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…

Working on the future

Adam is on holiday this week, something I think he has needed for a while as work has been getting to him big style lately. The NHS in Scotland is in a state of flux as they are phasing out all the paper notes and going over to on line notes only, with Adam working in their admin department it is having a knock on effect and problems everywhere. I know we all sort of forget about the work required to keep hospital running and focus on the doctors and nurses, but a lot of people behind the scenes are required, people who generally take a huge amount of flack from those who should know better. Things should get better in January as all the paper notes leave the building and will only be used by the department that Adam works for, for some reason the consultants can’t work on the system as the results coming from the tests they run can’t be scanned onto the system. It will make Adams life easier as all notes will be in just one place and not spread over every hospital in the region. Unfortunately there is one thing that is certain to cause Adam more stress than work and that is the dentist. He broke a tooth on Saturday evening, by the time I was going to bed he was down to the lower state of panic, just stating that ‘he would rather have a Pitbull attached to his ****s than go to the dentist’, luckily that has lowered again and he now has an appointment for tomorrow, so I only have another 20 plus hours of how he feels about going. I guess it’s one of those things that if I didn’t love him, I’d be shouting shut-up, but instead I am smiling and laughing inside because this is just the man I love and just the way he is.

I have become used to being on my own through out the working week, so it is always odd when he does take time off, as instead of the silence, other than the TV, I have nothing but my thought and what I am doing on line to fill my time, I now today also have loads of chatter, normally about nothing. Clearly to those who have read for a while, my mind seems to have little trouble in coming up with and working on all the things that have ever touched my life and where they will go into the future. I have always believed that to live a full life you have to stay mentally active, something that I don’t think most jobs actually do, far too many jobs are just repetitive and or dull. To me it is essential to stretch our minds as much as we possibly can, to be constantly learning new things about everything and anything. I know for me that is why I hate movies, beach holidays, drivel on TV and reading most books, as I now have a brain that loves facts and anything that I can analyse and pull in many different directions, clearly proved by my constant theories. I know that my memory isn’t what it used to be, but I don’t see that as an excuse to just give up. The more I know I am loosing, the more I am trying to replace and to add the new, daily. I suspect that is one of the reasons I don’t feel lonely, lonely to me starts when we have nothing happening in our lives and that doesn’t have to include being physically surrounded by people. If I sat all day in front of the TV, I think loneliness would settle in with not just ease, but with incredible speed. I have always thought that loneliness is an extension of being bored, it doesn’t matter how much you love your TV programs, there is something about sitting on the settee watching TV alone, that just feels wrong and actually screams inside you that you are alone. To be honest that was why when I was married to my first husband who was in the Navy, that I spent my evenings always knitting, crocheting, doing embroideries or reading a book, while I watched TV, often managing book, TV plus one handy craft, as being busy on another level, replaced the chatter that naturally is needed to make TV complete. You don’t notice you are alone as long as you have things to fill your mind and the more you have to do.

I don’t believe that it ends at loneliness either, the next thing it will hit is our pain levels and awareness of all the things that are wrong with us, just as I allow myself to do nightly when I go to bed, but if you become centred on it as there is nothing to distract or occupy yourself with, those small things just grow. I know that one without having to prove it to myself, as every time I stop for a short time, I start to feel things that had to have been there all along, I was just too busy to notice them. So now we are feeling lonely, compounded by the fact we believe our health is getting worse and the pain is increasing, it is no surprise that the next logical step is depression.

