I don’t feel well today. I didn’t even want to get out of my bed, but I pushed myself, forced myself to get dressed, just because I was awake, not because I felt like it. We often take the physical attributes of a situation, like time, and totally ignore the way we feel. Take meal times as an example, how many meals have you eaten because of the time of day, not because you were hungry? So there I was this morning, looking at a clock that said 7:35 am. I could have gone back to bed, the alarm wasn’t due to go for nearly an hour, but was there really any point in going back to sleep then? Was it going to be worth it? I think that I made the wrong choice, I chose to get up when going back to sleep for that one more hour, was what I really needed. I still can’t understand how I can get up, after ten and a half hours sleep, and still long, for that one more hour. What on earth has happened to me, that sleep is the one thing that I have now grown to hate, yet at the same time, yearn for more than anything. It feels like some kind of pariah, that lives in the middle of my life, clawing at me and always trying to drag me into its clutches. Sleep may well be my escape from pain, and everything that is happening in my life, but it has also become a prison that I just can’t escape.

I have this image of my future life where all I really do is sleep. A life where I wake to take my meds, to eat, to go to the loo, then, just go back to sleep. In fact, there are days right now, where I honestly believe that I could do just that, and do it without any great thought. If I didn’t have this, if I didn’t have the drive to keep writing, to keep active online, I would do just that. Crawl into bed and sleep. Today is one of those days, where I almost fear blinking, as I am sure that that second of darkness will be enough for it to win, that the balance would just shift. That I would land up sitting here in front of my PC, sleeping until my spine can’t hold me upright anymore, and my head drops slowly forwards until it finally crashes into my keyboard.

Life shouldn’t be like this, it shouldn’t be that you fight every second, just to stay awake. Every new day should be a joy, a place you enter with excitement, searching for those unique points that make it intriguing, that make it more special from the rest. I guess that’s the problem with routine, you know it is safe, you know that your day is protected, secure and somewhere you’re able to cope. You can’t have both. You can’t have the joys of the unknown because the unknown isn’t safe and mentally, that just freaks you out. So, life became safe, secure, always the same with just one highlight, the sleep that lets you escape. No, I can’t have both, it’s impossible as my  health won’t let me.

I made the decision to change my routine this morning, I changed it by just 55 minutes, and now I am paying for them back. I got up early because going back to bed seemed pointless. Four hours on, I am still paying for them. My body is still craving those minutes of sleep that it missed. It sounds simple doesn’t it, just go to bed now. Go into the bedroom and get into bed and sleep, but of course it’s not. I would have to pay for that later, as I would then be out of routine again. The fluid lines of my daily routine, the step from one task to another, would then be broken and I would pay for that too. When I first brought routine into my life, it was my saviour. It gave me the structure that I needed, a mirror image of a work-life routine. It improved my life no end, I felt as though I once again was living, not drifting. Our perception of our own lives is so important, we all, ill or not, need to have that continuity with the outside world, even if we have nothing to do with it. What I didn’t allow for is my crazy brain, the one that can’t stand it if an ornament it out of place. What I didn’t expect, was that it would in time transfer that to every part of my life. That the majority of the time, I would land up feeling lost, under pressure and scared.

I knew from my past, that I get physically terrified by the unexpected, where continuity should exist. Having experienced total terror, when I arrived at work to find the layout of my office was unexpectedly changed overnight, I walked into a room I knew, but I felt like I had stepped into an alien planet. I was totally lost and totally terrified, unable to make my brain accept that they two places were the same, and unable to make sense of it. I had never felt anything like it, but that intense panic still haunts me to this day. 16 years on, and my brain is now bringing that terror, into my everyday life. Routine is becoming something I daren’t now change. It has been slowly building, increasing in it strength and determination to make me pay for even the slightest alteration. All it takes is for a problem to occur with my PC, or one of the sites that I use, and that terror starts to build. If I find myself running too far behind for comfort, again I find myself feeling scared. What of? I don’t really know. Getting up those few minutes early, was supposed to stop that happening today, but here I am, now fighting against what supposed to have made life easier. That panic is also the reason, that I now have to start preparing at least a week in advance if I know, I have to go to the hospital, or if someone is coming here. Interruption or not, that day still has to appear, as though nothing has changed, as though I have been sat here, just as I am now.

I can’t be sure, as I wasn’t in their minds, but the panic I have seen in the eyes of someone with dementia when they too are lost, looks just like the panic that I feel. I have only seen it a couple of times when I was visiting an old people’s home. I can still remember how terrified they looked, not just scared, but so lost, that it was hard to witness. The part of my brain that deals with all of this is slowly increasing its effect on my life. You can’t escape your own brain, you can’t manage what is unmanageable, all you can do is try to work with it, and hope that somehow along the line, you find the right balance. I guess, that is all any of us can do.


