Inspiration for me

I don’t know what got into me yesterday, but even after I finished my post, which usually clears my head, I found myself still feeling the same. Reading it back, was a huge mistake, I probably should have just left that for a few hours or so, but I didn’t. I found myself fighting tears, tears that had no reason or no result. I honestly felt so alone, it was painful. The stupidest thing about that is, I had Adam here. He is on a weeks holiday just now, so oddly, I haven’t been alone for days. Mind you, I guess that’s why that sort of alone hurts, I could have had a crowd around me, and I still would have felt the same. So I am happy to report, that today, that feeling isn’t gone, but it’s back in its place, part of me, but not all of me.

I am now on my third load of tablets, designed to help with the pains in my guts. The first two failed dramatically. The Mebeverine brought so many problems with it, that the fact that it did help in lessening the pain, didn’t matter. I was left with the worst heartburn I ever remember having. Getting someone who has no memory, to take a tablet twenty minutes before a meal, is now officially impossible. I either forgot to take it or my own speciality, I took it, then forgot to eat. That one produced the worst heartburn, but, even when I got it right, the side effect was still there. The night that it managed to scare me, was the one when I actually woke because I had a mouth full of sick. Not a little bile, but a mouth full of that day’s dinner. I’m just glad that I woke.

I am now on Alverine. This is just day three, and although it isn’t perfect, buy I feel so much better. There is still pain, but it is at the same level of pain as I get anywhere else in my body. In other words, it is at a manageable level. For the first time in about three or four months, I have just had two nights sleep without interruption. For a couple of years now, I have slept for 11 hours straight every night, then suddenly, I was awake every night in pain. I have become so used to it, that I had a set routine, I would go to the loo for a pee, head for the kitchen, have a cigarette and head back to bed. The problem with that was, that I never went back into a proper sleep. I would say it was a mixture of a dozing and moments of true sleep, which just isn’t good for me. If there is one thing that I need it is sleep. Right now, physically I feel better than I have in ages, which is probably why I felt as I did yesterday, it happened, because I could, I wasn’t tied up in nothing but extreme pain.

For two nights in a row, I have slept, nothing got in my way. Then this morning, I woke with the alarm, but at the same instant, I felt the pain in the left side of my back and the top of my legs. It is something that I get a lot, but it was just a bit of a bummer, to find that not all the pain was controlled quite as much as I thought it was. Right now, I’m still in that pain, lessened because I’m now upright, but I know the only thing that will clear it, is emptying my bowels, and that’s probably not going to happen for a couple of days. I know that I was probably just being over-hopeful, but if we don’t hope, what else can we do.

It was a long time ago now, that I made the decision that modern medicine was the thing, I was going to put my hope in. Having over the years, tried almost anything that I could get my hands on, that I could afford, I made my choice. For me, it was partly down to cost. Living in the UK, I have the benefit of free medical care. Living in Scotland, I also get all my medication for free too. Without a doubt, if I had to pay for everything, I probably wouldn’t be so quick to say, “This isn’t working please can we try something else.” I suspect, working or not, I would, at least, push on with what is partially working until, I had taken everything I had been prescribed, before switching. So I am in a luxury position compared to many, in reality, it’s the way it should be for us all.

I have to say the costs that others faced, wasn’t something that I even thought about until I joined social media. It was like crashing into a spike-filled brick wall. Suddenly I found myself talking to people who were having to choose between their medication and basic things we all need to just live. For me, that whole experience was extremely hard, I even went through a spell of feeling incredibly guilty. Here I am surrounded with medication for every aspect of my health, talking with people who didn’t even have access to anything beyond aspirin. I felt it so badly, that for about a year, I stopped talking to people on twitter at all, and closed down my Facebook account. Yes, I still tweeted, but I avoided actually responding and ran a mile from the chance of chatting. Almost daily, people tell me how inspiring I am and how much they admire me. Personally, I don’t get it, as to me, if there is anyone who our admiration should go to, it’s those who live our lives, without the care that we have. If for some mad reason all my medication was suddenly taken away from me, well, I don’t think I would be here very long.

