One last time

At the minute, I feel as though all I am doing is complaining about one thing or another. Which honestly isn’t the normal me. It’s just at the minute my body has switched into hyper drive and takes great pleasure in confronting me daily with some issue or another. I honestly don’t know when I last had a day, where I can say my life has been normal. It has been a slow ratcheting up process and I know where it all started, as the base problem is with me every single day. The pain and discomfort in my abdomen was and still is the start point of every day. I haven’t been free of it now for over three years, but it was livable before, now it consumes my whole day. I am constantly shifting trying to find a way of shifting the pain areas or relieving the discomfort. The third batch of tablets that my GP prescribed have reduced the spasms dramatically, but the spasms are only part of the problem. It is the constant pressure and feeling as though one area or another is about to burst, that really gets to me. Once again last night, just before midnight I woke ready to throw up, but through a process of relaxation and breathing, I managed not to. I don’t know what it is about that point of the night, but every time I have thrown up, or been close to it, has always been just before midnight, eight hours after I last ate. Luckily this morning, I went to the loo, so it has reduced the pressure slightly, as always, what I passed was normal and it’s transit painless.

It goes without saying, that when you have problems like that with your intestine, you are going to have issues with your bladder. It’s either pressure that keeps you running, or blocks all real flow. The antispasmodic drugs mean I am having, even more, problems emptying it. I know I should just give in and use a catheter but as long as I can manage I will. I’m not getting any messages that it needs emptying and when I do, well it dribbles, flow, stop, dribble a bit more, stop then gush and so on. I am wasting more time in the bathroom these days than I care to think about, even more, in the energy draining trips required to get me there and back.

It would be bad enough if it were just my lower abdomen, but as always when one thing is upset, it upsets others. From my written history, it’s easy to know that it always upsets my breathing as well. The constant pressure from my stomach causes both diaphragm and intercostal spasms. My PRMS already causes me enough daily issues with the entire mechanism of breathing, without added extras. I had until a couple of weeks ago been really quite happy with my lungs. They weren’t perfect and I know they never will be, but I was content. Now I have sporadic pains appearing throughout my lung cavities, as muscles within them respond to the constant compression, all of which means that my oxygen levels are all over the place. At times, there is no doubt, that that is what is behind the lightheaded almost drunk sensation, but not at others. It is a feeling beyond a need to sleep, it is almost a desperation that is too hard to fight, but I do, especially in the evenings, as those hours are my highlight, the time I won’t let my health get in the way of.

As all of us know who have MS, if there is something going on in our bodies, whatever the source, it triggers our screwed up nerves. Thanks to the pain, the pressure, the difficulty breathing and anything else you can think of, my entire body is permanently alive with warped sensations. Every nerve seems to be alive and transmitting back whatever it chooses to at that second. Most of the time, it is nothing more than a gentle buzzing sensation, which shifts around my body, area to area. Frequently, it will simply consume me, holding me in a bubble of frenzied activity, then die away again, returning to simply passing the message to its neighbour, before resting a while and waiting to once more join in. That doesn’t sound like much, but when it’s constant, when the only peace that you can find from it, is when it is replaced by another bizarre sensation, or you attention is grabbed by something happening somewhere else in your body, it drains you. It also appears to me, to be behind another annoying symptom, the tremors. Frequently I have found that when the buzzing sensation becomes intense the muscle responds by twitching and jumping. They become hesitant in their actions and miss fire extravagantly, possibly amusing to others, but annoying to anyone who has to live with it.

I’ve been through all of this time after time, after time. All of these symptoms I know well individually, but when it turns into this clamour of activities, well it always comes down to my intestine. I know that if I could just get it to settle down, to return to its norm of odd spells of pains and discomfort, then that the rest will settle down too, but nothing is working. I quite simply don’t know what to do. How can an intestine that isn’t constipated, or actually even if it was, cause so much trouble? I’m waiting for what will be my third round of seeing a consultant. So far, not one has fixed it, one helped a lot by removing my constipation, but this pain has gone on for far too long. I don’t know what the answer is, but there has to be one, but until I see the consultant again, I promise not to complain and moan about what my stomach is doing to me. Well, not unless that damed pressure actually explodes.

