Living Life, Within the Limits of Chronic Illness

Category: Essential Living Aids Page 1 of 2

The Importance of Silence

Silence is an important part of my daily life, to rest properly I need quiet. But I also need silence when I’m concentrating on things, particularly if whatever I’m doing requires a lot of concentration.

I recently had a phone appointment with one of the hospitals I’m under the care of, and right in the middle of it someone came into the room to tell me something. Rather than stopping what they were saying when they saw I was on the phone, they continued telling me whatever it was they wanted to say and as a result I missed an entire chunk of the conversation with the hospital. As it was happening I was trying so hard to concentrate on what was being said on the phone, as well as in the room, and I thought I would manage it, but literally seconds later it was blank. Not only did I blank what the hospital had been saying during that time when someone else was talking to me, but I also couldn’t tell you what the person in the room said to me either; I had some vague idea of what it was about but not the specifics. It’s as if my brain just shut down moments after trying so hard to take in both conversations!

At the time of this I was infuriated. Thankfully I did ask the hospital if they could send me a brief summary of the most important things discussed on the phone so that if I’d missed something really important it would be in there, and they were happy to accommodate that request. But that’s not the point.

However, it wasn’t until a few hours later that I remembered that not everyone has the difficulties I have in concentrating, or managing or following conversations on the phone. To this person, being able to take in a quick sentence about something else from someone else while they were on the phone was actually perfectly normal. But for me it is seemingly impossible.

So, like everything else in my life I thought I would blog about it, share my experience and the things I have to do to have some hope of following a conversation on the phone (and remembering it!) but also just generally being able to concentrate when doing things like watching TV, reading a book, or even typing this blog post!

I honestly don’t know how to properly explain what happens if I don’t do certain things in silence, but basically its as though if there’s more than one thing going on, competing for my attention, my brain shuts down and I can’t concentrate on any of the things going on.

So however troublesome it might be I have to have silence when I’m on the phone, or doing anything which requires concentration. Some examples include:

When the phone rings:

    • If I’ve got the TV on, I pause or mute it. Music or radio? Same thing.
    • If I’m out in the garden and it’s breezy, or other people are talking in the background, I have to go inside and find somewhere quieter.
    • If I’m in the house and people are talking in the same room as me, no matter how quietly, I have to go to a different room.

When I’m trying to concentrate:

    • If the TV is on, I’ll mute it or turn it off – it all depends on what I’m doing and how long it will take.
    • If the radio is on or there’s music playing, it usually has to go off or on a really good day providing it’s the only background noise and what I’m doing doesn’t require too much concentration it can stay on quietly (and by quietly I mean very quietly – my parents say they can’t hear it properly at the volume I can tolerate it on at while concentrating)
    • If I’m in the house and people are talking in the same room as me while I’m trying to do something which requires quite a bit of concentration, like reading a book, no matter how quietly they are talking, I have to go to a different room or stop what I’m doing until it is quiet again.

The truth is that when it comes to activities other than talking on the phone, it all depends on the level of concentration required and how I am that day as to whether complete silence is needed or whether I can cope with a little bit of background noise. For example most days when I am able to do some knitting I can manage to knit while the TV is on, or there is music in the background; providing it isn’t a complex pattern! However, I can only ever read a book when it’s quiet and there is no noise in the background except the hum of the fish filter or heating etc. anything beyond that and my concentration just vanishes so I have to put the book down.

Whenever someone visits, they’ll usually find I turn off the TV, radio or music, if it’s on, despite them saying it’s fine to leave it on. This is because my brain can’t filter out the conversation from the background noise, believe me I have tried. For short conversations I can usually cope, but anything longer than 30 minutes and my ability to concentrate on what is being said vanishes and not only am I unable to follow what is being said and join in the conversation, but it also uses a lot more energy! So if I know someone will be here longer than that I’ll opt to turn off anything in the background so I can participate in the conversation and pace myself better.

