I want it so badly

I mentioned the other day that I had received an appointment to go for a breast scan. In this country, once you have passed the age of 50, it is one of the checks offered by the NHS for free. I did receive an appointment last year, but I chose not to go, as I explained a couple of days ago. For some reason, I have been putting off phoning them, to see if the situation of wheelchair access had improved. I find the phone at best difficult, and at worst, my worst enemy. I don’t know why, but my emotions react far more rapidly, when, I can’t actually see the person. I don’t fully understand the damage that has been done to my brain, but what I do know, is that tears appear when I least expect them, and frustration, builds rapidly, if, I can’t make myself fully understood. Hence, the fact that I normally ask Adam to make all calls on my behalf. So why did I decide that it was me who should pick the phone up instead of him? Well, because it’s me with the issues about going there, not him, it somehow made sense at the time.

Once again the girl on reception was rather useless. I am beginning to believe that all NHS receptionists are actually trained not to listen, as I have yet to find one who does. When I said that you’re not allowed to bring your own chair, when travelling by hospital transport, she more or less called me a liar, which I found really hard to get past, without losing my rag. I really don’t appreciate it when I am told I am wrong about something I know for a fact, I am right about. Every time I book an ambulance, I ask if I can take my own wheelchair, as it makes life so much easier, I am always told the same thing, no. It didn’t help matters, that she was another one of those people, who wouldn’t allow me to complete what I was saying, and answered what she expected my question to be, rather than just listening. As always happens in those situations, she was telling me things that I wasn’t interested in. I really don’t understand why people do that, as it achieves nothing. It turns out, that though that there are only two slots each day, put aside for wheelchair users. So they have canceled the appointment I had in February and are now sending me out another one, this time, for March. For me, that is a positive, as it gives me the whole of next month, hospital free. Annoyingly, though, those appointments are at 12:00 pm or ten minutes past, not as is best for me, first thing in the morning. Once again, I did try, but she said they were the only two slots for disabled patients.

I still don’t know how I feel about the whole thing. This whole business of arriving in a highly visible ambulance, right in the city center, at what I now know will also be lunchtime for many people, it really doesn’t sit well with me. Humans love to stare and I’m not comfortable, about being the one, they will be staring at. I suspect, that if they actually spoke to all their disabled patients who are affected by this, that the majority would feel the same way. As I said before, I fully understand the thinking behind putting this center where it is. It makes it wonderfully accessible for the able-bodied, but for the rest of us, it’s really not appropriate. When you arrive by ambulance at a hospital, no one pays any attention, it’s normal. In a city center, it’s something to gawk at. Last time I justified not going because I didn’t think there was a need for it. I know that reasoning doesn’t add up, any more than the one I came up with the other day. If they were to tell me I had breast cancer, it wouldn’t change anything for the better, just supply more people to poke at me, and possibly, a change to the already ticking clock. Before anyone thinks that I might be scared of this, well think again. I have gone through a breast scan before, and that time, it was because I had found a lump. It had actually burst before I reached the scan date, but they did it anyway. It really is just a combination of the above, plus this growing desire to be just left in peace, especially, from everything medical.

I have been finding this feeling growing lately. I don’t know what sparked it, or exactly when it began, but it is growing. In a way, I even now resent the time it takes each day to use my nebuliser, inhalers and even to take my tablets. Yes, I know it all adds up to only about forty minutes out of my day, but I do frequently find myself sitting in the kitchen, staring at it all and wishing it would all just vanish. It has now even extended to my psyllium pancakes. It stupid, I know that, but we can’t change feelings. Feelings don’t obey us, they are one of the few things that we can do nothing about, other than feel them. Clearly, I am not just going to stop taking any of them, I would just like to understand, why after all this time, this is how I suddenly feel? I simply can’t be bothered by this whole paraphernalia that goes with being ill. I have more than adapted to the lifestyle. I have adapted to the fact that I am housebound and all that goes with it, but right now, I just can’t stand anything to do with doctors, or the stuff they insist, that I need to take. The best way that I can put it, is, to say, that I want them and all their bits and pieces, to leave me in peace.

I guess that sometimes we just want the impossible, to be made possible. I yearn to have just even one day, one, where it wasn’t governed by an alarm clock telling me, it’s time that I took this pill or that. I was pleased when they told me on the phone that my appointment would now have to be in March. I was pleased because, I will then have had two whole months, without trips out to see doctors. Inside, I am screaming with a need to never go out and see any of them ever again. In the year I became housebound, it felt like I was at the hospital every week. I was seeing this person or that one, in the attempt to get my hand back working, so that I could once again go out. They failed. Over the following year, it slowly returned, but as it returned my tiredness increased ten-fold and my ability to walk, diminished. I might have had two hands, but I wasn’t able to go anywhere. Then came four wonderful years, when I didn’t see a single doctor, I didn’t leave here at all. I knew it was too good to last forever, but boy was it good. Then once again, my health went downhill so fast, they were back in my life, and there has been no escape ever since.

