Dreams caught in time

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……………

The unknown factor

I was up at 2 am this morning as the second dose of Dulcolax decided to work, it could have chosen a better time of day, but at least it made a start, I am far from convinced that any more than a quarter of was there has actually passed, on the good side, it was nothing like as painful as I expected it to be. Even thought I was only up for about 20 minutes, I feel as though I didn’t get any sleep from that point on, it’s odd how such a small break can undo so much of the rest of the nights sleep, years ago I would have had all my normal nights sleep by that point, 5 hours and I would have been up for the day, not returning to bed for another 5 and half hours.

I know that I am by no means old, at 53 I should still be out there living life to the full, but it was the pediatrist who was here on Monday that started me thinking about something I haven’t fully thought through. I was talking to her about the new long fingernails that I now have and how I had noticed that they just aren’t as strong as they used to be, I had been putting it down to all the medication that I am on, but she added that I also had to take into account the ageing process. She said that it is around the age of 30 that our nails and hair start to change but of course the biggest changes happen with the menopause, something I started finding out about earlier this year. Once she left the house I started to think of all the things that happen with ageing and I hadn’t even thought of how that is going to affect me in the coming years. If the doctors are right, I might just make it to 60, so I will be saved from the worst of the ageing process, but there are still things a head I hadn’t really put much thought to. I hadn’t even thought about the effect of the menopause on my PRMS, yes I am on HRT, but that is a guess by the manufacturers to what each individual needs, they don’t know our bodies and the true levels we require, nor do they allow for any other existing conditions. All I do know is that it is now about 18 months that I have been on the HRT, about the same length of time since my PRMS started to speed up. I was keen to take the HRT for two reason, the horrid sweats I had started having and the fact that it is now nearly 20 years since they found osteoarthritis in my hips, not a great condition for someone who find themselves falling to frequently. I once heard it said that “coincidence is just a fact waiting to be proved”, not something that I can say is right or wrong, but something that I feel has something true ringing inside it. MS is a condition that effects women more than men, which kind of points out to me, that there may be some sort of possible link to our hormones, chromosomes and genetics, but there is no proof of any of that.

It is that very unknown factor of PRMS that makes it so hard to live with, most illnesses have a pattern or course that they follow, to date there is nothing to say how ageing effects it at all, other than it gets worse for almost all. Clearly there are ageing conditions that don’t work well with MS, osteoarthritis is only one of them, another condition I already have is Macular Degeneration, I have slowly been going blind for many years in my right eye, my PRMS have bouts of Optic Neuritis in my left, although each bout does clear up over time, just like my arm, it leaves behind a degree of issues that never recover. I don’t know what would happen should my PRMS cause it in both eyes, or if the Macular Degeneration could also appear in my left eye, which it easily could. I know I have mentioned before that I always walk around the house at night with my eyes shut, this is the real reason why, I fear that my future at some point will include going blind or at best seeing much less than I do now on a bad day, I have already been warned that I should expect to be virtually blind in my right eye eventually.

Ageing is never something any of us want to think about and if it hadn’t been for a throw away comment, I probably wouldn’t have started thinking through it, I now see that maybe I should think it through a lot more and get over the human condition of sticking my head in the sand and declaring “It doesn’t matter, I’m too young to think about that.” Living on a pension may not be an issue I have to think about, but the other range of problems facing us all, still exist and are closing in on me. I already know that I have two conditions many years before most even think of their possibility and have nothing to do with PRMS, yet it is my PRMS that turns them into real danger zones, how many others are just waiting. I can’t change what is happening to me, but I am certain that there are people out there with chronic conditions, who will make it well into old age. I just hope that if they are reading this, that they start to think about the changes needed now, rather than believing they still have plenty of time and land up as I did housebound before I should have been, by our lack of planning.

I may have lived for nearly two years knowing when my exit date will be, but I still like most I expect, find that date hard to hold onto as reality. When we plan our futures, we plan them to what we believe will be our life expectancy, someone telling you that isn’t going to happen, doesn’t change that. In my mind I still see myself in my late 70’s early 80’s, just like most of the women in my family, yet I have been told that 60 is what I should expect, something about the whole situation, doesn’t sit right with me, yet living another 20 years in pain, horrifies me. There are things I can plan and there are things that no one can plan for, but the worst thing to get right are any dates past today. “What will be, will be”, true, but if you can control the “what” even just a little, well surly that future is brighter for all involved.


Please read my blog from 2 years ago today – 21/11/12 – On the up

I am doing well today at what I am not sure as I keep forgetting but I feel up and that is good. I remember having a clear plan this morning of what my day was going to hold but I lost it somewhere along….