I slept well last night, well until about 6:45 when I woke needing to go to the loo and couldn’t see any point in going back to bed. Forty-five minutes of missing sleep and I now actually feel as though I have been up for most of the night, sometimes I really hate my body. Sleep is the oddest thing when it take over your entire life, it can feel as though all I ever do is either think about sleeping or actually doing so. It’s odd because you find yourself both hating it and loving it at the same time. I hate it because it has stolen so much of my life, but I love it as it is my time of escape, the time when for what feels like a short while, I don’t think about pain or wonder how or when, I will eventually be able to go to the loo. When written like that it doesn’t sound like much of a life, yet I am still happy.
I know when I first realised that there was the possibility that I would become housebound, that I like everyone else faced with that possibility couldn’t imagine actually living like that and being happy. It was this huge specter that loomed over my life, constantly threatening me, just waiting to pounce and destroy everything that I had and everything that I ever dreamed I would have. I don’t have the slightest doubt about this, but no one out there could be more surprised that here I am in my 8th year of being housebound and I am happy. I have tried many times to come up with the reasons that I am content to live my life like this without going mad along the way, why it is I have never gone stir crazy or longed to just get dressed and head out through my front door again. On the surface, it just doesn’t make sense or compare in any way with the person I was so few years ago. I am reasonably sure that if I were to ask those who knew me before my diagnosis, that almost universally they would say that there was no way that I would accept what has happened and no way that I would be able to even accept it, far less land up being happy once it did, yet here I am. Without a doubt, I know that the gradual nature of my confinement had a huge part to play in my adapting but that isn’t the full story, there is something else that I have missed over and over again when I have been thinking about it and that is me. Despite what almost everyone who has ever known me would say, there is part of me that most miss and most don’t understand either, I am very adaptable and an incredibly accepting person.
I am not sure if it is a generational thing or from my upbringing, but I am the type of person who doesn’t push themselves forward, but has to be the best at everything that I do, not out of wanting recognition, but out of a belief that giving less than everything is just not acceptable. A good example of what I mean is found in my career pattern. Unlike many people, I have never set out to do any particular job, it was more a case of the first job that came along that I thought I could do, I accepted it and as long as I didn’t totally hate it, I stuck at it until I had done all I could or I was becoming bored by it. When I left my first husband, I got a job as a barmaid, I went to college two days a week, worked 5 in the bar. Working in a country hotel means you cover every job, from bar to chef, front office to chambermaid, whatever is needed is your job at that moment. It was a good grounding and when I was offered another job without applying at another hotel as under manager, I jumped at it, but I also hated it and left. Two days later working in telephone sales, selling advertising, but found out the whole thing was dodgy and left. I took a couple of months out as I had no idea what I wanted to do, then I was asked through a friend if I could cover one night as a DJ in a bar. I landed up working for 7 years as a full-time DJ throughout Glasgow and central belt and on the radio, at the time I was the only full-time female DJ in Scotland, eccentric and in demand. It was a job which had a lot of great things about it and yes was a bit like one long party, but for someone who knew nothing about music and never even listened to the radio, in fact, actually didn’t like music that much, clearly not something I had given a seconds thought to before doing it. I had to learn about music of all genres, lighting, electronics, track mixing and sound engineering and covered everything from nightclubs, pubs, events, live music gigs and Raves. I gave that up as I realised that I needed to establish a normal career as I was now 35 and if I didn’t, it would be too late. The next week I started working as agency staff for BT telesales simply because I had previous experience. I worked for them for over 2 years and received my BT contract and achieved the position as fourth top seller in the UK. I left for another phone sales job as I was bored with BT, where within 6 months I was sales manager and then I became Operations Manager. It was a role that required me to learn about statistics, computer programming and IT in general, all self taught and all in my own time, it often felt as though work never ended, but it was required and I did it, I remained with that company for 13 years. I was never without a job when I wanted one and I never once seriously spent any time trying to find one, it was just the first one that appeared or I was offered and every single one of them, I put in the effort to be the best I could, I accepted the role I was in and I put in everything. I didn’t choose to be housebound any more than I really chose to be a DJ or an Operations Manager, neither were roles I had any burning ambition for, in fact, I don’t remember ever having any ambition what so ever when it came to work, I just did what was needed and in a lot of ways, that is exactly what I am doing now.
In a lot of ways, just as I took every job and I work at it until I had it working the best I could, I took the challenge of being happy and housebound seriously. It may sound a little odd to say that you have to work at being housebound, but you do, you also have to adaptable and able to just accept what happens without seeing everything as a crisis. Adam said to me a few weeks ago that I had made a job for myself with what I do online and that I was actually rather business-like in the way I carry out everything I do on here, in a lot of ways he is right, but I have also made a career out of being housebound. The biggest difference, is neither pay me anything, but just as I was with every job I ever had, money wasn’t my driving force, as long as all the bills were covered, well I didn’t think much further than that. I am an accepting person, I accept what life brings my way and I don’t analyse to far the whys and wherefores. I have said many times that routine and achievements are the two greatest things that we have to create for ourselves once we are no longer part of the rest of the world, looking back, well I see they are the two things that also drive a happy and successful life where ever you are.
I now believe that it isn’t being housebound that scares people, it is the loss of who we are and what we do, that really scares us. The fact I had already learned somehow to be accepting of what came along meant that my first steps in being housebound were possibly a little easier for me, but it is my desire to make the most of everything that without me even knowing it that has turned it into a success. I had to once again recreate me, adjust to a new form of work and then keep working on it daily so that I had a new normality within which I have replaced everything I might have otherwise lost. The result is that I honestly don’t feel as though I have lost anything, it’s just another case of my life changing and me adapting to where I am now and what I have to do.
Please read my blog from 2 years ago today – 15/02/13 – Horizontal world
Yesterday became a day of feeling totally drained and it has continued into today. I have lost any memory of how long it is now that I have been going to bed at some point either before or at 9pm. It actually feels as though it has been that way forever, it has now entered that list of things that I have totally accepted and settled into without any…….