Tag Archives: Invisible illness

I didn’t see it

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I awoke this morning with the oddest feeling. It’s not the first time I have felt it, and it never stops being unsettling whenever it appears. I woke at just after 6 am, thinking that I must need to go to the loo, as I often wake around then for that reason. Before I even sat up, I knew something was wrong and I decided to lie there for a moment while I tried to work out how I was going to move. The best description I can put to it is to say, that I felt as though I was going to pass out. I was sort of giddy and light headed with a really strong feeling that unconsciousness was a second away. It isn’t just a sensation that I would say was just in my head, it affects my entire body. If your limbs can feel dizzy, well that is how I would describe them. Light, tingly and unsettled in any position that I place them. They are heavy and move in jolts, and once motionless, the feeling of movement continues. I have been hit by that feeling frequently, but I have never felt it start when I was lying in bed.

As I said, I thought that I had to head for the loo, so I had to get up. That movement, to sitting on the edge of the bed, caused my head to swirl in a way that left me nauseous, and with a desire to collapse, instantly. It was actually a very desirable feeling, I know that sounds nuts, but I truly thought that if I just did, I would feel better. Once I was on the move, I became aware of this racket going on in my head. I would describe it as a mechanical whirring, it wasn’t tinnitus, I’ve lived with that for years, that is in your ears, this was in my head. I made it to the loo in my wheelchair and quite honestly, I don’t think I have ever been so grateful for having it. When I got there, my bladder refused to empty. That too happens quite often, but as I was feeling so bad, there was no way I could manage a catheter. All I could do was return to bed and hope for the best. Another sign of how bad I felt, I didn’t even consider have a quite smoke in the kitchen.

Before I knew it, the alarm was telling me it was 8:30, and time to get up. I don’t remember going to sleep, getting into bed yes, but going to sleep no. Two and a half hours further sleep had changed little. It wasn’t quite so intense, but it wasn’t better. I sat here for about half an hour, answering my overnight tweets, then went for breakfast and to go through my morning meds. By the time that was all done, I actually felt a lot better, but it didn’t last. By 11 am, I was once again not feeling myself. I have lost count now how many times I have gone through something like this. I would have called today exceptional if last week hadn’t supplied me with a far worse example, I just didn’t write about. I often find my body being taken over and my mind filled with intense noise, confusion and a desire to pass out. It doesn’t just happen only at night, but sometimes, it just appears out of the blue during the day, without any prior episodes that day. I know that I have mentioned it a few times in the past, and I also know that if Adam had seen me this morning, he would have been worried, just as he has been in the past, so clearly I equally look wrong.

This is where I award myself, the prize of “idiot of the year award”. I can’t believe just how stupid I have been, especially as I now know that I have at my fingertips, the instant cure, and I could have saved myself numerous hours of hell. I honestly never once put two and two together, and worked out that the root of my problem is my COPD. Whether it is my PRMS causing spasms I’m not overly aware of or just my Emphysema, I don’t know, and quite honestly it doesn’t matter. What matters is my oxygen levels, yes it is that simple, lack of oxygen. The cure, well take your pick, I have a nebulizer and I have inhalers, all of which would have helped me. Not once have I ever thought of checking my levels or to use those meds as a way of curing faintness, hence the “idiot of the year award”. I do have one other excuse, other than stupidity, my PRMS does cause both dizziness and nausea, the very symptoms I have been putting the blame on.

I guess that it is because I have had Asthma all my life, that I didn’t think of it. To me, you only use your inhalers, when you can’t get your breath when you are literally gasping for air. I haven’t been gasping for air, that only happens when my chest closes down on me and getting air is painful and it hasn’t been. In fact, I now always breath on the shallow side because of my diaphragm being tight all the time. I have been keeping my oxygen monitor in the living room, so it hasn’t been at hand at night, nor have I thought about using it when I feel like this during the day. It wasn’t until it came back at me this morning that I first thought of checking it and there it was oxygen down at 88% dipping between that and 84%. I don’t know what made me think of it, but I went and used my nebulizer, my normal of 91% returned. I have been sticking to using it twice a day as a stabilising medication. I had been told that I could use it as often as I needed it on top, but again, I’ve only been doing so when gasping.

