Expectations can kill

I so wish, that for just one day a year, we were allowed to be the person we were before we became ill. It’s not that there is any date ahead of me, that I need to be well for, it’s just there are times when I suddenly become fed-up with being ill. No, I’m not falling into depression, I’ve just got this huge desire to be me. It’s not even as though I want to go out, or do anything special, I just want to be free of pain and maddening sensations, to have a throat that swallows and doesn’t think every now and then, that it would like to try being a second stomach for a change. In fact, I wouldn’t mind, if it were spread out over different days, you know, Monday, I have arms, Tuesday, legs and so on. Being ill all the time, is just so frustrating, and yes, I do understand why many get depression, I’d be a fool if I didn’t. I have to admit, that that is one of the most maddening things to me, that so many people, seem to expect me to be wallowing in self-pity. I remember a couple of years ago, Adam came home from work and told me about a discussion, he had had with his then boss. They had been chatting over a coffee and during the conversation had started in a pitying way, about him being my carer. She was concerned about the pressure of my being housebound on him, especially, as she assumed that I would be both lonely and depressed, in her words “a difficult combination”. She was shocked, when he told her, that I wasn’t either lonely or depressed and that I, in fact, spent my time online, doing what I could to inspire others. Apparently, she was totally overwhelmed and speechless.

People make so many assumptions about what it really means to be chronically ill, and not just busy body managers. I have come across so many people, including those who have just been diagnosed, who make the same assumptions. So many, that I can’t help wondering, if some become depressed, because, it is what is expected of them. I know that sounds odd and I don’t mean in any way, that any of them are putting it on, but our expectations, can often lead us into that reality, somewhat similar to the placibo effect. Almost as though because it’s expected, that we have some sort of permission or order to do whatever it is, and not just depression. I know for a fact, that in my those first few months post diagnosis, I for one, at first rapidly became much, much iller than I had been. I had spent so many years covering up, pretending there was nothing wrong, as that is what the doctors kept telling me, that when I was diagnosed, I suddenly had permission to be ill, and that’s just what I was. Not only did I act and appear worse, I felt it, but I had no reason to, nothing had changed, other than at last, I had a set of names for what was wrong with me. I was living to a set of expectations, ones formed by what I knew about my conditions and what I had over the years, seen in other people. I had to snap myself out of it, if I had managed prediagnosis, I could manage post. It took me quite a while to pull myself round and to just get on with life, as it was, rather than as my expectation of it. I have suffered badly with clinical depression a very long time ago, so deeply that I spent six weeks in the hospital. In some ways, I was lucky, as I had learned from that, the warning signs and what to do about it. Talk and talk and talk. I think my friends and even Adam got a little fed-up with me, as I took any opportunity to talk about myself, and how I was feeling, not the spasms and so on, but the rest of it. It was also back then, that I started working on the smile theory, the more you find to make you smile, the happier you truly become. It doesn’t just work, it’s fun as well, which is something we all need.

If you can control your expectations, you will without a doubt, have a happier life, ill or not. I have worked on that one for so long, that my dreams are no longer that better job, or the bigger house and fancy holidays, my dreams are a day free of spasms in my legs. Yes, I know you read the beginning of this post and assumed that it was a mad notion, but if a day off, is my ultimate dream, my expectations from life, clearly aren’t grandiose. No, I’m not talking about giving up on dreaming, we all need to, but expectations and dreams, should be two very different things. Yesterday for lunch, I had a piece of baked brie, with cranberry sauce and a side order of black pudding, followed by a Mincemeat pie with a dollop of cream. I was in flavour heaven, it was sublime. My expectations are small, my happiness is high, that lunch kept me smiling for hours. Just as I smile daily when I read the tweets of people I’ve made smile, happiness grows and when shared, grows faster. Changing my expectations of life was hard work to begin with, but over the years as my health failed, and reality dawned, that there was no cure and never would be in time for me, I had to adjust my needs of life. There is no greater need than happiness, especially when you’re dying.

