Making a differenece

I must have suddenly hit that age, or there really are a lot of desperate people in need of money or wanting to come to the UK. In the last few weeks, I have been hit by so many men on Twitter declaring their undying love, on their first or second tweet to me, that it has quite simply become funny. I guess they look at my picture and read my bio and think here is a target, someone perfect for scamming. I have had the odd one or two in the past, but the numbers have just shot up recently. Yesterday, I think I actually hurt one by accident. He wasn’t like the rest, he had at least taken the time to send me about 15 tweets a day for over two weeks, all in response to one of my tweets. In fact, adding him in as one, I think might be a little harsh as I wasn’t even sure if he was male or female until yesterday. No, I wasn’t being thick, but a foreign name and no avatar make it very hard to work out at times. Last week I started to wonder if my friend was looking for something else, but I couldn’t be sure. Then yesterday, I answered a tweet from him and in it I mentioned Adam, I suddenly received an apology for being friendly with me and promise not to bother me again. He had said one thing I took with a pinch of salt last week, that he was planning to come and see me, and that turned out to be what he was apologising for. People say all kinds of things, something like that felt very unlikely to ever get any closer than just those words, so I had ignored it. In fact, I had totally forgotten it had even been said. Now I feel guilty for just being friendly with someone on the other side of the world. Social media has created this mad world where what we do and say, isn’t like anything we would ever do in real life. A couple of generations ago, you wouldn’t have spoken to anyone without a social introduction, now we not only do we talk, but say the most outrageous things and even personal things, without a second thought.

I have frequently said that if there was one quick and economical way of helping people who are disabled, have a chronic illness, or mental issues and the elderly, is to put them online. What it would cost a health authority is minimal by the saving they would gain from the less frequent visits to doctors and hospitals. Social media is a gift still waiting to be tapped into by those who would gain the most. Loneliness is a killer, and I for one don’t think I would be dealing with my health so well if it wasn’t for everyone that I have met here online. Well almost everyone, there are a few that I could have managed to get on perfectly well without, but the good ones, they out number them with ease. I can say with surety that the majority of issues I have had online have been brought about because of my high number of followers and people that I follow. The numbers alone bring in a degree of nutters, a number of scammers and some, well some that shouldn’t be online at all. I can say that with surety as I didn’t even notice them until my profile level was up over hundred thousand followers, then they all started to appear in droves. To the average user, this place is a godsend and should be utilised for it’s benefits.

When you live with a memory like a sieve, trying to hold multiple conversations with people all over the place is hard. I do try to remember all their personal stories and their reason for being there online, but it’s hard. Just as I am useless with names and faces, I am useless with small chat details, especially when people vanish for weeks and then suddenly reappear as though we were chatting yesterday. It is a difficult world to keep hold of, even more so when they suddenly change their avatar, which was at least a clue to me as to who they are. Trying to remember of a hundred thousand individual and very different followers, is impossible, yet some seem to expect me too. I love my online life and all the people it has brought into my circle of reach, but I can see that it is going to get harder and harder as time goes on, to just make sense of it all. One of the reasons I gave up on Facebook was because people had different names and avatars from twitter, but they expected me to keep track of it all. I couldn’t and it made life harder than I could deal with. Don’t worry, no I don’t intend to give up on Twitter, but please be reasonable when dealing with a sieve and accept a simple fact, you or part of you, might have fallen through one of those holes, not intentionally, but because it just happens.

To date I haven’t tried to use Adams smartphone or even a tablet, I am still content to be sat here with my beloved desktop computer. I have though thought about making a change, not yet, but in the future. With my legs slowly going, I can see the day will come when I can’t clamber out of my chair and make my way to the otherwise inaccessible office space. It appears to me that technology may have actually come up with a new form of computer conveniently at a point in my life that I may need it. I have to say I was totally against them at first. Clearly I wasn’t the only person who looked at them and spotted a problem, everything about them was too small. I have noticed that they are slowly getting bigger, which might just mean that my overactive fingers tips might be able to actually to touch just the thing I want, not ten others at the same time. The only thing that worries me is that I can’t actually go anywhere to test run any of them. It will be a case of pot luck if I choose well or not. The internet may be here for me, but finding the correct access point to match my health needs, is far harder to get. Although I now have little doubt that it is out there somewhere.

