Understanding with love

I feel as though I am already behind today, but oddly, I’m not that bothered about it. I honestly don’t know what has changed in the last little while, but there has been a change, one that has made me a lot more laid back about everything. I noticed it a few weeks ago when I suddenly started taking a lunch break away from my PC, something I wouldn’t have dreamed of doing a year ago. Slowly since then, everything else has joined into that laid back feel. I don’t even panic any longer about getting to be by 9 pm, if I am a quarter or half an hour late, it doesn’t really matter any longer. I think that it was the realisation, that my life is now reached the point that it has to be supported, by things outside of me, has made me realise that I can’t stop, what is happening to me. That is a life changing shift, and my life has shifted with it. That rigid determination to control, to keep my health steady, which I have to say succeeding for 5 years, had reached the point where it was no longer working. I knew eventually, no matter what I did, it would fail, but I’m proud that I managed it so well for so long. This new phase in my life, requires a new thinking, a new way of living and this time, not as rigid. Yes, still holding to the same principals, but with a softer and more elastic quality.

I still believe that structure is required. I still have a time at which to get up and a time to go to bed, both to be aimed for, but if missed, it doesn’t really matter, as long as it’s not into the next hour. I have times through the day at which I eat, not rigid to the minute, just approximate. The big change on all of them is that after I eat, I sit, I rest, I don’t rush so that I can launch myself into my next phase of the day. Even when I am sat here, other than when I am typing this, I stop often and just watch, yes, watch not just listen to the TV. I don’t dare stop when I am writing, if I did, I know without a doubt that I would lose my flow. My brain would just freeze up and refuse to keep giving me the words that I need. But the rest of my day, is now chilled, calmer and with a slight feeling of relief sneaking in around the edges. Admittedly, several months ago, I had started to break things down a little when I last changed my routine of what I was doing online. I had taken away all the timings and allowed myself more freedom, as my body simply wasn’t capable of keeping up with it any longer, but all the other elements of my day were tightly held onto. They were the points that I aimed for, that kept everything else running smoothly. My well thought out routines, each appropriate to the energy levels my health supplied at the time has meant that I at least felt, as though I was still in control of my life

I have lived for so many years holding onto to every second of every day with a grasp so tight, that it almost felt like I would drop off the surface of the planet if I released it at all. So for me to be able to say that this new relaxed me, is happy and content in this new life seems almost an impossible outcome. I suspect that is why it has taken almost a year from change one, to actually getting here, a here I never even knew I was aiming for. I haven’t let go of any of my principles that I believe to feel like a full and rounded person, are all still there. I haven’t let go of routine, my day still starts with the alarm and contains my work replacement programme. I still have my list of goals, those things that let me feel as though I am still making achievements daily, and that allow me to pat myself on the back frequently. I still have a basic structure in what I do, but I no longer beat myself up if it isn’t done when I think it should have been, or even more radically, if it isn’t even done at all. I still do all my checks throughout the day, of posture, mood and so on, but all of it, every single little piece of it, is relaxed. More than that, it is all now about totally working with my health, something I have always tried to do, but with a huge amount of trying to control it and that is the biggest change of all.

I guess, I knew this time would come. That somewhere in the back of my mind, I knew that the plateau that I had created and I was living on, would end eventually. I actually never originally thought that it would last this long, or would work at all, but I did it because I was convinced that working had kept me as well as I was, and losing it, would be the end of me. When I worked in the office, the only break I took from 4:30 am through until 3 pm, was to have a cigarette, that was it. Even when I came home at 3 pm, I was still working as I was all weekend as well, as I believed that I had to be an old fashioned housewife too. Not to mention that I was on call 24/7 for problems in the office, which there frequently were. Becoming housebound, change all of that, work went on but the hours changed and how I worked changed as well, the first signs of relaxation appeared in my life for the first time. Each step-down has been forced upon me, until now. This one doesn’t feel forced, this one feels natural, a progression that had to be. My life has reached a point where this is the only option, but it’s also the right one. Somewhere inside me, my brain and body have actually met, they have spoken and they are in agreement, not something that I am used to.

So here I am, a relaxed and calm person, who is happy to go with the flow, rather than trying to make the flow go with me. I have adjusted, accepted and admitted, that my wheelchair is my future and my lungs can’t work without a regime of drugs to support them. There will be days still to come when I will kick out, scream and complain that it just isn’t fair and it’s totally not right, but there is also a calmness that I recognise when acceptance is in place and grief is coming to an end. I’ve felt it settling over me in the past few days. I’ve heard it in my writing and I have seen it in my daily actions and reactions. It wasn’t just the loss of mobility or the need of support for my lungs that was hurting me. It was also what I suppose is an inner knowledge that unlike the past, this isn’t a new plateau, this is, at the best, a gentle slope. From here on in, it is going to be a case of more and more drugs, more support, more help and more aids. All will become part of my life, because my body can’t survive any longer alone. Being Supported, is a huge step to accept and adjust to, I know I am at the very very edges of it, but it has started and there is no going back.  I know inside that the future I once saw away in the distance is closing in on me. Just as I said to the MS nurse, I’m not quite at the point where I need outside help, but it’s not far off, neither is that future. Yet even last night, for the first time, I found myself in the bathroom, trying to work out where the best point to put a grab bar to help me get to the loo would be. That is a major change in me, I am accepting all the things I once swore, would never happen until there was no other option possible.

It’s like I can feel my body changing, becoming weaker and not as able as it was just a couple of months ago. I am changing, I am becoming a different person in so many ways and I no longer feel like or believe there is a good enough reason to fight it. I might not need that grab bar today, but that too is a day that is getting closer, I can feel it. My life in the past couple of months had already changed, I just needed a chance to catch up with it, accept it and in an odd way welcome it. You have to say “hello” and introduce yourself to every new phase. It’s the only way you can ever settle to this new friend, as if it’s not your friend, it will land up being your enemy, something that never works for any of us, regardless what we might think. We may not ever love our health, but we do need to befriend and work with it, if we want it, to befriend and give us, a break occasionally.

Please read my blog from 2 years ago today – 26/10/2013 – Life changing dreams 

I had so many silly dreams when I was child, you know the daft idea that come from nowhere and are created to make something better out of what reality was. My favourite was that I wasn’t my parents child at all, I was the daughter…..

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