One day on and going backwards

Adrenaline is such a bitch! Despite having a night with almost no sleep, the best I could manage all day was to lie in my bed and worry. I quickly worked out that distraction was a far better option, so it was back to playing card games, and telling myself, how good I am at Sudoku. There is a small truth though hidden in that, distraction only works so far, and without reason, well not one caused by what I was doing, I found myself weeping for what felt like no reason. As the hours clicked on, and the time of my fate grew closer, the adrenaline kicked in harder and harder, By the time my first ever outside carer arrived, Jane, I was wired and shaking. I had flown into let’s get this over mode, one that I am sure made me appear manic and over the top.

I had planned out just how I wanted to go through this torture, every step was worked out and every item, placed just where I wanted it. I knew that this, and the next few weeks, are about learning for both of us. I say weeks, as I have two carers allocated to me, each visiting me for a week, then they change over. I found myself flying in a way I normally never do, and at first, I was sure that she was confused as to why she was here at all, but it did slowly appear. Undressing was oddly the easy bit, I do normally manage my clothes, but I thought that my embarrassment of my body, would get in the way big style. Before I knew it, I was naked and on my way into the shower. With my hair washed and the conditioner laid in big style, as I hate those knots that washing used to cause, it was then that her job really began. As soon as I stood to let her scrub the entire back of me, I found myself out of breath and with a huge desire to lie down, I was suddenly on empty.

She had been in the house for less than 20 minutes and I was still shaking all over, trying to talk without breath and wanting to start crying again. Both my body and my mind had had enough. I had no choice but to keep pushing forwards, but I felt like a wreck, stuck inside a person who had to do what was needed. Jane was great, she chatted with me and took me through all the things that I needed help with, but I had in many ways receded inside me, what she was seeing was pure bravado, but I’m not too sure if she could see through it, or not. To be honest, withdrawing, was the safest place for me, I felt safer, less set upon and if not in true control, at least letting it all pass.

When she left, I felt so odd, sitting in my wheelchair, clean and with Adam due home in less than a half an hour, but I was numb. I think it took me almost the entire evening to even find a tiny part of me, I wasn’t there and I’m still not sure where I was. I guess yet again, that I was just going through the motions, doing what I always do and heading my way to bed. We did chat about it all and even went over some of what had been said the night before. If there is any good at the minute, thanks to this, it has opened up what had been a not closed, but somewhat squashed channel between us. It is so easy to just go through the motions of life, to hide those raw things that we feel safer not talking about. It doesn’t matter how much you love each other, or how close you are, we all move into those safe positions. There is a fact that can’t be ignored, we can’t talk about my health and how I am emotionally all the time, so like everyone else, we just live. We talked, but it was only on the surface, touching the facts, not the depth of the feeling.

I slept that night like the dead. Not once did I even rise to go to the loo, sleep consumed me and I was more than happy to let it. Even when the alarm sounded, I was so deeply gone, that it took me a full hour to be able to get around to breakfast. My tremors are running wild and even now, I am still weepy. How this has destroyed me so much, still evades me. I feel like I am still somewhere that isn’t safe and I am not safe to be here. Don’t take that wrongly, there is no physical fear, it is more a fear of my health than anything else, and that’s something I haven’t felt for a long, long time. I haven’t been this raw, for so long that it feels like a totally alien emotion. I thought that when I woke, I would find myself at the start of that healing process, when the grief of what has happened to me, would have lifted to a level that meant I could live as me. Yet I am still in the depths of a very large black hole. If my body were in a stronger position, I’m sure that I would be feeling more in control of myself, it is just that everything has been piling in on me for weeks. Somehow, I have to find a way to break this and I am sure that what I need more than anything, is to find rest and a touch of normality in my life. I will get there, I know, but right now, I’ve just had enough of feeling like this.

 

Please read my blog from 2 years ago today – 10/06/2014 – Body rush

I seem to be suffering from brain overload today, a thousand thoughts about a thousand things and most with no connection to each other at all. It’s not new, it’s something I remember since childhood, a desire to know why, what, and who has been a constant companion, which considering the fact I have a condition that there are no answers to, is either a good thing, or a total nightmare. Questions race……

28 thoughts on “One day on and going backwards

  1. Wow, I believe you need to give yourself time, to trust in what your carers are doing. I thought a lot about how it would go for you, I know how I felt when my husband had to shower me. Let alone a complete stranger. I am proud of you. Just wow, you have no idea how strong you are, and how strong you make me feel I can be. Thank you

    Liked by 4 people

    • I am sure in time, I will settle, right now I am working through it all and it’s a biggy for me. I found a stranger way easier and I would Adam, it’s tough for all the reasons I have said already, but we all have our own issues to work through.

      Right now, I don’t feel strong, not exactly weak, but very much missing something that matters.Thank you for you continued support, it means a lot. (((Hugs)))

      Liked by 2 people

  2. I remember when my Dad first got his care-aids. He was extremely nervous as to what they would do and wanted to have me cancel but I wouldn’t. It was as much for me (he lived with us) as for him and it was one hour a day (1.5 on Wednesdays when he had a full shower. I agree with Alice that you need to give yourself time. First you had to give in not being able to do everything for yourself and now you have strangers coming in and doing it for you. That is huge. Be gentle with yourself. Sending big {{{hugs}}}.

