Which, what or way next

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The mental overload that I have found myself within the last few weeks is becoming exhausting. Why is it, that when life finds a chink in your mental armour, it then pours in more and more until you want to scream at everyone, “Just leave me alone”. I find myself exactly where I feared when I agreed to the help of carers. Finding those glorious gaps where I am alone and life is peaceful, seems almost impossible now. Two months ago, my life was easy, Adam and I alone on Saturdays and Sundays and every weekday when he works, I was here by myself and our evenings were about us, nothing else. Now, I have just Tuesday, Thursday, and Sunday, when life is as it was, the rest, are messed up, changed and noisy with people. How can just one hour from each day being changed, feel like a total day taken over?

I know that last week was exceptional, as I was really meeting and building the picture of my needs from the incontinence service and the district nurses, but even when they were here to do my enema this Monday, it felt like my entire day was reshaped. The enema on Friday hadn’t really worked. I did warn her that I didn’t think the contents of my bowels weren’t in reach. As she squeezed in the contents of what looked like a rather large bottle, all I felt was the tip of it, then 15 minutes later the liquid starting spill back onto the pad she had supplied for such an outcome. Neither of us had really thought it out either, as although my wheelchair was to hand, I had my trousers and knickers still around my ankles. Not exactly a good move when my body was racked by tremors and we had to somehow get to the loo. Trust me, it was a journey that I wouldn’t have managed without her assistance, otherwise, my white bedroom carpet wouldn’t be so white. It wasn’t as though my bowels cleared, they just took exception to having something enter it from the wrong direction.

Until late that afternoon, that was all that happened. The hours passed and nothing other than fast journeys for small amounts of liquid. I really shouldn’t have wished for action as that was what I got all day Saturday. Every time I moved, I had to go to the loo to clean myself up. I went from nothing happening, to a slow seepage of solid that I could do nothing about. On the good side, it was also Saturday that I started to feel pressure right across the top of my stomach, a pressure that I knew all too well. Late Sunday, it started to turn the corner and if life went to my bodies normal plan, that would have meant three more days of gentle build up, them two or three days of pain, before it would move again. Normal was interrupted on Monday, by enema number two, and the wonderful relief of all that future pain being interrupted by relief. As Murdoch used to say “I love it when a plan comes together!”. Because it cleared as far as possible, there was no follow-up leakage, no pain nothing, just my body doing what everyone else does with ease. Monday also found me on a good day. When the nurse arrived the tremors were quiet and I wasn’t normal, but about as close as I ever get. That meant that once she had me safely on the loo, without either my trousers of knickers, I told her to go. She could see clearly the difference in me and was happy to follow my wishes. I think she had been gone about twenty-five minutes when I started to wonder if my choice had been a wise one.

Somehow, I had to return to the bedroom, play about with the new mega towels she had delivered (quite honestly, if you added tags, it would fit a 6-month-old baby), get redressed, locked up the front door properly, and tidy up all the bits and pieces she left behind. That whole period from her ring the doorbell to then was about an hour and a quarter, and I didn’t have the tiniest drop of energy left, twenty-four hours on, and I’m still not revived. It appears that I somehow managed to empty, far more than just my bowels.

It’s Tuesday now, that means I am alone today, this is one of my peace days that I knew so well, but every second of it so far feels, like I am working towards finding the energy for tomorrow. The morning will find me once more with the nurse, and another enema, although I doubt there is much there after yesterday’s spectacular success. Tomorrow afternoon will see my carer here for my shower. How am I going to make my way through all that, and still be alive enough to enjoy my evening with Adam? A double whammy, that right now sounds like something that is going to leave me beyond wiped out, but I have no choice, this is the agreed plan, the way things are to be until we know exactly what works and what doesn’t, for my bowels. It goes without saying that I am more than hopeful that the space between each enema in time will be expanded.

It is bad enough that I feel so out of control of my body, but to throw in the sensation that my life has been taken over and planned by others, well, it’s left me just a little numb right now. Yesterday, the chemist arrived with yet another new drug, something else for me to swallow on the instructions of my doctor. It feels right now as though all I do is swallow and breath in medications, and when that fails, the nurses take over and insert it where I can’t. If anyone can think of any orifice they have missed, well please keep it to yourself. I always thought that our bodies were supposed to carry us through life and to bring us pleasure along the way, life now is all about medications, just to make it work at all. That pleasure piece, well, it’s still there when there is the time, just a little harder to find, and far less fun than I remember.