Today, someone asked me how I managed to be so upbeat all the time. Well, now you know. It doesn’t matter how bad I might feel, how much pain I am in, I know that I am lucky. Yesterday was one of my blips, I wouldn’t be human if I didn’t have them. Yes, I was already a positive person, but the above is something that I never forget. I no longer feel guilty for the care that I get, but I do count myself as so privileged to live in a country that even cares at all.


Please read my blog from 2 years ago today – 19/03/2014 – A perfect life

Today so far is a good day! It actually feels good to just be able to say that as it doesn’t often happen, the last couple of days have been kind of draining and I have spent a bit more time sleeping than usual, I guess it made the difference, but I can’t really sleep more every day, as I just wouldn’t have time to know I’m still here and alive if I did. These days I sleep 11 hours at night and between 1 and 2 hours during the day, imagine taking that many hours out of your day, whilst still trying to be active in the world and to spend time with those you love.

It is probably the one thing that I find the hardest, just how little time I really have to spend with Adam. During the week, I see him for less……





Finding our way

When you share your life open to the world, like I do, you never know what the reaction of other will be, nor what their comments might be. Every time I let a post free, out there into the world, is a little like packing up a child ready to go off to school, then putting them outside your front door and saying goodbye. In some ways, your glad to see them gone, as you have peace and quiet, at last, you also know children will be children and they might let you down, or make you proud at any minute of the day. The noise inside my head may go quiet once published, as the last chance to change or tidy anything is gone, my child is heading off for the day. Just like a real child, I get reports, not once a term, but every few minutes or hours. There they are waiting, a red dot telling me that one of my teachers has something to say. Just like opening a child’s school report, I open it with trepidation, it could say anything what so ever. I could have someone telling me that I am a total idiot, or that I’m a genius. Some even give me a star, as they like it; some give me a silver star; as they are telling their friends on Twitter of Facebook, that they to should stop by my page; other give me a gold star; they do me the honour of not just telling friends, they reblog my work, on their site. Which is all good, but then there are the few who do just the opposite. They tell me just how wrong, or how stupid or petty what I have just written about is. Some are even spiteful and hurtful, luckily, they are few and far between, but they happen. Every red dot sets my heart pounding, so which is it, good or bad, or better they’ve chosen to join me and follow my life work.

I don’t know if I am just lucky, or if I am as good as some say, but they keep reading, so I have to be doing something right. What few or any of them realises, is just what they do for me. How every tiny piece of feedback, gives me hope, gives me purpose and how it helps me live. I know that most read because we have something in common. Our health, our lifestyle or possible as little as our age or the fact we’re both still alive, but we connect and when you’re alone for hours every day, those tiny connections mean the world. Just seeing the visit numbers rising and rising, to know that more and more are stopped by, just to read my words, always means the world. Some say nothing, just read and go, and that’s fine too, because, I know someone I don’t even know, from somewhere in the world, sometimes from somewhere I’ve never heard of, has come to see me. I have been asked a million times if I ever get lonely, how can you be lonely when not a minute of the day or night passes without a visitor, or a tweet reader, responds to something I have said. Lonely is an impossible place for me to be, I simply don’t have the time and that thanks to every single one of you. I didn’t realise when I started to write just what I was doing, what I was opening up, or how much of my life it would take over. When I started writing, I thought it was just a blog, a simple written record of being sick and housebound, not an entirely new lifestyle and life. About a year ago, the penny, at last, dropped. This is my sanity, my way of dealing with everything that my health and life have done to me, but I also knew that it was still more. It’s you lot, my teachers, my friends and family, the ones who praise and chastise, who keep me going with encouragement and smiles. This was never just a blog, it’s a life, in so many different ways.

From the beginning to the current day, I have posed questions. Some just to make you think, others as direct pleas for thoughts and advice, and I haven’t been failed by your responses. Not all have panned out, but they have at least pushed me into looking at things differently, so thank you. It’s also proved to me, that this isn’t just my blog, it’s yours too. If you didn’t visit, if you don’t keep me going, I would have given up long ago with this writing lark, yet now, I can’t imagine my life without it. So many people thank me, especially on Twitter for my constant encouragement and inspiration, well I am now thanking all of you for yours. Don’t ever question what it is that I get out of this, as that is exactly what it is, your support keeps me going, this and Twitter are the ultimate two-way street. I think that too many people have either forget or have become jaded by a cynical world, as so many people do look for an ulterior motive in everything. That is something I find incredibly sad, probably one of the saddest things is the fact, that the younger the person, the more they doubt that anyone can do anything out of love. It has been one of the hardest messages that I have had to get across, the fact that I’m not selling anything, that I don’t want anything, that I am just doing what is right, not just for me, but for others too. I’m proud to say, that it doesn’t matter how horrid life has been at times, I never lost my faith in people. Maybe not the people I was surrounded by, but for people in general. To date, that still hasn’t changed.