In some ways, one of the beauties of being online for many I am sure is the fact that they can be totally anonymous, especially if they have a disability. Suddenly, online all of that can vanish and they are just part of the community. No one has to say anything about their health unless they want to, I can see why some find it a wonderful freedom. I chose to be upfront and totally open about everything and I know that is what draws many to me. They know that what I say is true and that I at least believe every word to be accurate. But that actually puts a pressure on me that I never expected and it was worse on Facebook than anywhere else, people ask me for advice. I have frequently been stunned by the some of the help that I have been asked for, as though I am an agony aunt and one with a knowledge of every single thing in the world. I have lost count of the number of times that the words “I know you will tell me the truth” has been in a tweet and 99% have nothing to do with health. I guess all of us find ourselves in places we don’t expect to be, but this one really bemuses me, as I am just an average person who has spent the last 8 years indoors. What do I know about the outside world? Nothing, any longer.

Although I can understand why some might want my help, for the life of me I can’t understand the next oddity that being online has brought me. Of all the things I expected that being a high profile person online would bring my way, not once did I expect to find myself almost daily sitting looking at a single part of the male anatomy. I’m sorry, but I just don’t get it? Why do some men think this is the way to get attention positive attention from a woman, disabled or not? All it gets from me is a quick report to Twitter, followed by being blocked. After just over 3 years on Twitter I have in the last 18 months been bombarded by tweets and follows of this nature and trust me, it’s not what you want to see while sitting eating your breakfast. Equally, neither do I want to be staring at the female equivalent. I have over the years heard on the TV that there is a huge issue with porn online. I can confirm that and add that you don’t have to go looking for it, it presents itself over and over again. Yesterday alone I blocked 15 Twitter accounts.

I don’t think that I could be happy if I didn’t blog and tweet. It is now so much part of my life that being without it for even a day would leave me at a total loss. I have completely replaced what the outside world gave to my life, but being here. I doubt that when the world of social media appeared that anyone who was writing the programmes even once thought about the housebound and disabled. I doubt that we were even a flicker in a dark corner of their minds, but this has been as of much of a positive impact on my health as my meds are. I once feared that being housebound would bring an end to my working life. It wasn’t I just moved it all online. When redundancy and not being able to find a single company interested in employing me, despite thousands of emails and applications all done online, I joined the world of social media. Computers have been in my life for the past 19 years, in ways I never once expected or thought possible and I can see them now being with me to my final days. I don’t normally envy people at all, but I do envy the generation now growing up, as they have the power of the world at their fingertips. Throughout their lives, they will naturally live within two world, connected in ways that we can only now imagine. Should one land up like me housebound, I doubt their lives will skip a heart beat, their lives will just naturally go on. I know I am lucky, I am the first generation still heading into this bright new world where acceptance is automatic and apart from those with a desire to show off their most unattractive attributes, I love every single one of you and thank you all for letting me into your lives.

Please read my blog from 2 year ago – 20/09/2013 – Reaching the world

Another day another post and what happened to the rest of this week, how on earth did it get to be Friday? It has been one of those weeks when I have slept so much that I actually feel as though someone has stolen a couple of days from me at the very least. I don’t suppose it really matters but…

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…..

