Tell me it isn’t so

I have had a few tweets in the last weeks that have left me somewhat concerned by what is happening in the outside world. I have found some of them disturbing enough, that I am beginning to be truly glad that I am housebound. I had realised before I was no longer able to go out and about myself, that there was an element who had developed a somewhat malicious attitude towards the disabled. When I recently wrote a piece about how things were several years ago, I had my eyes opened by some of the comments, but now I am getting the impression that it is even worse than I ever thought possible.

I received a tweet yesterday, which ended with this ” it makes it harder though when it’s not understood; the pain doesn’t leave me the energy to explain/defend”. I found that so wrong, so distressing that someone should even feel that way, that I responded with the following “We should never have to defend ourselves, just because pain can’t be seen. The fact we feel it makes it real enough!”. I was shocked to find that it received four retweets and fourteen likes. If you don’t do twitter, trust me, that is really high, considering, it was a reply tweet. This isn’t the only time in the last few months where I have spotted a high response to tweets of this nature, something I don’t remember even just 4 years ago when I first joined. Mention anything to do with being treated correctly by others, and the responses have risen across the board, and not just when it comes to the disabled. I can’t help but get the feeling that there has been a huge mood shift out there when it comes, to something as simple, as being a caring human being.

As an outsider, someone who has little contact with the real world, I find this distressing. If the world were filled with caring people, that tweet would have been ignored, or better still greeted with confusion. Clearly there are far too many, who have found themselves having to explain what is wrong with them and worse still, feeling as though they are under attack, simply because they are ill. When I wrote the post about my past a few weeks ago, several people came back with their own explanations as to what was behind it. The most common one was, to place the blame on the government and their policy of forcing the chronically ill, back into work, even when they aren’t fit enough to. I would have expected, that if that was the case, people would become more caring not less, as if I thought something was unjust, that would be my response. Yet the feeling seems to be, that people are actually agreeing with the government, and now see all sick people are scroungers and fakers.

It’s not only on Twitter and here in my blog that I have come across this change. Yesterday, I can across a blog, from a woman who is actually scared to leave her home, because of the verbal attacks she has suffered. I am at a loss as to how the world has changed this dramatically and I’m sorry, the government theory to me just doesn’t wash. There is hardly a week goes by, that we don’t see yet another case, of a person who has been fighting to get, not money to go down the pub with, but money to allow them to eat. Money, they are entitled to, who have long-standing medical conditions that they will never recover from. How can the millions who watch these heart-wrenching stories, not feel compassion? How do they watch, then go out and attack someone who is in a wheelchair, simply because they are ill? I’m sorry, but I don’t get it.

By chance, I caught part of a program that was on last week about discrimination. It was looking at racial discrimination, but something was said in it, that set me thinking. They were in a poor area of a large city, a woman who was receiving benefits, simply because she didn’t have a job, was verbally abusive towards an Asian man standing outside his shop. Afterwards, she realised she had been caught on camera and she tried to explain herself, the telling bit, were her last words, “I’ve got nothing against him, I’m, I’m just jealous.” Could we really have reached a point, where there are people out there, who are quite simply jealous of us? It’s a thought, that I find disturbing, in so many different ways.

This is now my ninth year of being housebound. The last time I was out and about amongst people who I didn’t work with must be, two or three years before that. As those who have been reading for a while know, I worked right up until 5 years ago. I was never in the position, or locations, where I might have mixed with people in those financial positions. I have been treated appallingly at different times in my life, by both those I knew, and by strangers, but I can only imagine, what it is like to be shouted at simply because I am disabled. I truly feel sorry for those who have gone through such a thing, but I also feel sorry for those who are carrying such abuse out. They may be shouting out that we are scroungers and so on, but I think it is their own position they are really shouting about. We the disabled, are highly visible and easy targets. It leaves me cold that society has slid into such a position.

Those of you reading today, hoping that I would give an update on my abdominal pain, well, your right, I have been avoiding the subject, but here’s an update. It’s a bit better, above my normal, but nowhere near as bad as the other evening. I have decided, though, that I am going to call my doctor when his surgery opens next week, if for no other reason than to get better pain control. Whatever happens, there is no way that I can keep on living with this pain, something has to change.

 

Please read my blog from 2 years ago today – 28/02/2014 – Disruptive sensations

My day is once more running behind but for once it isn’t my fault. I actually was up an hour early this morning as I woke unable to cough and really bad pain in my throat, sleep wasn’t going to be an option, so I just got up, with thought that I would be able to rattle through everything and have an early sleep this afternoon. Adam has taken a long weekend so he is still asleep but is actually going out…..