Don’t get me wrong, I have had the odd hateful message, the odd comment left by someone who clearly has a problem either with me or with life. In the past, I used to spend time, trying to change what they said, to make them see that I’m harmless and simply loving. For some, they backed down and retracted their claws, for others, all I could do was to block them from my timeline, or delete their messages and tell myself for days to follow, that it wasn’t me, but them. Which if you ever need the proof that we have switched to an online world, well here it is. It took me as long to forget and move on, as it would have done if someone I knew, had reacted in the exact same way to my face. The lines between the real world and the online one have gone, this is now life. Back at the point, I first joined the internet, back in year diddly dot zero or whenever it was, I would have sat and laughed at those sort of messages, something on a computer screen was detached, unimportant and a million miles for reality. Now they are the exact same thing.

Life changes when you have a chronic illness, not something I need to tell anyone, I guess. But that change is nothing, not even a tiny speck in comparison to how it changes when you become housebound and the years start ticking by. You don’t notice that change in the first couple of years, you’re so busy trying to convince yourself that you can live this way, and looking for the way to do it. I don’t think it is until about year three or four, that you truly understand exactly, what it really means, that you haven’t been out for years, and your never going out again. You might think, that it would hit in the first year, it doesn’t. What you feel back then is just anger, betrayal by life and a mix of bravado and determination that you’re going to survive this, whatever it takes. You are so bound up in all those feelings that don’t actually matter, that you forget about the ones that do. I don’t know exactly what drew me into writing. What made me decide that I was going to open up my life to the world, or if I even did. I know for a fact, that I didn’t ever think that I would still be doing so four years on, or that I was going to actually open up my entire life, in all its details. But I guess, it’s not that surprising really that I did, after all, that’s me as a person. I’ve never felt that I had the slightest thing to hide, my life is my life, the past, the present and the future. Being here, being able to write and to find others find my world, probably far more interesting than I do, is a blessing. Without a doubt, I don’t know how my life would be right now if I hadn’t. I doubt, I would be as happy, as together or as fulfilled if I hadn’t. So thank you, blog for being here and thank you if this is your first visit, or if you’ve read from the start, as every single person who has ever read a single word, matters to me.

Please read my blog from 2 years ago today – 11/12/2013 – Take a breath and read

Just like everyone else I hear daily that the medical profession are either making breakthroughs, or need more money to work on a cure for some illness or other, but unlike many…….


October Morning Mist by Pearl Photo

I know that I don’t often have photo’s in this blog, well between “Touching Space” and “Just to Share” I think I have enough, but this picture is special. First it is titled “October Morning Mist” and at last it is October, so the first real time for it’s use, but there is far more to why it is here than just what it is called or the fact I actually found and saved this picture in October last year when I had no use for it, well I haven’t been blogging that long yet. It is now one year since I last did a full days paid work. When I found this picture I saved it because I felt like I was wondering around a forest filled with fog, I really couldn’t unusually for me, see where I was going or how to get there. I think I spent nearly the whole of October feeling that way, I was doing all the right things but not getting the right response, lots of nice words, but no job. I found myself looking at this picture a lot when I was at a lose and then feeling determined again to clear that mist and get to the other side. So it inspired me by being there at the right time. It is strange how things like that happen, you stumble across a quote or a picture, or even turn the TV on to find that there is a program on which matches exactly what you have been thinking about, life is weird like that. So would say it is fate other coincidence, and I just simply don’t know but accept it as interesting.

