Back to the beginning

Posted on December 19, 2015 by livinginalimitedword

I woke up tired, with no reason on earth other than what I do daily online, as to why I couldn’t go back to sleep. It was genuinely, the very first time where I almost did, what I have been tempted to do so often. I honestly, don’t remember ever feeling quite so drawn to disobey the clock and say “To hell with it, I need to sleep.” There has been through all my life, this drive to work, to do things as they should be. It doesn’t matter if it is paid work or just the daily work of life, I always have to do what is right. I know that it started from childhood, from my parents demanding that life ran to two things, the clock and work. Work covered everything from, of course, going to school, homework, working in my father’s business and household chores. It was something I was grateful for, as it gave me a structure to hold onto, throughout some of the darkest years of my life. When I fell into a depression that twice nearly took my life, structure or as I call it now, routine, kept me going. Housework had to be done, the children cared for, the garden kept perfectly, clothes to be made, bread to be baked and the list went on, there was work, and always, more work. When I found myself housebound and working from home, I developed a routine that in many ways, hasn’t changed since. Clearly, part, at least, was governed by the work I had to do for the office, the reports that had to be on time, the bonuses that had to be calculated and so on. More than that, though, I developed the structure of living totally from home. I may no longer be paid, and my hours have diminished greatly, but routine has been, and is still, at the heart of my life. There are hours by which things have to be done, the only one that put’s any sort of pressure on me these days, is writing this. It has to be done before noon, else wise, I know I’m letting others down, and that doesn’t sit well with me, in any way.

Not long ago, I know that I mentioned in one of my posts, that I am now so tired, that I knew I needed more sleep, but I had no idea where to find those hours I needed from. Well, I am beginning to piece things together, that will hopefully allow me to take more time in bed in the morning. My routine has worked so well for me, for so many years, that letting go of any part of it is always hard. I have, though, done so regularly. I have had to over and over again snip away pieces here and there. Reducing this, or that, bringing it down to a size, that I can cope with as my health has slipped, further and further down. For months now, I have been having days when the whole things, just feels too much. The pressure that I have been putting myself under, is once more too much, but no matter how many times I have looked at it, I could find nothing that would allow me more spare time. I have nothing left that I am comfortable cutting away. Then last month, I discovered something, that I hadn’t noticed happening at the time. Every time I have reduced my “work”, I have cut away items from my list of tweets. Over the three years, I have been on Twitter, I have reduced my load from sending out, at least, one tweet every ten minutes, 24/7, down to 4 per hour. No matter how much I cut and tweaked, I never seemed to have any more time. What I hadn’t realised was that the time I produced, was being eaten up by my blog. When I started blogging, I was satisfied to have written as little as 3000 charters, I am now not happy until, I have found at least 7000, usually nearer to 8000. I have often found myself sitting here almost banging my head against the computer screen, as I simply couldn’t find anything else to really write about. Inspiration would appear and my then 5000 charters would explode to 9000 plus. It is no wonder, that I never freed up any time. So this is my first change. There are no longer any rules about how long a post can or can’t be. From here on in, a post is the length, I am content for it to reach. Some might be just a couple of paragraphs, another, much, much longer. From here on in, my daily health will govern what I do, rather than some mad rule about characters.

Outside of what I do online, my biggest problem for years, when it comes to getting enough sleep, is Adam. He is so bad at getting up and has since we married relied on me, to see he was up for work. I know for a fact, that if I just woke to see him out of the house, then went back to bed, it simply wouldn’t work for me. Without a doubt, that is the logical point in the day to extend my sleep, as it’s the point where I don’t want to wake. The sleep I take in the afternoon, is often not true sleep, more a doze, and in fact, if I were to sleep an extra hour in the morning, I probably wouldn’t even need to try again later on. I am so used to dragging myself through the mornings, fight tiredness, which slows down everything that I do. On the odd day where I have been awake, everything flows with ease and I complete my tasks with time to spare. Just being able to sleep one hour longer, could change things for me totally. Last night, I broached the subject with him and we have decided, that we are going to give it a go. He will set his alarm on his phone, which with my earplugs in, I don’t hear. There are a lot of things that have changed in our lives, that I wasn’t allowing for when I was worrying about him, not waking for work, the biggest being just simply, maturity. I am still going to set my alarm, but for an hour later, to start with and see how it goes. Any longer than that, I put myself outside of what my pain medication covers, trust me, waking every day in pain, isn’t a good way to set yourself up for anything.