In fact, if there is a stronger award I could think of, I would award it to myself. I just can’t believe that I have been living like this, when if I had a brain that engaged with facts, I didn’t need to. Somewhere in my muddled head, I quite simply haven’t been thinking straight about any of it. From here on in, I don’t care what time of day or night it is, I will be using my nebulizer, rather than wishing I could just pass out.

 

Please read my blog from 2 years ago today – 13/04/2014 – There is no place like home

Sundays are always here always start the same, quiet TV programs and snoring, strangely, I wouldn’t have them any other way. There are so many things that start out annoying us and land up being those strange little comfort zones, the places that if for some reason they vanished, would leave us feeling that bit poorer, that bit less at ease with life. Life somehow needs those constants, those things that happen without any effort or intention, but if they changed or ended, there would be an emptiness that nothing else could replace. I might complain at time when…….

Different sides

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To my Neurologist, I am having “MS Hugs”, to my Respiratory Consultant, I am in danger of dying at any minute. Which in anyone’s book, are vastly different descriptions. I don’t know who named it as such, but I long ago was left with just this growing desire to find the person who named it as an “MS hug” and slap them. A “hug”, is something so special that it doesn’t matter who gives us one, it has a healing effect. An “MS Hug” is anything but healing. The first time I had one I hadn’t actually come across the phrase, all I knew was that I suddenly felt as though I had a vice tightening around my chest. Eight years on, for me it has become the most dangerous of the plethora of symptoms attached to my health.

Regardless what form of MS you have, all of them can produce a “hug”. In reality, I suspect that anyone alive could actually experience the mildest version. If you aren’t that fit and suddenly decide to run, well that pain between your ribs, the one that stops you from moving, that is a mini hug. In its most basic form is a quite simply, a spasm in the muscles between your ribs, the intercostal muscles, which does mean you can have a single sided hug. When put in those terms, it doesn’t sound like much, but what few of the descriptions I have come across don’t tell you, is an “MS hug” can appear in any part of your torso and it can also be of unbelievable strength. As you might have guessed, today is a day when I am being troubled by my version of an “MS Hug”.

Long term readers already know that one of my other conditions is COPD. I actually have Emphysema, but on the good side, it is more than livable for someone who does nothing. I don’t exactly go mountain climbing or run up and downstairs all the time. I, unfortunately, have a double whammy, my PRMS decided to get in on the game. If you think about it, the whole process of breathing is controlled by muscles and every muscle is controlled by nerves. If you look at one of those pictures of a human without skin, you will see with ease that there are a lot more muscles involved other than the intercostals, when it comes to breathing. Every single one of those muscles is now causing me problems when it comes to breathing. The biggest and most important is the diaphragm, this muscle is causing me problems almost every hour of every day. It is rare now for me to be without an abnormal tightening, a feeling as though it has been wound tight and can’t operate normally. Add in spasm in my intercostals, and more dramatically the large plate muscles that cover both the internal and external of my ribcage, and breathing can get really difficult. As I said earlier, “hugs” can appear not just around your chest, a few months ago, I started to feel them much higher up, just below where my neck joins my chest.

