Time rolls on

Slowing down was supposed to give me more time to rest, time to recover and to possibly feel, just a little like myself. Unfortunately, whatever is going on with my sleep patterns, is causing me to be so tired, that I don’t feel any better at all. The last few days have passed in a dozy haze, with me fighting to stay not so much awake, as in contact with reality. My mornings have been spent tweeting, my afternoons, playing card games, the simplest ones I can find as the complex ones, are just too much for me. I have been switching around between three different games of patience or solitaire as some call it. Which one depends on just one thing, can my brain stay focused on what I’m doing. For weeks now, I have been blaming it all on just my diminishing brain, but I had to admit the other day, that sleep has to be playing a huge part. I can’t remember now when I last had a full nights sleep. Every single one is interspersed with sessions of finding myself sat on the edge of the bed, fighting to wake up. Last night, I had my third incident of waking up somewhere I shouldn’t have been asleep. This time, I hadn’t even made it out of the bedroom, just as far as sitting in my chair and taking the breaks off, but I had gone nowhere, other than back to sleep.

When I am awake, I am missing more and more things, things I believe wholeheartedly that I have done, or seen, but on investigation, I haven’t done at all. It sometimes feels as though I am living in two worlds, the one that is in my head, which says everything is working perfectly and the other that says I am missing out huge chunks of reality. The only explanation I can come up with is that I am asleep, and dreaming in real-time, whatever it is I was supposed to be doing. Whatever is going on, all I know is that sleep is taking over my life and I quite simply can’t get enough of it.

I don’t know if it is going to help or not, but next week, I will be changing carer agencies, and it will also be the first time, that I am going to have someone other than Adam, here with me at lunchtime. The new agency is going to bring my first carer here on Friday morning to meet me before they even start. They have promised me a sole carer for the first couple of weeks, then they will interduce a second one, so they can switch about. That alone is so different from the first agency, this one seems to really care that I am happy with the people who will be helping me and that they are happy with me. The agency I have been with to date, couldn’t care less. They just care about making sure that someone, anyone, is here to cover the slot. They don’t see me as a person or cared about my feelings at all.

To start with, I have asked them to only be here three days a week at lunchtime, plus the two showers sessions I already have. I know I initially said that I was going to have them here ever lunchtime, but as it got closer, I became scared. Scared that I was loosing too much independence too quickly. I can have a cold lunch twice a week, or if Adam wants to come down on one or both of those days great, but I need to not have strangers here every day, not yet. Handing over your life to others is hard, no matter how much you need their help, if you’re not ready, it’s not going to help, it’s going to rub you up the wrong way. I need to take baby steps and when I am ready, I will ask for them to be here more. If my life keeps spiraling down as it is, I doubt that it will be long before I ask for them to be here to help me manage other things as well.

Being ill is hard work. It’s incredibly hard work and I know that sounds mad, but the worse that my health gets, the worse my ability to just deal with life seems to get as well. At times, the silliest things seem to get to you. It doesn’t happen often, but there are days when I look at all my meds, and I just want to throw then out the window, not into the bin, but out the window. If I put them in the bin, Adam would just take them out again. We have this amazingly boggy back garden and if at this time of the year, I launched them out of the kitchen window, they would land in the mud and would become totally unusable. For some reason, those tablets, not my wheelchair, my nappies or any of the other stuff that fills my home, all those tablets, are the symbol of everything that is wrong with me. They screw up my day, my nights and my life, but I couldn’t live without them. I resent the time that I spend stuck breathing through my nebuliser, the time I have to spend trying to swallow tablets, but instead just getting them stuck in my throat. They fill up cupboards and draws, they are everywhere that I look, because they have to be everywhere, that I might be. There are days when I feel like all my life is, one long series of drugs.

I know that I don’t have a right to complain, as there are so many people out there who have to pay for those drugs and can’t afford them. I get them all free and if I didn’t have them, my life would be hell, but still, at times, I resent them. When did I become such an ungrateful bitch? I’m not ungrateful, I am so grateful that I have them, but is it so surprising that I just want to be free of them. God knows how I would manage them all if I wasn’t housebound. It was bad enough when I was still working, but back then, I was on just a fraction of what I am now. As I become less and less able to remember, less and less able to even recognise them from each other, the more confused I become, the more I don’t want to take them. The chemist doesn’t help as almost every new prescription brings a new name I don’t know on a new box I’ve never seen before. Not because my drugs have changed, but because the chemist has sent the least expensive version they can buy. I’m so glad that Adam deals with them now, as I can’t make any sense of them any longer.