I think inspiration comes to most of us when we aren’t looking or expecting it, I still at that time believed in my heart that I would find a company that could see past my disability and see the experience and knowledge that I had to give them, I was wrong. My life has actually always worked this way that when I am forced into making a change, without meaning to, I have landed up doing something totally different and something I totally love. So I am not surprised at where I am now at this time, so OK it is not a job and I don’t earn from it, but I love writing and love more knowing that it has a real purpose. That is why I posted this picture today, it inspired me when I needed it and led me off on a path I didn’t mean to go down, in a way this picture was the catalyst to my writing. I think more than anything when you are in my position of being housebound and knowing what the future holds to an extent, that you need things to inspire. I used to find my inspiration from the people around me, being a people watcher I always saw things in people that I bet they never saw in themselves, I no longer have people around me, so I now very much draw from the pictures I find. It even to an extent can help with the pain, I know when things are bad that sitting for a while going through picture which relax and or distract really makes a difference, probably why I have so many posted all over the place and stored in my folders.

I have said before many times that achievement and purpose are really needed to get you through being housebound and I do totally believe that, but I would also add in you need inspiration. Inspiration can drive you on through some of the toughest times and I think many give up and sit waiting for the end as nothing inspires them any longer. I think we all draw our inspiration from having people around us and in contact with us, we get it from work colleges, from friends and from family, when you loose nearly all of that due to your health, you become a little lost. I think it is essential that you find another source and not just one, we all need several, as we had several colleges and several friends. I am not a music fan really but I can see how simply that could be a huge help to some. I made sure a long time ago that my home was filled with beautiful things to look at, I knew that I would reach a point when I couldn’t leave here, I didn’t really think past beauty when I built my collection of crystal, but it inspires me everyday. I just have to sit looking at it and I feel my mood lifted, a small inspiration to keep going, to keep enjoying, but it all adds into my nest and to filling my personal inspiration needs.

Replacing the outside world is impossible but you have to build your own version, your nest and your world. The more thought you put into it, the more it gives you back. I am asked often how I stay positive, I think I am more happy than positive, although I suppose they are the same thing in a way. Well the answer is here. Be inspired, have a purpose and achieve, big thing to do, but not if you do it step by step. Build into your life the things that give back all these things and well, like the picture above, let them take you on a path you hadn’t expected, I found happiness, I see no reason why you and everyone else can’t to.

Picture Details:- “October Morning Mist” by Pearl Photo (

Normal service restored

I have been told many time in my life that I have a way with words and an ability to empathise with others, probably why I was a successful sales person but more than that it is something I can only explain has come from inside. I wasn’t always aware of it and to be honest the first clues that these where parts of my personality didn’t show themselves to me until I was 13 and I started at school to take ‘Drama’ as one of my subjects. I wasn’t ever selected to play the main roles in anything, but I was continually asked by the teacher to demonstrate with him how something should be said or acted, it puzzled me at the time. Why, if I was so good that I could teach the leads how to act or say something, why, wasn’t I playing lead? The answer was simple, my height, I towered over all the boys in the class, the balance on stage of a leading lady’s partner reaching to almost her shoulder at best, didn’t work. I only wish someone had told me that. Like so many other things in school I took it personally and gave up Drama the next year.

It is acceptable for teenagers to act irrationally and to storm thorough and out of situations at a speed of a tornado, because of my home life I was searching for approval, somehow that came across as being difficult to adults, well until I developed a vocabulary and the ability to combine it with action, then my rebellion changed and I did things that left my class mates open jawed at times, like the day I convinced my English teacher that I could put her out of her job, just by having a conversation with her, saving myself a punishment for not handing in homework on time. It became a game with me, a way of beating adults and standing my ground without being punished for it. During my first marriage this was beaten out of me and I became a somewhat small and simple individual who was inside always 16, as it often felt as I though I wasn’t allowed to grow up after we married. It took 10 years for the real me to wake up and move out and I spent the next 10 living the life I needed to to catch up and grow into an adult, but ironically less than 10 more yrs on I became housebound.

We all grow in different ways and at different speeds, but the talents that are inside of us all is to often not used or exercised. Outside of great friendships that I have had throughout my life my love of language and understanding of emotions haven’t really been used to any great extent, yes I have used both to help earn a living but until now I haven’t felt that they were being used for any real good. There was a comment that was left on yesterdays post that has prompted today’s, the first line is “Thank you for explaining the unexplainable to those who cannot hope to begin to understand.” On one level it is a wonderful complement, on the other it makes me realise that I still need to try harder.