On a similar topic the other thing I can find difficult is multiple conversations going on within a small space; for example if we had say two members of my family come over for a cuppa and one is having a conversation about one subject with my parents and the other is talking to me about something entirely different, after a short time I struggle to concentrate and keep track of what is being said to me and think of a response because I can no longer block out the sound of the other conversation and my brain essentially tries to follow both at once and fails miserably! Usually in these situations I just quietly withdraw from the conversation entirely, not because I want to, but because I can’t manage to join in any longer.

I’m sure there are many other things I now do instinctively in order to be able to concentrate on things, stuff which most people wouldn’t think was necessary in order to be able to complete basic tasks. But alas for me silence is necessary, some days it just makes it easier to pace myself; it allows me to do that little bit more than if I had background noise to cope with as well, other days it is necessary if I am to do something which requires concentration. However, for some reason, I assume because it requires so much more concentration but I don’t actually know, I always need silence when I am on the phone if I am to be able to follow the conversation and remember what is said.

 

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Third Party Authority with Banks

For years I have struggled to manage my finances for myself; by that I don’t mean keep track of spending etc. I mean the actual physical side of banking, you know how someone gives you a cheque for your birthday and you have to go into your bank branch to pay it in? (because in some, if not all banks now no one else can pay it in for you) How you need some cash to pay for things/pay people back for things but are physically unable to get to an ATM? That’s the side of my finances that has been a struggle.

It wasn’t until recently that I learned banks actually offer a service to help you with this kind of thing. I know I became housebound as a kid, just before I hit my teens, but becoming housebound, chronically ill or disabled doesn’t come with a handbook which tells you everything that’s there to help you. (Or at least if it does I’ve missed out on that particular read!) It’s only when someone suggested it for an elderly relative of mine that it occurred to me to at the very least look into it, if not get it sorted for myself too; if I could that is.

Banks, in the UK at least, offer something known as Third Party Authority. Which allows you to give a person you trust access to your account; you can pick which services they are allowed to manage when you set it up; usually the options are a debit card for the account, telephone banking and online banking. Meaning that you no longer have to struggle to make that phone call, or go into branch yourself to deal with any financial matters that arise, instead the person you have delegated authority to can do so for you.

As I say it’s something I didn’t realise existed, something which would have been handy to have set up for myself years ago. But it’s only during this strange year of 2020 that I have actually done it. I don’t know whether it varies between banks, but I had the choice to set it up via phone, video call (if I had the mobile app) or in branch. Despite the pandemic I opted to do so in branch; phone calls are not my strong point, particularly when the chances are it would take a while to get through, so I figured I might as well use a similar amount of energy and go into the branch, getting some fresh air on the way!

I had to wait a little while when I got to the bank as it was quite busy, and with COVID-secure measures in place they can only have a certain number of people in the branch. But it probably wasn’t much longer than 30 minutes; they took my mobile number and phoned me just before they were ready for me meaning we could go have a wander round or cup of coffee while we waited for a member of staff to become available to help us.

Once in there, it took all of fifteen, maybe twenty minutes to get it all set up. Okay, so by “all set up” I mean all the forms filled out and details taken; the member of staff did all the form filling, we just had to check it all over before signing them. It then takes a few days to go through their accessibility team and the appropriate details to be sent to the person with delegated authority (by that I mean login details for online banking or a debit card and pin number, depending on which services you’ve opted to allow).

But from there on things should be a little easier being housebound. And anything that makes life even a tiny bit easier when you’re unwell is a good thing.

I wish I’d known about this years ago. It would have made life so much easier! That’s why I thought I’d blog about it; if this post makes just one person aware of this option then it’ll have been worth writing. Although perhaps I’m unique in not having known about this prior to recently? Perhaps there’s some sort of search I should have done when I became housebound which would have highlighted this as an option for someone who has become housebound? Anyway, hindsight is a wonderful thing and maybe now I’ll go looking for what other help is available and you never know I might just blog about something else I find….watch this space!

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What is a low energy activity?

If you’d have asked me that 10 years ago  I’d probably have said watching TV, having a shower, reading a book, doing homework, playing on the PlayStation. I’d also have said high energy activities were walking to school, going on the dance mat, walking into town, playing sports etc.