I get fed-up at times, frustrated often and occasionally, even a little down, but it never lasts. I have a few very precious things in my life, that mean I’m more than happy to go on living. I have Adam and Teressa, their love is essential and prized greatly. I have everyone on Twitter and those who read my rambling here, what more does anyone need, well other the exceptionally good meal. Those waiting in the wings, waiting to see me crumble and join the majority, can stuff themselves. I have too much to do, to many people who care and need me, to give in and I also, still have my dreams, which include, helping others to stay happy too. Listen to the marketing men, the glossy magazines and the lifestyle media and my life sounds unbearable. Listen to me, the person who’s living it and I’m telling you, no matter what my health has done to me already, or what it will do in the future, as long as I have those few things, I’m happy.

Please read my blog from 2 years ago today – 06/01/2014 – Content in the now

I have at last received a reply from the post office about the fact they keep marking on the envelopes that there was no access that day, not just for one day but the worst was a whole week. Since I have been…..


Dangerous or not

The past, is a place that I try not to go, well with a life like mine, it’s safer that way. Just occasionally, though, there is no escaping it. The TV may be my greatest companion, during the day, but, there is a danger, in watching the types of programmes that I enjoy the most. They fall generally into three categories: History, from stone age through to the end of world war two; Medical programmes, both real and soaps, often too close for comfort, but they say that there is comfort in the familiar; Police and murder stories, mainly the true ones. So which was it that triggered my problem? Well clearly not the history one, I’m not that old. Medical stories, often upset me, but not this time. So that leaves only one, it has to be the murder stories, but clearly, I haven’t been killed by anyone. What got to me was a story of a woman who put her trust in someone and even fell in love with them; only to find out later, they weren’t the person she thought they were at all. I had been in a relationship that ended only two months before I met Adam in a night club, and we started to see each other. At first I thought I was imagining it and I brushed it aside, but I had seen my ex in places he had no reason to be. Adam and I kept bumping into him, where ever we went. Then on the night we got engaged, one of my friends was chatting with Adam; he told him he was surprised that I had ever gone out with my ex, as he had been in jail for kidnap. He had kidnaped his ex-girlfriend because she split up with him, apparently, my ex had told him one night when he was very drunk; my friend, of course, assumed that I knew. I hadn’t known anything about it. He had always been secretive about that whole period of his life; there was just this void, that made no sense. When I pushed him, he got angry and abusive, so I stupidly chose to just ignore it. I once did speak to his mother about it, she too wouldn’t tell me, just said “I think it is up to him to tell you if he wants too”. We were together for just over 3 years, I ended it. Like most relationships, everything had been fine to start with, but his attitude and behavior changed, until one day, I couldn’t take anymore and told him to leave. He wouldn’t go, so omy friends Jake piled all his stuff in his van, drove the 30 miles to ex’s parents house with a message to tell him, never to return.

Adam and I had moved in together once we were engaged, but despite only telling a select few people where we were, he found me. He had worked for the electricity company and used their database to track me down. Just to let us know that he knew, he sent me a birthday card. Being stalked is an odd experience, especially as I now knew about his history. He stalked me right up to our wedding day, I didn’t see him that day, but others did. Some of my friends went as far as to stand guard, at our wedding reception, just, to make sure, he didn’t turn up there too. In the story, the girl in my position wasn’t as lucky as me, she didn’t land up married, she landed up dead. The programme was spookily close, thought, to my story; it was even set on the rock scene, exactly the group, both Adam and I belonged to at the time. Her ex also had a history of stalking, kidnap and violence, she didn’t know about. The whole thing was compelling and extremely upsetting. No names matched and the locations where different, but the narrative was too close to my truth for comfort. I had the feeling that someone had been writing my life story; with that standard line attached; “Names and places have been changed to protect the innocent”. If it had been fiction, I doubt that it would have got to me so much, but this wasn’t fiction, it was all true. I guess, it must happen to people all over the world every day, and it was just my turn, to be the innocent victim of a TV programme.