 

Please read my blog from 2 years ago today – 29/03/2014 – Time together

For the second night in a row, I went to bed early and I slept like a log, normality for me as It only takes my head to touch the pillow and I know nothing until the alarm sounds. I count myself as so lucky that sleep is my peaceful escape from everything, yet I can’t help equally to curse it for taking so much of my life from me, so many hours wasted and gone, without the slightest memory of even one. I know I must dream, but for me it has always been the case that I just don’t remember them unless something really odd happens. My hours of sleep are like someone just switching me off, then eventually on again many hours later. It doesn’t matter how many times I tell myself that my body needs that sleep, going from a person who used to sleep……

 

 

Above and beyond

I made a breakthrough last night and it came in a way, I never expected. The pains in my abdomen were so severe, that I, myself, was beginning to think, that an ambulance might be a very good idea. There was no bloating, no feeling that there was anything there, other than what I had consumed. The pain had shifted from imitating first stage labor, to full on second stage, just not quite in the right places. Some of it was low down, but the bulk, was in the middle and yes, across the top and into my back. By the worst of each wave, it had taken over my entire abdomen, from my pelvis to my shoulder, and I could feel it right through my body as well. Each wave varied in length and with each, I found myself naturally controlling my breathing and rubbing my back. By early evening, the pain was causing me to break into a sweat and to feel sick. I tried an anti-nausea pill, but it didn’t touch it, which told me, it was the pain, not anything else.

At 8 pm, it was time to take my meds, but, I couldn’t trust myself, that I wouldn’t throw up, so I took the decision, to make myself sick. I couldn’t believe what I threw up. It was 4 hours since I last ate, so there shouldn’t have been much there, but I found, at least, a liter of liquid, mixed with almost everything I ate at 4 pm, but no psyllium pancake. The pain didn’t change, but the nausea vanished, and I took my meds with ease. I sat with Adam and we mapped out a timeline, not just of what has happened this week, but right back and we think, that my splitting the dose of my psyllium pancakes into two, and raising the dose, could be behind some of it. We think what is happening is the first is causing a plug if you like, that moves forward slowly, not a problem with 24 hours between them, as overnight a gap is formed. But if a second is added 4 hours later, well then there is nowhere for anything that follows to go. So, I am backtracking 100%, as of today, I am back on the dose I was on 4 months ago. It’s going to take a few days for my system to clear through, and at this second, I am in bad pain again. There is nothing that I can do right now, but put up with it, but just having a plan, somehow helps. If in a weeks time, I am still like this, then I will phone my doctor. I’m waiting because if I’m still like this, then I will be able to say that there has been a huge change, in what is going on and without a doubt, I can’t live like this forever and whatever the solution is, I want it.

I know that it will sound stupid, but I quite simply haven’t been putting two and two together lately. I have been feeling so rotten and so tired in the last month, and for some reason, I haven’t been associating the fact that this pain is most likely, behind at least part of that. Because it’s been all centered around my guts, I have continued with it, in silence most of the time. When I saw the consultant who put me on to the psyllium, he was quite open, that there was nothing he could do about the pain. Until recently, his solution has worked. I was never free of the pain, that was just one of the things that was part of my life, so I lived with it. There have been many days when things were just as bad, as they have been this past week, but, they were just days and they passed. When it changed and became once again difficult to rid myself of my intestinal contents, not because I was constipated, once they move, my stools are perfect, but because there just wasn’t any movement, I did what I thought was logical, increase the dose. I was trying to increase the bulk so that it would move, but all that extra bulk is doing, is causing me more pain, but I didn’t see that either.

It appears that intelligence doesn’t grow with age. That it doesn’t matter, how many years you pass through, when it comes to stubbornness and that stupidly taught stoicism, they only increase. Just because someone says “there is nothing they can do about the pain”, it doesn’t mean, that you have to put on a smile and live with it. These last few months, that is exactly what I have been doing and where has it got me? Somehow, I have separated the pain in my abdomen, including my chest, from the pain in the rest of my body. Why I have separated them, I don’t have the slightest idea, as the cause is exactly the same, my PRMS. Yet somehow, I decided that the results were two different things. When I contacted the Doctor last month about increasing my pain relief, I still wasn’t including this pain. I was looking for help with the rest of me, and that was exactly what I got. As I said yesterday, pain isn’t just pain, there are so many different sorts, and so many different locations and just as many cures. The Gabapentin deals with pain caused by nerves, this isn’t nerve pain. This is the pain from good muscles trying to compensate, for muscles that no longer work. They are having to shove like hell, to move the contents past the dead zones, and that also hurts like hell. The answer, I don’t have a clue. As my consultant said, the psyllium provides the bulk and the lubrication, it can’t do the work of dead muscles.