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……


I found myself up this morning about an hour early, the only thing I could find that could have caused me to wake was a pain that I normally find I can ignore, more than ache but not deadly. I know your lungs don’t fill the whole cavity within your rib cage, but this was in the lower quarter on my left side. Everything always seems to centre on the left side of my body, I have always found it odd that illnesses affect one side more than another, yes I do know that each half of the brain controls one side of your body, but that doesn’t explain why my left lung is worse than my right, or why I have more pain in my gut on the left side. In fact just thinking about that I have realised that the only bones I have ever broken are both on the left side as well, it is just a little odd. When I first woke I didn’t think it was bad enough to have woken me but it hasn’t changed at all, so the build up of it might have just done it. I wanted to go back to sleep but I couldn’t, so I got up and fixed the bed so that Adam could head through and be able to lie down without having to move pillows and so on, two hours later and he is still sitting on the settee. When I came through here he instantly woke and started asking if I was OK, he does that a lot, but he went into one of his ask and ask again, then apologising for asking, eventually he explained, he is worried because I am now out of routine and he knows all to well what that does to me. How could anyone not love someone who cares so deeply. I know a lot of people who have lost their partners due to their health and quite naturally I did fear that as much as my illness at first, but in time I accepted that he was going no where and more than that, he still loved me as much and he was with me for the long haul, PRMS or not. Because of who I am, I know without a doubt that I would have managed the early stages on my own with out too many issues, but now, well there is no way I could be living at home without him, not just for the practical things, but for the true support that he gives me daily. I have to say I really admire those who are dealing with anything like this totally on their own, as even the strongest amongst us need love and support.

Once your life has been taken over and you are living with a body that is totally out of your control, every day life is really tough. Quite honestly it doesn’t matter how positive you are, pain is still pain and suddenly finding yourself on the floor, as useless as a newborn, doesn’t become any easier to accept. I know that others see me as this incredibly positive person who can make others feel better about what is happening to them, but I can only do so because I have learned how to change everything around and find either something to laugh at, or a glimmer of hope somewhere with in it. Part of that is because of the life I have lived, I learned at a very early age so survive I had to deal quickly with what ever had happened and make it into something that wasn’t going to totally destroy me. Some of the traumas I lived through could have so easily shaped a very different person, I can’t explain what it is inside of me that is different, or how I learned to be a survivor who didn’t feel like a victim, the beginnings of that is so far back that I honestly can’t remember. All I know is I quite honestly have never known how to hate, as it was something that didn’t and doesn’t make sense to me, so I just don’t do it. I also for some reason learned not to apportion spiteful blame on anyone, yes I could say that was my or their fault, but I didn’t hate them for it, I just got angry about it for a while. It wasn’t until a few years ago that I actually let go of even that and I learned to forgive, to remove that blame from all of them, including myself, life is a series of events, events I just live through and once far enough away from them, I then try to find something positive in them all. The other part, well that’s you, you and everyone else around the world who reads what I write here and on twitter. There is an amazing boost in seeing the numbers rise daily as people read, in reading the comments and tweet which arrive in reply to mine, each and everyone of you lifts me and helps me get through my day.

It was actually Adam that started me think about what I have just written, we were as normal watching TV and I can’t remember what brought the subject up, but it was Adam who pointed out to me that I always find that positive in everything, that I have a knack of moving through life without any of getting me down and I never seem to expect the worst of anyone or anything. Despite him, or the thousands of tweets I get telling me I am this amazing positive person, I just couldn’t see it or agree with them. Even now after I have analysed it and proved to myself that yes I really am a glass half full person, I still can’t see what is so special about that, surely half the world is glass half full. The good, the funny, the happy is always there, we just have to look and when it comes to surviving something like PRMS, well I would say it is an essential skill that if you don’t have it, you should be at the very least trying to learn it, as it makes life so much better.

So right now I am sat here still in pain as I always am, with a history that is here for anyone to read, yet there is still a smile on my face. Happiness isn’t about the past, it isn’t even about the now, it’s about what is inside of us, that feeling that tells us life goes on and it’s not the end until it arrives. Happiness is about the good things, the fact we’re still alive and there is still life to live, as life isn’t all the horrid things that are happening, pain doesn’t last, it doesn’t have the power to destroy us, as long as we are happy. Happiness is the rest of it, the people we love and who love us, the things that make us laugh and smile and I for one, want just that bit more of it.

Read my blog from 2 years ago today – 13/12/12 – Feeling rotten and tired. LOL!

I am feeling worse this morning, not so much lungs filled with water as lungs filled with horrid gunk! I am sure I don’t need to go into graphic details. I had my morning all planned out before I went to bed last night, I was going to have a shower as soon as Adam went to work and then a bright start into my day of being me on line, instead I am sat here feeling grotty and…..