 

 

 

 

On the edge

At first, I didn’t know what to do about it, well, what do you do, when your mother who hasn’t spoken to you for three years, suddenly sends you a birthday card. Almost since the day I was born, my mother and I have had what I can only call, as a fractious relationship. The first time I realised that I wasn’t the same as the rest of the family was when I was still in primary school. I don’t know what it was that woke me up to it, but it was as clear as the nose on my face, I was treated differently. None of it made any sense, I couldn’t work it out at all, but I was told off all the time for things that the rest of the family got away with. I was the middle child, if, you can have a middle out of four children. My elder brother and sister were separated by only two years, five years later, there was me, and five years after that, my little brother. He was the apple of her eye, not at first, but when it was found out that he had received brain damage from the forceps when he was born, he became the special one. No, I wasn’t a jealous child, I wasn’t even aware of him being special until years later, at the time, he was just different.

My older sibling, they had freedom, everything new, and everything they asked for. Me, I was the hand me down child, and not just from my sister, from my two older cousins as well. I never felt as though I mattered, that anything I said was listened to. A lot of the time, I felt in the way, a nuisance who was always too young or too old, the inbetweener who never belonged. I didn’t find out why, until, Mum and I were having a huge row about nothing. We were in the garden and whatever she said really got to me, I screamed at her “I hated you”. Then it came out, I was totally unwanted. I was 10 years old and my mother told me she never wanted me, but her doctor wouldn’t giver her an abortion. A couple of years later, that argument was elaborated on, I had snuck into the world through a whole in a condom. In the early 60’s family planning wasn’t quite the science it is today, and abortions, well there had to be a real reason, and she didn’t have one. My little brother too was an accident, but his problems made him special, I was just an annoyance. The child that stopped her from having the career she wanted, and the life she wanted.

Knowing you were born unwanted, isn’t the best information a child needs, to make them obedient and compliant to their parents desires. Yes, I admit, I turned into a rebel, who wouldn’t under those circumstances. When my parents divorced, I was sent with my father. Mum yet again didn’t want me, and during the next 18 months, I discovered neither did my Father. I was in my early 30’s before I confronted her on that one. I lived through a year of abuse, that no child should have to and I thought she always knew. She says she didn’t, but there was something about the way she said it, that left me still not believing her. From the day my father took me out the back door of our house, into his care, to today, my relationship with my Mother has been totally off and on. She was delighted when I married my first husband. A Royal Navy officer, at last I was doing something she approved of, after all, even though I was 16, he was a very respectable match and meant I was at the other end of the country. Throughout the 10 years we were together, she was the model Mother, Mother-in-law and grandmother. Then I left him. She didn’t speak to me for a year and when she did eventually speak to me when I phoned, rather than her hanging up, it was as though nothing had happened. Which, was more than bizarre, but that’s my Mother.

Our relationship slowly did become one of equals. I proved that I was more than capable of supporting myself, even if she didn’t understand why I wanted to be a DJ, or my tattoos, black & bright red hair extensions and my individual style of clothes, but we actually got on, again. She even met each partner as they appeared, she disliked and liked all the wrong ones, but she put up with their existence, that was, until I met Adam. Even though my sisters husband is 17 years older than her, my marrying someone 17 years younger than me was once more totally unacceptable. She refused to come to our wedding and didn’t even want to meet him, until a year after. Almost every time we spoke, she told me it wouldn’t last, that he would leave me. When he didn’t, even after I got ill, she still had few good words to say about our relationship. Slowly, she accepted him, as she now had bigger fish to fry, telling me just how badly I was handling my health. How she knew people with MS and they weren’t anything like I was, and no matter how many times I explained it, she wouldn’t accept it as it was me who was telling her. Slowly, we spoke less and less, it dropped from every couple of weeks, down to maybe once a month. I had so little to say once I was housebound, and she didn’t like being upstaged, by someone who was iller than her. After all, I had listened to her telling me for 40 years, about how little time she had left. She has always been the family hypochondriac, convinced from her 50’s that she wouldn’t live long. She’s now nearly 90.