When I imagined being housebound, I always had this idea, that the past would be a place, I would spend a lot of time, but it hasn’t worked quite that way. Long before I had even met Adam or even the ex I just told you about, I started writing my life story. I had so much pain, and so much hurt to get rid of, that I thought writing it all down, might somehow put it all in perspective and help me move on. It was a very long a slow process, as I only wrote when I felt strong enough. I had told myself; that there was no point writing it; unless I was going to be totally truthful and included all the details, even those, I didn’t want to even think about. By the time Adam and I married, I had managed to get it almost up to date, I just had the last 8 or so years to go. Compared to the rest of my life, that part was a cakewalk, so I wasn’t too worried about dealing with it. Somehow, when you are happy, probably the time that we should deal with the worst aspect of our past, we ignore them and stay in that happy zone. It takes those bad days, for us even to start picking at past scars, once we have them open and they are bleeding, then writing about them is easy. About a year after my diagnosis, my writing was complete, but oddly, I didn’t feel any better. It was all there in front of me, but it was also all there inside my head, as big and as black as ever.

Once I was housebound, I sat and I read it all again and as I read, I made a point of firstly trying to forgive those involved in the bad things, and thanking those who made the good things. Clearly, I wasn’t doings so to their face, or even on the phone or in a letter. Some are long dead, and most, I wouldn’t have the first idea of how to find them. It was all done inside me, where the pain lived. I also did something else, I deleted each section as I went along, until there wasn’t a single word left. So OK, the memories, their stories and how I felt at the time is still here, but the power of those people, that they had at the time and still had over me, to that very day, was gone. I know that I have written about forgiving before, but not once have I written about the process that I used or how I made it work. There was something about that act, the deleting of my words, something I know is only a symbolic act, but that action, made it feel real and it finally did put my past to rest.

I honestly believe, that if I hadn’t done all of that, that my story today would be a very different one. When you have time on your hands, which clearly I do, the past does find ways of sneaking into your life. It doesn’t always take something as dramatic as a whole TV programme, just a few words, or a voice that sounds familiar, is all that it needed. Yes, I still have bad memories, but that is what they are, nothing but memories, just as they should be. I can though see, how someone’s life could become nothing but a mire of pain, one that is impossible to escape, especially if they don’t have anyone with them. We don’t exactly have a future, yes, we have years ahead of us, but that isn’t the same as a future. The future is an unknown happy place; a place where we all hope, that our lives will be better than they have been, no matter how good or bad, they have been. My future isn’t ever going to be that, my future, isn’t even going to come close to that. Once you are in my position; all you really have; the only place, where things were better than now; is the past; but if much of it wasn’t better, what you have is a minefield. It is all too easy to be somewhere wonderful in your head, then suddenly by accident, you fall in this huge pit. Those pits are still there, but at least now, they are lined with a bit of cotton wool and a ladder to get back out on.

It is a mistake, for anyone, to think that the worst thing has already happened to you when you became chronically ill and/or housebound. The biggest danger we face isn’t our condition, it is our own minds. You don’t even have to have a good imagination; if you own a brain; it has a million tricks, just waiting there to catch you out. I honestly believe, that part of the reason that I haven’t fallen into depression is my own personal awareness, of what my mind could do to me. My only defence is to try and stay one step ahead of it. To put my life, both past and present, into perspective and to do everything I can to keep myself safe from all those demons that could do me harm. I don’t have the luxury of a counsellor, or spending time with different medics, who can explain what is happening to me. I have only me to deal with the physical and the psychological, so I write. I never thought until I did it, that deleting it could have an even greater power. That programme; well; it took me back to a point in my life that held the most wonderful person, and maybe not the worst person I have ever known, but one of the scary ones. Luckily for me, I had Adam all the way through it. Going back there yesterday, didn’t leave me feeling scared, it didn’t even hurt me. I was as in control as I was the day that I deleted him from my life.