I felt it was important to give a fuller description of what is happening to me, and how my PRMS is causing problems. As I said in my opening sentence, the two consultants involved would look at what is happening in two very different ways. I’m not aware of others ways this can occur, but as most people, I know about what is happening to me, not in detail to the million other people out there. It does, though, highlight just how easily one condition can cause problems, which mean we have to have it looked at by a completely different set of specialists. I put up with the “hugs” for years, simply because I saw them a problem caused by my PRMS, therefore, no one could help me. I was right and wrong at the same time. Neither set can stop the “hugs” doing what they do, but the Respiratory Consultant, have me on a range of medications that are keeping my actual lungs, in as good a condition as possible. I have written before about the inhalers, the nebulizers and so on which I take daily to keep my airways as open as possible, so when I do get a full on attack, so far, I have been able to breathe well enough to stay alive. I do have to add here, that so far, I have only ever had a handful of attacks that I have found myself feeling as though I might be in real trouble, but I’m still here. My biggest fear and I know the doctors biggest fear, is that they all choose to lock up at the same time, that could with ease, be lights out.

I was lucky, I had had mild asthma all my life, so when I told my GP that my breathing was getting more difficult, he put two and two together and luckily came up with ten. Mind you, I didn’t once mention that at the same time, I was getting horrendous “MS Hugs”, other than the ones in my diaphragm. It clearly wasn’t my Asthma, it was quite clearly my PRMS. Things though could have been very very different, if I’d just been referred back to my Neurologist. The longer you live with an illness, the more we are inclined to just brush things aside. We get into the habit of blaming whatever is our main condition for everything. We also dismiss the possibility that there could be anything else involved, or that anyone other than our personal pet consultant, could possibly help. Surely, if it is my PRMS at the root of the problem, then I should go and see the Neurologist, shouldn’t I? Not always, sometimes, the people we need help from, are the people who actually specialise in the result, not in the cause.

I have had my eyes opened to that fact. I hope, that what is happening to me, opens the eyes of those who read this. I don’t think it matters what our core illness is, or what we think we know, sometimes, we just need to ignore all of it, and put our trust in a whole new set of possibilities.

 

Please read my blog from 2 years ago today – 11/04/2014 – Learned reactions

I really am wishing today that there was a shop where I could buy myself a replacement foot, to be precise a left foot. When I started finding myself sitting with only the balls of my feet on the floor, I thought that the only problem I had ahead of me was the shorting or my calf muscles, but now I know differently. I am getting more and more pain in my ankles the worst is my left one, I can only think that this constant position of wearing a really high heeled shoe, but without the shoe, of course, is straining and also ceasing up my ankle joint. Even when I am sitting with my foot off the floor, or even lying down, I keep finding my foot in exactly the same position, part of the result…….

Think again

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I started my day today as I do all to often now, with pain in my abdomen. What the rest of my body is telling me, is that I am nowhere near ready to go to the loo. I’ve tried, which was a terribly bad idea, as I now once again have a piece of stool lodged just where I don’t want it, and with no way of shifting it in any direction at all. So many of my muscles no just quite simply don’t have the strength to do what they once did. As little as four years ago, this quite simply wouldn’t have happened. Trust me, it is just as uncomfortable as the very idea of it, but it’s just one of a list of things that just make me feel useless at times.

The other week, I wrote a post about my mother-in-law have just being diagnosed with cancer and how I felt useless when it came to supporting Adam and her, because of my health. That, though, is a type of useless I know without a doubt, everyone on this planet could relate to. But there is another useless that takes the chronically ill, to fully understand.

I used to think I was useless when I couldn’t walk for the ten minutes, it took to get from my house to the bus stop, where I could get a bus to take me to work. Even  more useless when I became unable to walk the length of the call center and to keep working I required a wheelchair. I also remember the first time the shopping was delivered and I could shift the full shopping bags from the hall the kitchen. These are the types of useless that I’m sure anyone with chronic health can relate too. The everyday events that we suddenly find ourselves faced with, and after a lifetime of being able to them all without thought, suddenly we can’t. It doesn’t matter if anyone else is aware of it or not, we feel pathetic and completely useless. There is such a feeling of failure, of being unable to do anything and it just grows, more and more things happen and our list of inability seems to keep growing. It is almost like life is standing over you, with this big pen, and anything that you do, it is just waiting to put a big black line through it, and mark it off as another thing gone, another thing you can’t do.