Just over 3 years ago, our calls had dwindled right off. I don’t think I had heard from her for about 4 maybe 5 months, so I decided that I was clearly the one, who was supposed to call. The phone wasn’t answered, not once, but for 3 or 4 weeks in a row. I hadn’t been calling daily, but I felt it was odd, even odder when I left messages and I still heard nothing. I had no choice, but to call my little brother, mummies boy, always mirrored whatever she thought or did, so never hearing from him, wasn’t a surprise. She was in the hospital, she had had a fall and broken her hip, six months before. The decision had been taken that there was no point in telling me, after all, I was housebound, what was the point. He kept me updated with a couple of calls over the for next couple of months, as she was shifted from one hospital to another. Calling him and actually having the phone answered, was rare, he worked shifts, and no one else in the family, ever answered the phone. Then the decision was made, she was to go into a home, as she was unable to go home again. The last time we spoke was when I was fed up of hearing nothing and my calls not being answered, so we tricked him. Adam called and left a message, asking him to call. I knew he would think that I was either dead or extremely ill, but it made him call. Mum was now in her second care home, she had only been there a week and they were waiting to see if she settled. He promised he would call, she was to have a phone in her room and he would give me her number. He never called, nor did she.

This Christmas, I sent her card to his address, just as I did the year before. No card came in response from her, but there was one from him. Still there was no phone number or even an address, but he did name the care home where she is and a note saying she was well, but that was it. Then out of the blue, a birthday card arrives, with a note inside, saying how happy she was and how she enjoyed her weekends surrounded by her children, grandchildren and great-grandchildren. Once again, no phone number, or even the address of where she was. Because I had the name of the care home, the internet has supplied me with what I think is the address. I guess, she want’s me to write to her now. Part of me feels it’s too late, that there is nothing to be gained from it. Part of me feels once more out of the duty of a child, that I have to respond. Why do parents have this horrid hold over us, even when they have failed as a parent? I have never felt anything from her that I would call close to love, just duty. Despite what I shouted as a child, I have never hated her, but I have never hated anyone. So what do I do now?

Please read my blog from 2 years ago today – Plasma itch 

Snore day number one…..otherwise know as Saturday, the first day of two snore days where Adams snoring from the settee is once more blocking out the TV! How does he do it? I honestly would have thought that not……

 

 

Triggered thoughts

When I am feeling as useless as I do now, I find myself doing a lot of strange thinking, which I guess I have to explain. Strange thinking to me is when my mind starts to coast on it’s own and jump into things you usually wouldn’t know or believe you are actually bothered about. It is a little like that period of time when you are not totally asleep and your thoughts continue on the events of the day and things that happened a long time ago, your aware but briefly as you soon pass that point and it is gone, replaced with sleep and normally forgotten by the time you awake. Not being able to hold my thoughts on track just now has been like being in that state for nearly the whole day, unintentionally thinking about those things we normally hide away.

I have been through so many things in my life that would normally fill the lifetimes of several people, that I have a library of events that still need completing. Having raced through so much without thought, usually as I didn’t have the chance to think about it at the time, means I have hundred of boxes, stored for a later date, a date that seems to have arrived again. Yesterday and this morning I have found myself located in my childhood, which to those who read both my blogs, already have taken glimpses into. When we are children we just accept what happens to us without great questioning as we have nothing to gauge our own lives against. I had several major traumatic events between the age of 12 and 16, the types of things that if you watch TV are used as excuses for criminal behavior. In those 3 and a half years I was raped, ran away from home, my parents divorced, I had 3 schools, I was abused and beaten up by my father, taken into care, dabbled with drugs, had foster parent for a few months and then aged just 15 housed in the YWCA where I was totally responsible for myself, but with the social work department in the background, left school 3 months before my 16th birthday and once employed had no support of any kind, other than myself from then on. What has been going round and round though for the past couple of days is what is it in me that I have no hatred or anger for any of this. Why am I the person I am and able to say, this happened and this is the way it was, so what. It is that same attitude that I have to my MS, it has happened so what get on with your life. Something somewhere has made me the way I am, but if I believed the stories now on the TV about abuse I should be a total mess, but I’m not?

I have always spoken freely about all these things and not once tried to do anything to them in return. I know that it is because of a story in the news right now that has stirred this line of thought, but I still feel no different, what I am sure of is that my attitude to my illness comes from something that happened when I was young as it shaped my reaction. I seem to absorb what ever happens and work with it, even when I was a teenager I have no memory of being devastated by any of the things that happened, I just brushed myself down and moved on. I have been asked often how I manage to deal with everything and keep going and no matter how hard I try to find the answer to that question all I can come up with is that I was born this way. I wish I could explain it, find a reason or a formula that I could pass on and make others lives easier but I can’t, all I find is one thing and one thing only, you have to accept what ever it is as done, fit it into your life if you like and move on with it, without regret or spite because other wise it will eat away at you all the time, rather than the odd trip back there because of a trigger on the news. I can’t change the past, I can’t change the fact I have MS but I can choose to live with it and I can choose to accept it.