actually too bad before they started. What I would give for a flat stomach these days, well, I’d give almost anything, but I bet, I’d still be trembling.

One of the side effects of tremors, like this, is the energy that they use. I am always more tired, which isn’t really surprising, as I am never still. What I’m not so sure about, is why my speech always seems to dip with it as well? I know that could have something to do with the fatigue, but even early in the day, I seem to stutter more and be less able in my conversation. I would almost say, that I develop a tremor in my brain and in my vocal cords, as mad as that might sound. Whatever is behind it, the result is a stuttering, jumping, quivering mess, otherwise know as my life.


Please read my blog from 2 years ago today – 20/03/2014 – What is that?

I headed for bed last night not even sure if I was going to make the short journey from kitchen to bedroom. Adam was making himself something to eat and I made a point of covering up the pain I was in as I knew he would just head off into a panic, the pain was in the back of my right lung and it was agony. Over the hour before I went to bed I had as always just been watching TV sat on the settee, the pain started just as a dull ache but I built and built, by the time I went to say good night to Adam, every step I was taking caused the pain to peak from the shock-wave of my foot just hitting the floor. I knew that I had my stash of tablet on the chest of draws by my bed and that was the only thought that kept me going as I tried to take off my dressing gown and hang……






Inspiration for me

I don’t know what got into me yesterday, but even after I finished my post, which usually clears my head, I found myself still feeling the same. Reading it back, was a huge mistake, I probably should have just left that for a few hours or so, but I didn’t. I found myself fighting tears, tears that had no reason or no result. I honestly felt so alone, it was painful. The stupidest thing about that is, I had Adam here. He is on a weeks holiday just now, so oddly, I haven’t been alone for days. Mind you, I guess that’s why that sort of alone hurts, I could have had a crowd around me, and I still would have felt the same. So I am happy to report, that today, that feeling isn’t gone, but it’s back in its place, part of me, but not all of me.

I am now on my third load of tablets, designed to help with the pains in my guts. The first two failed dramatically. The Mebeverine brought so many problems with it, that the fact that it did help in lessening the pain, didn’t matter. I was left with the worst heartburn I ever remember having. Getting someone who has no memory, to take a tablet twenty minutes before a meal, is now officially impossible. I either forgot to take it or my own speciality, I took it, then forgot to eat. That one produced the worst heartburn, but, even when I got it right, the side effect was still there. The night that it managed to scare me, was the one when I actually woke because I had a mouth full of sick. Not a little bile, but a mouth full of that day’s dinner. I’m just glad that I woke.

I am now on Alverine. This is just day three, and although it isn’t perfect, buy I feel so much better. There is still pain, but it is at the same level of pain as I get anywhere else in my body. In other words, it is at a manageable level. For the first time in about three or four months, I have just had two nights sleep without interruption. For a couple of years now, I have slept for 11 hours straight every night, then suddenly, I was awake every night in pain. I have become so used to it, that I had a set routine, I would go to the loo for a pee, head for the kitchen, have a cigarette and head back to bed. The problem with that was, that I never went back into a proper sleep. I would say it was a mixture of a dozing and moments of true sleep, which just isn’t good for me. If there is one thing that I need it is sleep. Right now, physically I feel better than I have in ages, which is probably why I felt as I did yesterday, it happened, because I could, I wasn’t tied up in nothing but extreme pain.

For two nights in a row, I have slept, nothing got in my way. Then this morning, I woke with the alarm, but at the same instant, I felt the pain in the left side of my back and the top of my legs. It is something that I get a lot, but it was just a bit of a bummer, to find that not all the pain was controlled quite as much as I thought it was. Right now, I’m still in that pain, lessened because I’m now upright, but I know the only thing that will clear it, is emptying my bowels, and that’s probably not going to happen for a couple of days. I know that I was probably just being over-hopeful, but if we don’t hope, what else can we do.

It was a long time ago now, that I made the decision that modern medicine was the thing, I was going to put my hope in. Having over the years, tried almost anything that I could get my hands on, that I could afford, I made my choice. For me, it was partly down to cost. Living in the UK, I have the benefit of free medical care. Living in Scotland, I also get all my medication for free too. Without a doubt, if I had to pay for everything, I probably wouldn’t be so quick to say, “This isn’t working please can we try something else.” I suspect, working or not, I would, at least, push on with what is partially working until, I had taken everything I had been prescribed, before switching. So I am in a luxury position compared to many, in reality, it’s the way it should be for us all.