I think we are all guilty of thinking that everyone around us can understand when we say I have pain, but why should they? It is like the conversation I had with my English teacher, I won because I had an unfair advantage, I knew in advance how to argue it, combining open and closed questions that lead to only one conclusion, she was boxed in, and couldn’t win. I know what my pain feels like, I live with it and it is part of me and just like that conversation you don’t have a hope in understanding unless I let you into every little bit of it. If anything in hidden the result will be a pointless ramble. A few have asked me do I really need to be so graphic, or to go on about the less palatable subjects, or even the socially normally undiscussed, well there is your answer, yes I do and if you truly want to understand you will read as short of a ‘Vulcan mind meld’, there is no way of letting you feel what life with an chronic illness is.

Somethings are easier to explain than all of you should find this one reasonably simple to grasp, I had a really good day yesterday! If I could have jumped with joy I would have! OK some of you might find my reasons basic but after the last few weeks I actually do feel I have something worth celebrating. When you live as I do, it is days like yesterday that are the points that make other things easier to deal with. Anyone will tell you that pain overrides everything and it really does, reading back the last couple of weeks post shows that clearly, I would actually go as far as to say that it changed slightly my way of writing. All the expression is dampened and the words I chose to use feel to me to be blanker, less alive, and that is something I stress constantly that I am alive, not just going through life. I think that is what makes being housebound more than just bearable for me, that I still can maintain the feeling of being alive. Jumping out of bed and greeting the day with joy, is not in my scope of activities any longer, more a slow slope upwards while my body accepts it vertical position and initially forced activity. Since Saturday I really feel that I have managed to sort out the pain meds and after the rotten weekend I managed to eat a bit more and hold on to it, such simple things, but simple thing are often the most important. No doped feeling tells me that I have settled to the medical compound of MST and it is holding the pain at the level I can live with comfortably. My Dr’s surgery is only open for a half day on Tuesday so I will leave it until tomorrow to call and have a chat about the dosage I am happy with, I can’t see why he would not agree but I always worry about conversations with medics, we all have an authority figure that stumps us and unfortunately for me it’s medics. Even though he withdrew all the medication for my bowels I am not getting any relief from the constant leakage apart from about 10hrs after I spent the night throwing up, but that isn’t a solution that I want to repeat. All in all though I feel more optimistic about the coming week and not as though it is a daunting obstetrical that is waiting to crush me, which is how the whole of last week appeared.

Sunlight from below

I saw something yesterday evening that I don’t remember ever seeing before in my life, I was transfixed by it but it lasted less than a minute and unlike the new generation I didn’t have a camera stuck to my hand. I was watching ‘Antiques Roadshow’ when in the corner of my eye I saw a light, it was more of a glow than a light and it was so bizarre that it was transfixing. Living in a flat the view from my window is really that of the flats across the road, with gaps filled with greenery, then more houses. Noting that isn’t on almost every street in every city through out the world, so seeing what looked like was the guttering of the flat opposite flood lite from below, was odd. I had to stand up and go to the window to investigate. There were no floodlights? Every house and every tree was lite from below by unseen lights. Scientifically I expect the answer was that it was refraction, the setting sun and it’s deep colour was bouncing of invisible layers of the atmosphere, but it was magical and only there for seconds, before disappearing.

It was a beautiful soft light, but at the same time warm with a strength behind it, I suddenly saw how our ancestors could have seen just the same and with no understanding of science, seen this to be a sign from the gods. As the effect faded the light of the setting sun became deeper and deeper through the orange ranges and on into deep burnt reds. A beautiful end to a rather damp and dull day. A settled back into watching the TV but I couldn’t stop thinking about it and imagining the scene in ancient Greece with the same illumination covering the Acropolis, it was so easy to see the soothsayer reading into it future events and blessings.

To me this was no sign but it was something new and a little inspiring, it’s not often that God goes down your street and sends blessings on everything he touches. Sorry I’m being flippant again. What I hope it is though, is yet another sign to those reading this that although I never leave my limited living space, I am still finding and discovering new things, a little more proof that life goes on and still inspires from right here in my flat.