I dissolved into a total mess. The tears were not running, but pouring and I had no way of stopping them. I think that it was just something that I needed to do, that point had been crossed and everything had become too much. I didn’t just cry for a few minutes, I cried right through the day whenever anyone spoke to me. The district nurse was the first to see just how screwed up and exhausted I really was. It goes to say that I chose not to have the enema, not just because I was whacked but I was also very aware that my body didn’t have a need for it. If this week is anything to go by, I think twice a week is more than enough, which is exactly, if you remember, what I thought before we even started. We all know our own bodies and I probably better than a lot.
Next, it was Adam. Yes, I know he is the last person who deserves my letting rip, but he phoned to say he wasn’t coming home at lunchtime and that triggered the tears. For once, I really needed his help. I quite simply didn’t have it in me, to prepare and ferry my lunch, meds and so on, back and forward. He set off for the house straight away. He hadn’t really had a reason for not coming down the road, just a case of him feeling lazy, so I didn’t feel too bad about saying “I need you”. As normal, he was only home for twenty minutes, but it was long enough for his legs to do the work, instead of my arms. Having a wheelchair doesn’t make things any less exhausting than having to use your legs. If and when I get the electric one, well that will be a different story, something he totally agrees with. He hadn’t been in the door for more than a handful of seconds when my tears and his reassurance flowed, both deeply needed. As time goes on, my need for his love and his arms around me, are growing.
From my previous post, it must have been clear to all that we desperately need to change the way things are done daily. The tears, well they were just the final sign that I’m not coping and that all the change that has happened in the last few weeks, is getting to me, I can’t help but feel the real issue is organisation. My energy levels are being stripped daily because I am being forced into trying to do far more than I can. Yes, all of the people suddenly involved in my life, are here to help, but their impact on me has to be changed. Tonight, we are going to start by clearing out my wardrobe, this will supply me with space for all the inconstancy pads, wipes and so on that keep arriving. That will remove one pressure on me. It might be silly, but I really get embarrassed by the fact that they can be seen, yes, it is only by myself and Adam, but that is bad enough. The nurses left another pack of towels on the living room coffee table earlier and I hadn’t had the energy to move them and hide them. With no space in the wardrobe, they are slowly piling up on top of a lot of junk and I can’t see what is what. This morning, they all fell out onto the floor, more work, more energy being used that I just didn’t have. So tonight, we are going to sort that one, it may sound small, but it’s all the small things that have mounted up.
While we are sorting the wardrobe, we also plan to talk about my meals and see if we can work out menus that I enjoy and Adam can prepare, which might be the difficult bit. Adam isn’t exactly a cordon bleu chef, his cooking skills are somewhat basic, but that’s the food he likes. His idea of a good meal is a fish finger sandwich with salad cream, I wouldn’t even feed that to a dog, but we all have our own likes and dislikes. We need to come up with a mixture of things, either that Adam can prepare and I just take out of the fridge and eat, or he can come home and throw in the oven or microwave, that takes minutes to cook. There is also the issue that has been caused by my latest tablet. The potassium bicarbonate tablets, have to be dissolved and taken with or after food. The very first ones showed me they have to be with, as I landed up with heartburn. The first problem is the glass of cold water. We have removed the back and forward to the sink and cupboard issue, by putting a bottle of water in the fridge and a glass that will now live on the counter, but that doesn’t get it into the living room where I eat. Transporting a glass and my food in my wheelchair is just as hard as it sounds. To get around it yesterday, I prepared a snack to follow my meal, but that’s still more work and more energy, not mention more calories that I don’t need. Nor am I sure that I really want to finish every meal I eat, with cod’s roe and cream cheese, despite the fact I totally love it. Such a tiny thing has turned into such a huge issue. There just has to be a better answer.
For me to live, to feel as well as I can, I must move as little as I can. It is that simple, but achieving it is incredibly hard. None of us know just how much we move around until we are faced with looking at our every action. I used to have it down to a fine art. I used to be able to bunch up every trip that I took, to include as many things as possible, without retracing my steps, unless totally unavoidable. Add an enema, add a new tablet, add answering the doorbell, add letting people in and out, then do it all more than once in any day and all that planning, all that precision leaves more swiftly than you can imagine. Just how do I get it all back, as I want to live again, not spend the hours I’m awake feeling half dead.
Please read my blog from 2 years ago today – 08/07/2014 – Letting go
I lost just over an hour of my morning today and all because of two things, the TV and Adam. It is normal that Adam switches the TV on while I come up here and get settled for the day, but this morning although it all seemed to come on, nothing appeared on the screen other than blank blue. We talked about the possibilities and Adam carried out a couple of checks, but nothing happened, we even….
SUCH A SAD AND PAINFUL POST. I WISH I COULD SAY SOMETHING TO MAKE IT BETTER. AT LEAST YOU HAVE ADAM. I MISS THE HUGS((NOT YOUR PAINFUL ONES)) HUGS AND COMFORTING ARE PRICELESS. YOU DESERVE THEM. YOU DESERVE ADAM. ((HUGS)).
Thank you 🙂
😶Thank you SO much for sharing your journey with all of us. It touches my heart.
