The flow of one life

The first month of another year is almost over and the start my 11th year of living the housebound life has begun. That is a strange sentence for me to have actually written, as the biggest thing I have noticed the longer I live, is that time is totally irrelevant. I don’t know if it is just age, or if it because of how I live, but time means almost nothing, other than when I need to do this or that. The clock totally dominates my day, but as all my days are the same, which week of which year makes no difference at all. I rise, I take my meds, all set out for each time slot of the day. I eat my meals, I tweet, I write my blog, I play some games on my computer, then I join Adam on the sofa to spend our evening together watching TV, broken by more meds, then I go to bed, the place where I spend the bulk of each 24 hours. Days are just days, no change, no differences, just days. In fact, my days are simply the filler between the hours that I need to sleep. One runs into another and they all melt into one, as the years now melt into each other.

I know that may sound dull and monotonous, but it’s not. There is a contentment in my life, and a happiness, that to an outsider will be hard to understand, but I am happy, truly happy. I know that I don’t have anyone who can verify this, as no one is with me throughout my waking hours, but I can put my hand on my heart and say that it’s rare for there not to be a smile on my face. I don’t mean one where my teeth are on display, but one that just lifts the edges of my lips and strangely, it’s hard to remove. Even when I go to bed, as part of my relaxation prior to sleep, just as I always have to consciously relax the muscles in my body, I have to remove that smile. What put it there, well that’s truly hard to explain.

For most, including me, the idea of losing my memory sounds like sheer hell. Losing those hard-earned narratives that make up our lives, should be the scariest thing that can possibly happen. All those people, their names and their impact on us, those places and the order that each locked together, are vital to our sanity, aren’t they? Well for me, it appears not. I’ve lived for years with those irritating moments when I find myself in some room with no idea why. Loss of short term memory is a pain in the backside, and yes, I can see without a doubt, why that can drive anyone up the wall. But then it started to step up until even Adam noticed not long ago that I could talk with total conviction about what I had done in the day, when he could see that I had done not one part of it. I eventually even had to admit that I thought tasks were completed, when the truth was, they hadn’t been started, but I’ve stayed silent until now about the loss of much more.

For a long time now, how long, I’m not sure, but it has to be years, I have been aware that things weren’t lost, just muddled. Events and people often felt disjointed and without subtlety checking with Adam I couldn’t be sure if I was right or I was wrong. But Adam and I have only been together 18 years, I have a lot of life that he can’t help me with at all, and as I was always on the move, I didn’t keep pictures or items that truly lock me into those times. When I knew I was heading into being housebound and that there was a good chance that my memory would go, I tried to put together a memory trail. I spent hours trying to lock memories to items within our home, memories that had no true connection to any of them. At first, it worked but over the years, it has all broken down. I can no longer even cover up the fact that without sitting here for hours trying to work it out, I can no longer tell you when each of my children were born, or their true ages. Those things that should come to me without thought, no longer appear without it, and even then I pretty sure that I get it wrong. Just as an example, last week it took me two days to remember the name of my ex-partner before Adam. We were together for three or four years, but for the life of me, I couldn’t translate the “T” in “TJ”, into “Timothy”, something that should have appeared with easy.

These are all things that should be worrying, things that just a few years ago would have had me in a terrible state, but now, somehow, it doesn’t both me at all. I know that sounds like something I should be truly worried by, as they are all things that should upset me, but somewhere in the past couple of years, I’ve accepted it all and without it sounding cold or callous, I quite honestly don’t any longer, actually care. Whether it is acceptance, or it’s just part of this whole process, I can’t be totally sure, but what I do know is, when you no longer worry, you’re happy. I’m happy. I just am, I’m no longer that worry wort, if things don’t get done, or don’t happen, what does it matter, as tomorrow will be here when I wake up, another day, month or year, all flowing into one. I can’t control my health, I can’t control how I feel, or what I do. I can’t control my future and I can no longer control my past, it comes and goes as it pleases so why not be happy, why not just smile?

 

Please read my blog from 2 years ago today – 30/01/2015 – Is it something else?