    Liked by 2 people

  3. Comment by: Stephen Walker

    Hi Pam,

    Gosh! I feel drained after reading this. I don’t think I will complain about my symptoms again for a long while.

    I share your reluctance to discuss my pains and concerns even with those who claim to understand… They don’t and can’t.

    Nobody knows, truly knows, what goes on inside another’s head.

    Liked by 2 people

    • It has been an incredibly hard few days. I am still exhausted and struggling with just being a person, far less one with some crazy condition. I will get there, I know I will, but right now, I kind of want to disappear, which I know is the worst thing to do. I have fought all those things like depression for so long, that I’m not giving into them now. We all find our way through these things and I’m no different. Writing them here, is my release, as talking somehow, doesn’t have quite the same result. 🙂

      Liked by 2 people

  4. Oh Pam, I’m so sorry you are feeling so bad about this. I dont know how it would fell to depend on others for my persona care.I know it’s their job,. And they do it everyday.. It is not the norm for us to have others do these things and it’s takes some of our freedom from us. But it has to be done. I hope it will get easier for you . I thought about you many times yesterday. I try to think of it as one thing you don’t have to do yourself. Like someone coming to clean your house. Frees you up to concentrate on other things.
    But as I said, I have never had to let anyone bath me. So I really don’t
    know. Many (( HUGGS)).

    Like

    • I never expected to feel this way, and to be honest, I think some of it is down to this flare, I am so tired that even thinking clearly is a struggle. All I can do is wait and see how things pan out over the next few day. There has just been too much happening, too many visits, hospital appointments and even phone calls and people at the door. I feel as though I haven’t stopped for a year, yet I have done less than most would in a normal single day. As I have said before, I just need to wait, to rest and to see how things go, yet I don’t even feel I have the energy to do that.

      I will get there, life will get better and I will feel better.

      Take care of yourself (((Hugs)))

      Liked by 1 person

  5. I’m so sorry you’re going through this.Change is such a monumental hurdle to overcome and fit into the “new normal”. When it happens with me, all I can do is just take deep breaths until I’m alone and try as calmly as possible to work it out in my head to fit it in. I know you know your way to do that. It’s just such a horrible feeling to feel so overwhelmed and shutting down in sleep my first thing and when I wake I start the process of working it in. I really do feel for you.
    Much love and ((hugs))
    🌷🌸🌹🌺🌻🌼

    Liked by 1 person

    • I will get there, I am sure of that, but I have to also be true to my blog, how I feel, what is happening and it’s effect, all have to recorded, for it to be the work I intended it to be. The problem with the truth, is it often raw and painful and I am sorry for that. So many are feeling my pain and I don’t want to hurt others.

      This is Friday, and still I feel both physically and mentally drained, but I am sure that a large part of that, is my health, not the arrival of the carer. Thank you for your caring words, I really do appreciate them, especially when I haven’t felt this bad for a long time.

      Take care (((Hugs)))

      Liked by 2 people

      • You’re right. I do feel your pain and I really understand and appreciate your blog. I’m so sorry you’re going through such a hard time and knowing there’s more to come. Its overwhelming the torture our bodies create with the deseases we have. I care about you and think about you as you adjust and work your way through it.
        ((Hugs))

        Liked by 2 people

  6. I’ve read your blog,I hear your words and you could be writing for me.I understand how painful it is to have to have help to dress to shower,especially when I did all those things for others not so long ago.The days when the head is in the shed and all you want to do is cry,try to be kind to your self if it were someone else you would be kind to them.Do it for yourself as well you are entitled to be kind to yourself..I’m sending love to you .If you want to talk via your blog that’s ok or if you want to speak to me that’s ok too.You can find me @springheadterr1 on twitter if you would like to.N.

    Liked by 1 person

    • Thank you, it’s good to know I’m not alone when it comes to just not handling what seems like such a simple thing. Today, she will be here again and I have to admit, that I do feel better about it, if not totally at ease. Thank you for caring.

      Take care (((Hugs)))

      Like

      • Hi, hope u r feeling less fragile today.Reading further on yr blog one person mentioned humour,humour and music save me,if I can find a little laughter its great The thing that struck me in the begining about being showered was that really I was unused to not having clothes on in public,my carcass is not as lovely as it once was, but I preferred to be clean and sweet smelling and realised it was a small price in the greater scheme of things and thats how I dealt with it.Its always one day at a time and a challenge to me to find a newer better way to accomplish things.When I do I’m really proud to put one over on the dam problem.I send love and thoughts to you.Nx

        Liked by 1 person

      • There is a growing theme in all the responses to my last few posts, all of us are embarrassed by what has happened to our bodies. It really does feel like that one last cruel swipe, if we didn’t have enough to deal with, we no longer look like us. I am getting the impression that pride is a far bigger issue to most of us, than the problems of our health. Just goes to prove we are still people with all the same silly issues, that everyone else also lives with. It may be something small, but it seems to feel so huge for the majority of us.