 

Please read my blog from 2 years ago today – 06/07/2014 – Some scares never heal

I feel that bit more under control today, not as lost and as though I am grasping at anything in my mind to keep me in line and still moving. It’s mad how something you knew, but didn’t want to hear, can really through you into the worst of muddles and make you just want to stop the world in it’s tracks for a while. I would even go as far as to say that my determination not to be beaten, is returning, not in the angry…..

 

21 thoughts on “Which, what or way next”

  2. So sorry to hear all your problems..
    I understand about the undies my mom wore them and we had a mess all the time…
    Even at my younger age I had to wear them when I got hurt for urine this was long time when they kinda first came out and I never did feel comfy in them ..My heart goes out to you so you know you are not alone even tho I was never as in rough shape as you .I wish you the best hun..I am here for you..
    Hugggggs
    Suzette

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  4. Have you ever eaten Quinoa? It’s very ‘cleansing’ to the point I only eat it when I’m not out for appointments. Such is my wish to avoid not making it to a toilet. (Cringe) Wish I’d been told about it the year I spent on Oxy waiting for back surgery……….Otherwise, having someone invade your space & how it feels like an hour eats into your whole day? It gets easier, the more prepared you are and the more familiar they are with you and your routine. Make sure they leave you with less to do not more.

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    • That is without the trick, for them to leave me with less to do not more, I know that, I’m just not good at making it work. I guess I just can’t get used to the idea that that is what they are here for, to make my life better not worse, and to not be like even the most welcome house guests, work. I’m sure I will get used to it, it just seems like my life has been invaded in every way possible lately and I’ve been allowed no time to recover. I’m caught in that very big step, between new and familiar.

      I have eaten Quinoa once, but I don’t remember that effect. I’ve tried many things in the last few years, but as my issue is with muscles that don’t work, I’d probably land us with stored diarrhoea, rather than relief. I don’t know which would be worse. 😉

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  5. I HOPE YOU CAN ADJUST. IT’S HARD, NO MATTER HOW CARING AND NICE THEY ARE; THEY ARE STRANGERS DOING WHAT YOU CAN’T. IT’S HARD TO GIVE UP A SMALL PIECE OF YOUR DIGNITY, PRIDE,PRIVACY.THEY DON’T UNDERSTAND. I’VE GONE THRU 3. I HAVE A REPUTATION AS A “DIFFICULT PATIENT” TRY NOT TO LET HER STRESS YOU TOO MUCH.I WISH I COULD SAY SOMETHING ENCOURAGING. WHEN YOU’RE ALONE; SCREAM AS LOUD AS POSSIBLE. IT SOMETIMES HELPS ME………………………………THINKING OF YOU IN MY CORNER OF HELL.

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    • Sorry I have been away for a couple of days. Just not feeling up to reading much or replying. Sinus and ear infection, you lnow, sore throat and even hotter than usual. I know it sounds really stupid of me but I honestly don’t lnow if I can stand being hot for much longer. Its not just the 100 degree weather , it’s me inside ,I am always hot , no flashes, not hormones, just hot ? And I and always wet or damp from sweating.And to beat it all, my body temp is always lower than normal.. But I am so hot!!!!! I know this sounds ridiculous to be so miserable from being hot, but I am.I sound insensitive to others because they have much more serious problems than being hot. And I do too. But II feel like I’m going crazy !!!
      And last night our air conditioner decided to go out. The land Lord said it might be next Wednesday before they can get one and put it in. AND IM HOT.!!! Even with it working and on I’m still sweating every time I move, now No air conditioning at all. No I can’t do that. Not at 100degrees everyday.
      So we are at my mother in laws, thank God her house hasn’t sold yet, because we surely couldn’t afford a hotel room, especially not for that long, not even for a day really. But anyway we are here and I told Joey that I had to have internet, above all internet. And he said, “oh yeah, so you can talk to your friend in Scotland. “, And as soon as we got here he found the pass word for me and got me connected. I told him I could talk to you without it, but he said I might need it If I ran out of data on MY phone and tablet because I used so much at moms. True. I used a lot !!!!
      Anyway, sorry to rant to you when you were dealing with much more than I am. But I just couldn’t help it.
      I wish so much that you could have some peace and quiet & rest . And relief from pain and nerves and muscles jumping and going crazy…
      And the enema thing, well it sounds awful. I have had a few and bout cramped to death. Only thiing I can handle is the tea that helps you go, or that other stuff I told you about, the powder/salts that you mix and drink.Miramax. that’s the name of it. It even helps my mom, she had colon cancer and has to be Very careful because she gets constipated to the point that they cant even get an enema in her and most things cramp her , like me, to tears. I found a homeopathic tea called Gentle Movement? Or something like that. It really works good, no cramping.
      Oh God, I have gone on and on to you. I am so sorry. I will hush now and try to go to sleep. I hope you are comfortable.Glancing back over this I see much of it sounds like a crazy person wrote it. Well that’s how I feel tonight. Crazy, hot, sick and quiet crazy.
      Good night my friend, thinking of you always….🌸🌸🌸🌸💕
      I agree with PrincesMerde, scream, get a pillow and scream !!!