I have to say the costs that others faced, wasn’t something that I even thought about until I joined social media. It was like crashing into a spike-filled brick wall. Suddenly I found myself talking to people who were having to choose between their medication and basic things we all need to just live. For me, that whole experience was extremely hard, I even went through a spell of feeling incredibly guilty. Here I am surrounded with medication for every aspect of my health, talking with people who didn’t even have access to anything beyond aspirin. I felt it so badly, that for about a year, I stopped talking to people on twitter at all, and closed down my Facebook account. Yes, I still tweeted, but I avoided actually responding and ran a mile from the chance of chatting. Almost daily, people tell me how inspiring I am and how much they admire me. Personally, I don’t get it, as to me, if there is anyone who our admiration should go to, it’s those who live our lives, without the care that we have. If for some mad reason all my medication was suddenly taken away from me, well, I don’t think I would be here very long.

Today, someone asked me how I managed to be so upbeat all the time. Well, now you know. It doesn’t matter how bad I might feel, how much pain I am in, I know that I am lucky. Yesterday was one of my blips, I wouldn’t be human if I didn’t have them. Yes, I was already a positive person, but the above is something that I never forget. I no longer feel guilty for the care that I get, but I do count myself as so privileged to live in a country that even cares at all.


Please read my blog from 2 years ago today – 19/03/2014 – A perfect life

Today so far is a good day! It actually feels good to just be able to say that as it doesn’t often happen, the last couple of days have been kind of draining and I have spent a bit more time sleeping than usual, I guess it made the difference, but I can’t really sleep more every day, as I just wouldn’t have time to know I’m still here and alive if I did. These days I sleep 11 hours at night and between 1 and 2 hours during the day, imagine taking that many hours out of your day, whilst still trying to be active in the world and to spend time with those you love.

It is probably the one thing that I find the hardest, just how little time I really have to spend with Adam. During the week, I see him for less……





Somewhere inside

To an outsider, my life must look so dull. To me, no two days are ever the same. I never realised the depth and variation of sensations, that there are, that one human body could produce, nor the intensity of feelings or the emotional kaleidoscope, that could produce. I guess that we are all mistaken in making one assumption, we are all the same. It’s an assumption, that I made like most when I was still a child. I looked at the world and saw that we all have one head, two arms and two legs, therefore, we are all the same. I had that mistake reinforced when I was constantly told my doctors in my twenties, that there was nothing wrong with me. All the pain, the fatigue and everything else I felt, apparently, didn’t exist, or everyone out there was going through exactly the same, and I was just a wimp. I accepted the second, as fact. I was a wimp and I was just going to have to get on with it, as everyone else did. In some ways, I am now glad that I took that option, as it taught me how to live with what I now know is an amazingly difficult condition, to live with.

I can honestly say, that no two days are the same. Every hour of my life is different from the one before. If I were to look at it on the basic level, yes, I could just say that I am in pain and discomfort, but even that changes all the time. The combinations, the exact locations and how they feel never stands still. I might be motionless, but my body never is. I have tried so many times to explain what it is like, to live within my body, but it doesn’t matter which post you pick, which day, month or year, not once have I been totally happy with my description. I can’t write in the detail required, in a way that would compel anyone to continue to read. By the time, I had pieced together, a fair and detailed description of one part of me, it would have changed and my words would be wrong. I know, because I have tried and the result, is that I delete it and I try again. If I get close enough to being happy and I publish it, I know by the time it is read, all of it will be history. Capturing my life is like taking a still photo of a tornado, it tells you little other than that second in an ever changing process. That’s why I’m happy I learned to live within it, when it was still forming, and long before it became so destructive.

From time to time, someone starts to read who understands how my life is. They recognise some of my posts and connect to events and the feelings that they bring. Those moments of connection, of understanding, mean the world to me. I know and I have said it a million times, our conditions don’t matter, If we share symptoms, lifestyles and emotions, that is what matters, that is enough to say that we are one. But, there are times when I feel so totally alone, like I no longer have a head, two arms and two legs, because, I can’t find the connection of anyone who understands it all. The world out there hasn’t changed, the world out there still looks the same, so it has to be me, it has to be me as I don’t seem to fit any of the moulds any longer.