I can’t live without routine. Although I had already removed the time restrictions for all tasks, I hadn’t looked a the most logical change of all, the time spent writing. I honestly don’t think anything will be lost, as on my inspired days, the words flow freely and fast, really fast. If there are any rules about writing, that is probably the one above all others, that should govern it, internal inspiration. We all need routine, but it should be us running it, not it running us.

Please read my blog from 2 years ago today – 19/12/2013 – Just another day

I woke this morning almost unable to move, every part of me was not only stiff, it was also in searing pain, especially my back just above my waist. I kept trying to find the strength to lift just one side off the mattress…..

Restructuring

Posted on June 29, 2015 by livinginalimitedword

All I have done since I woke up is to cough. Yesterday evening even Adam broached the subject and asked if I thought it was getting worse again, in other words, he thinks it is. I had to be honest and tell him that I thought that it might be but I wasn’t sure if it was bad enough to require a call to the Doctor or if it was just to be expected. What I do know is that it is now centered on my left lung as the back and lower edge of that lung complains about every breath I take, but compare it to two weeks ago and I am as fit as a fiddle. I woke last night just before midnight coughing madly and Adam appeared once again with a measure of cough mixture that did the trick. Sleeping solidly from then until the alarm sounded was wonderful. I honestly don’t think I have had a full nights sleep since this whole thing began, which doesn’t make the rest of my life any easier. Today seems to be just like yesterday. At first I was coughing and finding nothing but the desire to cough again and again. Eventually, there was a small amount of the thick nasty gunk, then the water returned and it has been nothing but thin watery liquid ever since. Once again I can’t hear any crackle or wheeze, I just feel it in an intake of air and there it is suddenly drowning me before going quiet for another few minutes.

I have once again been doing something that in the last few years I have become an expert at, I have been putting things off. I now find myself with a list of things that I have no other choice but to do today. Top of that list is to have a shower. When I went for my nap yesterday, I fully intended to have my shower when I woke. The problem was that when I did wake, all I could smell was bleach. Adam had been going mad with it in the bathroom and even in the hallway I could feel the fumes cutting into my lungs, my shower wasn’t going to happen. I have shuffled it forwards four times now and, to be honest, I feel disgusting and the fact that the shopping will be here this afternoon, is the icing on the cake, I can’t let anyone see me looking like this. I also have to make two phone calls, first to the doctors as I have to be sure that the new calcium tablets are on the list of repeat medications. Then I have to phone the chemist to add them on to their list of drugs to order for me. I also need to have a word with them about my Amitriptyline. I have been taking it for years and although the brands change all the time, it has always tasted just like they all do. When my meds arrived last there was a different brand and I thought nothing of it until I had to take it. The only way I can describe it is to say that it tastes like soap. I am usually really good at taking anything, no matter how horrid the flavour, but this one has me stumped. It has got to the point that I now actually dread having to swallow the stuff. I find myself every night sitting on my perching stool in the kitchen just looking at the little cup with this stuff glaring back at me and wanting to do anything, other than have to swallow it. I have never asked a chemist to not send a certain brand of a drug before, so I don’t even know if they will be happy to change it back or not, but I have to try.

