Joining the dots

Posted on November 13, 2015 by livinginalimitedword

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……..

A silent power

Posted on October 17, 2015 by livinginalimitedword

I found myself yesterday lunchtime, sitting in my wheelchair enjoying a cigarette and watching Eastenders, I missed it the night before, totally my fault, I forgot about it. A programme I watch four evenings a week and I forgot it was on, only my brain could be that thick, and that stupid, but that’s another story. Anyway, I was sat there, just staring at the screen when suddenly I noticed something. To be honest, it was more of an awareness rather than something that actually happened. I knew that I was sitting there slumped to one side, with my head tilted even slightly further over, instead of sitting upright as I usually do. My legs were slanting over, so that my knees were together, resting on the chairs frame. I felt like a sack of potatoes, but it was more than that. Probably because I still had my tray/bag strapped to the front of my chair, for a second, I was aware that I was the mirror image of all those people who I had seen at the hospital when I was on the neuro ward. The only difference was that my jaw wasn’t hanging loose, and I wasn’t strapped to my chair to stop me sliding off. I felt terrible, firstly, for even thinking such a thing, and secondly, because it scared me. Everything seems to be rushing at me lately, this latest mental muddling of fact and memory, made me feel even more as though I am racing into the future, one I felt only a few months ago was miles away. I know, I don’t need anyone to tell me, that I’m a long way from where those poor individuals had landed, but I felt a comparison, one that was too close for comfort.

Sometimes, our minds can take images like that and thrust them into a scary reality that doesn’t even exist, but it doesn’t stop you feeling and seeing them. I almost instantly pushed my back into the chair and thrust myself into a fully upright position. If the tray hadn’t been fixed securely, I think I might have flung it across the room in anger. Except the anger wasn’t at the tray or the chair, it was at life. It’s moments like those, that makes me sure, that I am in a grief like state, otherwise, I would have just shook my head at myself, and possibly laughed as well for being so silly. I actually wish now, that I had brought the chair out of the cupboard back in July when I first started thinking about it. If I had, I might not feel as bad, as I am sure it is a combination of my lungs, now needing twice daily care, and the wheels together, that has brought this whole thing on. Minds are contrary things, why can’t it just be happy that I am in less pain and that I can at least breath with some more ease. No, it has to get itself into a spin about losing control and needing more and more care all the time. Just to make it even more stupid, I am coping wonderfully with the chair and managing to do more and more almost daily. There is little that I can’t manage with 100% more ease than I did on week one, so why is my brain make life so hard?

My mood yesterday wasn’t helped by one other thing that happened. Having written a glowing statement about how I was feeling better and that my pain levels were lower, I went to bed on Thursday night and almost instantly, my lungs clamped. So, OK, runs of spasms happen all the time, but it has been over a week since that my chest literally just clamped solidly down. When it happens, it is always triggered by a run of intercostal and diaphragm spasms, then out of nowhere, someone suddenly sits on my ribcage and tightens it like a corset. Just like a corset, it is tight, but I can still breath as long as I keep those breaths shallow. Once more, I was lightheaded, with my pulse thumping through me. I was engulphed by the feeling that if it wasn’t for the fact that I had to keep thinking, keep making sure that every breath was perfectly measured, that I would pass out. My night time normality was back, along with the morning doubts over whether or not I had fallen asleep, or fallen unconscious. I know it was stupid to have even thought that I was going to be free of this, but it was the longest break that I have had for weeks and weeks. Being human and hopeful, is often the worst thing we can be. It often feels like the best state we can ever be in, is accepting, that way, disappointment doesn’t stand a chance.

I have often wondered if that is actually the reason that my life with illness has been easier than many peoples. From birth to adolescence, I lived in splendid Victorian obedience, no questions, no complaints and no free thought. I didn’t even dare to express likes and dislikes, I wasn’t allowed any, but at that age, you don’t question, you accept, as that is life. When I found a voice, they only heard it for less than a year, as when neither confinement nor abuse, restored my deference, I was thrown out aged just 13. It didn’t end there, though, yes, I had a window of fewer than three years of being me, but I ran straight into another life just as hard. My entire life through to the age of 28 had been once more one of compliance. I had learned that fighting back was pointless, things just got worse, but if I let life happen, I would survive to live another day, and survive it in less pain and misery. It may not be the right way to learn anything, but I learned to accept and if there is one thing that makes life with chronic illness easier it is acceptance. There is no point in fighting, you can’t win, you’re not going to win ever. Everyone who is diagnosed with a chronic illness quickly learns that their illness is invisible, others can’t tell you are ill just by looking at you. What most miss, is that you can’t punch an invisible foe, and you definitely can’t punch yourself, well at least not hard enough to make a visible impact. I recognised it with ease, and fell into line, compliant and obedient, but this time, still with a voice. My root to that conclusion may not have been conventional when it comes to illness, but I honestly believe, that for once in my life, accepting, was totally the right thing to do.

