Living Life, Within the Limits of Chronic Illness

Author: Clare Page 2 of 56

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.


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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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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Please Remember We Are Still Vulnerable

A few weeks ago I wrote a post asking people not to forget their experience of lockdown, (See ‘Please Don’t Forget This Experience‘) as the rules of lockdown changed and began to lift for the majority of people, I wanted people to remember that for some lockdown, being housebound, is their normal way of life and they have no choice in that.

At the time of writing I hadn’t really considered much beyond the grief and pain I was feeling at seeing some of my family and friends posting on social media about making plans to do things once they were allowed. To be honest I hadn’t given a thought to what it would be like for me to go out, because at the time the advice for vulnerable and high risk people didn’t seem to be changing; well there was no mention of them in the news so I assumed, like many others that there was no real change for us, however right or wrong that assumption might seem.

But with the news of shielding coming to an end, with literally everyone being told they can begin to resume some semblance of ‘normal’ life, whatever that might mean, I’ve come to realise that for those of us with chronic illnesses and disabilities, there is more than just the grief I wrote about previously, when seeing everyone return to being out and about, making plans etc.

There is also a sense of anxiety, a sense of unease, even a sense of fear about the idea of leaving the house for those essential reasons, particularly as medical appointments resume. As lock down lifts and the outside world becomes busier, as it returns to some form of ‘normal’, albeit a new normal, there is a sense of danger almost.

For months, those of us with chronic illnesses or underlying health conditions, as the media frequently describe it, have been told we are more vulnerable to the virus, with some of us advised that in addition to being more likely to catch it, we are at high risk of being badly affected by it too.

So is it any wonder that now, as things begin to return to some form of ‘normal’ we are more anxious than most about going out again?

During lockdown the streets were mostly deserted, the majority of people kept their distance and the world was a wary place (going by the photos I saw being posted by others and what friends who were going out for essentials and exercise told me anyway!). But now as restrictions lift and things return to something closer to normal, the streets are busier again, keeping distance from one another doesn’t seem to be quite as important to many people  (that much I can tell just from sitting in my house or garden, let alone the media reports!) and so the risks when we, as vulnerable people, go out are greater.

Our risk of catching the virus is higher. Our risk of being badly affected by the virus might also be higher. Unless in a remote place, going out for a walk now runs the risk of not being able to distance ourselves enough from another person. If you use a wheelchair you often have to rely on other people to move to allow more space between you, you’re not always able to just move across to create more distance between you due to the nature of the pavements. That alone creates a sense of fear and anxiety about going out. To be dependent on strangers to be understanding and respect the need for social distancing when they don’t know you is quite nerve-wracking.

I suspect those of us who have been deemed more vulnerable aren’t the only ones with a sense of anxiety about going out for the first time since this all began. I suspect many people felt a nervousness or even a bit of fear the first time they went out either during lockdown, or after it, because we all know this virus can affect anyone, and by going out even just for essentials we are essentially putting ourselves at higher risk than by staying home.

But can you imagine the fear, the anxiety, you would feel knowing you’re going out in a more ‘normal’ world, when you might not be able to socially distance appropriately; you’ll have to rely on others to do so, while also knowing you are more at risk of getting the virus and it impacting upon your other health conditions?

So I ask you not just to please remember the lockdown experience, as discussed in my previous post, but also please be patient with us. The outside world seems like a scary place for those of us who are at higher risk and more vulnerable, those of us who on the advice of our doctors, the scientists and the government haven’t left our homes for 12 or more weeks (I actually think most of us are getting on to week 15 now) because of the risks to us.

Please be patient as we adjust. Encourage us gently to venture out for a walk, but do not force us to go out if we don’t feel ready. Offer reassurance on those occasions we have no choice but to go out whether we are ready to or not; for those all important medical appointments for example.

Please be respectful of the social distancing guidance when you are out; if you see someone in a wheelchair, using a mobility aid or visually impaired please make the effort to put as much space between yourself and them as possible, even if it isn’t quite the recommended distance for social distancing, because they may not be able to do so themselves.

Remember, although we may not say so we do appreciate you doing these things, they may only take you a few seconds but they make the outside world that little bit less scary right now.

Thank You. 


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