I can’t be sure what started it, or even when, but I have for some reason recently been plagued by heartburn. I don’t mean the normal stuff that we all know, no this is turbocharged. To me, heartburn was never more than a discomfort in the area of my sternum and a burning sensation in the back of my throat. I don’t remember it lasting more than maybe half an hour and then nothing for months. This is like someone has kicked me in the chest and the pain starts in line with my stomach and goes right around to my sides. I can feel it right up to my armpits and the only reason I know it’s heartburn is as within a minute or so, the normal heartburn symptoms appear and I have to drink something so that it doesn’t burn its way through my throat. I have lost count how many bouts I have had, but strangely I have found that even a few mouthfuls of coke have the desired effect on my throat, the rest of me takes time. I have never had heartburn that wakes me up in the middle of the night before, or appears even before I have had a chance to eat something in the morning. To me, this is really odd and the only thing that makes any sense is that when my diaphragm spasms are now tight enough to actually crush my stomach and forcing the bile upwards. I have for years now been on tablets that are there to protect my stomach from all the drugs that I take. I actually can’t remember having heartburn at all in all that time, then this started. I got Adam to buy me some suckable tablets that I have taken in the past, in the past they were wonderful, now they don’t seem to be doing much at all beyond what I can do just by drinking something.

I have been working on what my new routine should look like. The biggest change is that I have built into it rest points, times when I simply stop doing whatever I am and go and do something else. For example, I used to have my breakfast while I sat here working through my online stuff. Now, I stop. I am taking my tablet, eating breakfast as a focused on meal rather than something that is happening in the background and once finished, I sit and go through what I want to add into my schedule for recording on the TV. I have allowed for short breaks like that throughout the morning. My work schedule is now constructed in such a way, that once I have finished my blog, and the tweets about it, the rest can be done whenever I want throughout the rest of the day. I am hoping that by just breaking the ridged structure down and stopping from time to time, that I will not wear myself out quite so quickly or quite so totally. Having spent a couple of weeks being forced out of my old routine may just have been the best thing that could have happened. Even what I put out on Twitter has changed, not in content, but in quantity. I no longer have this tight list that I stuck to daily, now if I don’t feel like doing this or that, well I don’t.

All that might sound really trivial and as though it is something anyone would do when they don’t have the health of a flee, but to me it is really hard just now. I have it so well ingrained into me that life has to be a productive venture or it isn’t worth anything, that being able to stop and do nothing of worth, is hard. I know without a doubt that I have been pushing myself too hard, but it is incredibly difficult to fight against everything you have ever lived by. Just stopping for a few minutes is hard enough, bearing in mind that I don’t remember ever taking a lunch break in any job I have ever done, yes ciggy breaks, but eating, well that could be done when the work was finished. When you are having to literally reprogram your soul, it’s hard. This new freedom to do what I want is odd, as I can’t find things at the moment other than games to fill the time. Years ago I would have sat and done some kind of handicraft, but with my poor eyesight and crap dexterity, well embroidery, knitting and all the rest of them, just isn’t possible. I might have eventually accepted that I am not up to being superwomen any longer, but accepting that I can even be a shadow of her, well it is both hard and it hurts.

For me, it doesn’t matter what my health throws at me physically, how much pain, discomfort, fatigue and all the other things it finds to play with, it is the mental attitude changes that I find the hardest. It is beginning to feel as though those changes are having to be made more often than in the past. I knew this time would come, the point when want and ability were two totally different things and that want would be the one to suffer. Even though I knew it would happen, it doesn’t make it any easier to actually accept.

Read my blog from 2 years ago today – 29/06/13 – Thoughts

Yesterday and so far this morning have been filled with pain in my legs, it is one of those shift about and twist days, but with little real relief. I sometimes wonder how I have managed to gain wait as although I would class myself clearly as immobile I rarely ever actually manage to sit still for long. I know that I frequently joke about switching them for…..