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  6. Sorry I have been away for a couple of days. Just not feeling up to reading much or replying. Sinus and ear infection, you lnow, sore throat and even hotter than usual. I know it sounds really stupid of me but I honestly don’t lnow if I can stand being hot for much longer. Its not just the 100 degree weather , it’s me inside ,I am always hot , no flashes, not hormones, just hot ? And I and always wet or damp from sweating.And to beat it all, my body temp is always lower than normal.. But I am so hot!!!!! I know this sounds ridiculous to be so miserable from being hot, but I am.I sound insensitive to others because they have much more serious problems than being hot. And I do too. But II feel like I’m going crazy !!!
    And last night our air conditioner decided to go out. The land Lord said it might be next Wednesday before they can get one and put it in. AND IM HOT.!!! Even with it working and on I’m still sweating every time I move, now No air conditioning at all. No I can’t do that. Not at 100degrees everyday.
    So we are at my mother in laws, thank God her house hasn’t sold yet, because we surely couldn’t afford a hotel room, especially not for that long, not even for a day really. But anyway we are here and I told Joey that I had to have internet, above all internet. And he said, “oh yeah, so you can talk to your friend in Scotland. “, And as soon as we got here he found the pass word for me and got me connected. I told him I could talk to you without it, but he said I might need it If I ran out of data on MY phone and tablet because I used so much at moms. True. I used a lot !!!!
    Anyway, sorry to rant to you when you were dealing with much more than I am. But I just couldn’t help it.
    I wish so much that you could have some peace and quiet & rest . And relief from pain and nerves and muscles jumping and going crazy…
    And the enema thing, well it sounds awful. I have had a few and bout cramped to death. Only thiing I can handle is the tea that helps you go, or that other stuff I told you about, the powder/salts that you mix and drink.Miramax. that’s the name of it. It even helps my mom, she had colon cancer and has to be Very careful because she gets constipated to the point that they cant even get an enema in her and most things cramp her , like me, to tears. I found a homeopathic tea called Gentle Movement? Or something like that. It really works good, no cramping.
    Oh God, I have gone on and on to you. I am so sorry. I will hush now and try to go to sleep. I hope you are comfortable.Glancing back over this I see much of it sounds like a crazy person wrote it. Well that’s how I feel tonight. Crazy, hot, sick and quiet crazy.
    Good night my friend, thinking of you always….🌸🌸🌸🌸💕

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    • I’m so sorry that you are feeling like this, as it’s not one of those things that I can really help you with, and trust me, it’s something that I wish I could do. I am sure you have tried all the things that come to mind, like lying in a cool bath, or naked on your bed and misting yourself with water, so it evaporates the heat, or just sitting with your hands in cold water. (I mention them, just in case, there is one that you haven’t.)

      The personal impact that these things have on us is almost impossible for others to understand. We all find our own personal hell through our bodies and the real bummer is, they are personal. You are not a crazy person, just one in turmoil, so forget about that issue for a start, as it doesn’t exist.

      My insides have managed to defeat not just me, but doctors and hospital consultants, I don’t think there is a medication that hasn’t been tried. The enema’s, are the final attempt to getting them in line, as when the mechanics have gone, gaining any form of control is hard. So far out of three attempts only one has worked, but it did work, we just need to get the timings right.