Peace, glorious peace. For someone who sees no one, goes nowhere, that should be easy. It should happen every day, but there is none, not in the way I am looking for it. I want it, but I can’t really explain it, other than that one word, peace, and that I know that I want it.


Please read my blog from 2 years ago today – 31/01/2014 – Loneliness

Adam didn’t make it home until long after I went to bed, I watched Eastenders and headed straight of to bed, with no struggling to stay awake just so I can spend more time with him. I have wondered often how I would…..




Searching for happiness

The last few days have been just a little odd. I have been somewhat lost when it comes to holding onto reality, but I have quite clearly been brighter and more alive than I have been for a while. The two things don’t really belong together, but that’s chronic illness for you, illogical and odd beyond anything you ever imagined before you are actually living with it. Adam noticed the change a couple of days ago if I’m honest, I felt it starting a couple of days before, but it took time to build until it was obvious. I don’t get many of these bright and almost bouncy spells. They are a glimpse of the person I used to be. The person who in their thirties still did things like leapfrog over the bollards on Sauchiehall street in the middle of the shoppers on a Saturday afternoon. She was a person that I really liked, not lacking in energy, either physical or mental, not afraid to do silly things and living just to be happy. I know I was lucky, I know that not many people have that chance of a second life, but I did and I didn’t waste it. Sometimes I think that it was life telling me to make the most of it as it was all going to vanish all too soon. At the time I thought it was life making things right for the mess that my first life was. Either way, from 28 to 40 where the best years of my life and I lived them, every second of them.

I often find myself sitting here with a silly smile on my face as some odd memory that has jumped into my head from nowhere. I smile because I can remember the happiness of those days, the almost endless fun and surprised that were hidden in most days, spontaneity was my life and I loved it. That doesn’t mean I’m not happy now, it just means I’m lucky to have a brain that gives me gifts from my past even though that gift, will mean I don’t remember what I was doing before it appeared. Memory can be both a joy and a total pain in the neck at exactly the same time. I don’t have the energy these days to walk a tenth of the length of Sauchiehall Street, far less leapfrog over one bollard, but I am just as happy today as I was then. How I feel and how I appear don’t always match and that is mainly down to energy. It is almost impossible to be cracking jokes, be sarcastic or even show spontaneity when all you want to do is sleep, or your mind is so fogged that you can’t see the next word. Appearances can be totally false.

I know that I am not alone in being quite content with their lives despite what has happened to it. Despite large doses of self-analysis, I have failed over and over to work out what it is about me that lets me be happy with my life as it is. There is nothing that I would like more than to be able to write some kind of self-help manual that could transform others lives so they to could be housebound or even just chronically ill and happy. The reality I have had to accept is that it has far more to do with personality and upbringing than anything else. I am an accepting person. I was brought up to do, not question what I was given. I learned quickly to accept where I am or what was happening and just get on with it. The only time that I went against that was when I broke free of my first marriage. There were moments of happiness, but so few that it just wasn’t not enough. I had accepted far more than I could take from that situation. But beyond what I was taught, is me, my personality. Where I am now, actually feels like a version of spontaneity, just as quickly as I would go off on a tangent because it seemed like fun, I can also see things as a tangent on life, so why shouldn’t that be fun too. I am here, a fact written in stone that no one can change. If it can’t be changed, then accept it and make the most of it. It may sound simplistic, but often the simplest things are the things that work.

Those who have been reading for a while will know that I didn’t accept without a period of fighting against it. That was another of my personality traits, pig-headedness. It is also a trait that can work for me as well. Without it, I would have given up long ago, what is the point in fighting something that you can’t beat. The point is, you just might this time. A run of small wins is enough to lift anyone’s spirits. In this past week, I lost and won back a hand, I started to actually go to the loo and I have defeated the monster of a new website that seemed to have it’s instructions buried in an MS Fog. Small wins, enough to lift me and enough to add that spark of brightness to my inside and outside self. Happiness can come from the strangest places, but it’s still there. Life didn’t end when my front door closed behind me for that last time, it just changed. I can still laugh at myself, even on my worst days there are points that are funny and fun may not come in wild antics now, but it’s still there, just smaller and more controlled. I am still here, unfortunately not smaller, more sort of rounder, not just in shape but in more rounded as a person. There is still so much ahead of me to learn and explore. My physical world is limited to just two rooms plus utilities but it bigger in the range of things I need to know and will need in the future.