Counter-intuitive

Posted on June 5, 2015 by livinginalimitedword

Tiredness and nausea got the better of me last night and I headed to bed early. I wasn’t long after 8pm, just long enough for my meds to be kicking in and I simply couldn’t face any more of the day. Adam had some studying to do before college this morning, so I didn’t have to go through that guilt kick that echos around me when I have to give in. Making my decision to do what is right for me, doesn’t mean I won’t feel that it’s wrong, but it did make it oddly easier to take the decision without hanging around for ages swithering about it. I had actually been feeling sick for most of the afternoon and neither my nap nor my anti sickness meds seemed to be touching it, usually they work really well. By the time I was due to take my night-time drugs, I once more found myself sat in the kitchen looking at them and wondering if I was going to keep them down. There is nothing worse than that feeling and it’s one you don’t ever find yourself having to fight until you are really ill. In the past feeling sick meant you just didn’t eat or drink anything when it is at it’s worst, these days I don’t have a choice, I needed and had to take them. Lying down was a blessing and pure relief, when the world is swimming, horizontal is the only position that feels safe and sleep took over quickly. It didn’t last that long though as with less than an hours sleep I found myself awake and in the worst pain I have had in the past couple of weeks in my abdomen.

There didn’t seem to be a single part, top, bottom or sides that weren’t screaming at me and it was totally out of the blue. I just said a couple of days ago that everything had been surprisingly peaceful, but not last night. I lay there for a few minutes hoping that it would just pass, that it was just a trapped air that just needed to move, but it didn’t. The pain was so intense that it was causing my nervous system to go into overdrive. Odd sensation from the insides of my thighs being frozen while my feet were on fire, to pins and needles in my hands and the skin sliding off my face were all there, but when my pet hate, that feels like bubbles just under my skin running all over the place started, I decided it was time to put a stop to it. I knew that there was no other choice than to take a booster pill as it wasn’t going to settle by itself and if I wanted any more sleep. I don’t get what it is about lying down that amplifies the pain, but the second I was sat up on the edge of the bed to take my tablet, the seed of the idea that I might need outside help vanished. Yes, the pain was still there, but it was bearable when sat up, which isn’t a word I wouldn’t have attached to it seconds before. I always thought that it was a psychological thing, as in you have nothing else to think about once you are lying down in the dark. The pain isn’t any worse there, it’s just that you have nothing else to distract you, clearly that was rubbish. Nothing had changed other than my position, if something major was going on, I would have felt no change, position doesn’t change facts.

This morning I am in exactly the same position, even though I actually slept well once the booster took over. There is this immense pressure that I know without trying if I were to lie down right now, would change straight into pain. It’s knowledge like that the total screws with your brain, because it doesn’t matter how tired I might get, I would in the “normal” world be faced with a set of choices, stay awake until I can’t stay awake anymore, try it and see which means putting myself possibly in pain, or taking a booster half an hour before. The first doesn’t work at all, do that and I will send my PRMS into free fall and I will suffer for it for days. Clearly the final one doesn’t really work when you can be fine one minute and dead on your feet the next, planning and chronic illness don’t go together, ever. So I am left with the suck it and see approach, but that causes problems as well, as the booster takes time to work. This is just one of those wonderful loose, loose situations that our health has lined up waiting for us, but it’s also a great example of how you can be left feeling that you just can’t win. There are times when it feels as though there will never be one simple act that you can just do, without having to weigh up the possibilities of what the outcome will be. I don’t thnk there is a single thing in my life any longer that I unlike the old me, although I might think I have choices, I actually don’t.

I can only guess, but I think that if I were to look back over the course of my illness as the real choices in my life have vanished at the same rate as my health has become worse. I never thought that there would be a day when I would find myself looking into my own kitchen cupboards and have to dismiss nearly 90% of what is in there as impossible for me to eat for an array of reasons. I couldn’t have even guessed back then that I would be facing a life without choice, so OK right now I do have some choice, but they are getting more and more limited. For years, I have been guarding the choices that are freely mine, like whether I smoke or not, what colour my hair is, silly things but things that are my choice. Living inside a tight routine, one that was the only way of holding my PRMS level, removes much of the choice that most people have, but it was worth it. From talking to others who also have MS and some with Fibro, they too have found that routine has been almost magical in the way that it lets us remain reasonably well, if not healthy.