To date, I have been the perfect patient to my health. Everything it has thrown at me, I have worked with and accepted. Not always with good grace, I am not that lily-livered, well at least not yet, but I have done the right thing, not to nurture it, but to nurture me. Self-preservation is an involuntary act, but there comes a point where the balance is suddenly uneven and there is nothing you can do about it. Up until now, I have seen myself as a complete person with a future that isn’t one to be afraid of, it was too far away for that. My immediate future, well, it was to continue very much as is. I am housebound after all, what more could I lose? I already have been reduced to being in the ranks of the unemployed, not even being able to be a housewife by choice or otherwise. My life has polarised, I am sat daily in the same place, after spending the night, asleep in exactly the same position as I have slept in for over 2 years, flat on my back, unable to move. Every day starts at the same hour and ends at the same hour. Nothing changes, not even my range of foods, limited by what I can swallow and what my intestine can work with. I take the same drugs, drink the same liquids, move around the same 4 rooms that I have lived in for 8 years, unable to leave unaided. I see the outside world rarely, and when I do, it is at the bidding of the NHS, and with their assistance to exit my own home. All of this I accept, this is my life and once appeared as my future, but that’s now changed.

The image that jumped into my head, that is my future. I have always known that, always been aware, that my end wasn’t going to be pretty. A diagnosed off PRMS, take dignity from our final days, weeks or months, and all beauty is removed from death. It doesn’t matter how accepting or not I am of any of that, as I can’t change it regardless what I want, that is my written future. When my legs started to leave, I wasn’t ready to accept it, I don’t think I am really ready to even now. When I needed my chair the first time round, that was different, it gave me freedom, I could leave my home and go where ever it could take me. I couldn’t climb mountains, but I could explore the city, go to the pub and most of all, carry on working. It opened up the world. This time, this time it has changed nothing, only allowed me to continue, doing exactly what I was without it. It took, it didn’t give. It took that last bit of image, that tiny bit that said, I was me. Even my lungs need supporting, just so they can carry on, doing what they already did. To stay still, I am needing more and more, just to keep me here, stationary. My immediate future is going to be one of treading water, just keeping my head above the waves and waves there will be. The balance of my life has changed, I have entered that phase where life is about nothing other than maintaining where I am, but with growing and visible help. Never again will I just have to take a handful of meds and hope for the best, more and more of me, now needs direct action, just to continue. I don’t need to ask where that picture came from, or why, the reasons are clear. I just wish that like so many things, my mind had chosen to forget it, but no, it had to throw it at me, force me to face it, to acknowledge it and to hear it demanding, acceptance.

Please read my blog from 2 years ago today – 17/10/2013 – Asleep with more sleep required

I have had this idea now for a while that the next time life flung itself off a cliff that I was going to sit here and write, get it all done in detail as it happened. I wanted to take it through step by step, just how it felt and just…..

What is going on?

Posted on October 9, 2015 by livinginalimitedword

I’m tired this morning. That feeling of heaviness that makes your entire body just want to collapse and give up. It’s a tired that leeches all warmth, even when you sit in front of the fire to eat your breakfast, you’re still cold. Ten minutes of direct heat and the result, a warm front and a freezing back with nothing in between, and within seconds of moving, freezing again throughout. I didn’t sleep well last night. 4 am, when I woke desperate for a pee and feeling a pain I know all too well, that one that says somewhere in the next 12 hours, I will be moving my bowels. Why do they have to go through such an aggressive announcement period? Quite honestly, I don’t need more than a few minutes notice, just like everyone else in the world, but that would be too easy for my body. No, it has to ruin the one thing I need the most, sleep. Three and a half hours of lying in bed with only fitful sleep is enough to bring me right down the next day. Right now, despite the fact I crashed my way through the house in a desperate dash to get to the loo, once more proving that filing the top off my scab, has made it safe. Or the fact that I have had a meal and done all I can to make life right, all I want is more sleep, hours and hours of sleep. I may not run my life on a tight minute by minute routine any longer, but that doesn’t mean I can throw my day out the window, and just head back to bed. If I did, then the whole day will be a nightmare, followed by a night that wouldn’t be much better. So I do the sensible thing, I put up with the not so nice, to avoid the totally horrid.