Please read my blog from 2 years ago today – 05/11/2013 – The fix it

The phone call trail eventually found me speaking to the company who have the NHS contract for all equipment supplied to the disabled. It was a ridiculous journey through the web, which actually only turned……

So far, so good

I really didn’t think that I would even get the chance to start writing today, but finding myself up and awake at 5:30 am, thanks to Adams snoring exceptionally loudly, here I am. Actually, it’s not fair to put all the blame on him, yes, he woke me, but my stomach was telling me that I needed the loo, so even if I had managed to shut him up, I still wouldn’t have been able to sleep. In other ways as well I am glad for that earlier start, although I doubt I will be saying that by this afternoon. It is just touching 8 am and I have shoved through everything I would normally do for twitter and managed to get myself ready, so whenever that Ambulance arrives, all I need is my coat. It’s really odd sitting here knowing that I have my makeup on and my hair done, and not just my normal bed head design that prevails at this time of day. I feel like a different person. The entirety of this post is going to have to be done in bits, as I grab a few minutes in between the final touches required before we go, and of course, dependent on when that is, and when we get home again. I just hope it won’t be too bitty.

Something really odd happened last night, not with my health for once, but with my hands. I have been wearing rings on nearly all my fingers for most of my adult life, but the center finger on my right hand had four completely stuck on it. The last one to go on was actually a stupid thing for me to have done. I knew before I even shoved it onto my finger that it was going to be a tight fit, but I have for some reason got rather large knuckles, which means that the even if a ring is too tight to pass over, it will still spin around annoyingly once on. When I pushed it on to my hand, I did so as a way of keeping the other three still. At first it wasn’t a problem, I could pull it off with difficulty, but it did shift. Then I gained weight, need I say more. For at the least, it has been there for 9 years, but possibly longer. I don’t think I have lost weight suddenly, but for over a week I had noticed that my other rings were spinning more freely, so I grasped it and pulled, why it came off I don’t know, but off it is. I know this is a dipsy suggestion, but, could the fact I am using my wheelchair mean that my fingers are losing weight, if not the rest of me? It’s just an idea, but it’s the only one I can think of. I haven’t seen them for years, but I am sure they will be online somewhere, but I really need to buy some ring guards. They act like a spring fitting and let the ring pass over my knuckle then jump tight, holding the ring the right way around.

10 am. I really didn’t expect this, but we are home! Hospital visit complete and without the slightest hitch, if only it was always like that. We arrived at the hospital and were seen within 10 minutes of the ambulance drawing up. The doctor was really nice. She looked not just at the one I was worried about, but several others that are on my back and one that is on my chest. Apparently, I have Atypical moles. So I was right to be concerned about it, but in this case, there is absolutely nothing to worry about. She thinks that what has happened is that it had a slightly raised edge, and that edge was caught on something and been literally lifted it off my skin. Which made no sense to me at all, as I never wear a bra or tight clothes. I am also very careful about how I scratch my back, I have in the past caught moles with my nails. The more I think about it, the more I think I have the answer. Like most people, when I first lie down at night, I shift myself side to side until I am comfy. I am guessing, that that side to side shifting has been slowly lifting it off my back. Neither Adam or I thought about it at the time, but I have been left with the concern that it is actually going to continue separating itself. I have the horrific idea that one day I will wake to find it left on the bed behind me. She did say that because my moles are Atypical, as in they have raised sections and lumps in them, that we need to keep an eye on them for any changes. The fact that I don’t go outside isn’t enough, unfortunately, it is another one of those age things. At this second, we have nothing to worry about.