I have yet to find one other who has PRMS, who I have found that connection with. I have met I think maybe two or three on twitter, but they weren’t the type of people who wanted to share. That’s OK, we all have a choice as how we want to live and finding someone else as open as me, won’t be easy. I know PRMS is rare, but I never thought that it would be such a lonely world to live in. As I have just said, without a doubt, there are people out there who get it, so maybe, it’s just me. Just me, is lonely. Not lonely in a conventional way, it’s not about company it’s about total understanding, connecting, finding a mirror to look in and seeing a reflection I understand. When your body is in turmoil, when every second is different from the one before, well the odds of finding someone in total alinement, says it isn’t going to happen. Even if it were just a shadow world, I’d like to, at least, say hello, long enough to high five in recognition.

I know I’m not the wimp that I once thought I was, I’m a long way from that. I know that I am probably the luckiest person in the world, to have found someone who loves me, who supports me and cares for me. I know that I have a huge community out there of people who read my daily ramblings, who care enough to keep in touch and say hi, from time to time. Yet, as I said, sometimes, it just feels as though I’m alone, which is probably the craziest thing I have ever written, but right now when the pain has jumped off the scale several times as I have been writing this, when I feel as though I have an alien child inside me, ripping my insides apart and spasms flying up and down my legs. I feel alone. Maybe, we all feel like this. Maybe, I’m more average, more “normal” than I think. Maybe, it’s just one of those days.


Please read my blog from 2 years ago today – 18/03/2014 – One simple fact

I find myself in an unusual position today, my right thigh, yes I did say right, is in almost constant spasm right down the front of it. The pain isn’t any worse than I often have in my left leg, but just being on the wrong leg makes is 100 times worse for some reason. You wouldn’t believe just how something appearing where it shouldn’t be, can actually really make feel far worse than it should, maybe it will settle down as the day goes on, or maybe I will just start to accept it and get on with everything……

Safety first or last?

Someone seems to have stuck a stick of dynamite up my GP’s backside and blasted him into the 21st century. Last month, out of the blue, the receptionist told Adam, that they now have a website through which we can now order my prescriptions and book appointments, without having to phone. I checked it out with total excitement, yes, my world has become that limited, and when I read the leader page, my excitement grew. There was my dream, access to my personal files. It didn’t last long, as it turns out it is up to each GP individually to decide if they want to open our notes this way or not, mine has chosen the not. I had also hoped that I might be able to request a phone call, since clearly I don’t need appointments, but no luck there either. On the good side, we can at least put in the prescription requests.

Then yesterday morning, the phone rang, it was a call from my doctor, well not quite, it was from the surgery number. There was this woman who introduced herself as the practise pharmacist. I wasn’t even sure that the practise employed a cleaner, far less something as posh as a pharmacist, so I was somewhat shocked. No, I’m not implying the building is dirty, it’s just I wouldn’t have been surprised to discover the receptionists were also the cleaners. Anyway, the pharmacist was calling to check that I was taking the correct dose of one of my drugs. There was an error in the dosage on her screen which I had spotted on the pack when it arrived here. Because I knew what I should have been taking, I had ignored it, but she sounded as though she was more than a little concerned and told me that I must only ever take one puff twice a day, not the two on the label. It was clear from the quantities we had been ordering that that was in fact, what I was already doing. It set me thinking about who is supposed to check what, as accidents can undoubtedly happen, we are all human after all. This one, surprised me, though, as I have been on that inhaler now for well over two years, and it has been supplied by at least two different chemists. The original prescription had been requested by my consultant, my doctor then wrote it up, and it has been in the hands of several pharmacists, but suddenly, out of the blue, one stopped and checked it that bit more closely, what happened to all the others?

We automatically assume when a drug arrives in our hands, that we have the right drug, with the right dosage instruction written clearly on it. I have never once, looked further than that. I’ve never checked online to see what the recommended dosage is, or questioned anything about any drug when first prescribed. I suspect, the same can be said for all of us, we assume, we expect and we believe that it is always correct. I know that in the past on two separate occasions a chemist has refused to fill one of my prescriptions, without first talking to my doctor. On both occasions, it has been the same thing, the very high dosage of steroids that I at times need for flares. They both wanted to double check them, as the dosage is off the scale for most people. That, I believed until yesterday, was the safeguard, the pharmacist. This time, I was lucky, when I started taking it, I remembered what my consultant had said about it, and how to take it, so I knew. That was pure luck, as normally, I remember nothing and by now I could have been taking a double daily dose for nearly 2 years. It appears that all our medications safety relies on, is luck. Is that really a good thing to work with, just luck.