I believe that you, me and everyone can be happy. It’s a matter of taking your life, your world as it is and accepting, then if it needs to change, well change it. If you can’t find any happiness in where you are, why should you find it somewhere else? Without accepting what is yours, what is unchangeable, you can’t move anywhere or make anything better. It takes time, lots of time, but well we have loads of it, but if you are determined to keep living, determined to be happy, you will be. But nothing will change if your heart isn’t in it and if you don’t really try.

Please read my blog from 2 years ago – 25/07/2013 – Is there a way out

Sometimes I find myself with so many words inside me that I can’t see past them, through them or even around them, my head spins as I try to find out just what it is these dammed words are actually trying to tell me, or is it trying to tell you. After all it is the reader that words are really for, rather than…..

Processing happiness

I managed to make a little space in my days over the last week and I used it to change a rebuild everything that I now do on Twitter. I have been wanting to for quite a while now as once again it had become just that bit too much for me, so although nothing has vanished, everything has been altered in some way, mainly reduced in their frequency which means fewer tweets and less work. When I look at what I do these days compared to what I started out doing, it was just madness the amount of tweets I once sent out, some might say it still is, but I did always set out to do it my way and that hasn’t changed. Over the next few days, I know without a doubt everyone will spot the changes and I just hope it still keeps everyone happy and not feeling as though I am ignoring them, as the mentions were the thing that needed the most pruning, something I started about a month ago. It’s really hard when your health forces you into making changes, changes that you know without a doubt you wouldn’t have made for any other reason, but that is what happens with conditions like mine, we have to keep changing to keep up with what it is doing to us.

It doesn’t matter whether we are ill or not, one of the things that it is impossible to do is to not look back on our lives. Those people who tell you to just forget about it, or not think about it are mad and personally, I actually believe that looking backwards is often the best way of working out not just who we were then, but who we are now. There are events in everyone’s lives that none of us will ever escape, those events that can’t be forgotten or brushed over, but no matter how painful we are always drawn back to by events, or just our mind’s still trying to make some kind of sense out of the whole things. I for one have found that the worst thing possible to do with those memories is to try and push them into some kind of box and keep them there, it doesn’t work, they always explode suddenly and you don’t just feel them, you relive them in probably a more painful fashion than you did originally. One of the biggest problems of our modern world is we don’t have space to think, there is always something to distracts us, gives us an excuse to pack those thoughts away. There is one thing that totally amazes me and that is people who say in bemusement that they can’t sleep because they can’t shut up their minds, why are they so surprised by that fact, if you don’t think about things, they will make you think once you have the peace and quiet to do so. To me it has been the most positive thing to have come out of being housebound, I have had time to think, time to go over all those things that were my life and to see them often in a very different light, that’s why I said “to see who you were”, I have learned more about me in the last 8 years, than I learned in the previous 45 and the biggest thing I have learned is if you have things pushing their way into your mind, it is because there is something wrong with the way you are remembering it and all too often, it is the viewpoint that’s wrong, the fact that I hadn’t looked at it from the viewpoint of the others involved.

A couple of years ago I wrote a post about forgiveness and how it was all too often ourself that we had to forgive, but not all memories are about apportioning blame, most are far more about emotions, our times of both happiness and sadness, if we are lucky exceptionally lucky the happiness memories out way all others. There is a myth in my head that says everyone in this world is happier than I am, I know it’s a myth because everything I read tells me that everyone out there feels ruffly about the same. It has taken me a long time to realise that being content is actually the reality of how most of us live, somewhere along the line we have this black and white view imprinted on us, that you are either happy or sad and there is no in between, but if there were the truth everyone would be walking around either in fits of tears or manically laughing, contentment is a very under appreciated state. When I found myself housebound I also found myself with the time to work through a million things, forgiveness was one of the first and it took a lot of soul-searching and lot of pain but I still stick to what I said in 2013, it is so worth doing, it changed me into a much more mellow person inside, I was no longer pulling myself apart and fighting my way through a life that had so many painful events in it that the past was a dangerous place. I was lucky in one way, that I had tried to do the same thing once before when I first moved to Glasgow, but I had held onto some who I was just not ready to forgive at that point, two years ago I at last forgave both my Father and the man who raped me when I was 12. It is hard to grow up when you are permanently being held back by so much hate and it holds you back emotionally as well, I had spent most of my adult years still acting like a child when I was confronted by anything I didn’t like, want to face or wanted to admit. My memories had been overshadowed by those spectators who I couldn’t put to rest and finally forgiving was a wonderful feeling. In the last few years, I have spent a lot of time going through my past, well as I said the other day, new memories are hard to make when every day is identical, but someone the other day said something that made me sit up and think again.

