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…

It’s good to struggle

My body is still letting me down big style, just as it did yesterday even though I stuck totally to my own diet when I normally ate it, but the pain levels kept peaking and my tiredness was clear to me if not anyone else, although I don’t think my acting skills were that good. I had managed to have over an hours sleep before Teressa and John arrived, but as is often the case it wasn’t really enough. Ever since Thursday, my diaphragm hasn’t settled at all, even when I woke up this morning the first thing I noticed was it was tight and uncomfortable, normally I would wake at least for the first half hour or so, without it feeling as though it is trying to cut me in half. Despite all the work that was done on the settee and the fact I know it is a million times better than it was before they resprung it, added new seat cushions and is now as good as any new settee, it is the worst thing I could possibly sit on for long periods of time. It didn’t matter how I wedged myself into the corner, or tried to lean rather than sit hunched forward, the best place to breath with ease, as the day went on I became more and more uncomfortable. I am actually beginning to wonder if the disaster of Thursdays Pizza had actually a large portion of settee mixed in there, that I just didn’t see at the time. I am still in no doubt that I ate too much and that was the cause of my pain in my stomach that followed on for days, but I now have a small doubt that it was totally responsible for what happened to my diaphragm and rib cage. I know it is impossible when you have conditions like PRMS and Fibro, to ever put the blame for pain on anything that we do, but it does quite often play a role, the hard bit is working it all out.

I think from my experience and those of others, once we have that diagnosis, that medical reason for what we feel, we are inclined to sit back and say there is nothing we can do, we just have to live with it, sorry but that is so wrong. There will always be things that we can’t change, but with them all being so personal it is often hard to give anyone advice or help with their personal conditions. I think it is one of the reasons why I shied away from all those forums that are out there apparently set up to help each other, the problem I found with all of them was always the same, one dominant voice that shouted louder than everyone else and if they didn’t personally make the discovery, or it is something that didn’t like or hadn’t worked for them, it was instantly tainted for everyone. None of us are experts on anything other than ourselves, but I do strongly believe that we should share our knowledge as you never know, it might help someone else. For me, the only rule I have ever had is it can’t cost anything. It’s OK, I am not going to go over all that again, as I honestly think I have said everything before. For me it has always been small adjustments persisted with that have turned out to be the things that make the most difference to my health. Unsurprisingly, food, sleep and relaxation have been the biggest when it comes to how I feel, followed by those things that make life easier or safer, like a new bathroom with a walk-in shower and seat. Dependant on our physical abilities and problems, we all will find different gadgets that help us in our daily life, along with different aids. My personal experiences has shown me that it is all too often the simplest and cheapest that work the best, like a pair of old fashioned nutcrackers for opening soda bottles where the lid it too tight and too small for my hands to cope with. The best gadget there is, despite being one that I have complained about continually, is our own brains. We alone have the ability to work out for ourselves what helps, what doesn’t and what is physically comfortable or not.

I think the worst and most hated gift I was ever given after I was diagnosed was well meant and given with love, but found it’s way out of the house and in the outside bin within minutes of my unwrapping it. Adams gran had bought me for Christmas a trolley so that I could use it to move plates, cups and glasses from the kitchen to the living room with ease and safety. I still to this day just writing that, can feel the hate and loathing I had for that object, irrational to many I am sure, but it is the perfect example of why no one other than the person who is ill, should ever buy something “to help” someone who has a chronic illness, without talking through the whole thing with them first. To me, it was this symbol of how she now saw me, as crippled and unable to cope. It put me into the pigeon hole that said I was a person to be pitied and required, despite the fact of just being in my early 40’s at the time, to be treated as a disabled ancient person. I know that was all in my mind, but our minds are us and far more easily hurt than our bodies are, especially when we have already had the final control over our lives taken away by our health. No matter how helpful other think they are being, we need to learn for ourselves what we need, what works and what doesn’t, not have it imposed on our lives. I try hard not to just give into anything, any new thing that appears has to be assessed over a period of time, before I know if there is anything I can do to improve it or if I need to start looking for something outside of myself. Pain is a symptom, not a sign that we need help, but that we need to assess everything we are doing that might be the cause and to see if we can change it or totally remove it ourselves. No matter how bad our memories, we all have the ability to analyse what is happening to us, if it has anything to do with our known conditions or if there is something else going on and outside help is needed. It is one of the things about modern life that I hate, disabled or not, this feeling that throwing money at it, is going to find the answer. Having lived through the 70’s and 80’s when gadgets seemed to be king and were bought by their thousands, just to land up at the back of a cupboard totally unused, it taught me that the answer is normally to hand and gadgets are usually the answer to a question no one has ever asked.

There is one other danger about being ill that I think many miss and many fall into, if you have something to hand that makes life easy, as humans are lazy and will use it. That may not sound as though it is a bad thing, but if it means that we stop using the little ability we have and simply give in to grab rails or two handled mugs, we lose those abilities faster than we should and our downwards path is accelerated. I can’t do that much, but I refuse to give in and stop doing what little I can. As I said to Teressa the other day, I don’t claim the higher level of the care component of my disabled living allowance, I have little doubt that I would be awarded it, but I actually can still manage to wash myself, brush my hair and so on, if I didn’t have Adam here, I might not. Adam doesn’t do anything other than tell me to do these things, as I totally forget, regardless of any gadget, reminder or alarm, I need that human there to remind me over and over and push me into to doing things, but once past that point, I manage. If I lived alone, well I would need to pay someone to come here and make sure I am doing what has to be done for my well-being, including in some phases eating. I can walk carrying a glass, or a plate, I don’t need a trolley, but if I had one, I might just use it some days and I think those occasions might just increase, slowly eating away a one more skill, faster than I have to lose it. If we don’t use our bodies to their full, we will lose those abilities, it is better to struggle than to not be able to do it at all.