I was driven to bed last night by a combination of tiredness and pain. Not the pain that wants me to scream, but that long drawn out aches that there is no relief from. As often happens I was quite comfy sat on the settee for the first hour, then just after 8pm, first my left foot start to hurt around the outer side…..

22 thoughts on “The flow of one life

  1. Oh good! I’ll forget the way ex-partner I last had even though he has not been replaced. I heard a horrifying story recently of a woman with all kinds of funding who goes off to hospital for a holiday. To be looked after and super grumpy to medical staff. Take the good parts of that story and consider if you could take a break in hospital? Don’t know if the British medical system could do a check in & perhaps you could get a catch-up on all your medical stuff? (ask about the potential benefits of Botox for lower limb?) just be prepared for slow internet but meals that just arrive. Food for thought……

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    • I’m not sure how to take this comment, are you referring that I need time in hospital as i am a bit mad? Other than that, I have at last received a date to see my Neurologist. The British medical system is slow, I think that it will be five months for asking to see him and actually getting to see him, but I have plenty to ask him about and in someways, I’m looking forward to it 🙂

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      • I hear tell the British medical system is worse than here, so done ever think I dont realise. Also, Triage is a shitty term for prioritising patients they see as needing it more. Get that Adam to call the Neuro clinic & tell them you just need answers. Politeness also goes a long way.

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      • It doesn’t matter how often you contact them, or how nice you are, the waiting lists are long and has little to do with triage. Of course those in immediate need are seen first, but the rest of us, no matter how bad just wait. 😦

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      • No. Wait. Definately not mad. Merely a work-around solution to take a break, get out of the house & when you are in hospital ‘all the specialists’ come & see you. My comments are always delivered with love & humour….Cheers,H

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      • Again, it doesn’t work that way. They are so short of beds, that unless you need nursing, you have to go back and forwards to see each specialist. Even when you are in hospital, unless it is an emergency other specialist can’t come to see you just because you are on their waiting list. The rules are simple and when they work, they work well. These days there are huge problems as all the lists are now too long for any doctor to keep up with. 😦

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  2. Thank you I now know that I’m not going mad myself. You have shown me that I have to be happy with what my life has become. I can see myself being happy just in the moment, I just have to get myself there. Thank you for your inspirational words thay have helped me a lot when I have needed it most.

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    • It’s hard for anyone to accept without it taking time. I didn’t see myself reaching this point and feeling as I do, but I’m sure if I can, so can others. Be gentle on yourself, life expects a lot of us but I doubt it expects more than we can manage.

      Take care 🙂

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  3. Your writing often brings me to tears. You are such an incredible person for all you go through and how you handle it all. I think it is incredible that you have at least on some days acceptance of your life and are able to find happiness within it. I don’t think it is cold or callous in the slightest, but rather the best possible way for you to live. As always, you have all my love!

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  4. 🍍 Yes ~ why not?! Well, I didn’t find your personal account to be “dull and monotonous.” Your writings read with great fluidity, and are colorful (to me.) 🐬 The message motivated me to make that gesture, as well (of putting one’s hand on the heart.) How beautiful! Take care. Now I smile as these words are being conveyed. 💐

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  5. Me am getting there. Am mostly housebound to. Me has always had problems but used to could go places with a little support. But now even in mine chair my body gives up super fast and hurts and not can move so is dangerous. Me am watching more tv than ever and use iPad with switch control. Me will have eyegaze control device soon so yay. Thanks you for typing of your experience it helping me. Is more easy find people with autism and cerebral palsy like me but not much with the ms especially basically housebound.

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    • I have come in contact with just a few people who are like me totally housebound with MS. I never understood why they all went silent eventually, I feared that they had died. I have realised now that there are many other things that closes us down long before that.

      Energy is a very precious commodity, and one that is all to often in short supply. I hope your new devices give you the help that you need, I will continue to write for as long as I possibly can, and knowing me, probably a little longer on top. 🙂

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  6. “I can’t control my health, I can’t control how I feel, or what I do. I can’t control my future and I can no longer control my past, it comes and goes as it pleases so why not be happy, why not just smile?” ❤
    I shared this post on my Facebook page, as I feel everyone should read your wisdom! Thank you for sharing it with us.

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