This is the draining bit, the part of all chronic illness, that gives it, its bad name. Those days that often turn into weeks of feeling no more than half alive. I don’t write about them that much, as they are the drudgery of illness. Those parts, that none of us dwells on, as if we did, we would see no point to any of it. We brush it to one side and look for the good, even finding it and bringing out a smile for those around us. But inside, deep inside where it really matters, we are drained. To me, it is where life gets scary. It would be too easy to give in and to climb into bed and hide, in the hope that it will pass. No one out there, not even Adam, would blame me and that is even more scary. The world would allow me to wallow, in the mistaken belief that my health had reached a point where I had to stop and rest. The truth would be, that I was taking advantage of a situation and by doing so, I know that I would open myself up to feeling worse and worse. I don’t believe in this concept of fighting our health, but I do believe in not just giving in to it. Some while say, that it is a very fine line between the two, or that I am splitting hairs when I separate them, but it is an important difference. Fighting to me, implies an active aggressive act, something that I don’t have the slightest belief works. Aggression is a pointless response to anything that is bigger, stronger and more aggressive than you will ever be. It makes far more sense to stand your ground, work around it, with it and at times, even give in to it. You don’t beat a bully by becoming one yourself, any more than lying down and letting them beat the living daylights out of you, will stop them from coming back and doing it again. My body got the upper hand last night, leaving me feeling like death warmed up, but that doesn’t mean it has won, I’m still standing and I don’t intend to lie down.

Sitting feeling like a zombie isn’t a good idea either. For me, the only way that I have found that works and gets me through days like this is to keep going. It’s counter-intuitive, your tired, but you push yourself to do everything that you normally do. Even listing extra jobs, ones that don’t have to be done today, they could be put off, but by adding them to your to-do list, your plays the phycological game that illness really is. It is a constant case of outwitting it, rather than outmaneuvering it. By making life as close to normal as ever, there is just a chance, that you can jump your way out of the pit you are sitting in. I probably won’t have my shower this afternoon, but by telling myself that I will, well it means I have to keep moving, just to make the space required. If I slow down now, allow myself to just sit and stare at everything around me, or even just the screen, it won’t happen. I could be that zombie that wants to take over, I could sit here and type a few words here and there, eventually making my way to the end. Or I can kick myself up the backside and I can push those words to appear and my fingers to run, not dawdle. I usually land up somewhere in the middle, but that better than landing up still staring at my unfinished post an hour from now.

It is getting harder as time goes on, to find that inner strength to push myself. As I said the other day, my routine has been trimmed and trimmed and trimmed again. As there is a difference between the odd bad day, and a constant draining of life that doesn’t refill. You can’t push forever, that just doesn’t work any more than fighting does. Recognising which is which is hard. I found it almost impossible at first, and I probably did push for too long on occasion, but I did one thing right, I learned. Just as I told the MS nurse when he was here the other day, I know the point were outside help isn’t far away, but it’s not here yet. Neither is the point where I once more have to adjust my life again, but I have recognised from the last week, that I may need to start thinking about it. My body is screaming at me more and more that it just doesn’t want to play my games and the ones my illness is offering to it, seem like far more fun. Oddly, it is lunchtime that has reinforced those thoughts. The fact that I am not only content to stop and take a break, but happy doing it, is screaming at me. I knew that when I found myself within two weeks, mentioning it again. As you know my writing is more mental vomit, rather than thought out and considered facts. I sit here, turn the tap and brain flows out onto the page in front of me. Because I write that way, it all to often tells me things that I hadn’t either noticed or consciously considered. It threw it into my writing and has activated a train of thought that is clearly going somewhere.

