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….