So right now, I am writing because I don’t know what else to do to take my mind off the pain, but as you can see, not even this is really working. Every time I have tried to pull away from “it” as the subject, I have landed right back there. I don’t have the slightest idea now what to do, as I have taken right up to my maximum dose of Morphine and although lessened, the pain is still here, still hurting, still draining me. As Adam is at work, I don’t have to sit here with a smile on my face, I don’t have to pretend that nothing is wrong, but oddly, I’m still sort of doing so. Even now, I can’t drop the act, it’s part of me, it is me now. That’s the problem when you’ve been ill this long, it’s actually really hard, to know where the real me starts, and the act takes over, or is it possible that I have been ill that long, that it no longer matters.

 

Please read my blog from 2 years ago today – 27/02/2014 – Hypochondria?

This is day 3 so I can now say with confidence that I have a mild dose of Bronchitis, the important but odd word there is “mild”, I’ve never had a mild dose in my life. I can only guess that my meds for my COPD is holding it at a low level, so I am just going to wait and see what happens, not point…..

 

 

 

 

 

Words to live with

It’s been a tough week, I’ve spent all of it locked in a battle, which, although I don’t intend it to get the better of me, it is wearing me down. Those who know me well enough will have spotted, that something was up. I too have noted that I have been clearly picking subjects, that said little about the now, this very minute. It’s not that I am trying to deny that it’s happening, it’s just I know how tiresome it gets when someone goes on and on, about the same single thing, especially when it doesn’t really change. That’s what makes it such a battle, it doesn’t matter what I do, I am in constant pain from my stomach. See, I told you, it boring. So I’m not going to go on about it today either, it’s more an update, a note to say that it’s now three weeks, since I last had a straight six hours, without the level of pain, that makes me reach out for the Morphine. Nor, have I had a single day, where sleep hasn’t been on my mind, far more than I remember before, two things that I am now convinced are locked together. Tomorrow is the start of week four, I just hope that if I need to make an update, it will be to say, that at last, it’s settling down again.

I’m starting to truly hate that word “chronic”. It seems to have snuck its way into every corner of my life, almost everything seems to be “chronic”. The only good thing, the things that 14 years ago at diagnosis, were then counted as “chronic”, mainly don’t bother me at all now. I’m not saying they are gone, they just don’t bother me. That’s why I say that it’s a sneaky word. What it does, is attach itself to something, then it starts looking for the next step above. It’s not even bothered if it’s the same symptom or something totally different, it see’s it, and it want’s it and just like most petulant children, what it want’s, it normally gets. Each step it takes, well it forgets about the one before, because it’s got a new toy, that’s bigger, brighter and more painful or annoying than the last. I’m never been sure which is worse, pain or annoying. In some ways, I’d actually say annoying is wins that match. Painful, well it can be treated with meds, relaxation and sleep. Annoying, just eats away at you, hour, after hour, after annoying hour. Right now, on the annoying scale, the winner has to be my legs. They died a couple of weeks ago now. Well, I think it’s a couple of weeks, that’s the problem with annoying, they appear and become part of our lives. Days, weeks, or even months pass without count, they just are, before you know it, it becomes part of your life. As I said, I am sure that those things that were “chronic” 14 years ago are still there. It’s just, that they are so much part of me, that I no longer know they are there, or that they are wrong.

We have all heard the classic story of the person who on visiting their doctors, forget to mention, this or that. Well, that isn’t just bad memory. It’s because what some might see as wrong and needing to be fixed, are just so much part of us, that when the doctor asks “How have things been?”, we say “Fine”. It’s not habit or forgetfulness, it’s because this horror story called our lives, is “fine” and “normal”, to us, it is us. If forced, I don’t think there is a single inch of my body, that I couldn’t find something bad to say about, but to me, it “normal”. We aren’t as dotty and as daft, as some think us, we just have a totally different way now of measuring our world. Think about it, how many seconds after putting on your make up, or a hat does it take for you to forget that it’s even there? Well, it’s the same thing, just on a bigger more permanent scale. I have heard so many people tell me that they will never get used to this or that, ask them even just a few days later and there is this moments where you can see in their eyes, that they are having to think. They have become used to it, it has seamlessly slotted itself into their lives.
Not being able to feel anything other than numbness in the majority of my legs, is a normal everyday thing. “Annoying”, but “normal”. Most of the time, unless I am drawn to it for some reason, like it being so intense that it if feels like it has frozen its way right through to my bone, I almost forget about it. It hasn’t gone anywhere, it’s just in a quieter spell, or I am deeply distracted enough for it not to dominate.