Lately, we are being repeatedly told that if you can’t get an appointment with you doctor, and your condition is minor, to consult your local pharmacists. The TV ads portray this well-educated person, just a step below our own GP’s, who’s knowledge is vast and that we can trust, trust to prescribe us the correct treatment for what ails us. Long long before those ads appeared, in fact, for a lot of my adult life, that is exactly what I have done, for anything not serious enough for a doctor’s attention. I’ve watched them filling prescriptions, two of them side by side, apparently checking all is correct. I have even seen some, flicking through drug manuals, I thought to check dosages or any detail, they were uncertain about. For 2 years, my prescription has been in the hands of what must be dozens of these professionals, yet only now, one spots the error? Why?

In this case, there was no danger, but it could have been a very different story. There are a million and one drugs out there that could have killed me long ago, some of which I am actually still on. It has made my realise that maybe, just maybe, that in the future it might just be worth checking ourselves, something that these days, it’s easy to do. At our fingertips, is the exact same information those well paid professional use daily. Putting in one more check as we start yet another new drug, might just save us problems in the future.


Please read my blog from 2 years ago today – 17/03/2014 – Still longing

I used to think that when I grew up I would know the answer to everything and that my life would flow smoothly as I would have nothing left to learn. It’s amazing just how wrong a child can be and how far from even scrapping the surface I am from actually knowing anything. All of us have a million questions daily, some small, some amazingly big, but in our minds at the second they appear they feel just the same. I never got the chance to do so many things in my life that I wanted to do, not because anything really stopped me but more because life just took over, time pasts and somehow those things just became unimportant. The places I wanted to go, the……






Independence: The important part

When I read back yesterday post, I was very aware there was something missing from it. To me, it was something so major, that I knew I had to write a follow on post, one that would not just correct the mistake I had made, but would explain to both you and me, what is really behind my pain. As I said in the opening paragraphs, that I’m hurting, that I can’t accept that I am losing my independence nor the speed that it is happening. Then I proceeded to write a more clinical post if you like, one that explained the physical events that add up to my loss of independence. There was the problem, I wrote a clinical post, how I feel is not clinical in any way. Clinical is what the doctors, the government and the social services assess. To me the person who is living with it all, it isn’t clinical, it’s personal, it’s emotional and it hurts like hell. So this is the flip side of yesterday post. Today, I am going to take each of the six sections, and look at them through my eyes, the person who is living with each one and how they effects me, physically and emotionally.

The first is eating. Eating is to some people, ie, Adam, something that “simply supplies the nutrition that we need. It doesn’t matter how it looks, just shovel it in” WRONG! Eating is probably the most important thing in my day. It gives a break from all other activities, admittedly it isn’t as exciting any longer, but that is down to my lack of ability to cook. I have fallen into just keeping it simple. I have found a few meals that I am happy enough to eat again and again. But I do have a complete feeling of dread about the future. Food should be interesting, it should look great, smell wonderful, taste fabulous and along with the taste, should be a range of textures, to equally excite your mouth. Some of these things I already miss. As things are, I frequently choke on things, so textures have already slipped as softer foods are easier. Meat has almost gone, not that I miss that, but I do miss fish especially shellfish. Preparation and expense have reduced them to rare treats.

If my dexterity fails me and I reach the point when spoons and forks defeat me, then let me eat with my fingers, rather than someone feeding me. I can’t bare the thought of good food becoming a mushed up mess. If you like, a return to toddler foods, as I have seen so many landing up on, so that they aren’t in danger of choking. Food matters in so many ways and as far as I can see, every single one of them is ignored, it becomes all about nutrition. I hate the idea of soft nameless slop being spooned into my mouth. I would rather have another tube down my nose than be fed slop, though, I doubt the doctors would agree to that, just out of preferance. Ask a doctor and food is nutrition, ask a chef and food is art, that the side I fall on. When food can’t be an art, I don’t want to eat it. Right now it may not be an art, but that is down to practicalities of life, I could still eat a meal from any top restaurant you can name. I could, it’s just thanks to life, that I don’t.