I think I need more rest, not more sleep, but more rest. Time to just do, to be brainless and motionless. Time to relax. My body is forcing me to slow down in ways that I hadn’t expected. I thought that the next sign would be just like all the others, that I would go through a spell of being drained and washed out and never completing my day. That I would then like all the times before just trimming my routine and going on doing the same things as always. Suddenly, I have a need to do something different. To open up a new part to my daily life, but I don’t have the slightest idea what. I can’t spend an hour a day sitting in front of the TV eating. That would be disastrous in so many ways. My wheelchair has pushed me into making changes, ones that I wouldn’t have even considered without it. I am even finding an odd pleasure in my shorter breakfast break and my two 15 minute drug routines. I am at a loss as to what my body and mind are trying to tell me. I can’t stand just sitting around doing nothing, yet it seems to be what my body is responding to best and my brain, is trying to push me into doing. By being forced into doing things differently, I am finding physical and mental responses I never expected. I don’t have the slightest idea of where this is going, I guess time will tell.

Please read my blog from 2 years ago today – 09/10/2015 – Searching for the simple and normal

I made the single most horrible mistake the other day after my shower, I didn’t wrap the towel around myself tightly enough and I had the misfortune of being in front of the mirror when it fell away from my body, resulting in my…..

Finding peace with pain

Posted on September 4, 2015 by livinginalimitedword

There was something I wrote the other day that twigged something in the back of me head. Oddly, well not really that odd for my brain, I don’t remember what it was or when I wrote it, I just know that I did. The back of my mind is often the safest place for information to lurk, as there it isn’t being interrupted or written over by the activity of daily life. I have often found that this happens, it is almost as though I write something and a light goes on, then it grabs the subject with a smile and the knowledge that it will be the subject for me to write about in the near future. I guess the oddest thing is, I am not aware of doing it at the time, but I always know it’s been logged and I always know that I will use it within a couple of weeks. I nearly did the other day then I found myself locked into something else and it dropped back into the pending file, occasionally being added to and padded out just a little. The subject of my lurking friend this time was pain and how I see and feel about it now. I had written something about the grade of pain I was in and how these days that level was what I saw and accepted as “normal”. Pain, any pain, isn’t normal nor is it something that any of us actually truly needs to be in, so how does someone thinking change to the point where living on Morphine and still in pain and somehow find that to be “normal”?

Clearly there is a large factor of getting used to things, but even that doesn’t feel right and in many respects, that in itself is wrong. No one should be allowed to get to that point where it’s just part of our lives and to believe that’s the way it is. It actually makes me a little angry not just with the medical profession, but with myself. By the time they actually got around to finding the correct diagnosis, I knew that normal painkillers just didn’t work for me at all. I was beyond the point where an aspirin was going to make me feel better. Twenty years of living with pain had taught me already that relaxation was the only thing in my armoury that helped. It didn’t get rid of it, but it made it easier to bear and allowed me to handle it and life. So when I received my diagnosis, instead of doing what I should have, demand that they did something about the pain I was in, I continued to deal with it myself. Yes, they gave me drugs that they hoped would modify my condition and over the first 3 years we worked through the spectrum available. They did nothing, something I was later told was pretty much expected as it is one of the problems with PRMS, it doesn’t react like any other form of MS to meds. All they could do was to treat me for my symptoms and that was the first time that my pain was actually tackled. We worked our way through a range of painkillers, but whatever they gave me, the effects were limited. Even now, when I am living on a high background level of Morphine, I frequently have to take another high dose to deal with the breakthrough. The pain I live with still isn’t truly under control. So there is the history, but those are the facts, not the answer to my question. “How did I get to seeing this as normal?”

The answer to that is actually quite complex, but I actually think there will be a large number of people who will relate to it. When you are fighting everyone and I do mean everyone, friends, families and doctors, to get them to believe and not dismiss the fact you know you are ill, your whole way of looking at life changes. Without meaning to, you set up several different mindsets that you switch between. The first is that they are right, there is nothing wrong with you and it is all in your head. If it’s in your head, well you just have to fight it, to change that perception and to get on with life. Surprise, surprise, that doesn’t work. The second, forms because you don’t want to piss off those around you. When they don’t believe you are ill, constantly showing or saying there is something wrong, get’s reactions of annoyance, disbelief and even direct anger. You learn to hide everything. You put on a performance that keeps their anger at bay, which in itself makes your life not only easier but less painful. The third, well I’ve mentioned this one before. You convince yourself that if there is nothing wrong with you, then the rest of the world must be feeling exactly as you do. Everyone must live with the exact same level of pain as you do, therefore you are just a total wimp and you have to toughen up and get on with it. The fourth is probably the most obvious, that you have to be totally mad and the only thing that you can do is shut up before you find yourself locked up somewhere. The final one is the one that got my diagnosis on it’s umpteenth attempt. I am ill and I have had enough of been called a liar, they are going to listen to me. I am sure there are probably others, but these are the strongest ones that I am aware of and they are the three that I switched around within for years.

