Having just enjoyed one of my favourite treats, oatcakes and as it is breakfast I ate them with ginger marmalade, I am now suffering the problem of having not been to the dentist in 8 years. No, I don’t have toothache, just two broken teeth that everything of that texture seems to take pure joy in lodging themselves in and can’t be shifted by my tongue alone, probably why it used to be fashionable for toothpicks to be in every home, they were needed daily. I know there is a dental service available at the local hospital for people who are housebound, it has to be within a hospital as to get there clearly I need an ambulance with a stairclimber just to get me out of here and home again and they are only available if you are going to a hospital. I find that so maddening, it is almost as though by being housebound, we suddenly don’t have the same right to health and is the reason why I don’t ever really see my GP. I don’t expect them to assist to take me out just for the hell of it, but surely seeing our GP’s and dentist should fit into the same bracket as seeing a hospital consultant, it is after all, still our health. Either way, I still might not have been to the dentist any sooner as I so hate that stair climber and the whole process as I have said before, of just getting ready to fo anywhere is draining and best to be avoided if at all possible. Just sitting here thinking about it has made me decide that I can live a bit longer with strange gaps where tooth enamel once was.

It’s odd how all our values change once we are ill, so many of the things that we held as important and life essential, seem to just fade and become a dusty memory and of no value at all. Chronic illness doesn’t just destroy our health, it destroys our dreams and diminishes our belief in not just ourselves but in everything that once seemed so clear and so simple. When Adam and I got married, I knew without the slightest doubt that our dreams were very different from each other, not because we had spoken about them, we were still at that stage of love when words aren’t needed as be felt we understood the other without them. I didn’t need words to tell me what I knew was a fact, because I was 38 and he was 21, I knew his head was filled with wild hope about riches, success and a long extravagant life together and all those other fantasies we believe will just happen at that age, mine was filled with stability, planning and financial security. It was Adam who wanted to buy a house, I was strongly of the opinion that they were nothing but money pits and unless you were going to have children to pass on your home and money to, not a great move at all, but I couldn’t say no to him, his wide-eyed fantasy was possible, but on my terms. I refused to have a huge mortgage around our necks, it had to be affordable and it had to mean we could still have a life, not one spent living on baked beans and water. So we bought our flat, the one I am now so much in love with and he wishes I hadn’t given in over, as now we would be housed somewhere more suitable for me. I didn’t have the time to secure our future, to build up a nest egg that would mean I could retire and enjoy a life with Adam for as long as it lasted, or the slightest chance of securing a future for him once I was gone, as within 2 years, I was too ill to be allowed to dream.

Being diagnosed with a progressive degenerative condition takes away all our options. From the day I had to walk into my office and tell my employers that I had PRMS, I also knew that was the day when I lost all power over my future. I lost the biggest and strongest bargaining position that employees have, to leave and find a new job if they don’t pay you what you are worth. Other than the annual increment that every employee received, I never had a pay rise from that day on. They knew just as I did that I couldn’t just leave and get another job and as my health got worse and I needed at first a stick, then a wheelchair, the harder they drove to get every single penny of what they paid me and more. 10 years on the same wages meant that I was miles behind what others in other companies earned for doing half what I did and every last dream I had was snuffed out. Yes, there are laws out there to protect those in my position, but use them and it goes without saying you really will never work again and I needed I thought to do everything I could to build up our home and make it the best I could, while I could. My ambition and only one became to work for just one more day, week or month, to have a wage for just one more day, week or month, that was my only focus, not my health or what was happening to anyone else, I had to make things as perfect as I could right then as I might not be here tomorrow to do so.

I no longer had or have, any dreams that look any further into the future than those same days, weeks or months, at least not for me, my health has taken them all away. Becoming housebound whilst still working, put me in the oddest position, but one that allowed me to live in a very different way and changed my future even more. I don’t know why but it gave me back a strange feeling of control over what was happening to me, a limited life had it’s advantages and it’s bonuses that I wish I had seen long before and once I was made redundant and eventually I had totally broken that fear of not earning a wage again, I found freedom. Once there is no possible future left, well oddly other than depressing, it is actually liberating. My health has taken every single thing that we have in our heads about what having a future means and replaced it with total freedom. I have lost the concept of weekdays, weekends and holidays, I no longer have to think beyond this hour as what can the one after it hold other than more of the same, freedom of thought and of heart. No matter what we like to believe, true freedom of thought doesn’t exist when we are locked into the world of work, a world we are told is our right and what our dreams can be achieved through, but it’s not.

My memories may be muddled now and my body crippled but I don’t remember ever feeling as free as I do now. I don’t have the money to do any of the things I once thought important, I don’t know where the money will come from just to cover the bills at times, but we always manage somehow and most importantly we still have each other. For everything that the outside world would say I have lost, I have gained something in its place, I just wish that I didn’t have to live in pain to have it. Adam is approaching the age I was when we first met and he has suddenly discovered the ambition for financial security, I truly hope that he too will eventually understand the freedom I feel, but without any of the pain or physical confinement.

Please read my blog from 2 years ago today – 25/02/13 – Something ODD? 

Well an hour ago I know I had something that I needed, really needed to write about today, I just wish I had the slightest idea what it was now. Yes I know it is a constant problem and one that you would have thought I would have taken the logical step of writing things down when they are in my head, but I always forget to do it……………