Draining daily

The day that you reach out and you ask for help, the day when you tell the world that you are no longer coping alone, isn’t the day where life gets easier, it’s the day when life is turned on its head and will never be the same again. What I wanted, was peace and quiet. Days, where I didn’t have to think or do anything, other than sit here and let life happen. It hasn’t turned out that way at all. I know this is only the start of week two, but I’m already exhausted by the whole routine. It didn’t take any brain power, to know that last week, was going to be spent teaching (my new carer) Laura, just what was needed and how I would like it done. So exhaustion was going to happen, but this is week two and I’m still exhausted. Admittedly, Monday wasn’t Laura’s fault, but it is also the perfect example of how my days appear and feel.

Monday, Wednesday, and Friday mornings are always dominated by the fact that the district nurses are here. My mornings are always the same, a rush to try and get all my Twitter stuff done before they arrive. I have, in fact, become quite good at it. My timings and routine from when I wake to their arrival is tight, but by getting everything out of the way before they are here, it means that once I’ve had my enema and gone through the results, I can relax and recover over the rest of the day. All that pushing myself around the house in my wheelchair, to just answer the door is exhausting, but then into the bedroom to undress, have my enema and chat while we wait for it to work, then off to the bathroom, where once safely on the loo, they leave me alone, letting themselves out of the house. Sometimes, I can be there quite a while, at others, it’s not too bad, but then I have to dress again, tidy up all their bits and pieces and lock the house up again, as they can’t do anything other than leave the storm doors open. That level of activity, well it’s draining and I thought having someone here to make lunch, would mean I could relax more, but that’s not the reality. It feels as though no sooner have I settled myself again, than I am once more back in my wheelchair and active again.

It doesn’t take much brain power to work out, that few meals can be prepared and cooked in half an hour, well other than ones that go ping and generally taste terrible. So before Laura arrives, I have to prepare and sometimes put in the oven whatever I want her to finish off for my lunch. During her half hour here, she also puts together my supper and sorts out my psyllium pancake, so once she is here, she is kept busy.

As I said, Monday was an extended version and total madness for me. The nurses were late, very late. Instead of 10am, it was 11:15am when for the first time that day, the intercom buzzer rang out. Of course, I thought it was the nurse, but it wasn’t, it was the postman, I let him in and had just returned to the living room when the doorbell rang. He had a parcel for me, so once more I had to head for the door. With the parcel in hand, I went into the kitchen to start on lunch and I had just put the potatoes on and returned to the living room, when bang on 11:30 am the doorbell rang, this time it was Laura. I showed her into the kitchen and I had just explained what I wanted for lunch when the buzzer rang again. This time it was the nurses, more than an hour and a half late. Somehow I had to go through that whole process. The undressing, the enema, the whole embarrassing process with three relative strangers in my home, and be ready for lunch to be served at 12:00pm. The enema was just in when the sound of the buzzer was heard again at 11:51am. This time one of the nurses answered it, it was a delivery man with another parcel for me.

12:01pm and suddenly, I had silence. The nurses had gone, the parcels where stacked in the kitchen and Laura had left my lunch going cold in the living room, while I sat on the loo, exhausted, and I hadn’t got as far as dressing and eating. So much for relaxation, so much for help, I felt deserted, totally deserted and snowballed by life. It was no one’s fault, just coincidence, but, I felt totally drained and I was wishing that I had never asked for help. I know it was a one off, well at least I hope it was, but somehow it felt like it was the perfect example of how I feel all too often. To everyone else’s, I’m cared for and my life must appear quiet and straight forward, but to me, I do nothing that is for me, it’s always for routine, governed totally by timings and events I have no control over. From the moment that the alarm clock demands that I get out of bed, to the point it tells me that I must go to bed and sleep again, otherwise, I won’t get enough sleep to cope with the next day, my life is governed by time and others. Right now, I feel as though I’m drowning in help. I know it’s all going to settle down, that it’s all going to be worth it and life will feel normal and far better than it was, but right now, I’m drowning.

Door bells and buzzers that have to be answered, not just for people who are coming to see me, but all too often there is no one there or it’s for another flat number. Every time I have to move, for others or for me, it’s draining and since I asked for help, I don’t feel as though I have sat still for any longer than a few minutes. With every extra piece of help that is added, I’m still for just that bit less time than I was. My initial belief that help would equal more energy left for me, just hasn’t worked out that way at all. I am learning to dread the very sound of that buzzer, as no matter why it’s been rung, it’s always going to steal what little energy I have. Is it any surprise that I feel as though I drowning, as though I’m struggling just to stay awake, and doubting that the logic that brought me to this point, was logic at all.


Please read my blog from 2 years ago today – 03/11/2014 – A new fururefurure

I have always believed in the saying that “The first step of any journey is always the hardest”, it’s taken me years to realise just how wrong that statement is, the first step may be hard, but you can be sure there will be many as hard and some even harder along the way. It doesn’t matter how many……