There are just a couple of days until Teressa and John are here for a few days and I am already getting myself in a muddle, from what I need to plan, like meals and ever to what day they are coming across to Glasgow to see us. I think I freaked Adam this morning as I told him that it was Saturday, he has planned out his tidy up of the house for them being here on Sunday, something I only remembered after he had gone to work. It is always the same, even when I have time to plan a change to my routine, I still get myself tied up in knots. I keep trying to work out how I might be able to work ahead of myself as far as it goes with everything I do online, something I know I shouldn’t be stressing about at all, I should just be telling people that I am taking a day off here and there, but I, of course, won’t be. One of the comments I received the other day said something I know and I have always known, that I should make time to just chill and not push myself every day to do more than some people who are fit and healthy would do. It isn’t so much that I can’t give myself the space or permission to do so, it is far more a case of being scared of stopping, even for just a day. All my siblings are just the same, work, work and more work, then possibly a small space for life every now and then. It is really hard for someone like me to ever stop, but when you have a grandfather who never took a day off his entire adult life, not even to get married, he thought 3 hours was all that was needed. Who collapsed in his office in the shop aged 78, fought against being in hospital, but then in his head turned his hospital room into the shop, telling people to straighten pictures, wind clocks and so on, before dying of the cancer not even he knew he had, still insisted that the shop had to stay open regardless of death or not, might just explain where I get it from. But there is one other thing that drives me daily and I know it is as silly as it gets, I am scared that if I take time out, I will lose track and be unable to ever catch up again, I would be left swimming in a huge muddy puddle that would just suck me in.
The last few days I have written about the medical changes and some of how they affect me, but just saying that it scares me is like saying I woke up today, when you are losing your mind and your health all in one swift move, you build system, ways of continuing, of holding onto the reality you have, which is why all the stepping down in the amount I do is always painful, it is like documenting your inability to cope with life. Two years ago my daily output was more about three times what it is now and to make it worse, I have written about the entire downwards journey so that I and everyone else can see how far I have fallen. The balance between wanting to build a record and telling the world you are disappearing as a person is so fine that I cross it almost daily, my strength is limited, I am human, not super human and at times what I write hurts, it really hurts. I guess I am about to document a new phase in my illness, one I have shied away from because of that hurt, as I actually have to admit that I have reached a point where small tweaks aren’t enough and I need to make bigger and bolder ones, but what? This is one of the bummers about being ill, it isn’t like I have a choice in any of this, if it was just about choice, I would work faster and harder and I would still be doing everything I have ever done, but it isn’t that simple. My health has removed one of the things we all believe is ours by right, choice.
When did I last have a choice in anything, I don’t choose when I want to go to bed, when I get up when I eat or even when I fetch a drink or go to the loo. Everything in my life is planned, part of a routine, what has to be done and what needs to be done, all governed by my fatigue and pain levels. MS demands routine, push it, make a wrong choice and the result is exhaustion and life grinds to a halt, taking days to recover, so everything has to stay the same, measured and precise just to stay where you are. Progressive conditions still progress, it doesn’t matter how hard you try to keep your life level, they just keep eating away and eventually they make you oh so well thought out and tested routine, wrong. Well that is where I am, my routine is now wrong, I am doing too much every day and I am constantly playing catch up, but I never actually do, I just lower my standards, not just to second best but in time even sixth or seventh best. Where do I start? At this second I don’t know. I just feel rather lost after letting all that out. I can’t find one single answer other than I need to sort it and I need to rebuild it all, life has to change, but it also has to go on.
Please read my blog from 2 years ago today – 01/08/12 – A wedding to plan
I start today with some good news, you may remember that my daughter Teressa returned to the UK just a few weeks ago and her partner wasn’t allowed in and had to go back to the US, telling the truth caused them a lot of pain and they have done what they can to get back together with little luck. Being forced apart like this has though done little other than to make them realise just how much they…..