It’s horrible, and having people telling you it’s OK, doesn’t help in the slightest. Being told it’s expected helps even less, and it appears we are just supposed to get on with it. To not react badly because of it and to just move on. Just because we have a certain condition, just because we are slowly becoming disabled, we’re expected to take it all in our stride, as though nothing has changed.

I remember feeling so many different things. So many different emotions, but most of all, it felt as though I was alone with it all. Yes, I could ask for help and yes, help was given whenever it was needed, but that was a million miles from the point. The point they all seemed to miss with such ease, was that I could no longer do it. Back when my life started slipping away from me, I didn’t have the slightest idea how I was supposed to feel, how I was supposed to react, or even what I was supposed to do so. Those around you look at you with pity, but pity isn’t what you want. Others, try to pretend nothing had changed. They act as though they haven’t noticed that you’ve lost three stone in weight, that’s there’s a nasal gastric tube stretched across your face and are now permanently, sat in a wheelchair. For them, there isn’t a right or a wrong, they are as unsure as we are, but they can walk away and get on with their lives, we can’t. We’re stuck in the middle of it, feeling useless and most of all, lost.

I was good at the bravado, at putting on a face that said to the outside world that I was OK. Now, I realise that was possibly the wrong thing to do, but as we are given no guidelines, no guidance of how to act, of who to confide in, or even who to turn to. We have no choice other than to get on with it, to put up with feeling useless and make the best of things how they are. If I could get out of this house, I know I wouldn’t hold back for a second in telling anyone, what is wrong with me. If I either needed help, or I didn’t like the way they were looking at me, hell yes, I’d tell them that I have MS, total stranger or not.

It doesn’t matter if it is the first time you failed to lift a bag of shopping or it is the millionth time, you still feel useless. The hardest thing to do is to unlearn. It doesn’t matter what age you are when you became ill, you have been learning from the day you were born and that knowledge is vast. Life has taught us that our abilities only ever grow. As a baby, we can pick up a rattle. As a toddler, a toy. By school age, we’re already able to carry our own bag, filled with a tonne of things we don’t need, on top of what we did. As a teenager, we can lift almost anything that an adult can, and we just keep getting stronger, and wiser as to how to lift anything. Now suddenly we’re ill, now we have to unlearn, and not just about what we can lift, that was just an example. Our health means we have to unlearn almost everything, not just about the physical side of life, but quite often mental and psychological, and it’s hard.

To survive in an adult world, we became adults, but we are now expected to continue in that world and we are digressing, stepping slowly backwards into childhood, but we remember what it means and feels to be grown up, even though we are slowly growing down. It isn’t just the physical us that is changing, for many it is their minds, for some it is both. We forget, we forget all the time. The things we once found easy, are becoming harder and harder and there is nothing we can do, but learn to cover it up, to use tricks to keep us functioning and gadgets to replace what we once did with ease. But still, we are expected to survive in an adult world. To be grown up and even more so, to react like one, even thought our chances of feeling useless just grow and grow.

I know without the slightest doubt, that I do things almost daily, that I remember scolding my children for, things I told them to not be so “stupid”, or so “silly” about, yet here I am doing just the same things. Chronic illness is designed to make you feel both of those things and million similar other emotions, and there is no avoiding them. One of the most important things I have taught myself is to not worry about it. So what if my muscles are “useless”, if my brain makes me feel “stupid”, or if I do “silly” things. I can’t stop myself feel that way, but I can stop myself fretting about it. I wish that I had learned that years ago. That I had not spent hour after hour fretting over what went wrong that day, and just had a good nights sleep instead. We are going to get things wrong. Our bodies are going to let us down and our minds will fail, they are facts. Fretting is a choice, and trust me, if you’re still at the start of this process, your health will be so much better if you don’t worry about what is done and gone. In time, you to will feel useless more often that you can count, but it doesn’t mean anything, other than your health is letting you down, not you, your not  letting anyone down.