To date, I haven’t come across one person who has said that routine has failed them as time has progressed. I said a couple of days ago that I was going to think through the whole process as it is so clearly not working any longer. I haven’t sorted it all out yet, but I don’t think that throwing the routine out will actually help, but clearly working reactively to each day is equally a bad thing. Counter to what logic would say, nothing is really simple when you don’t have a choice.

Read my blog from 2 years ago today – 4/06/13 – Is it age? Is it health? Or is it just life?

I wasn’t too sure that I was going to write about this morning, in the last few days things have followed as always with what is wrong with me and what is happening in my thoughts because of it. I was thinking through some possible starting point, I always work in the same way with just a sentence and then it flows on its own. But I was having trouble to find just…..

Time to think again

Posted on June 3, 2015 by livinginalimitedword

I was just sitting here eating my breakfast before I started on my blog and sort of found myself watching the TV. Well, it’s there and on, what else can you do while you eat if you don’t want your breakfast inside your keyboard. As I watched I decided to start channel flicking, looking for something to have in the background while I was writing, I hate silence. Oddly I find it makes writing harder, I think it’s because the silence when I’m not hitting the keys is deadening and make each second of thought harder. It was one of those odd things that I wasn’t really conscious of make a choice to stop channel hopping, but there I was watching some program about UFO’s. I realised that yet again I was watching and laughing at myself for the fact I was watching. I do believe life is out there somewhere, maybe or maybe not buzzing our planet, but out there somewhere. Yet I was watching, once again listening to the accounts of people who clearly believe what they saw and I’m not saying they didn’t, see it, but it started me wondering. Why is it that people get TV programs made about their experiences with things that many don’t believe in at all, yet no one ever seems to want to listen to or believe someone who is ill, but can’t get a diagnosis. clearly my mind was split between what I was watching and the fact I was about to start writing, but I guess it’s just another example of how warped this planet really is. Thirty years ago, well I can forgive them for that, medical science has come a long way, so to have it still happening, isn’t really acceptable. It is one of the constant things that I hear on Twitter over and over again, people having to fight to get a diagnosis while they continue to suffer without any help what so ever.

In some ways, it doesn’t really get that much better once you do have a diagnosis. Yes, you have what in many ways is the most important thing, a name to explain what is happening and that is a hugely important thing. That alone is a life changing thing, something that in many ways doctors won’t understand until it happens to them. Once you have that name, if you are very lucky, they can then cure it. If they can’t do that well for some there will be a course of medication that will ease you symptoms and make life bearable. Then you have the ones like me, no cure, no medication to make life normal, just firefighting and pain relief. PRMS doesn’t respond to any of the MS treatments, we are the uncurable and the un-help able. All they can really do is observe and throw steroids at us in mountain high heaps when things go wildly wrong. Until the last few years, that for me was fine, I could cope with reasonable ease what was happening and as long as my pain meds were working well enough, well life was good. As things have been getting worse and worse at a clearly accelerated manner has forced me to start thinking about my future. I guess I haven’t really put that much thought into to it as well like everyone else I don’t really want to know what is ahead of me. I have realised though that I can’t be an ostrich forever, I have to face what lies ahead and I have to start making decisions about how I want my treatment to go. I know I have written before about setting up a DNR or as it is called in Scotland a DNACPR, (Do Not Attempt Cardiopulmonary Resuscitation), but that is for the very end of life, there is a huge gap between now and then.

