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……

 

 

Abandoned by our friends?

Sometimes, it just feels like I have more to do in a day than my body has the energy to do, or the time available to fit it all in. Yesterday was one of those days. The day before a hospital visit always feels that way. I know that the only person putting any pressure on me is me, but I simply can’t help it. It appears that, that, work ethic, no matter what, never dies. I know it is nothing more than a feeling, but if I don’t manage to create the illusion that I am sat here as normal, well, then I have failed. I know it’s stupid, but it does also have a real reason behind it. It actually has its roots set in a single day three years ago. Just like today, I had quite simply gone to the hospital for an appointment, but I didn’t set anything up in advance. To the outside world, it appeared I had just vanished off the face of the social media world, and some people panicked. By the time I got home again, I had tweets, comments attached to my blog, and on my now defunct Facebook page, from people showing unbelievable levels of concern. I had been missing for a handful of hours, I hadn’t died, but you might have begun to wonder if you had read them all. From that day on, I have made a point of creating the facade of normality, regardless what is going on. Don’t get me wrong, I was extremely touched, but I felt so guilty for having worried people in that way, that I swore I would never do it again. So yesterday turned into a day of trying to do two days work, in one, never a great idea really, but for once I think, I got away with it.

One of the joys of my PRMS. is that it likes to play games. You can never say that this or that is going to be a problem. Any more than I can say that going to the hospital today will wipe me out for days, for the week, or not at all. If it’s feeling really sneaky, I might be fine for the next 24 hrs, then suddenly, I will feel flattened. When it first became ultra active 14 years ago, I didn’t have a clue what was going on. I planned my life with the greatest of care, expecting like anyone would, that if something was going to be too much for me, I would know at the time. It actually took me a year to understand, that planning was of no value, what, so, ever. It wasn’t like anything I had ever had to deal with, as the one thing it didn’t contain, was any form of logic. I had quickly discovered that energy couldn’t be banked, so the idea of taking it easy, because I wanted to do something later, or the next day, didn’t work at all. At one point, I actually kept a spreadsheet showing how much energy different things took out of me, and what my physical reaction to each was. I was desperately trying to find a pattern, something that would make some sort of sense. There wasn’t any. It is really hard when you are used to leading an active life, outside of work, to suddenly find that there was literally, no point in even trying. Why waste your time putting on your makeup and getting ready to go out, just to find as you reached the front door, that you couldn’t go any further? I lost count of the number of times I told someone I would meet them later, to find later, didn’t exist, well for me at least. By the time, I was in year 3 post diagnosis, I had stopped saying yes to invitations, only ever saying, “Maybe”, by the end of year 4, the invitations stopped as well.

I have heard so many people saying, that their friends disappeared and that it just proved that they weren’t real friends at all. I personally, don’t really believe that. I have written several posts with parts of my reasoning behind it when it comes to our social friends, but I don’t think I have ever written about our work friends. I think the post about social friends were somewhere in my first year of writing, but that is, only think. I believe that much of our loss of work friends has to do with just the way people live their lives, as it is with social friends. But I also think there is one factor, that most of us totally miss and it’s ourselves. If you think back to those days, those times when you were face to face with someone in the workplace asking you, to join them for a drink that evening. Now think closely about your body language, your voice, and your face, you will find several clues. Something none of us deal well with is embarrassment. When you know; that the chance of you being able to join them; is down to your health, well, we all feel somewhat guilty and embarrassed. Yet again, your not in control, and you are more than likely going to have to let them down, by not being there. The second that your brain works out that you are being invited somewhere, that embarrassed, and even guilty feeling, starts to show on your face. The person who is asking you to be there picks up on it, and they start to feel bad for asking you. They are in that horrid moment when even the best-preplanned words, start to sound wrong, or pitying, and they don’t really know how to change their words, or how to get out of the whole situation. You are feeling just as bad. It is no wonder that they will think twice about the next time of asking you to be there. Add into that, the fact, that the more people you say maybe, or no to, the less they will ask. They weren’t running away from you, they were running away from feeling awkward and embarrassed. Put the shoe on the other foot and be totally honest, you would have more than likely done exactly the same thing.

The first people who started to avoid us, where our acquaintances, those who didn’t really know us well enough, to know, if being blunt, or hedging around the obvious, was the right or wrong thing to do. Slowly one by one their invitations started to dry up. The ones who kept asking, always put into their invitation, something along the lines of, “I fully understand if you aren’t up to it, I just wanted you to know that you are more than welcome to join us if you feel up to it”. The air of awkwardness remained, especially for us. Unless you were a first class actress, that always showed and our embarrassment, out shown our appreciation of still being included. For me to begin with, somehow, I was always left with the feeling that I was letting them down. Worse still, that they might think that I was using my health, as an excuse. Even worse, that the truth was, I just didn’t want to be there, with them. I know now, that because of that, that I probably over did my thanks and my explanation of why I might not, or most likely wouldn’t be there. Even as time went on, my thanks and rejections, still showed that I was not fully at ease doing so. It’s just human nature that the more people see this reaction, that they are going to try and find a way of not making you feel that way, there is only one way, not to ask you in the first place. Add in, a simple fact, that the more you don’t go to parties, nights out, or company dinners, the lease likely that they will even bother to ask you. Work friends and acquaintances, don’t leave us, we leave each other.

None of us are taught how to deal with the illness of others. Our work colleges are probably the people outside of our partners who see us the most. They have watched us over the years getting iller and iller. They have seen us in every state that our health can produce. In my case; I had gone from a bright, person who moved swiftly; never missed an opportunity to attend anything that sounded like fun; to a person who was painfully thin; frail looking; in a wheelchair; with a gastric nasal tube, permanently over the ash white skin; that was on the few days that I made it into the office, as I worked mainly from home. Over 10 years, I had diminished in every way possible. No one asked me to attend anything in the final 4 years, partly because the final 3, I was housebound. I didn’t lose my work friends because they didn’t care or didn’t know how to handle my health, they had seen everything possible, there was nothing they hadn’t been involved in, in some way or other. I lost my work friends because my health removed me from the situations where as people we bond, those social events where we are people, not the manager, or staff member. We don’t bond at work, we bond when we’re social, if that is removed, so are those friendships. Just like any other job you have ever had in the past, once you don’t work there anymore, once you and they have moved on, those people we counted as friends, are gone, we and they, become part of the past. Be honest, how many people did you stay friends with from your very first job, or you second, or third, and so on. That is the way it always works; for us this time it’s more noticeable; we haven’t moved on to another job; we aren’t in a place where those relationships are replaced; we’ve moved on to another world; one where we are alone, so we feel it far more.

It is all too easy to say our “Our friends don’t want to know me anymore because we’re ill”. Our work friends don’t think of us once we have left their family, as that’s the way work families work. Your seat in the office isn’t empty, it has a new you in it. The person who sat there is gone, but the person who does that job, is sat in the same place, they always have. So don’t be hard on them, as it’s life, not them, not your health and definitely not you!

Please read my blog from 2 years ago today –  09/11/2013 – 1/6th lost to pain

I thought that yesterday was just going to be a simple day with nothing to report and in many ways it was, I did everything that I would normally do and even had a late afternoon shower, which…..