        I’m glad you have found your way through and that you have settled into being able to shower in public, if you like. I am getting there, but it really is that handing over of independence and control, that is getting to me, and that isn’t quite so easy.

        Take care 🙂

        Like

  7. Ok, it’s 1:35 here in KY. HOW ARE YOU ? I just thought of something ,,when I am nervous to the point of upchucking,,I make silly conversation.Or just easy convo. I am good at loosening people up to help me and them feel more at ease.I was tell stories on the doc I worked for when they were sedating me for gall bladder surgery.I told stories on my family when they were Prepping me for my crainiotomy, I.love to talk, especially to new people. I love to make them .laugh. It eases the tension for everyone.I bet I could do it fog you, if I was there.oh, I wish I could be there for you.I know I could help you feel better. I know I could get a .laugth out of you. I just know..I want you to laugh. I want you to have fun. Seems like you aren’t. I understand why. But things need to change. We have to find you some hahaha ! A big deep belly laugh could do a lot. It could also do some bad,,,,,,,but it would be happy bad. Like the saying goes, WHEN I GO,, I HOPE THERE IS A SMILE ON MY FACE !!
    HONESTLY,I would rather die tomorrow laughing, than live 30 more years with a frown on my face.

    Love ya Pam, hope ur better……😃

    Like

    • Sorry I couldn’t answer sooner, but for some reason, I couldn’t get into this site. I was sound asleep when you wrote this, I still wish that I was.

      I am feeling just that bit better about it all, I’m slowly getting there. Jane is here again today and with Adam here, I have the feeling that it will go better.

      You are so right, laughter is so important as without happiness, we have nothing. I am smiling if not laughing today, and I thank you again for caring so much. (((Hugs)))

      Like

  8. Hi Pam, all of this drains away the little energy we have as well as emotion, no wonder you are on empty and beyond, how can you not be and I m really glad you slept though..strangely enough unusually I have slept like a log too through assessments etc happening here. Again the integrity you give to your blog is brilliant to us and hopefully a teaching aid to others, one day or hopefully some one is using it now. I ve found most Carers have understanding more than anybody else, but still it’s exhausting beyond belief. If you get a rapport eventually with one or two of your Carers I m sure they be astounded as what you used to do and love paying visits to you. On a thought may be you could ask for one and a half hours to shower giving time to prepare and relax ( at a later date)I feel that’s important. Any way well done and hopefully your routine changes for the better and one YOU like. As you ve probably read it s all about personalisation ( care plan ) these days but I think it misses the raw feelings you have written in a graceful way. Thank you.

    Like

    • I write as I do, because I hope that what you say will be the truth. Someone will learn from it and gain understanding of the lives that we live. I know that until I found myself here, I didn’t have the slightest idea or what it was like.

      In time, I am sure that I will have the whole thing organised to work for me, but it is still the very start of the whole thing. I’m still just taking those first steps, but thank you for your advice, as yet again, I don’t have a clue what is possible.

      Take care (((Hugs)))

      Like

      • No we do not know what’s possible, I m hoping to have regular showers but did not dispute an hour, in the mist of things I forgot, but I think originally they were planning morning which I d agreed till SW said she thought that was too early (I can t move early am) si it s at 11.30 when /if you have starts.loving your post saying it all realistically. Hope your next shoer is nice. X

        Like

      • That’s odd, as you know, I too got led into the early shower idea and had to change it, as it just wasn’t right for me. I know I keep saying we share much, no matter what our illness, but odd little things like this, keep popping up. Maybe, we share even more than I thought.

        I think I miss understood your earlier comment, as I thought you were slightly further along, well a head of me. It sounds as though we are neck and neck and learning exactly together 🙂

        Like

  9. “When she left, I felt so odd, sitting in my wheelchair, clean and with Adam due home in less than a half an hour, but I was numb. I think it took me almost the entire evening to even find a tiny part of me, I wasn’t there and I’m still not sure where I was. I guess yet again, that I was just going through the motions, doing what I always do and heading my way to bed. We did chat about it all and even went over some of what had been said the night before. If there is any good at the minute, thanks to this, it has opened up what had been a not closed, but somewhat squashed channel between us. It is so easy to just go through the motions of life, to hide those raw things that we feel safer not talking about. It doesn’t matter how much you love each other, or how close you are, we all move into those safe positions. There is a fact that can’t be ignored, we can’t talk about my health and how I am emotionally all the time, so like everyone else, we just live. We talked, but it was only on the surface, touching the facts, not the depth of the feeling.”

    Great writing!

    Like

  10. God Bless you Pam. My thoughts and prayers are with you. Linda

    On Thu, Jun 9, 2016 at 9:12 PM, Two Rooms Plus Utilities wrote:

    > livinginalimitedword posted: “Adrenaline is such a bitch! Despite having a > night with almost no sleep, the best I could manage all day was to lie in > my bed and worry. I quickly worked out that distraction was a far better > option, so it was back to playing card games, and telling mysel” >

    Liked by 1 person

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