To date, I have been very clear that I prefer to have a clear mind than to be totally pain-free if they can’t be achieved together. I have to say here that I have been extremely pleased to find that Morphine didn’t have the effects that I was expecting. Recently I know that when I use the booster pills like sweeties then I get vivid dreams, out of personal preference, I have chosen to take more pain and not be totally confused when I wake up. The increased pain that I have been living with has side effects of it’s own, it drains my energy faster than anything else I know. The worse the pain, the more sleep I am needing and that’s cutting into my life. If the pain is really bad, that also cuts into my sleep and the whole thing is taking my routine and tearing it into shreds. My PRMS clearly now has total control over my bowels, it can’t be fixed any more than anything else can be, it’s about managing them and we are working on that. So far with little success, other than I have to say the past three days I haven’t had as much of those terrible intense pains that make me want to cry. I can’t work out why, as I still haven’t been to the loo since I took the laxative eight days ago. I can see now quite clearly that my future isn’t going to work out the way I thought it might. I can see that being bedbound is going to start in phases, not out of the lack of ability to not get up, but because I will be exhausted all the time.

In a funny way, I can feel my body shutting down. Not in a way that I feel I am dying, so don’t worry about that one Adam. What I mean is it is all slowing down, everything is drawing me slowly into doing less and less as in the number of hours of activity. I feel the need to move less if that makes sense. I managed the baking yesterday, but when I was finished, well I felt good mentally, but physically, I had this dead feeling. As though my limbs weren’t there, they had given all they had got. Something I know I mentioned a while ago is happening more and more as well. When I am lying in bed, I lose the location of my limbs, I can’t tell for sure if my legs are crossed or not, or if my hands are flat on the bed or up on their edges. I don’t know where they are, as I can’t feel them. As I said when I wrote about it, it had started to happen when I was up and about, now it’s happening all the time. Right now if I stop typing, my arms will immediately start to vanish and if I stay still they will like when in bed vanish totally. All those nerve signals that fly back and forward, don’t flow at all unless in use. Shut my eyes and my whole body starts shutting down, as though I am going to sleep, not dying. I am drawn more and more to lying in bed for comfort as that dead feeling belongs there, not here at my PC. If I go to bed, well I sleep with no difference than if I had lain down exhausted, my body happily shuts down.

I know I will just have to wait and see, but I am now saying without my arm twisted up behind my back by my illness, that I am willing to take more pain control if needed. I have had enough of fighting against the pain as it achieves nothing any longer. I was scared it would shut my body down and all I would want to do is sleep, that is happening anyway, so why fight it any longer. Fighting to not take the drugs has run its course, my PRMS has taken away the reason to fight it. My routine that has kept things level for a long time is no longer working the way it once did. I need to look at it all again and I need to start thinking in more detail about what the future really will be and how I am going to handle it. The last time I did all this was 8 years ago when I became housebound. Yes, it had a major overhaul when I was made redundant 3 years later, but the core has remained the same. It has been tweaked over and over, cut back and trimmed, but my health has taken now taken over.

Read my blog from 2 years ago today – 3/06/13 – The nurture of illness

I seem to be running increasingly behind time today, it’s 10:30 and this is me just starting to write. I have no idea where this morning has gone, I haven’t done anything different or had any reason to take longer than normal, but here I am dragging myself into my main task of the day. That sounds really bad as though this is a tough task I don’t want to do, nothing could be further from the truth. I am guessing that I am already…..

A purposeful coincidence

Posted on April 22, 2015 by livinginalimitedword

If there is one thing in life I love, it has to be coincidences, those things that appear from nowhere and match up like some kind of spooky voodoo. I always organise my set Tweets either one or even two days in advance, especially the quotes as they don’t relate to anything other than the fact I like them. It had to have been Saturday when I set up this quote “I may not have gone where I intended to go, but I think I have ended up where I needed to be. – Douglas Adams” to be sent on Monday along with another 17 totally unconnected quotes. It was pure coincidence that on Monday I wrote about the fact that due to being housebound and my illness, I had connected to several things that made me feel so much better as a person. When the quote went out someone replied saying “I don’t think you really mean that Pam, do you…”, I had forgotten about the quote until I saw the response and without thinking I replied, “Well actually, I think I do”. If I hadn’t just written a post on finding happiness in my illness, I don’t think that would have been my answer, as I realised as I was writing it that I actually have much to be grateful for my situation, not just the time that allowed me to rebuild parts of my inner self and a new understanding of life which I had totally missed when I was out there living it. After I answered the tweet I sat for a while and I thought about it even further and I realised that it all went a lot deeper than that.