 

Please read my blog from 2 years ago today – 10/04/2014 – What the Dr didn’t say

I think they call it sods law, I bought the new router the other week and I did have an issue in fitting it, so I reluctantly went back to the old one, the one that I had chucked over the settee in front of me and had bounced it way onto the floor. Luckily it’s flying lesson hadn’t done it any harm what so ever, in fact, it seems it did it some good as it hasn’t lost connection or dipped in speed even once since. So I now have a new router and a new modem, as I needed to replace that as well, all just sitting here with nothing to do, part of me is saying well just change them, you have the new stuff and it’s ready to go, but part of me is also saying why change it now, it’s working and I have a full backup for when the problems start again, which I am sure……

A day to delete

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I don’t know what it is about Sundays, but without fail, they are always days when I seem to land up chasing the clock. I don’t think it was made any better yesterday by the fact that the clock went forwards last night, for daylight saving time. No, I didn’t sleep an extra hour by forgetting to change the alarm clock, although yes, we did forget, somehow I woke at a time that meant I was just 15 minutes late. When I woke, I actually thought that I was starting my day early and that, I think, is where my trouble began. As I have said before, time is now a concept that I find hard to work with. Seeing the time saying 7:45 am, and that the bathroom clock agreed with it, I believed that to be the correct time, confusion started once I reached the living room and turned on my PC, it told me that it was 8:58 am. That was something my brain just couldn’t handle and I went into a total spin. As I said, Sundays are odd for me normally, but at that point I was already in the midst of a mental bedlam. I was desperately checking everything, all the clocks agreed with my alarm, but my PC and the TV said differently. Once my brain flips, logic has nothing to do with reality, and anyway reality is in some other dimension. I knew the time was due to be changed, but I just couldn’t get to grips with what was happening.

Once bedlam appears, it is incredibly hard to escape it. Even two hours later, I was still double checking everything, the result being that I just kept working myself into a frenzy and time, the real time was ticking away from me. Before I knew it, I was an hour behind on my daily routine and struggling with everything that I was trying to complete. I knew it really didn’t matter and that in the bigger scale of life, it was totally irrelevant, but telling my brain that, just wasn’t happening. The tiniest things can set off a train of reaction just like this, yesterday it was time, the one before was caused by opening a drawer in the kitchen to find the spoons were in the wrong order. Anything that is not as it should be, or is unfathomable at that second, can totally destroy my entire day. Once triggered, even if I correct the problem, it isn’t enough, I will without a doubt, double check that it is still correct the next time I am passing that way. On the surface, I know that some will think that it is a form of OCD, but it’s not. As long as I think that everything is where it should be, then my world is fine. I don’t go looking for things that are wrong, but if I find them, well then, they have to be fixed.

It took until after lunchtime for me to settle to the time issue. I was actually having lunch when I worked it out the root of my unsettled state. It wasn’t so much that the time had changed, as the fact that the clocks hadn’t been. I knew that in every single room of the flat, there was something wrong and as they are mainly wall clocks, I couldn’t fix them. As soon as Adam did, I settled again and normality returned. I had still lost over an hour, but hey, it was Sunday, I always land up running behind on a Sunday, so nothing new there then.

I can’t help wondering if there is some kind of lesion activity going on at the moment. There are just so many things happening altogether, which yes I’ve had issues with on and off, but they all feel more on than off right now. I am very aware of feeling distressed over virtually nothing, my concentration levels are low and my frustration rate is high over everything, my tremors have been going mad and the list just goes on. Just read the last three weeks posts, and I’m sure they are all there. Annoyingly, it is now also managing to get in the way of one of the things I enjoy the most, this, writing.