I am sure the time will come when I will need more and more items that right now would make me feel bad about myself, I work on being enabled not disabled. I don’t have anything sitting here waiting for the day that will happen, well what is the point, these days we can buy anything online we need and have it here within 48 hrs. When the day comes I can’t manage that glass, well then I not anyone else, will find the answer to exactly what my problem is. One tiny adaptation might keep that trolley or two handled mug away for another few months, but they still aren’t here giving me an excuse to just give in. I know it might be hard for those who love us to watch us struggle, but I believe that letting us struggle is far more loving than running out and buying something that will take not just the struggle, but our ability with them and in some cases, our dignity as well.

Read my blog from 2 years ago today – 6/04/13 – So where next >

Thank you for all your comments following yesterday’s post, both here and on twitter. I spent the rest of yesterday as a kind of blank zombie, even managing to walk like one most of the time as well. My afternoon nap really hasn’t been making much of an impact recently, although I will sleep deeply for two hours, I wake with no real feeling of change, which I guess is what…….

Taking on the world

I started about an hour ago writing a post about something that I thought was a subject that I had a lot to say about, the attitudes of others towards people who are chronically ill, I just deleted the whole thing. What I was writing wasn’t going to be helpful to anyone, what it was, was quite simply me writing about a collection of individuals who no matter how much I wrote, or how deeply I wished might learn and change, probably won’t. It was yesterday’s post that gave me the idea, when I said that I recommended a wheelchair for those with a stutter as it made my life easier, well it gave me this idea that I could relate all the odd, painful and downright nasty stories and some might just think twice. I had written about two paragraphs when it clicked, people like that don’t read blogs like this, the people who read blogs like this, are those who already care. When I started out on Twitter I had a few grand ideas of what I wanted to achieve, firstly raising the profile of the chronically ill, putting us out there as everyday people with lives to live, regardless of our actual condition as that is what we are everyday people with everyday lives. I wanted to break down the individual conditions and bring together those with a huge range of conditions as I had realised we all share so many symptoms and problems, you don’t have to be identical to support each other and the bigger the numbers the more possibilities. It is easy to feel isolated by a condition that is rare, or has something about it that put’s people off being in contact with others. I may have MS, but my form is PRMS, rare and difficult to find others with or who understand what it does, but if I ignore that and simply say I have a chronic illness, well suddenly millions understand and many will have some symptoms identical to those I live with. All too often in life it is the label that makes it hard to move on, rather than the components that make it up. I may have destroyed today’s original post, but I am still left with the problem I started with, how do we change those who might not care at all, to people who at the least understand enough and might just find a touch of compassion somewhere inside them?

Recently someone asked me why I didn’t have more humour in my blog as they found it too depressing and painful to read. The answer was easy, I write about reality, when funny things happen then I write them, when they don’t, I write the rest. I realised later that I had used a word that thanks to TV has been distorted beyond anything I recognise from my own life, reality. Thanks to programmes like “Big Brother”, “The Osbournes” and all the others they spawned, reality is no longer the everyday life of everyday people, it has to be filled with the ridiculous and the far-fetched. It is no wonder we have a generation of deluded adults in this world, as the everyday, is no longer the reality they seek. No TV channel is ever going to ask me to put camera’s in my house to watch me writing or sleeping and if they did, no one would watch it as my life is mundane and sometimes painful. I know that the biggest challenge I take on daily, when I start to write, is the fact that each post is just a glimpse, one subject or one day in my life. Someone dipping in and not knowing all, that I have said before, could get a very warped view of my daily reality. All too often I find myself wanting to add in things that I have already written about in the past, just to give a fuller picture, I suppose that is the biggest difference between writing a book and writing a blog, I don’t have the luxury of my readers knowing my history in full.

Chronic illness isn’t just a day or a one liner on Twitter, it is an entire life. How we deal with its impact on ourselves and on others all depends on who we are as individuals. It isn’t just the condition, the individual symptoms and how they affect us, it is us from birth to this very day, a blog is nothing more than a series of glimpses, even if those glimpses are available daily. I know I have a talent for being able to put into words it’s true impact, which to me I find ironic as I have often wondered if it was the way I described things that led to it taking nearly 20 years for them to diagnose. I know I can open the eyes of those who don’t understand what their friend, daughter, son or partner are going through and even why they might react in a certain way, but no matter how well I do any of it, the real truth about any illness is it’s personal and no one but the person who is living with it, can truly stand in their footprint.

Every symptom I have, is changed by who I am, if it were possible for us to both be given the identical pain in the exact same place, we would undoubtedly describe it in a different way. The differences we would note I know without a doubt is caused by what we have known in the past as I said, personal. How I can do what I set out to do when I started on Twitter is still evading me, I hope that it is just a case of keeping chipping away and hoping that the number will keep rising and my tweets are spread and read by more people and they keep coming here and reading not just one post, but as many as they have time to. My illness may not be identical to what they will see in others, but it is close enough for them to develop an understanding of life in my footprints.


Please read my blog from 2 years ago today – 11/01/13 – Peaceful acceptance 

I don’t know if there is a sleep specialist reading this or if any of you have the answer to something that I am find more than just a little ODD. This isn’t the first time that this has happened but………