Please read my blog from 2 years ago today – 20/04/2014 – I want me back

Four days ago I gave myself a shack and set about once more trying to do all the things I am meant to for my health, including once more bladder training. I have lost count of the amount of times I have done this and yes I keep up with it for a few days and somehow it all just slips back to normal. I decided because I knew that I was carrying a large amount of fluid that I would take my Frusemide every day for a few days, just to help shift it, I haven’t actually stood on the scales but I swear I must have lost a stone in weight, I can feel the difference, not just in my pyjamas and dressing gowns, but in every step I take, I am totally aware of how different my legs feel and even my stomach, silly I know but that is what is happening. There isn’t any point in me standing on the scales as I haven’t stood on them now for over a month, but I find I…..

15 thoughts on “Balance


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    • Nevi, your clearly not well. I live in Glasgow not Dublin. LOL. The outside world make my life pretty rotten at times. If it just me, Adam and my brain, we’re fine. No matter how I try, the horrors push their way in and make my life difficult. This too will pass and life will go back to normal. I too am a dreamer (((Hugs)))


  2. I’ve felt that panic. Worse in the winter I now realize. Living alone now, makes it easier. That sounds crazy and stupid but, my children don’t understand anything I am going through and they made the panic worse. Their concerns seeing it happen and yelling at me trying to get it through to me made it so much worse and harder for me to get through it. The overwhelming fatigue is something else too. Unless they themselves are going through it, they will never understand and that in itself is probably almost as terrifying. They do however understand my need for routine. I think it’s a comfort to them as well. I’ve seen them eyeing me when I awoke to judge how the day would be and if they could relax a little. Writing this now, made a light bulb pop on. I’ve been going through this for many years and something else I just blew off as being weak in myself.
    I’m so thankful for you writing about this today. I now have a better understanding of what my children have gone through all these years. When they should have been just growing up. Not worrying about their mother and only parent they really had. I now have to acknowledge this and tell them before, like Alzheimer’s, my brain just forgets. I hope your day and mind has eased a little bit.
    Thank you for being who you are and writing the way you do.


  3. This post has made me cry. We all need to be in charge of our own life, we like to keep to a routine that makes us feel secure, safe and in control and when that is taken away however briefly, it causes fearful thoughts. We all send you loving thoughts Pamela that you may find the inner strength to find peace from the torment of your health issues. Tomorrow is another day lets hope it’s a better one for you! HUGS!!!……..🌻

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  4. I was just posting recently that I need to make a schedule or routine.
    The feeling you described reminds me of how depressed I was after my divorce. I thankfully had my animals to take care of. Have you considered getting an animal? Even a Hamster would work. Something alive that depends on you for food and water. You would have to get up to do those things.


    • I am long way from depressed. I have those feeling as far back as 16 years ago, it was confirmed to me by my Neurologist that it is all part of the damage that my PRMS is doing to my brain.

      I agree with you about pets, but I had to get rid of my cats. After having them for 7 years, I was forced into re-homing them. I simply couldn’t keep up with the work that they required, it wasn’t fair on them, or the damage they did to my house because of it. I couldn’t keep up with the work of even a hamster, it would land up as just another thing my husband would have to do for me.


  5. Living with my husband’s chronic illness taught me the following:

    The more his brain found it difficult to cope, the more he needed sleep and the more he needed routine. I think this is perfectly normal! Just imagine the incredible feat your brains are doing! They lost a considerable amount of their power – for whatever reason/illness – and yet they keep going. And brains being “brainy” by definition, they know what they need to do, to keep their power up:

    They know that they need a longer energy saving period, and also that they have to rely on low-energy routine tasks to have enough left for the high-energy and important ones. In your case, your blog with which you are helping tens or even hundreds of people. As you had helped me understand more about chronic illness and thus – hopefully – be a better carer.

    All our brains go into overdrive when confronted with too much input and/or contradictory data, and then we lose our capacity for rational thinking and we panic. For some of us the panic threshold is high, for others it is low. For you it is low. But do not blame your brain for it – rather congratulate it, as it sets the alarm bell loudly enough for you to realise what it needs: energy to cope with its most important task, your writing.

    Thank you very much for your help!

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  6. i don’t feel quite the prisoner-of-sleep thing, but getting into bed at night, no matter how tired in body and mind i might be, is not the release and relief it used to be. having my body and mind both relax enough to sleep at the same time is rare. i am inspired, tho, by your attachment to routine. i have very little and i am, like you were, floating. thank you, as always, for your honesty, and sharing your life with me.


    • Firstly, thank you for reading, and secondly, if you don’t have a routine, I strongly recommend that you try it, even if it is just for a month as a test, and then decide, as it honestly transformed my life. What do you have to lose? (((Hugs)))


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