I couldn’t believe how smoothly the whole thing went, not even the stair-climber was as violent as usual. We were down and back up in a fraction of the usual time and I didn’t feel sick, not even for a few seconds. I know that it was only luck, but when we returned to the room where you wait for your transport home, the crew that brought us there, were still sitting chatting to the receptionist. They were waiting for a patient to come down from one of the wards. One quick call to their base and we were also on their list to take home. I had been so prepared for the fact that we would be sat there for hours, that I was sure that any second they were going to get a call back saying they couldn’t take us on the that run for some odd reason. But, no, we were off and home within minutes, if only it could always be like that. Fingers crossed, our next trip at in November will be just as smooth.

Over the last couple of weeks, I know that there have been quite a few people concerned about me due to this blog. Firstly, please don’t worry. What I have been writing in here is my inner self, my gut reactions if you like to life. I am very aware that lately my writing has been on the dark side, this doesn’t mean I am slipping into depression. When you have led a life like mine, there is a lot of darkness boxed all over the place. In normally work on them privately, but as this one is 100% about my health, it felt right to put it here. After all, the whole point of my blog is for the absolute truth of what chronic illness does to someone. It doesn’t matter what condition you have, the physical effects of them, is less than half the story. There are so many emotions that go with it, and I hope that they have all been shown. It is one of the reasons that I began to write this. You can search as much as you like, but nearly all information available about chronic illness is about the symptoms. Even then, the majority of them only tell you the basics of them. I wanted to know how they felt, what they did to your life, the true impact, not just their names. If you read back to the beginning, you will find spells like this showing up throughout. This one, though, I admit, is deeper and darker, but the phase I am moving into is the darkest I have ever had to face. Without a doubt, one of the dangers of chronic illness is depression. I have always believed that the fact I am so aware of the dangers, having had it in the past, that I should be able to control it. I don’t doubt there will be spells of it as things progress. The idea that I can go from where I am, to my final destination without it, would be ridiculous. I doubt being bedbound, will be a bed of roses.

I have made a point of always working through whatever my brain decides has to be faced. The worst thing I believe that anyone can do with anything, is box it and nail it down, that is the start of all danger zones. Yes, I do box things, we all have to, but I never put any nails in anything. My mind is free to demand that I deal with anything whenever it wants, just as it did the other day with that unwanted image. I also make space most days to deal with those thoughts I packed away for when I had time, I make that time. It’s a couple of years ago now, but I spent several months, just going back over my life and dealing with all the anger, I had inside towards people who had hurt me. I am not the sort of person who finds it possible to hate, no matter what anyone has done to me, I just can’t do it. I can, though, get angry and I had to get rid of it, that’s just what I did. I even forgave them all while I was at it. For me, it was the best thing I have ever done, that didn’t require either money or activity, and I would recommend it to everyone. Peace of mind is a precious thing. Dealing with all that ancient junk, also somehow how, helped me adjust into my new life of being unemployed and housebound.

I have gone from independent to being in need of total support, including life support. Without my wheelchair to get me around, well I would need 24/7 care and too close to bedbound for my liking. Without my nebulizer and my other inhalers, which all have to be used at least twice a day, I would find breath harder than anyone wants. Without being able to breath, well, we all know the answer to that. Mentally, it is actually a bigger adjustment than any of the physical stuff that goes with it. It is both easy and stupid to say, just get on with it, what is the big deal. My first time round using my wheelchair years ago to get around outside and in the office was a get on with it type of situation. I could deal with it with ease, as I saw it as no more than jumping in a taxi, to get me from one end of time to the other. I got in my wheelchair to get me from one end of the building to the other. But in small spaces, or at home, I was still able to walk as my problem then was fatigue. This time is different. This time, I don’t have legs any longer that can hold me up, they collapse, disappear and leave me stranded. This time, I am no longer a complete and normal person to look at, no matter who sees me now, they will see someone in a wheelchair. That is me, that is my new normal and that is a huge mental shift, and all of that has to be in here.

I know it is painful and heavy going for some to read, but I hope one day that someone like me will be able to read it and say, “I too can get through this”, that is the point. Right now, I believe that I am stepping through all of this quite well. I have thought several times, this it, I am there and I am myself again, then my brain disagrees and bang, I’m back walking through a forest, where every tree has thorns. It’s up to my brain, not me what you’ll find on these pages, every day is an unknown adventure when these pages are opened, not just for you, but for me as well.