      Don’t worry about leaving long comments, if you don’t have the air time, or just your own personal energy time, just say hello by leaving a like. That’s enough to let me know you are there.

      Take care (((Hugs)))

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  7. Hi ! Yes I miss daily talks too, but I have been in a cloud, not the good kind the fogged up kind. Where you have a hard time thi king let alone talking. Well look who I telling about mental fog ! You have the worst kind and still manage to get your Twitter and comments out. I just kind of sit or lay and zone out. You know like you were talking about a couple of years ago. The thing it seems only teenagers can do. I think some call it vegging out ! Haha My daughter used to be an expert at it !! And now she narly has time to take a shower. But somehow she manages. I think she takes a shower in the AM and a bath in the PM. She is so stressed and funny at the same time. We always told her she should be a stand up comedies. She really has a good straight face about saying something funny and never cracking a smile ! But she does laugh. She says she .laughs more when we talk or are together
    than any other time. I think we are taking the boys to see “Secret Life of Pets” tomorrow. She is married to an idiot !!!! A big fat conceited self centered jerk ! Oh yeah,,,I do not like him. They have been together 17yrs… 17 miserable years, for her and us. Oh well , no one ever said life would be easy.
    Sorry, ranting again.
    I haven’t talked much, but I still read your post, some nights I have to go back and read them again because I’m so “fog headed ” !!
    In other words I’m always here and if you need or want to talk or rant or whatever……btw, how is your daughter?? I can’t get straight if she lives here in the US or back in the UK, Scotland.
    And I am feeling better, but still so hot and sweat so much. I never go out unless it is really necessary ! 95 to 100. degrees every day. I really don’t like summer. Especially in the South. I noticed Aberdeen is on the coast. Is there a beach?
    Well the big question is,,,,how are you today? I sure hope you feel better. I know it’s impossible for you to feel good, but at least better.
    I feel for you and you anxiety about things like carers and exams and Naples. I am ridden with anxiety and I don’t even have the problems you have. But I’m sti l anxious, nearly all the time. I try So hard to hide it….so I will cleave you for now and hope for peaceful restful days and nights. ((((((((((hug)))))))) Your friend, Brenda🌻🌻

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    • I was wondering where you had gone. Sorry to hear that your having such a tough time because of the heat. I count myself very luck to live in a cooler part of the world as I know that the heat causes me all sorts of problems as well. Brain fog is no fun as you really don’t know what to do with yourself. So take it easy, there is no hurry for you to do anything, it will lift and then you can catch up with whatever you feel you’re not managing to do now.

      Yes, Aberdeen does have a beach, in fact, it has miles and miles of golden sand and I loved being there as a kid. I was lucky enough to spend the summer of 76, the hottest summer I remember, working at the beach first in a cafe, then in the bingo hall. There was no better place to end your day as it’s starting to cool than the beach. Something I missed living here in Glasgow, but it has it good points as well.

      I hope today finds you feeling that bit better (((Hugs)))

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      • Oh so happy you got to spend time at the beach. What is the temp at that beach in the summer? Just curious as to whether its as hot as here. I’m thinking it probably isn’t. I’m actually missing Kentucky now as Its temps are generally 10+ degrees cooler than here. Sick of 95 to 100 degree days and the humidity is so bad. But can’t change the weather. I sure would love to change where I live !
        Sorry again that I’ve not been around , and if you ever want to talk my email is . I get text notifications every time you tweet, so you can send me a msg that way too.

        Think I will try to sleep early tonight since the past 3 nights I didn’t sleep much because of being so hot. And that’s with the air conditioning down to 72 at night. Good nite and have a peaceful evening and night 👋💤🌛Lots of love always !

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      • In the summer of 76 the beach hit the high 80’s low 90’s, but it far more normal for it to be in the 60’s. Scotland isn’t good at really high temps, which I am really glad about.

        I have edited your message as I didn’t want to leave your email address open to everyone. I hope that you don’t have to bear those temperatures for too long, I quite honestly couldn’t take it. Get some rest as I know I would be totally drained in minutes if I were there, I’d probably spend the whole summer in bed, or sitting under a cool shower. 🙂

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