It has been such a long time now since I felt what most would call “normal” that I honestly, don’t think I can even remember it. I don’t actually think, I can even imagine it any longer. My body, is just my body, and the things that it does to drive me up the wall, are not exactly expected, as I honestly don’t know what it will do next, but I do know it will do something. Every movement I make has some sort of price attached. Messages from my nervous system are so screwed up and so sensitive, that anything, even just a single breath, isn’t just about air, it is about, what every nerve involved, thinks it feels. A breath doesn’t start and end with the pain from my diaphragm, or intercostal muscles. There are thousands of nerves in that process, from the ones the air travels over in my nose, throat and trachea, to those on my skin that should, just feel material on skin, but often finds sandpaper, fire, ice, and numbness right next door to each other or at the same time. My nerves have been turned up to 11 for so long, that I couldn’t even tell you what 10 feels like, all I know is I often wish I could feel nothing, oddly, though, that something I equally fear.

I doubt in reality that there is anything that my body can do, that it hasn’t already done. Those things I often say are new, aren’t really, they’re just a variation on the theme, but that what “chronic” health is, a variation on good health. Admittedly, it’s a rather unpleasant variation, but it’s one you get used to, no matter how unpleasant it gets. We all learn to live with whatever life throws at us, which is very different from liking it, but we live with it, what other choice do we have. In many ways, I suppose not being able to remember “normal” is a blessing and the reason that the longer we are ill, the less we bother to tell people that this or that is causing us a problem. We’re fine, because what else is there? To annoy everyone by being honest, to make ourselves depressed by dwelling on what can’t be changed? I don’t remember taking the decision that I was “fine”, but I do remember that I decided that I had to accept this odd life as “my normal”, as otherwise, I was simply going to make my health worse. I doubt if there had been a film of my life made as it happened and if you sat and viewed it, that many would reach this point in my life and find anything “normal” about any of it. To stay sain, I had to see it as “my normal”, so it only makes sense that I see my health in just the same way.

Please read my blog from 2 years ago today – 12/12/2013 – Awareness

The last few afternoons I have been dealing with a common problem with a twist, “Google madness!”. You know when you set out to do something incredibly easy on-line to only find out it is a total nightmare! It isn’t what…..

 

 

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……..

Even equations lie

It’s amazing, how when you stop just adding two and two together, to make a nice neat four and actually start looking around for the possibility, that there is another two lurking somewhere, that you actually start finding more and more of them. Unfortunately, life is seldom ever just neat little packages. There always seems to be those other strands of thought, that really should be included in the equation. Yesterday’s post really helped me to remember some of those fine lines of self-knowledge that get forgotten over time. I have often wondered if there would be any purpose in my actually going back to the start of my own blog and just reading it all, from start to finish. Part of me says that it is surely pointless, as I have lived it and written it, I know what is there. But there is another part of me, that fully realises that we all change, even in a tiny window like three years. I wonder if I did read it all, would I be surprised or disappointed by the thoughts and conclusions that I drew as I was learning to live this way? I know for sure that there is two thing that I would find. Firstly, disappointment, and amusement, at my learning process of how to write. Secondly, loads of little numbers, all waiting within my thoughts that I missed at the time, just waiting to be swept into my personal equation of life. All too often, I find myself writing when I am wrapped in pain. As you might have noticed, I don’t plan out what I am going to write about. I sit down each morning, come up with an opening line and then empty my brain onto the page. If you do that when you are in pain, the result is often filled with truths, that at the time, you simply don’t pick up on yourself. I know that both of those are true, simply because I have had cause occasionally to read a day from my past.