All of them, except the final, have one thing in common, you are putting on an act, an act that you have been involved in for so long, that showing reality is almost impossible. Even now, I hide, I can’t help it. Even when I am on my own, I will feel a shot of pain that would have many screeching and doubling up. I remain almost silent and hardly moving at all. I have become conditioned to my illness and what is often seen as my being strong, is actually just me hiding again. I am so locked into it that I am sure that I have made my life harder as even doctors don’t always believe me when I tell them how bad it is. I know that happens, it has happened a lot despite my diagnosis. Being stoic is a double-edged sword, usually with both edges facing straight at you all of the time. Unusually though, there are times when being stoic actually does help with the pain. It is such a phycological game that I am playing that the game itself gives me strength, and that strength, allows me to be still and silent, to breath through the pain, rather than go to war with it.

20 years of playing games, of pretending and acting my way through a world that at the time not even I believed was real, has put me into an odd position. I have learned to bear pain, pain that has and is without a doubt getting worse in line with the progress of my PRMS. It appears that my bodies reaction to my munching myelin monster is to cause pain for every new munch. To be able to see pain as “normal” is actually an advantage to me, if I didn’t, I would be screaming and crying all the time. I believe, that I have to be able to call it “normal”, otherwise madness would be my next stop. For some reason, we seem to be programmed with a need for normality. I think we need to be mentally comfortable with our lives, otherwise we are living an abnormal life and where is the comfort in that. I guess that is why “normal” is a personal thing, but I would go further and say that “normal” is a desirable thing and without it, we are living in turmoil. I have become calm, accepting and totally at home with my pain. That doesn’t mean that I like it in any way, it just means that I am at peace with the life that I live and it shows. It has also played out to be an unexpected ace card. I am now in the position that when I tell my GP that my pain is beyond what I can deal with and that I want my background level of Morphine raised, he doesn’t argue, as he knows that it is really needed if I am actually asking.

I have heard it said that you can get used to anything. I suppose that my life is sort of the proof of that statement, but I think it is a statement that only touches the surface. We all have a mixed relationship with our health, but it’s our health and when you can’t cure it or change it, you have only one other choice left, to accept and embrace it. I guess that is one thing that isn’t a game or an act, it’s my reality.

Please read my blog from 2 years ago – 04/09/2013 – New life

Almost every time I think this is it, I have done everything needed and I can just go back to enjoying my PC, it points out something else that still needs to be rebuilt. The new drive was installed with ease as where window 7 and the Alienware Software, all of that was done yesterday afternoon and I spent right through until 9pm updating both……

A gap in the fog

Posted on August 1, 2015 by livinginalimitedword

It’s odd how you can feel so good and yet so bad at the same time. It’s been such a strange week, my brain has been the clearest it has been for a long while, but my body has been taking every opportunity to show me what life with chronic illness is really about. It’s perfectly normal for me to be wondering around totally uncertain of where I am going or exactly why, or just to be sat here staring at the screen with no idea of what I am supposed to be doing. Don’t get me wrong it hasn’t miraculously vanished, if only, it’s just the fog doesn’t seem quite so thick. I have no explanation as to why my mind is that tiny bit sharper, it’s, really an odd feeling especially as I haven’t felt it for a long time, but I feel it. The rest of me, well it all feels as though the improvement in my mind has been paid for by a down step in the rest of me.