I have mentioned several times in the past that I fear becoming bed bound more than anything else, loneliness is the biggest part of that. I know there is no reason why I couldn’t have a PC through in the bedroom and there is no reason why I couldn’t do almost everything that I do now, as long as I have the energy to, but there is a physiological barrier, one that is hard to get past. I was brought up to never just lie in bed, the second I was awake, was the second that I had to be up and doing something. I wasn’t even allowed to read a book in bed and for the same reason there has never been a TV in the bedroom either. Bed is for sleeping, not a place to live, only those past living, or so ill they aren’t capable of sitting up should ever be there. The whole idea of me become bed bound, makes me go cold and I cry inside. Logic says that I am being stupid, that there is no reason why I couldn’t have a TV and a PC through there, there is no logical reason why life couldn’t continue, maybe not as it is today, but I could still have what I count as a life. My brain wouldn’t change just because I would be horizontal rather than vertical, I could still learn, still take part in this wonderful on line world, I might have to pull back on what I do, but why would things really change that much. But that’s logic, what I feel isn’t. What I feel is that that would be the end of me, me as a person, as people don’t live like that, they die. How could I possibly do anything, bed is this island, a sanctuary where we go to be cut off from everything, to sleep and to leave the real world behind, it is our place where we are protected from life, letting life in, just isn’t allowed. No matter how much I have thought about it, analysed it and pulled it in every direction possible, I can’t get my brain to accept it, but I don’t want to let go of life that easily, somehow between now and then, I have to work on this one, to somehow settle myself to the inevitable and to make it work for me.

Although others are, I am not surprised at all that I have managed to accept and live my life without depression or loneliness to this point. I have managed, as I could see no reason not to, it’s as simple as that, the practicals were simple, the physiological was easy and life had to go on so I went with it, but there is that one thing that lies ahead, that I can see so many reason not to. Not because of the practicalities, all of them can be managed, but because life has set up through learning and teaching, a row of barriers that once were a virtue to my life.

Read my blog from 2 years ago today – 15/12/12 – Understanding people

I have zero energy today so for that reason I am cutting back a little on all my normal daily activities on line, not stopping just cutting. I don’t know if it is this stupid cold or if it is my MS but I suspect it is both. MS is this horrid illness that sits there waiting for any excuse to……

Horizontal world

Yesterday became a day of feeling totally drained and it has continued into today. I have lost any memory of how long it is now that I have been going to bed at some point either before or at 9pm. It actually feels as though it has been that way for ever, it has now entered that list of things that I have totally accepted and settled into without any thought behind it. Over the years I added more and more things into that list of ‘Well that is the way it is’. I don’t remember ever being that just accept it person, I think most people who knew me over the years wouldn’t have put me in that slot either. I am not sure it is so much a case of just accepting, but more that I am a person who always make the most of how things are, and I have never been a person who constantly want’s what isn’t possible. You don’t need me to tell you that surviving chronic illness clearly is a case of adjusting all the time to the way things are. If you are in pain you can’t just flick a switch, that pain it going to be there until it is ready to go, so get on with it.

You only need to read a few of my posts to see that each day things happen that I can’t control and there is no way of changing them. In the last few days the pain in my arms and the numbness in my left foot and leg have been increasing, both are things that drain me and being drained is a sensation that I really don’t like. It is as bad as the feeling that my pain control drugs are making my head fuzzy, and the temptation to just give into it all and go to my bed, is hard to resist. I guess as well that fighting that feeling is draining in itself and the whole cycle of that through out the day, results in my not being able to stay awake at night and needing to sleep during the day as well. As you can probably tell from the way I am writing this that I am trying really hard to not just work through this, but to find a way to reduce the possibilities of it all getting worse. I have accepted it is the way it is, but I don’t want to accept it getting worse.

I suppose we all have a specter in life, the things we just don’t want to happen and being reduced to lying in my bed, just because I don’t have the energy to do anything else, is one of mine. I’m not so much scared of it as just don’t want my life to be like that, I don’t want to be in the position of having to accept a horizontal world. I expect everyone has some possible road to follow, it’s not something that is guaranteed to happen but there is a strong likely hood, but we just don’t want to go there. I suppose that is the best way to describe it, it is a possibility and one I want to avoid. If my mother was here she would be telling not to worry about the “if’s and but’s until they happen”, well planning for those “if’s and but’s” has meant I have manage to live well to date. The way that my health has gone in the past few months is showing me that that possibility is growing all the time, and all I can do is try to come up with a way to deal with it, without giving in. Right now I just don’t have the answer, it is probably a harder one to deal with than switching to a housebound life, I planned that one out and I was ready for it when it happened, but this one is proving much harder.