I’m a pastor still working part-time past retirement age because 1) I love it and 2) I like to survive with food, meds, a roof, etc.
I would have said that with all my calls upon people, and earlier work as a geriatric chaplain, I understood a bit about your life. My “bit” is smaller than I imagined. The amount of organization you do is astounding. The amount of courage you have is also staggering. You may say it’s just what must be done, but I’ve seen people who just gave up. They passive-aggressively struck out at life,God, and the family they’d taken great joy in by refusing to do anything at all. You don’t do that. You react, you’re angry, you’re scared, but you’ve chosen to live.
Your message today especially spoke to me. I too need incontinence supplies due to two chronic conditions …seldom needed but always worn as insurance. Like you, when the new order arrives my closet and drawers overflow, and I’m embarrassed. Embarrassed by the big purse I need to carry backup supplies, or an extra change of clothes in the car. Just in case. People don’t want to talk about needing extra help, but are so relieved to know they aren’t alone.
Thank you for being who you are, and for your bravery. Blessings to you. 🙏
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Thank you, I don’t always feel brave or courageous, but I’m not ready to give up, that is for sure. Right now, to me, my life feels as though it is in turmoil, but it’s because of what feels such small things, that to say that, feels so silly. I guess that’s part of why I write, as I don’t believe there are many who understand at all, and it’s up to me, to help them do so.
Thank you for reading and thank you for leaving your comment. 🙂
Hello, I am so sorry for the day youve had.I would love to give you a hug.1st.dressing is a waste of energy I found,only dress if strangers are coming.I know it seems like you are not being “normal”but I find it lets me do more that I want to do.2Have you got a door entry phone?Its a boon!3Have you seen the non slip trays that don’t let things fall off,they are good too,and would sit on your lap from kitchen to table.If I sound patronising truely I am not being I’m trying to tell you from my own struggles that I wish someone had told me when I first started on this road.If I have preached to the converted I am sorry,shout at me if you want to.Sending love and a few hugs.God Bless.Nx
Thank you Nancy, I don’t really dress, it’s nothing more than pyjama’s if you like, clothing to keep me warm, not stylish. We do have a door entry phone, but it’s in the hallway, and allows them into the main building so they can come up to our flat. I still have to go back and forwards to that and unlock our flat door, their is no way around either.
I do have a tray, but it has to be strapped to my chair, so that it does slide. It takes more effort to strap it on, than it saves. It was great at first, but as time has gone on, it get’s tougher and tougher to use.
I never object to suggestions that are show caring, which yours does, so don’t feel worried about annoying me, you didn’t 🙂
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Hello. I understand chronic pain and fatigue. For most of my adult life I had to battle that. But you talk of a level I can barely comprehend. But I do understand the frustration, the tears, the verbal lashing out. You may not feel it, but believe me when I say that you are an inspiration through all of this. Your tweets and the honesty of your writing sit in proof of this. I send this with much respect and with every blessing to you. Thank you for being you.
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Thank you 🙂
First, hugs. (((Hugs)))
Second, do you like things such as fig newtons or cheese crackers / peanutbutter crackers that don’t have to be refridgerated that you can put in the living room with you, so that they are within reach if you’re too tired to move but must eat?
Third, does the water have to be cold? If you can tolerate bottled water at room temperature (and I know that some tastes better than others), can you put that and the munchies in the living room, near where you stay, so that you don’t have to move far if you’re wiped out?
I’m sure you’ve thought of all of this, but I wanted to suggest it just to be sure. I’m sorry you’re having a rough time.
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Thank you for caring! I do appreciate your comments, but your right, I have thought of all of this. I find water as abhorrent as the drug it carries, but if its as cold as possible, it seems to carry less flavour. I read about it somewhere and didn’t believe it until I tried it. The colder something is, the less we taste, especially when it comes to sweet tones.
As for food in the living room, well I try not to keep it here if I like it, because I then eat it, something I really weight wise can’t afford to do. but yes, it does make sense, maybe, I could try to find a happy medium, far enough away that I’m not tempted, but close enough to save some energy. That is one to think on 🙂
He friend🙋, This is miserable, I feel so much anger that you have to live this daily. But I know that it is a cycle of life you have to deal with, And you are totally right to make your needs known !!!The having snacks around in the room you are in is a great idea, thanks @”cpod4real”, I also do that. I love baggies for storing chips, crackers, fruit and so on . And when I’m this God awful bone tired, I don’t care if water is cold or not. But it has to have a top on it. My grip isn’t sure anymore so I drop everything. My biggest problem is cold Coke. Thats my weakness. I am so addicted to Coke and Graham crackers at the moment. All which live in a baggies and bottles with tops on them.
Now if I could just stop being so damned hot all the time and my skin would go back to feeling normal instead of raw and this headache leave me, I could go back to my dailey painful tired life.
Oh well,,,,a girl can dream ! Love ya Pamela !! Hold on to what you want. Its your life and you need all the normal you can get.. Don’t be afraid to ask for what you need. Joey always says he cant help if I don’t tell him what I need.
So many people ask me what I do all day – your post illustrates this wonderfully – just coping with the day to day is enough for someone with a disability.
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And oddly, there is never any time left over to get bored. 🙂
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