Every day in the past week I have been fighting with a body that just doesn’t want to behave. My legs have been a constant problem, letting me down over and over again. I have to date been good at covering any issues, but Adam has twice spotted that I was unable to move simply because one or both of my legs weren’t able to take a step in safety. Once again the worst point is when I first stand up. I may have made it from sitting to standing, but there is either no way of taking a step or I get a spasm in my lower back that shocks me into inactivity. It is as though I am frozen to the spot and I have to hold onto something as the pain has a habit of shooting right through me. It honestly isn’t possible to move at all, I have tried in the past and the result is either no strength in my legs, meaning that I am either in danger of or do actually fall, or I cause the pain to get worse. Neither are exactly my first choice. I can’t even sit down again, all I can do is stand there and wait for it to pass, as it always does. At times, standing up has even triggered a similar effect in my arms, which is really not helpful as I honestly need them to steady myself. That usually only happens when I have been sitting on the settee, hunched forward to make it easier to breath.

This whole week has been one without strength. I have lost count how many times I have been defeated by a ring pull, or even more pathetic been unable to remove the paper seal over the top of the milk bottle. The most stupid things have become a battle zone. Add in my normal poor dexterity and at times I have just wanted to give up. My left arm has been weaker than my right for a long time, but both are of little real use at all just now. A small package arrived for me the other day, it arrived in one of those white padded envelopes which have a red stripe to pull to open it. After four disastrous attempts, I had to take the scissors to it, it took me several more attempts with them, simply because I didn’t have the strength to even use them. Once through the envelope, I was almost at screaming point to find the enclosed item, inside a thick sealed plastic bag. On the scale of pathetic, I felt as though I had fallen off the end. Even on those things that don’t take strength at all, I have struggled badly at times. You don’t think about strength and things like feeding yourself or typing, but when your muscles fail, it affects everything.

The one thing that no one but me could ever notice is my eyesight. Having said that, I think Adam did spot it the other day. I was simply trying to read something of the TV, sky has this horrid habit of backing everything in blue then putting small yellow or white print over it and even with my glasses, I now struggle big time. Experience has told me that the option can’t really help anymore than they already have. I can’t use my glasses here at my PC as if I do, they turn the screen into a worse fuzz than it normally is. I do have glasses to use when sat here, but they mean I can’t see the TV at all. I haven’t been able to make out faces on the TV that well from sitting here for ages, recently they have vanished even more. Now if two people have similar hair, I have no idea which is which any longer. Bifocals just don’t work for me so I am left living in a fuzzy existence whatever I do.

Everything just seems to have taken a step-down and has managed to make itself known. It’s not like I have suddenly developed something major or new, just everything is that bit worse. My chest is tighter, my breathing more difficult, my stomach is once again causing pain that stops me dead and just because it can, it takes my breath away. The Psyllium may be letting the contents of my intestine move forward and eventually out of me without effort, but it hasn’t dealt with much of the pain. It doesn’t matter which part of my body that you might choose, all the pain levels are just that little higher than it has been for a while. It’s not like I want to dive into my Morphine for a booster, it’s more like my slow acting Morphine isn’t quite holding it at bay. Every sensation that can be felt has triggered at will. Pain, burning, pins and needles, numbness and anything else you can name has appeared in the past week. All of this together has been the reason behind the searching I have been doing over the past few weeks into what it is that drives me and how I feel about it. It has had a really positive effect, one that both Adam and Jake have noticed and found it so marked that they had to mention the fact that I am bright and chirpy respectively. It doesn’t take a genius to work out where that has come from. My mind is once again at rest about where I am and what is happening to me. As I said, “It’s odd how you can feel so good and yet so bad at the same time”. It is odd, but when your mind and your body are in such totally different places, understanding it isn’t that hard.

I really did need to recenter myself if you like. It’s too easy to just forge forwards, to not questioning what is happening or checking how we feel about it. I hadn’t stopped for a while now and just asked the simplest question of all “Am I happy?”. I wasn’t, I was letting myself disappear under the pain and trials of my life and I wasn’t listening to me. Not my body, I listen to it all the time, but I wasn’t listening to me and I was vanishing under it all. Yes, I am brighter, I am more chirpy because I am here again and in control again. I know where I am going and what is happening, I can’t control that, but I can control my happiness. There are so many elements required to be happy, being in control, having plans, setting goals and having achievements and not one of them is affected by our physical pain, weakness or strength. All of them come from our mental well-being, something that is easy to ignore, especially when you live within a fog.

Please read my blog from 2 years ago – 01/08/2013 – Just not getting there

6am, I was awake, I am never awake that early but a pain in my left heel was screaming at me and 2 and a half hours later, well it calmed down but it is still there. I am making a huge guess here, but I think it is pressure point pain. I have had spells of it before but never in such