The cost of modern life

I’m cold, I knew it was cold this morning even before I got up as I woke at some point with both feet on the floor again, it really is the most stupid position and one that doesn’t make the slightest bit of sense. Yet there, I was freezing cold and my legs both numb and heavy, almost too heavy to lift them back into the safety and warmth below the duvet, my back aching in objection to the whole thing. I can’t be totally sure which it was that woke me, the cold or my back, but it was my back that objected strongly to the twist that was applied to it a the first sound of the alarm clock in what felt like only seconds after my leg retrieval. The temptation to remain below the covers was huge, there is something even more compelling than pain at that time of day and that is warmth, warmth has a huge attraction, but I couldn’t risk the upset to my routine, cold or not, I had to get up. It is totally my own fault that the house is cold, I have for the last couple of months been turning down, then back up again the heater in the hall which keeps the whole house warm, even in the coldest winter, but last night I made a much bigger mistake, I turned it off. I made my way through here as fast as I could, not even stopping to go to the loo or to fetch a glass of coke, I knew that I had to attempt turning the fire on while as I was at my best and those few minutes are such a small window. As much as I love our fire for the way it looks, it is truly not the best design for someone who can’t kneel down to be at its level, but today it played my game for a change. I have often thought of making an actual list, as there are so many thing in this house which scream bad design when it comes to their usability by someone who isn’t totally fit, that I have many times added lines into my posts suggesting that designers think again, maybe one or two might actually listen one day to those who aren’t totally fit 30 somethings with money.

It doesn’t matter how much I hate being cold, I am already dreading the next few months and although selfish of me, I really do hope we have a rotten summer. Everyone in this world, including me are longing for the end of the winter temperatures and sunshine strong enough to heat the stones around us to fight off the cold of the night, but I drop off that equation when it comes to it getting any warmer than that. I was never a sun lover, never someone who would lie in the sun and get a tan, but these days I hate the summer with a passion, summers heat is probably the biggest single thing that makes everyone with MS, regardless of type, worse. Our nerves are so shot that there is no way of guaranteeing them comfort ever, it is bad enough that they cause us whatever unknown madness that our own bodies can come up with, to be caught knowing what the cause of our pain is and to be powerless to do anything about it, is a hundred times worse. There isn’t a fan or cooler that can remove the power of summer totally, no matter what they say on the box, at best most of them just recycle the same, or slightly cooler but still hot air whilst running up just as huge bills as we have to live with during winter because of the cold. MS is a loose, loose illness when it comes to temperature without any true win, win ones.

Tears were just rolling down my cheeks, it’s something I know that I do with so much more ease these days than I ever did years ago. I would actually go as far as to say that although I was still the person I am now, I had what I thought was healthy distance between myself and those things I saw on TV or in the movies. It didn’t matter how sad the story or even how uplifting, tears never once escaped me, unless there was something that I saw that was too close to my own life that the pain stopped me watching. There were many occasions that I have walked or ran from a theater or room simply because I couldn’t deal with the memories that what I was watching were stirring inside me. Oddly I can pinpoint the two things that changed that for me forever, first is one that I wrote a whole post about and that was forgiveness. It is easy to say, but hard and painful process to go through, but one I now honestly feel is essential to all of us. My tears had been blocked by so much anger and fear that I was carrying around inside of me, as I have said before forgiveness is a two way street as we all too often have to forgive ourselves as well as those involved. I never before I was housebound had the time to do nothing but think about me and to go through everything I could remember from childhood on, but once done, well I felt so much stronger and so much more able to be me and yes along the way I cried a lot, but I started to free the tears of emotion for others without turning them on myself.

The second, well it was the day that the doctors started that ticking clock and I knew for the first time that I wasn’t going to live forever, in fact, it was worse than that, my time was totally limited. Facing your own mortality is very different from being diagnosed with a chronic illness that will kill you at some point, that some point could be anywhere, including the time that your life might normally have ended, but knowing, really knowing that you will never get that far, changes everything inside you. Once I had grieved for myself, I started grieving for everyone else around me, but that too ended and I thought that that was it, it wasn’t. The two things together plus this illness now means that I cry at the drop of a hat, but then there are tears like those from a few minutes ago, I saw actors showing such pain at the death of a loved one, that before I knew it, tears rolled and I felt true pain inside me. Oddly, it is an amazing thing that I wish I had learned to do when I was little, rather than being teased by my siblings and living through more things than anyone should that just closed them off. When the damage done by my PRMS started to make me cry for nothing and I do mean nothing, I hated it, I hated it with such a passion and was so embarrassed by it, that I chose at work to be hidden in my own office space where no one could see them and at home I just tried to hide them. Now, I actually would say that off all the things that PRMS have changed in my life, this is one that I thank it for. I thank it for opening up that route to my tears, despite the embarrassment that I felt. I thank it for making me take the time, even thought that took making me housebound so I could go through that whole forgiveness process and I thank it for teaching me that death is happening and it has to be embraced along with everything that goes around it.

It doesn’t matter how hard our illness is to bear physically or mentally, there are things that it opens up for us as much as it closes off many other, it isn’t always a totally take, take situation. Ask anyone with any chronic condition and they will all tell you that they now appreciate life and they now also feel so much more empathy and compassion for those around them and in the further outside world. It doesn’t change us as people, what it changes is the intensity that we give to life and everything in it, something we didn’t have space or time for before and every one of us just wish we could teach that to everyone else, without them having to become ill first. Everyday life, going to work, family, home and our modern busy lifestyle squeezes out what is really important, the result is we have lost touch with ourselves.

Read my blog from 2 years ago today – 20/04/13 – What happens next?

This may not sound like much but for the first time in more months than I ever planned in my head, my living room curtains are no longer closed. Open in the hope that winter has gone, I did actually turn the central heating off a week ago and the house has held it’s temperature, so fingers crossed. It isn’t the only thing that I have opened today for the first time in ages, I actually have just opened my entire collection of email accounts.

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