Please read my blog from 2 years ago today – 19/10/2013 – Finding hope

I have always had the misconception that life was actually meant to be simple, I don’t know who told me that or why I have managed to got it so wrong, but still to this day I have a small section of my mind that won’t let go of that wonderful but oh so wrong…..

One week on: The visit

The MS nurse hadn’t been here 5 minutes when he said just how much he could see the change in me. He is the second medic in under two weeks, to have said out loud that my health is visibly failing. I along with half the world refer to nearly all the conditions that I suffer with as invisible, clearly they are not. I had made a point of heading to my bed early yesterday afternoon as he was due here at 3 pm, a time that would normally find me in bed, I at least wanted to be sat up in the living room not lying in bed when the doorbell rang. Adam had taken the day off, so by the time it did, I was sat on the settee, with my chair parked within reach, just as it has been for the past week. Despite the fact that the whole purpose of Adam being here was to get to meet him and to listen to all that was said, he had hung around in the kitchen for a few minutes after he arrived, before joining us. Our discussion centered around the chair and why I had decided to use it to begin with then moved onto all the other aspects of how things had been in the past year. It is actually 14 months since he was last here, but clearly he was shocked by the change in me, as he returned to it several times.

So far, Adam and I between us have managed ever aspect of my care, but neither of us, especially me, know that the time that outside help is getting closer. The system in the UK at the present means that we will have to bring into our lives some people that I have a great revulsion towards, social workers. My feelings run deep as they have failed my family and me repeatedly over the years. Firstly when I was a child and I was removed from my Father’s care, firstly at his bidding, until they discovered that his claims of a teenager out of control weren’t the truth. The day that he called them in, I bore bruising, a broken nose and four fingers that had to be pulled back into joint when they took me to the hospital. He wanted me out of there, they didn’t want to leave me for a second longer in his care. So why my hostility, well after just over a year of living with a lovely Dutch couple, I had to move on as they didn’t feel they could cope with a teenager and a new baby. Looking back, I can fully understand that, but I was placed just aged 14 in the YWCA, with little support and no one to turn to. I felt abandoned with no one and nothing. The second, well if you want to understand that, I suggest you read this post, “Christopher”. Bringing in the very department that has failed me so totally in the past, does anything but fill me with joy.

Social workers are the only people who can firstly assess and secondly supply us with access to the funding to pay for the care that we consider is needed. They don’t fully cover the costs, we would also be means tested so they could access just how much we would have to pay towards it ourselves. Once assessed it is up to us how we spend that money. We can give the budget back to them so that they can simply supply us with carers to cover my needs, or we can sort all that out for ourselves, with the budget paid into my bank account. Something that right now, I quite honestly don’t know which would be our choice. I was perfectly honest and said at the moment, I don’t think that any outside help is needed, but I am also aware that that time is getting closer and I am open to the fact, if not the whole process, quite yet. He suggested that it might be a good idea to get the ball rolling, rather than wait for a crisis, which I agree with, but as I said, I know it is coming, but I also know that it is still months away, not just weeks. I believe that I will know myself when I am reaching that point, just as I knew that I had to make the move to my wheelchair from my feet. I am under no illusion that it will take several weeks to organize, rather than just a couple.