 

But I’d have been wrong; or at least I’d be wrong about what a low or high energy activity is for a person with chronic illness.

 

You see for someone with chronic illness even simple tasks can be classed as a high energy activity. Walking from one room to another. Sitting up for ‘long’ periods (sometimes a long period can be as short as 5 minutes). Showering. Dressing. Watching TV. Having a conversation. Using a computer. Drawing, writing, painting. Studying. Making a cup of tea. Making a quick snack. Knitting. And so much more.

 

Therefore low energy activities are hard to come by; listening to music, colouring in a colouring book, watching a DVD you’ve seen a thousand times before, texting a friend, lying out in the sunshine, listening to a TV show but not watching it. It’s hard to think of much else. If you have any suggestions please leave a comment!

 

This makes managing energy levels incredibly challenging; when most activities can be classed as requiring high energy it can be difficult to fill the day. Although it’s possible to do more than one high energy activity a day, in fact it’s often necessary to do so, it requires significant rest periods between them.

 

And by rest periods I mean complete rest. No stimulation. Deep, meditative breathing. Lying down but not going to sleep. Perhaps listening to some gentle music.

Managing a life with such limited energy while carrying out simple everyday tasks, let alone having some fun and achieving what some people wouldn’t even think about, is incredibly difficult. But for many of us it’s necessary. I hope by writing this it helps people understand just how difficult it can be to manage activity levels with such limited energy.

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For Anyone Who Uses The Family Bathroom…

…I feel I should explain the notice above the lock on the door.

It was an idea that came about from a friend a few weeks ago, after many close calls of me almost falling and the odd false alarm where my family thought they’d heard me calling for help but I’d been perfectly all right.

You see one night when I wasn’t particularly steady on my feet (well less steady than usual, that is) I decided, since I was in need of one, I’d have a shower. To be on the safe side I told my family I wouldn’t lock the door, ‘just in case’.

At this point I should point out the lock on the bathroom door is one of those which, if necessary, can be unlocked from the outside for such eventualities but not locking it means there’s less delay.

Anyway I went in the bathroom, got in the shower and a few minutes later heard a banging noise over the sound of the shower. I opened the shower door to find my Mum trying to open the locked bathroom door (thinking it was unlocked like I’d said it would be) because she thought I’d called for help. Dad was trying to find a coin or screwdriver to undo the lock with when I unlocked it, saying I hadn’t called and was fine. But I felt guilty for sparking such a panic, and for saying I’d leave the door unlocked but automatically locking it when I got in the bathroom.

That night I told the M.E. community on social media about this and one friend suggested putting a notice on the door saying ‘Do Not Lock’. Obviously being the only bathroom in the house we thought this might be a little non-specific and people would perhaps think they weren’t allowed to lock the door either. However the idea was in the right place and so the laminated piece of paper, white-tacked to the bathroom door was born.

The sign above the lock on the bathroom door

It reads “CLARE DO NOT LOCK WHEN SHOWERING OR DRESSING!!” It was made that specific so in times of very poor cognitive function I know I can lock the door at other times. I’m only really in danger of falling or getting into difficulty when showering or getting dressed, and I always make sure everyone in the house knows I’m in the bathroom at those times. It’s slightly odd announcing to the house that I’m going to get dressed or have a shower but right now it’s necessary; it also means they’re on alert for me calling should I find I can’t manage myself or get into difficulty.

The best bit about this notice is IT WORKS. Since putting it up there have been a number of times I’ve gone in the bathroom to get dressed or have a shower and I’ve automatically locked the door, then read the notice and unlocked it ‘just in case’. Fortunately there haven’t been any times when I’ve had to call for help because of a fall, however I do frequently call for help with drying the lower half of my legs and getting my trousers on. It’s just one of those things I can’t always manage by myself right now.

As well as explaining the point of this notice to anyone who thinks it slightly odd, I want this post to serve as a thank you to the wonderful person who suggested the idea. And if anyone else has similar problems perhaps this idea could help you too.

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