I used to write a post in under an hour, now, it can take more than double that, this one, so far has taken nearly three. I can’t hold my train of thought and I have to keep rereading, correcting and at times, deleting large sections and starting again. Add in fingers that somehow find keys that weren’t intended, a new ability to make up nonexistent words and the whole thing is taking longer and longer. I’m sure many have noticed that most of my posts have been shorter than they used to be. I would literally do nothing else if I were to achieve my once standard 7000 character. The normality that I desperately need is now being pulled apart, by the very brain that requires it. The normal flow of life is frequently severely disrupted. And for those reasons, I am going to have to stop writing today, before I do something totally nutty, like deleting the whole thing.

 

Please read my blog from 2 years ago today – 28/03/2014 – The future 

I woke this morning with the alarm sounding rather than pain anywhere, I’m not saying that the pain has gone, but, at least, it is at the level I normally live with rather than ripping me into shreds. I am sure that it is just what you would call normal, but I worry that days like yesterday are a window into my future, I know that the doctors would give me stronger painkillers, but that somehow doesn’t make it seem any brighter, just knowing that my body would ever have to be producing that level of pain somehow doesn’t seem to lie easy on me. I know it’s pointless worrying, or even thinking about something that I won’t be aware of, but it’s my body and me that will be living in the knowledge of reality. It is so often the fear of the future that gets to you, even when you know that there will be ways round thing, ways of making life bearable…..

 

 

 

 

Just fear or the truth

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I seem to be shaking less, but I also slept less last night as well. No, I know that any coloration between the two, doesn’t add up, but they are facts. I actually caused myself to not sleep well last night. It was totally my own fault as I put in one of my earplugs wrongly. The result, well a painful ear, one so painful that it woke me after six hours. Stupidly, I tried to reposition it and just go back to sleep. I woke two hours later when I ditched it and took a chance, one that paid off, I slept right to the alarm. It just shows that no matter what is wrong with us, we really can be the root of our own pain. When I woke the first time, I was in pain from my stomach as well, maybe not quite enough to wake me, but I could have with ease settled the blame there and not on my ear. I could probably sit here and list dozens of occasions when I have done just that, blamed my health for something that had nothing to do with it what so ever. The longer that we are ill, the easier it gets, just as it gets easier to be afraid of it. Logic says that doesn’t make sense, but there is now a fear, I didn’t feel at the start, and it’s a very real one.

Despite all the safety precautions that I have put in place, I have to admit, that I have never been as afraid of taking a tumble as I am now. Years ago, I paid no attention to my dwindling ability to stay upright. I still ran, I danced and careered up and down stairs without a thought. I had this attituded of if I fall so what. The recklessness of youth, well, not really, I was after all in my late thirties before I gave it a seconds thought. Youth had little to do with it, it was far more a case of belief, belief that I had had reinforced by my doctors that there was anything wrong with me. It has only been recently that I have been able to look back and plot clear changes, ones that have far more to do with my mind than my health.

Pre-diagnosis, I did everything that anyone else my age did, and if I’m honest, a lot of things that most people my age, had given up long ago and I did it all, totally fearlessly. In fact, the more the doctors told me I was fine, the more I pushed myself. Not to try and prove them wrong, it was more to show myself, that I was wrong. Someone who is ill, in my mind, couldn’t do half the things I did, so I had to be well. Then I got my Dx. I didn’t stop anything straight away, although I had the feeling that Adam often wished that I would, but we had a new home to decorate and I was going to do it. I had gone to the doctor as I had been very aware of an increase in all the things I had been fighting against. Pain, fatigue, spasms, I know now, that it was just the progression of what had been with me for 20 years. It was nothing more than progression, not a flare or anything dramatic. Something had triggered an acceleration of my health, but I still had no fear of it. Even when I knew what my future held, I had no fear what so ever, well not at first.

