Living Life, Within the Limits of Chronic Illness

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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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A Pandemic Thank You

To those of you who have missed out on social events.

To those who have missed concerts, festivals etc.

To those people who have been forced to work from home with the kids under their feet.

To the ones who have found being at home difficult on their mental health.

To those of you who have been unable to attend someone’s funeral.

To the people who have been unable to visit or receive visits from friends and family while in hospital or care homes.

To those who have followed the guidance and stayed at home, washed their hands, worn a mask and kept their distance more than ever this year.

To the ones who have been working on the front line in key services throughout the pandemic.

To the people who have helped to protect the vulnerable and saved lives.

THANK YOU

You have done, and are continuing to do an amazing job. I can only imagine how hard this must be for you. I know how difficult I found being at home 24/7 when I first became housebound, and I had the advantage in that most of the time I didn’t feel well enough to leave the house; there wasn’t really a choice but to stay home when so unwell. So I can only imagine what it must be like to be healthy, or at least well enough to usually spend a lot of time out of the house, and have the stay at home rules imposed on you.

Even I have found it harder than I expected to; like I said I’m predominantly housebound due to my conditions. For years I have only left the house for medical appointments and if I’m lucky a short trip out once a week (usually to another family member’s sofa for an hour or so just for a change of scenery) so I didn’t expect the rules to have too much of an effect on me. And to be fair, compared with what you have had to give up this year, I’ve had an easy ride. But I have found being home, stuck inside these same four walls, that tiny little bit more than usual a bit difficult and at times it has gotten me down, I’ve even found myself missing the trips to the hospital (Something I never thought I’d say!). You have probably found it a whole lot harder than that.

Which is why I wanted to write this post and say thank you, from the bottom of my heart. I am one of those people you have been protecting by staying at home, keeping your distance, washing your hands and wearing a face covering. You might not be protecting me directly, but by protecting the people I live with you are preventing them from passing the virus on to me, therefore protecting me too. And it means a lot to me, and I’m sure many others, that you have given up so much this year, and continue to do so.

I have seen so much focus on the few who aren’t following the rules; gathering in their masses, not social distancing etc. and yet very little said about the majority like you who are following the guidance and protecting so many people, potentially saving their lives, by doing so.

I for one think you are amazing and doing a brilliant job, and I am sure I’m not alone in thinking this and being grateful for everything you are doing. I don’t doubt many of you are finding this a very difficult time, and by now becoming immensely frustrated by the restrictions imposed upon your life but I hope that by reading this post, and hearing the words Thank You you feel at least a tiny bit of pride in what you are doing, because you should be proud of what you’re doing, proud of the sacrifices you are making in order to protect others in society. I, and many others are immensely grateful to each and every one of you, Thank You.

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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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Isolation

As I write this I haven’t properly been out for over five months. There have been two short trips “out” in the car with my Dad, trips in which I haven’t left the car at all, but have still got a change of scenery.

In those five months I have been blessed to have a few visits from a friend, and some family members – all socially distanced and as government guidance allowed. And of course I’ve been lucky in that I live with my parents and sister, although for almost three months my Mum was living with another relative caring for them, so it was just me, my Dad and sister.

Despite this, the last few months have felt quite isolating. As the world began to return to some semblance of normal, with restaurants reopening, people returning to work, non-essential shops reopening etc. mine has remained the same. I mean it’s not exactly unusual for me to go for weeks on end without leaving the house, although in the year up to March you’d be hard pressed to find more than two weeks where I hadn’t had to leave the house for some medical appointment or another! But somehow this feels different.

Perhaps it’s because everyone was in a similar boat, so to speak, earlier this year during lockdown. But now watching everyone slowly return to something akin to normal, while I remain where I am, it’s like I’m back to the early days of my chronic illness. I’m being constantly reminded of what I’m missing out on, and in some ways it’s even worse now than it was back then – social media was in its infancy when I first became ill so there wasn’t the constant reminders on there, but also because its been a national experience the radio stations and news programmes have been absolutely full of pieces about life returning to normal, places reopening etc. and asking what people are most looking forward to doing again.

I listen to the responses and just keep thinking “I can’t do that” or “That would break me”. Quite honestly the thing I’m most looking forward to as things return to “normal” is the return of medical appointments, treatment, and yes even tests. I never thought that would be something that I would be writing, but since lockdown so much of my treatment, and the exploration of what could be causing some my symptoms, has all been put on hold indefinitely. And while it’s not a life or death situation (that I know of, and I certainly hope it isn’t!) there’s something about just being left to cope with everything on your own. I know I did for years, and I know many others also do the same. But having finally found a doctor who wants to work out exactly what is going on and is actually taking an interest in trying to figure it out and find ways to help, it has been very disheartening to just be left waiting for rescheduled appointments to appear in the post (I’m still waiting for them to appear).

I also know that the hospitals and everything routine in the medical world will probably be one of the last things to return to normal; they still need to be prepared for another spike in cases of COVID-19, but at the same time I am also acutely aware that other health conditions (whether diagnosed or not) haven’t just stopped because there’s a pandemic. As nice as it would be to be able to say that all other health conditions are on hold while the world deals with the pandemic, this isn’t the case. Yet this is essentially what the hospitals are having to do.

Sure there are other things I’d love to get back to doing, the things that I was managing before lockdown that got me out of the house, but having started a treatment that suppresses my immune system I’m actually rather nervous about resuming “normal life”, in part because I don’t know how much it is suppressing my immune system, and how vulnerable it is leaving me to viruses and infections. I didn’t get the chance to figure that out before Covid-19 made it’s appearance on the scene. So for now I’m extra cautious about things.

I’m sure I’m not the only person out there feeling this way, but it does feel like I’m one of a minority. And as a result I feel isolated. I see what everyone else is doing, I hear what everyone else is talking about, but I don’t feel like I can take part. I’m just not ready yet, and for some things, unless there is a miracle cure, I never will be.

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