They are just an element, one that is now out of my hands, but still somehow makes my life harder. Being ill is hard work, far harder than you can ever imagine until you are living right here in the middle of it. It doesn’t matter if it’s my meds, having a shower, eating, or just trying to sleep, every element is hard work, so why am I still shocked by the fact I’m so tired?


Please read my blog from 2 years ago today – 19/10/2014 – Time to stop

I have just spent half an hour being drive mad by Twitter, there is some sort of problem with there security shut down on accounts, it keeps telling me my account has been hacked and I need to change my password, in seconds it does it again. Of course, that means you have to wait for the email…..

18 thoughts on “Time rolls on

  1. You’re quite right that being ill is hard work. I empathize with so much of what you’ve written. It’s very fortunate that you get your medications for free; I had to stop taking some of mine because I can’t afford them and I’m paying the physical cost. But I understand how much you’d like to chuck them all out the window. I wish I could make you feel better but all I can offer you are my prayers and affection.


    • I can’t imagine having to make those kind of decisions. In the UK, just because it’s the way it’s always been, we take it for granted, that they are either free, or have minimal charge for those in work. I listen to people from all around the world but all I can do is offer my words, for what they are worth. All the empathy in the world, doesn’t remove pain, but I’m so sorry that you have to make those decisions. To me, it doesn’t matter who we are, or where we are, those who truly need them, should get them for free and we should get a free set every now and then, just to chuck out the window. ☺

      Liked by 2 people

  2. I love that you think you are an ungrateful bitch. What? No, just having to renegotiate the many levels of acceptance. This is another. Sounds like you need the drugs. They make you better? I like to write on my boxes so I’m always aware of what they are. Wait until I tell you about my definition of my Monday Night Hot Date Night………yeah. It’s not.

    Liked by 1 person

  3. I once got so tired taking all the pain killers and my mental health medication, i was pissed off with everthing and somehow i decided it was the medications fault! i went downhill especially in pain and depression very quickly and it wasn’t pretty. Naturally being very stubborn i’d not told my dr’s. Of course in the end i did tell them and after a few tweaks i was back to taking everthing. Pondering on it i realised that my tablets were the only part of my conditions i had control over, i guess i had a little rebellion against my body and brain, i did it again a few years later and the same outcome, begging my mum from stopping me killing myself, which worked because i’m writing to you. I haven’t stopped taking them since. My point? oh yes, it was the thing i could control, i could stop taking them and punish my body for failing me.


    • I used to stop the odd one here and there, convinced that they weren’t doing anything. Within hours, I knew what they did and that they worked, and I would take them again. I guess that it is something to do with control. Our bodies have taken over our lives and we can’t do a damned thing about it. I guess we have the right to get angry from time to time 😌


  4. I hear you about the pills and once a week I have to put mine in order and call in what I need. One of my Anti-Rejection Drugs alone is $300.00 since I am in the Medicare Gap. Money is bad right now and I need to prioritize.


  5. Adjusting to a caretaker takes time. The loss of independence stares you in the face when you have someone in the house with you. Also, I lost my privacy and quiet time. On the other hand, as you learn to let the caretaker do tasks around the house, you will find it easier to take care of you. It has taken me five years to get accustomed to a caretaker (and I am blessed with a wonderful woman at this time), but I am very grateful to have someone here.


  6. I can completely understand where you are coming from. I have Ulcerative Colitis it is so easy to fall sick with the common cold as well as constantly feel tired. I don’t have a full time job, but even with university and part-time work, it is still quite demanding. It’s hard to open up about these diseases with employers as well, with inflammatory bowel disease, you are either a) sick, b) tired or c) flared up and constantly at the bathroom. So it’s pretty easy to be limited and not perform to your maximum potential. As basic as it sounds, I have a little jar of motivational sayings and phrases to keep me going at 110% and it does motivate me!
    I can’t imagine what it is like for you, but I can empathize. All the best for the future!!

    Liked by 1 person

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