It was in response to one of my tweets, I can’t remember exactly which one now, I know I should have made a note of it, but I didn’t. They too had a chronic illness, but they were trying so hard to fight against it and to get back the life they had before their illness hit. It was something I never once tried, I had had so many different lives, that the whole idea of trying to get back any of them, well it didn’t make sense to me, I have started over so many times that starting over again seemed like the natural thing to do and I just did it. With every change that my health has imposed on me, I have readjusted and restarted what in many ways is another book in my growing life history. I have always taken with me what I had learned but not once trying to hold onto or return to what was now a closed book. It never once occurred to me that anyone else out there would be trying to do anything else, yet here I had it in front of me in black and white, someone who couldn’t move forward because all they were doing was looking back. Part of forgiving and letting go is the acceptance that holding onto something that can’t be changed is only ever destructive to ourselves. It doesn’t matter if it is a painful memory or a lifestyle that is now out of reach, if we can’t let go it will do only one thing and that is to eat away at us and make us unhappy and probably even depressed as time goes on. To be able to survive not just being chronically ill, but in my case housebound, I had to let go not just of my past but everything about your health as well. It is easy to get caught up in the blame game, to hold this doctor or that doctor responsible for us not being diagnosed sooner rather than when it eventually happened, to spend your life ripping everything to bits in search for the cause, the thing that you did wrong that meant you got ill, that will make your health worse. Draw a line under it, accept that it happened the way it did and this is where you are now, there is no way back, nothing you can change and if you ever want to be happy again, start a new life, this is day one, this is the start of something new and something exciting as the unknown always is.

It took me a while, like I suppose it does everyone to have that first day that I was happy, that first day where I didn’t want to punch the lights out of everyone who looked at me wrong or didn’t understand that I was ill or who had the misfortune to work in the medical profession, but it happened, I did smile because I wanted to not because others told me to. It took me even longer to realise that I didn’t have to be happy all the time to not be depressed the thing everyone seemed to be waiting for and that being content was far more important. Content is a wonderful thing, content means that you have stopped hating, stopped blaming and started living. It is the first step that follows acceptance, as until you do you will never be content. I have done it so many times in the last 14 years that I now do it without thinking about it or even planning it. Every time I know that things are just too much for me, I wipe the board clean and I rebuild taking into account what is too much, what is destroying my contentment. I don’t do it daily and I don’t do it lightly and yes I do still try to hold onto the things that I shouldn’t from time to time, but I never try to go back, as that is the perfect way to land up in a worse state than I was already in.

Just as I said a few days ago, asking yourself “am I happy” is something we all should be prepared to do every now and then, if your not well fix it, but just as important once your health has gone is to ask yourself “am I coping”, if your not well fix that as well. My answer came back no a while ago, but I always give myself a window to see if things improve, they didn’t so I made the changes to my day that I hope will bring back the answer that I need of yes. If any of us are going to live as well as we can for as long as we can, we have to adjust, not once, but probably more times than we ever care to think of, but once you have started again a few times, it just becomes part of your life, not a horrific process that scares the hell out of you, aim for contentment and enjoy the happiness that comes with it.

Read my blog from 2 years ago today – 17/05/13 – Interpretations of a good life

After my panic of the other night yesterday was a totally ordinary and straightforward day, thankfully! All those things that raise your pulse and all those chemicals that race around when your brain has lost control, maybe not only useful in the past and captured for profit by thrill seekers, but I now know that I would happily live my life without them, as I can only see one way of equaling all of them and that is not knowing…….

Getting things right

I have had enough of this, here ends the wallowing! I hate it when I feel like I have nothing left inside me not just for others but even for me, so just as I have done countless times before, I am calling an end to it and whatever it is that is doing this to me, well it can *!?* right off. I don’t like swearing, that doesn’t mean I don’t do it, just that I don’t like it. Getting rid of a blue meanies is hard work, but it is like everything else, if you already know that you can do it, well half the battle is won, it’s when you don’t know that you can do something that it really holds the greatest fear and that fear alone can make it impossible.