The second is bathing. For some bathing is a wonderfully relaxing experience, I’ve never been one of them. So to me, this doesn’t rate highly on my list of desire or luxury. I am happy to be in and out of the shower in five minutes, so my emotional problems with showering are totally physical. I can’t stand the idea of being seen nude. I wouldn’t have batted an eye about it years ago, but now, no. In 9 years of being housebound, every one of those toned muscles that I once had, has turned to flab. I don’t even want to look at my body, anyone else seeing it, is something I want even less. I wouldn’t just be embarrassed, I would be mortified. I will fight with every once of my bodies energy before I would allow anyone, to be there with me, to wash me. To many, I know this will be surprising, but I don’t even want Adam to see me. He has done so now for about 11 or 12 years, I don’t remember, but I’d rather his memory stays as it is. I already find showering exhausting, even though Adam now does all the running around and shifting of towels, clothes and so on, I am knackered in just those 10 minutes, but I won’t give in. Emotionally, this one is huge and I can see, probably the one I will be facing the soonest.

Going to the toilet. It should go without saying, if I have the problems above with bathing, they are going to be doubled with this one. For some reason, even the idea of someone helping me onto and off the toilet is just wrong, terribly wrong. No matter how I have searched, I can not find any way that the word dignity and toilet can ever go side to side as our health fades. The fact that I could already on occasions benefit from a comode in the bedroom is totally ignored, by me. It isn’t just the idea of using it, it is the idea that Adam would have to empty it. The emotional hurdle in that one is higher than the ceilings in our victorian home. Worse still is the fact, that I am supposed to self-catheter all the time, I don’t, I just do it when I know I need to. I can’t bear the idea of Adam having to do that for me and although a lesser hurdel, a nurse coming in a couple of times a day to do it for me, I still hate the idea. To me, it would be better to have a permanent one, but yes, someone would have to enter the bag.

Toileting is a subject that has to be the hardest one to get around, the ultimate thing that says, you have no independence. The final mortification in life. The day that I lose all ability to deal with this area of life, is the day that I have to start thinking about many things very closely. In many ways, this to me is my game breaker.
Dressing and undressing. I have never had a great interest in clothes. I was the person who had enough clothes to keep my body covered in a style I liked, and no more. Everything was and is black, and everything instantly goes together. What I put on in the morning, is what I always wore to the end of that day. I never had different outfits for different occasions, I had clothes. Nothing was appropriate or inappropriate, it was just what I was wearing. To be honest, I care little about this at all. Even when I go to the hospital now, I wear my pyjamas, why change, black baggy trouser and black baggy top, their clothes. I guess you get my drift. As long as it’s black, I don’t really care. But the future, well then I care. I can’t hide my body from the person dressing me, that I care about that greatly. Dressing or undressing while covered by a sheet, is a million times harder and I don’t have the flexibility, if I had, I’d never need help.

Socialising. People make a big deal out of this one, which is something I don’t really get. As I said yesterday. I am happy with life as it is, to me, this has nothing to do with anything except when it comes to when I have to deal with anyone other than Adam. I have grown used to our life and outsiders disturb me, as long as he is between me and them. I cope. But I have spoken about this all before.

Dealing with paperwork. This one hurts. I know it’s an odd one to find pain in, but I do. Since I was a child, I have dealt with everything myself. I taught my own mother how to pay a bill when my father left, as she didn’t have the first idea. I wrote up my own divorce papers which my lawyer only changed slightly. I’ve dealt with pensions, mortgages, you name it, I have done it without aid. I can’t even read a letter from them these days without going into a panic. Dealing with the legalities of life, are now beyond me. This to me more than anything shows me I will never be independent ever again, physical abilities come and go, mental ones, only ever go.

Independence is so emotional, so awe-inspiring that when it comes to the time you are being forced by your own body to let go of it, well, no form from the government, no visit from a social worker can ever sum up what it really means to us. Even the words that I have written here, only touch the very outer edges of it. I don’t think I have the ability or knowledge to put down their full impact. If you still have your independence, even just a tiny shred of it, hold on to it tightly, never give in, just because it might be easier, as trust me, it’s not.


Please read my blog from 2 years ago today – 16/03/2014 – “It’s life Jim”

I know that there will always be good days and bad days and that I will never have any control over which happens when, but what I would like, is to just smooth out the extremes. Yesterday my pain was more or less out of control, I twice reached for and took a booster pill just to get myself set at a level that I was comfortable to go forward with the rest of the day. Yet just earlier in the week I was feeling good and able to get on with life without a second thought about taking more meds, tablets which I now have stashed in three places around the flat. One with the rest……