Despite the fact that the last month has been filled with symptoms running wild in different parts of me, my overall pain level is lower. Apart from moments of intense pain, on the whole, it has been manageable. Even the number of booster tablets I have had to take, have been not just halved, but quartered. I think that alone has added to my soul searching and inability to make sense of what has been happening to me. I know, you would think that with a clearer mind, and a body not in blinding pain, would make life easier. But when extreme pain and Morphine is your daily normality, life without them, feels vast and odd, so odd that I can’t even find the words. Even right now, when I am sat here with a diaphragm that has been in almost constant spasm for the last 48 hrs, if not longer, my pain level isn’t anywhere near where it normally is. I don’t understand it, it is so alien, that I find myself constantly questioning it. I have even found myself prodding at it, trying to trigger normality, but lightly because I don’t really want it back. Just a handful of weeks ago, I was considering phoning the doctor, with a request to raise my control Morphine dose. I was taking so many boosters, that I could only conclude that my twice daily dose of 70mg just wasn’t high enough. Now, I am quite content with them just as they are. The only thing that has changed in the same period of time, is the introduction of my wheelchair, the thief of my legs, and my new lung meds. One, or a combination of them together, has made a huge improvement in my life, but I am completely screwed up by it.

I remember writing a post a long time ago, where I posed a question about suddenly being cured and how I would cope with such a possibility. Clearly, on the surface, it sounds like a wonderful thing and those who have never been iller than a cold, would expect that I would step outside straight away and go and get a job. That is a shallow conclusion. I know for me, without a doubt that being cured, would be just as traumatic as being diagnosed, and a lot of people agreed with me. With a little considered thought, I am sure you will understand why. In some ways, this change in my life is contained in that same thought patterns. Losing the use of my legs is huge, even though they filled my life with danger in every step and I lived my life stressed by it. The fact still remains, we have legs to walk, I have legs for what purpose, two or three steps in safe areas, to complete my transition from one place to another. That’s not legs, that’s an aid. I might have walked nowhere other than around my flat, but I walked. Now, I don’t and that is emotionally painful. As I concluded yesterday, that is a reason to grieve.

So here I am safe, on wheels that I am at one with. That carry me everywhere I want to go, without banging into anything and have given me a new lease of life and freedom. That has reduced my pain levels in my legs, reduced my fatigue levels and seems to be a boon in every regard. Yet, I am still grieving my loss. If you still don’t understand, think of it this way. It’s like buying two puppies and one dies. No matter how much you still love and enjoy the one that lives, you will grieve for the one that died. This is just the same, but I haven’t lost a puppy, I have lost half my body. In the midst of that pain, I have a two huge improvement in my life. First, my chair, but second are the new drugs for my lungs. I actually didn’t think of that one until today. They are keeping my lungs more open. It is only when my PRMS throws one of it’s mad fits and clamps my lungs tightly, that I now find air hard to find. When they are milder, I can feel a change, I can get more air without having to fight with them in the way I did. There also used to be spells when oxygen felt reduced, I can only guess they were caused by smaller deeper and more internal spasms, where pain isn’t registered the same. Although still there, I don’t seem to have so many unaccountable spells of feeling short of oxygen for no reason. One of the inhalers that I use is a steroid. I know there are loads of different steroids and they don’t all do the same, but I can’t help but wonder, if that is somehow helping not just my lungs, but my PRMS in general. Steroids are one of the drugs used when I have a bad flare, it’s just a thought.

Yesterday, I added two and two and it equalled four. Today, I have added and added to that equation, as I said, life doesn’t happen in neat packages, there is always more to it. I am sure, that I if I sat and thought about it for longer, I would add more and more, but they would truly be small and would have nothing like the impact of the others. My normality, has been challenged, ripped apart and left in pieces, no matter how much better life is, when it is so different that it doesn’t even feel like your life, you will be left wanting answers. Questions, have one odd habit, instead of giving you just a goal to head for, they are like rabbits, constantly breeding. You deal with one and another is bound to pop up. I think if I did read my entire blog from the start, that too would be the result, so many questions that I didn’t really answer at the time and disbelief, at some of the ones that I did.

Please read my blog from 2 years ago today – 15/10/2013 – Taking the dream

You can sit all day, wondering and dreaming about what will never be, but it never really gets you anywhere, as dreams come in different shapes and sizes. I even once believed Adam’s dream that a cure would be found….