The more I thought about it, the more I started to realise that this probably is where I was meant to be, maybe not in actual location, as in housebound, but where I was supposed to be as a person. I have written before how about my life had been more drifting from one thing to another with little thought about what job or where I was going to live, it all just sort of happened to me. Opportunities would appear and I always just went with them, with the background thought of “Well if it goes wrong, I can start over again”, starting over has been part of my life since I was a child and not even now, does it hold any fear for me. It doesn’t matter what reincarnation of myself you chose to look at, there is one thing they all have in common, I have always gone for it 100%, I had to do whatever it was at the highest standard I could achieve. From the housewife and mother who didn’t just cook and clean, but made clothes for the whole family, baked fresh bread and cakes daily and kept an entire house that was permanently perfect; to the only professional female DJ in Scotland and I made sure there wasn’t a genera that I couldn’t handle; to the sales person who outsold all around her and did it honestly; to the Operations Manager who learned to program so I could build quickly bespoke software to cover every aspect of my job; all to my highest standard. So it shouldn’t be a surprise that when I found myself housebound that I was going to take this opportunity and find the way of adding value to this reincarnation as well. You would have to be mad to want to be housebound, but here I am and here I have to stay.

The third coincidence I think came on Tuesday, I was asked if I had been able to find meaningful work from home, I had to answer honestly and say that despite nearly two years of applying for anything suitable and sending out my CV to every employment agency I could find in the UK, the answer was no. No real companies want to offer real jobs to people who can’t get to their offices and that appears to be a fact. I worked at home for three years, but that was for a company I had already worked for for nearly 10 years when I became housebound. There are millions of companies out there who advertise for home workers, but you won’t make money out of it, the jobs aren’t real and should be avoided, especially those who ask for money from you before you start, to buy kits and so on. I know that I don’t make a penny from what I do online, despite the ads that everyone thinks make you a fourtune, the truth is people don’t click them often enough for them to generate anything like enough money to call them worthwhile, mine make enough to pay for this site and that is it, but this is my job. I created what for me is something I treat like a job, as it fills that space with a useful activity. Then I was asked today if I could advise someone on how to survive their llness and I sent them a link to my “seven steps” post, which is something that I still believe in, but their question was the fourth coincidence and it pushed me into writing this post. I realised that the one thing missing from those seven steps is something that has to come from ourselves, others can inspire it, but we have to apply it and that detemination, if your not determoned to make your life as useful as possible, you are going to find life hard and that goes across the healthy and the chronically ill.

Four things that are all about the same thing and something that is amazingly important, our quality of life and how we see ourselves. Yes, in a strange way I do now think this is where I was supposed to be, because I have taken what could have been a depressing and difficult thing to deal with and I have found the good in it and used it for good. I have built something I am proud of and although it doesn’t make money, I am as committed to this as I was everything else that I have done in my life. If we can find one thing, it doesn’t matter what it is, but something that inspires ourselves and we find fufilling, it is going to make us happy, earnings or not and none of us can survive chronic illness without happiness. It is a hard road at first, but even with all the downsides that I talk about here in my posts, there are just as many upsides that I talk about as well, but they are all things that we have to be determinded to succeed with or the result will be not worth thinking about. I think the quote from Douglas Alan fits my life really well, but it also speaks to all of us, as where ever we are, if we can find the good and make it work for us, well eventually we will feel as though what took us there did have a purpose after all.

Read my blog from 2 years ago today – 22/04/13 – Soothing the fears

The week starts again and Adam has headed out to work which, of course, means once more I am on my own. I find it strange how many people find being alone so hare to bare, just this morning I read a tweet from someone who is still able-bodied but it facing a future of possible housebound existence, and although there is only 140chars to send as a message, I could feel their pain and fear towards the whole idea. Maybe the fact that……