I woke this morning and found myself once again having great difficulty getting out of bed, since Adam started actually coming to bed, even though he still sleeps most of the night on the settee, I have shied away from using the mattress elevator. Partly because when he in not working he is normally still asleep when I get up and partly because when he is about get up, I feel embarrassed to use it. Adam, shut-up before you bother saying it to me, I know it’s stupid, “stupid” has a lot of things to answer for in all our lives. With it being a bank holiday, he is still asleep, so getting off the bed this morning was a struggle, something I have to admit I have been finding more difficult recently. The problem is the pain in my diaphragm and my stomach, I have been compensating for a while now, trying to use other muscles, like those in my waist to do all those actions that my main muscle structures just can’t actually manage. The result is the pain is just spreading and spreading, everything is getting more and more difficult, which is a big part of the reason that I got myself into a downer for the last few days. Once I had put on my pyjamas I took my first step and straight away wished I hadn’t, just like yesterday the shockwave caused by putting my foot on the floor, caused pain right through my left side of my chest, especially around the lower edge, where my diaphragm is attached. In less than 4 minutes from waking I already knew what today held for me, the same as every other day recently. By the time I went to bed yesterday I had pain running from my lower ribcage both sides, across my upper body to my left shoulder, the left side of my neck and right down my left arm to my fingers, two hours into today and I am almost at the same point again. There is one big difference, I don’t care if I have vivid dreams, I have already taken a booster.

It is the one thing I haven’t been able to work out ever when you can’t use some muscles, for whatever reason, how do you avoid damaging those that are called in to cover. Every part of our body is designed to cover certain actions and they really don’t like being used as substitutes, something I discovered when I lost the use of my arm, as my right arm alone just couldn’t compensate, it didn’t have the strength nor did it even know how to carry out actions alone that it usually had some help with. That I know is a clear example, but the point is that it doesn’t matter if it is a limb or some part of our internal systems, they can’t manage without everything around them working properly and that is far a more painful lesson to learn. Our bodies take such a battering from what our health does to us, between our muscles withering in front of our eyes, areas that are in pain and can’t be used as it causes more pain, it isn’t really a surprise that we land up hitting points where we feel as though we are under attack and that relief will never appear again. Just that simple action of getting off the bed, something anyone else would do without a single thought, didn’t just pull all the already aching muscles of my waist and stomach, but also those in my arms, which took most of the strain not to mention my thighs, as I tensed them instead of my stomach. Every action seems to have a problem attached, even though we don’t realise it, just sitting uses muscles just to stay upright on a chair. Add in the annoying twitching nerve in my spine, something I have been holding still now for years by using my waist and back muscles, muscles that won’t hold it now and each twitch is now pulling on muscle higher up and the spreading pain starts to become clearer and clearer.

I never foresaw just a couple of months ago that what has been an ongoing problem with my bowels, could land up in such a mess of pain. Constipation sounds like nothing, it sounds almost comical and something that isn’t even worth thinking about, a few laxatives and that’s it dealt with, but it’s not. There is no tablet, no medicine, no diet, that makes dead nerves work, just as there is no medicine that is going to fix my PRMS or COPD or any of the other things that might be hiding inside me. To date my attitude has always been, if they can’t fix it, I have to live with it. The important word there being “live”, I have let it get the better of me slowly but surely I let it wear me down and I am the only person who can fix that, if nothing else. So today is day one of kick myself up the backside, but it has one huge caveat, if I get the letter to go to the hospital, there is no putting on the brave face when I get there, this time they will see the full picture, with no smiles there to cover anything up.

It hard to smile all the time, ill or not, but what other choice do we really have. Pain isn’t something we can get rid of, it’s something we live with, like it or not and trust me none of us like it. There is one thing that I know without a doubt and that is moaning about it and letting it play on our minds, does no good what so ever, the last two days achieved nothing other than to make me feel worse. I am the one who is always saying that happiness is a choice, so I know that without anyone reminding me, I chose to be happy a long time ago, I just needed to remind myself of that fact. In a funny way, having a few bad days every now and then can actually be good for us as it reminds us just how good our lives really are and that there is still so much to enjoy, even if our bodies don’t totally agree with us and as long as it is just a few days.

Read my blog from 2 years ago today – 4/05/13 – Health warning

Sometimes life moves so fast that there is no chance of keeping up with it, but at others is will drive us mad with it monotony and incredible resemblance to a snail. I guess as humans somewhere along the way we developed this huge ability to never really be happy with the way things are, and a need to have everything just so, which they never are. Wishes and dreams are what fill our childhood with wonder and cripple our ability to be…..

A purposeful coincidence

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……