I hadn’t realised until the three of us were talking about all of it, that Adam had it in his head that he was going to be more or less forced by the state to give up work to care for me. Not once had he even voiced that idea and I don’t even know where he got it from. I was really glad though that he did so when there was someone else, other than just me, sitting there to tell him to get that idea out of his head. I honestly didn’t realise that he was picturing our future as him being my sole carer 24/7. My confusion was even more so as we saw the system in action when my friend Jake was caring for his father. Jake was at home full time, but that was due to him having a breakdown following the death of him Mother and the discovery that he was adopted. We had actually even been in his house when the carers arrived to put his dad to bed. So he had seen that outside care was there to help with anything that was required. The only difference was that Jakes dad got the care for free as he was over 65, an age that despite feeling it at times, I clearly haven’t reached. I just wish that he had discussed this with me rather than wondering around worrying about it. It must have been like some kind of monster hanging over him. I tried to ask where he got that idea, but he brushed it aside with his usual answer, that he didn’t know and as he is my husband, he just thought that was the way it would be. If nothing else came out of yesterday, I am at least glad that he is no longer thinking his future is to be tied to my side, alone.

As I had expected the nurse wanted to know just how my mood was. I knew it would come up, just as it has every time before, but with the move to my chair I was sure it would be discussed in more detail. It was at that point that I handed over partially to Adam, as I felt that if it came from him rather than me, then it would be clear I wasn’t covering anything. I can understand just how it has become an area that health professionals feel is an inevitable outcome of having a chronic illness, especially with my being housebound as well. As it always has, it turned into a conversation on the virtues of being online and blogging. With Adam being here, it actually was the first time though that I had the opportunity to sing one other value of blogging, the positive impact when it comes to marriage. I know that Adam, like many other husbands, worries about my health. My blog though has freed up our lives to just be like any other couple. Without it, Adam would be coming home from work wanting to ask so many questions, and I, like anyone else, wouldn’t be telling him everything. His constant questions would drive me nuts and my silence on the details wouldn’t be because I was hiding anything, it’s just that I wouldn’t think something to be worth mentioning. Here is the perfect solution. My health doesn’t dominate that precious time that all couples spend together. I write, he reads, simple, and we’re free to just live.

Finally, we had a detailed conversation about my wheelchair. I had to be direct about it, as although I had already told him how difficult I was finding using it in the house, he had swiftly moved the conversation onto other things. So I asked him directly about getting an electric chair and from Westmark, which is the department in Glasgow who deal with them. He didn’t realise that my chair was supplied by them as he thought it was far superior to their usual ones and that we must have bought it. I knew it was special, I had been given it in the first place as I didn’t have great strength in my arms so it was a special lightweight one, not the bog standard one. We went over the problems that I was having, how my arms were finding it often almost impossible and my hands were now almost constantly in pain. I also told him something I hadn’t mentioned to Adam, it is also causing problems with my COPD, I am getting breathless with it. Not to mention the problems I have with bruises and bleeding knuckles. All those details that I have been adding to my list of problems, everything that I felt were the reasons why an electric chair would change my life. This was the moment my first week in my chair had been leading to. He isn’t that hopeful that they will give me anything better. He said that in his experience, if you can move the manual chair at all, no matter how much pain, or how difficult it is, you won’t normally get an electric chair. He even thought that moving house would be an easier option, one which I explained wasn’t a possibility that we even had. Once again I told him what happened with the housing authorities that supply housing for the disabled. Because we own our own home, we aren’t entitled to any help, yes we can be on their lists, but we will never, make it on the points system to a level, where we would be offered a home. He wasn’t sure if he could do it, but he is going to find out about referring me back to Westmark, and what the possibilities are.

What happens now, who know. At least Adam has met and made contact with the person who is our information person, so he can turn to them when needed, if I can’t. I feel as I always do after one of these meetings, it has cost the NHS money, but it is the first and I am not joking, the first one that has had a point to it. Normally, it is just ticking boxes and I’m not sure what other purposes it has. Just as last time, he said that I knew more about MS and the system than even he did, a statement that says everything about the system I have learned to live within.

Please read my blog from 2 years ago today – 23/09/2015 – Exploring is no longer possible

It is strange how two days right next door to each other can actually be so different, yesterday passed without not once wanting to head off into the kitchen to grab yet another dose of Morphine. I wasn’t without pain, that really would have been asking too much but life was just as it normally is, pain but pain at a level where…..

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…