It’s done

I didn’t know where I was, or who I was this morning. I sort of got myself through here, then sat at my computer staring blankly at the screen, waiting for it to boot up and wishing I hadn’t left my bed. Based on the past, I thought that today would be the day, that I would wake not feeling like I could dance around the house, but, at least, feeling as though I was alive. Three days, that is my normal recovery time for anything from going to the hospital, to have a visitor, three days at the most. Today is day four and I still feel like I did on day one. Don’t get me wrong, I wouldn’t have changed a single minute of the time I spent with Teressa and John, not one single second, but, my recovery, is clearly getting slower. One more thing to add to my list of things that aren’t quite how they were.

Granted, yesterday I made the dough so that Adam could cook the pancakes, but that took minutes, not the whole day, and it isn’t the sort of job that takes much out of me. The biggest thing that I did was to complete my letter to my Mother, in response to her card. I reread the one that I couldn’t send. The one that screamed and shouted my annoyance and pain in every word. Then wrote one, just as I thought she was expecting from me, one that groveled and kowtowed to her. Trust me, that hurt, as it was the attitude I was brought up to show. I followed that, by writing one, not even close to in between, as it was not that far from the first, but tempered by the second. I showed her the respect that I would for anyone who is in their late eighties, but, I also told her the truth, something she has twisted all her life.On the whole, my letter is very similar to my post about her card, but sticks to just the last two years.

At the grand old age of 55, I have at last stood up to my Mother and told her, that I refuse to play her games. Oddly, I feel nothing. I thought that telling her, would somehow change something, but it’s changed nothing. As I signed it, I realised why. The last two years, without her interfering in my life, always having something to put me down over, have been wonderfully peaceful. I haven’t missed her at all. Yes, I have often thought about her, wondered how she was doing, because she is my Mother, but I haven’t missed her. I was oddly content knowing that she had for some reason, that I didn’t know or understand, once again cut me off. But this time, I didn’t bend over backwards, to find out why. I called my brother and his words although friendly, didn’t match with his actions, they matched, as always, with hers. I chose to live 150 miles away from them for a reason. I don’t know if she will bother to pick up the phone or if this is the end of it. I don’t know if I will receive a letter in return and I don’t care, I kind of like peace.

Even though I wrote that letter. Even though Teressa was here for two days and even though, we had to deal with the phone call for PIP, and we’ve between us made the pancakes. None of it equates in my head for how tired I am. I long for sleep, but I also have a longing for one other thing, it’s what I asked for the other day, I’m still longing to do nothing. That’s something I don’t remember longing for, ever, in my life before, and I don’t even truly know what it is.

There isn’t a symptom, or an effect, that my body can do to me, that I am not aware of. This isn’t any, that I have come across ever in my life before. It’s almost like my brain wants to do nothing, rather than a physical event. It just wants to be allowed to not think, not ponder or even accept input or output of any sort. How you achieve that, I’m not sure. I would have said in the past that sleep would cover such a feeling, but I am sleeping fine. Eleven and a half hours every single night without fail, yet, here I am longing in a way I don’t understand, for nothing, and I want to understand, I want to make sense of it. Ask Adam, there is nothing in this world, that annoys me more, than not understanding something. It drives me mad. I even Googled it, and much to my surprise, I found a website called Nothing. It didn’t help, but it was a distraction for a while, but it’s not the nothing I long for.

 

Please read my blog from 2 years ago today – 20/02/2014 – Change the image

It finally looks as though there is a chance that those truly unfortunate people who have spent almost the entirety of this year with their homes flooded, might actually be at the beginning of the end to their misery. I count myself lucky that despite having lived all over the country and in all sorts of homes, it is something I have been lucky……

 

 

 

 

 

 

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……

 

 

Dreams to the future

It is strange how your life can be taken over by something without you giving permission or actually realising it is happening. A year ago I never thought that I would be writing a daily blog and being very active on both twitter and Facebook, somehow it all happened. Life for me has followed that pattern all to often, drifting into one thing after another and still no real direction in anything. I think it is true of most people, we just are, and we just do. Clearly when I started to blog my goal was for me to have a record, and I had no feeling or desire at that point to take what I was doing beyond that point. I found myself though with a purpose and a direction, which is kind of funny when you think about it. My life and my writing are all about actually not being in control any longer, but it has delivered the first strong goals I have ever had. I don’t think that I have actually written them down before as they are so long term that I have no idea if I will ever succeed in completing them.

When I started writing that clearly was about my MS and little else, how it affected me and how things felt when they were happening. It grew from there into my second blog which was my feeling about all kind of different subject, post that were designed to make people think about all kinds of topics that they may never have really thought about or even heard of in some cases, to me that was the fun side. Between the two I opened myself up totally to the world, there is little now that is still unsaid, not hidden on purpose just not said yet. Just before I started my second blog I branched into Twitter and it was my rapid growth in followers that started to lay down the ideas of the goals I now have. MS is not the focus any longer so much as all chronic illness and most of all those who are housebound. No matter where I have looked or searched that is no real information or network for those who are housebound, nothing that gives them a voice and it really feels and looks as though we are the forgotten ones. It was this that pushed the current goal of writing a book, I was asked by several to do so and it is turning into a slow process as I have already scrapped it twice as I wasn’t happy with it, version three is about to be started, hopefully this time it will work for me.

Once I have my book complete and published in what ever format I eventually settle on, then I can move on to the next step one that I think will start to make the most difference. I have this idea of setting up a support network for those who are housebound and their carers, a place where information can be pulled together, not medical definitions but as I have done here, where an person with any chronic condition can add their description of the way it affects them. Hopefully there will be enough people involved over time that it will supply description that people can actually understand in layman’s terms that it will be a resource for all. As I said a big plan that I might not ever be able to complete or even get of the ground.

I have come across so many people who are living lives that the ordinary person in the street working 9 to 5 have no idea even exist, people who repeatably say to me that I put there feelings into words, but I can only do that for the things I know about, there have to be others who can also do this and add to the site supplying help in away that is just as important as any medicine, the knowledge that you are not alone, others are going through the same thing. Once housebound you don’t meet others, you can’t talk to other patients you might have once met at a clinic or a support group. Being isolated from the world is one thing, being isolate, trapped by an illness is another. I want to raise the profile of all those in my position, including their carers and families, just having others in the same position words, to reassure you, means an amazing change in how you feel and how you cope.

Well that is it written, that is my goal, a long way off and may be just a dream for ever, who knows, but I do know that there has to be a better way of keeping the world open to all, surly the internet can supply it and provide that missing link in our lives.