I had no fear until I hit the point that I thought I would very soon lose my job because of it. I didn’t fear the fact that I appeared by then to be a jibbering wreck. That my tremors were at their peak, my speech at its worse, my mobility was shot and my memory a total wreck. I wasn’t scared of my health, just losing my job. I had no fear of the chemotherapy, or it’s possible side effects, which I had none of. Fear still wasn’t part of my life. The flares that I had scared me a little, especially when I found myself in the hospital unable to breathe or talk, but that passed, just as all flare did. They left their mark, but they passed. I had gone through what should have been a traumatic five years for anyone, but I still didn’t fear my health. Maybe, a little oddly, the first time I felt fear, was the morning I woke up with no movement or strength in my left arm. It took a dead arm, for me to feel out of control, as that is what fear really is, not being in control of your body. Before that, my body may not have worked well, but it did at least work, now it wasn’t even doing that.

Until then, I believed that my knowledge and my being in control meant I felt no fear. Even when my arm returned, I had for the first time a fear of what it could do next. Everything kept progressing, at first, I told myself lies, I told myself the progression was due to the fact that I had lost that control. I had this new knowledge, that control could vanish at any second and in many ways, I had never truly got it back. Despite the fact that nothing like that has happened again, my fear of it has just kept growing. I would have expected that over the past eight years, as I learned more and more about my health, as we all do, that that knowledge and experience, would have slowly removed the fear. It hasn’t. I suspect that being told that my PRMS could stop me breathing any time it chooses, didn’t help, but that was three years ago, and I’m still here, but so is that fear. So why hasn’t it gone?

Fear is actually a healthy thing to have. It shows a respect for my own vulnerability, and I suspect, that’s why I didn’t understand it and didn’t like it. I have never been a person who gave into fear, in fact, I twisted it and used it as a strength through many years of abuse, bravado was my bedfellow and best friend. It’s somethings that once you have learned to do, is very hard to let go of, over time, you actually believe your own fakery. So oddly for me, I think being able to feel fear again, and to be able to admit that I do, is actually something really good. I don’t think I have ever before admitted that something scares me, really scares me, not like falling over, or finding yourself in the middle of a road with a car you didn’t see coming towards you. This is a deep long lasting fear, one that appeared out of a true understanding of my life, one I was free to feel because I felt safe enough, to be able to. It has taken me another nine years from first feeling it, to admitting that I do. It also felt right that I put all this in here, as I know without a doubt, I am not the only one who is scared by their health. I’m reasonably sure that those who have read for a while, must have thought that I was immune to it, well I’m not.

Our bodies are doing things to us that yes, maybe we don’t want everyone to see, so bravado has its place, but so do our fears. I don’t fear dying, I just don’t want to do it. Just as I don’t want to wake in pain, whether it’s my fault or just my body once again showing me who is really in charge. If you didn’t feel fear, well just like me, I’d say that you are kidding yourself, taking bravado one step too far, just as I have done for years. Survival strategies are just that, strategies, true survival is feeling all the things that are there and admitting it, to ourselves first, but it’s also good to admit it to those we love as well. It has only been in the last few years that I have started to feel the entire rollercoaster of emotions that goes along with my health, and boy, has it been one hell of a ride. As mad as it sounds, I have hidden the majority of them from Adam, if there is one person who I shouldn’t hide them from, it’s him. As I said, it’s hard sometimes to let go of things, but if it hadn’t been for his love and support, I don’t think I would have felt safe enough to even let myself feel. By writing this, it means that he now knows, but I think if I asked him, he would say that he already knew. Somehow, he always does.

 

Please read my blog from 2 years ago today – 21/03/2014 – Just floating in time

I am having one of those days were just trying to get things done, isn’t that easy. My mind is off on one of it’s let just go with the flow, not be bothered by what has to be done or even admit, anything has to be done. I always find days like this difficult because I have two arguments always going on in my head, the one that says you have to keep going or you will find yourself so far behind that you will stress out later, and the other one that just says “Whatever!”. Floaty days have their good sides, as just sitting drifting has a habit of taking me back in o those happy times, those days when the whole feeling of “Whatever” was lived to the full. Strangely there a two days…….