Living Life, Within the Limits of Chronic Illness

Category: 2020 Page 1 of 3

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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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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Please Don’t Forget This Experience

As lock down restrictions begin to lift, this post is to those able to start making exciting plans for the future, plans for getting out and about, plans for returning to ‘normal’.

Please don’t forget what you have just experienced. You know that feeling of grief about all you’ve missed out on during this period of enforced lock down? That feeling of being trapped in the same four walls for weeks on end? I know how much you will want to forget about how it all felt, but please use this experience to gain an insight into life with a chronic illness/disability which leaves people housebound indefinitely.

As lock down restrictions begin to lift for the majority of people there are a minority for which the next few months will be even more difficult than the period of imposed lock down was. Perhaps not practically; for during lock down they couldn’t get the grocery deliveries for which they had always depended, the carers and personal assistants who came in regularly to help them in many different ways haven’t been able to do so for risk of infection. But mentally the next few months are going to be much harder for them, as they watch the world return to ‘normal’ while their life effectively remains in lock down.

You see, there are many people who found that lock down didn’t really change too much for them: their lives are restricted to being at home all the time, only going out for essential things such as medicines, food shopping and medical appointments. And for many the first two of those things are usually ordered and delivered to the home wherever possible.

They can only manage the essential trips out. And when they are at home they are not able to do all the things most people have been doing to keep themselves entertained during this period of lock down. While it has been fantastic to see the creative ways people have found to stay in touch with others, to be social, to keep fit, to take the opportunity to do things they’ve been meaning to do for years. And the way everything has adapted so most things can be done from home and be inclusive.

That has hurt;  think about how you felt as this country entered lock down meaning you couldn’t meet up with friends as you usually did, do all the things you loved to do and had planned, while in other countries around the world life was (at some points during this period) continuing as normal. That’s how those who are usually housebound have felt as they’ve watched the world around them adapt to doing things from home, some things of which they have asked for for many years but those requests have been ignored.

As the differences between being healthy while housebound, and chronically ill/disabled while housebound have become abundantly clear, a new wave of grief has been experienced by many. It’s only natural. To see everything everyone else is able to do while effectively living the same way as you, but without the limits illness/disability imposes, it’s almost impossible not to feel at least a bit sad about everything you’re unable to do. You know all those video calls, virtual quizzes and the like which have helped keep you sane over the last 8 weeks? Imagine not being able to manage those, at least no where near as often; many people can’t. All those activities you’ve found to fill your time? Only a few might be manageable to some who are housebound, and even then it will take them longer to achieve, if they can achieve them at all.

The stark reality of the life those of us with chronic illnesses/disabilities which leave us housebound has become even more apparent to us during this period of lock down. Whereas before we’d learned to make the best of our circumstances, and what we could manage while housebound seemed plenty. Now we’ve been hit with the reality of it again, like we were when it first occurred; the contrast between what we consider a successful day and what you would consider a successful day is huge. And believe me that hurts.

Add to that the gradual lifting of lock down and all the excited posts on social media of what you’re planning to do when you can get out and about and that’s a double whammy of grief right there. For us the gradual lifting of lock down makes very little, if any difference.

Yes, during lock down most of us haven’t left our homes at all. Not even for so called essential purposes, preferring instead to find other ways to get the essentials because the risk to our health has just been too high. So the gradual lifting of lock down does affect us in more ways than one, it means we might be able to return to going out for those essential purposes; to get medicines, food and to medical appointments, once we feel it is safe enough to do so, or in the case of medical appointments once the health service resumes the routine appointments and tests for managing long term, underlying conditions.

But please don’t forget that during this period of adjustment, as the majority of people begin to return to some semblance of normality with the gradual lifting of lock down, that the minority will be grieving for the fact they can’t do the same. That their ‘normal’ is similar to what you have just experienced for 8 weeks or so, but without the ability to do as much as you did each day. And for them life in lock down has no end.

So if you know someone with a chronic illness/disability who is usually housebound, please check in a little more than usual. Make sure they know that you know this period of adjustment will be hard for them, and you’ll be there if they need you or want to talk about it.

Please be kind, and think about how it must feel seeing the world return to more normal ways of living again, knowing that for you nothing has drastically changed; while everyone else is beginning to emerge into the outside world again, free from the four walls of their home, you are still housebound, only able to leave for the essentials.

Thank You.

 

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A Day in my Life 2020

Well I never thought I’d be writing my annual day in my life post with the country in lockdown, and the majority of the population getting to experience what it’s like to be mostly housebound. Although they still have an advantage over what my experience of being housebound is; energy to do things to keep them occupied. I have to admit I’ve found it a bit tough in recent weeks seeing what everyone else is managing to do at home during lockdown, when my life has barely changed and I still only really have the energy for the basic things. But hey ho, you know you’re chronically ill when the country goes into lockdown and you barely have to change a thing about your life!

Anyway, back to what this post is supposed to be. For the last 7 years I have posted about an average day in my life on M.E. Awareness Day (May 12th) or there abouts. And this year is no different, so here we go:

I wake at 7:45am to the sound of the landline phone ringing, 15 minutes before my alarm is due to go off. I feel unrefreshed as if I’ve slept less than I have but I inch my way up to a sitting position because experience tells me if I fall asleep again until my alarm goes off I’ll only feel worse. So I slowly sit myself up, assessing the pain levels and where the most pain is as I do so and get out of bed, making sure not to do so too quickly so that I don’t make myself dizzy. I sit on the edge of the bed getting clothes out ready for later in the morning.

At 8am I make my way down the stairs, fairly steadily, holding on the rail for support. I use the bathroom and then get myself a bowl of cereal and cup of fruit squash before settling myself down on the sofa to eat breakfast and take my morning medication.

I have a bit of a rest before getting up and going to the bathroom around an hour after getting up, where I clean my teeth and wash, before heading upstairs to my bedroom again. Once there I have a short sit down before I begin doing my physiotherapy on the bed; 11 different gentle stretches, with reps of between 2 and 5 depending on the exercise.  I then have another short rest before I get myself dressed; I tend to do my physio in my pyjamas because once dressed I have compression socks on (as recommended by my cardiologist) and I find they dig in if I do my physio in them.

I gather up any dirty washing and take it downstairs with me where I put it in the machine along with any other laundry that’s in the wash basket before setting the washing machine going. I often have a little sit down and rest before tackling the washing up of the breakfast things, usually sitting on my perching stool while doing so. I leave the things I’ve washed up to drain on the drainer as I can’t manage both washing up and wiping up!

Now it’s time for cuppa! I make myself and often my sister a cuppa using my one cup hot water dispenser before sitting down on the sofa with my feet up, having a bit of a rest. I might watch something on the TV or do some knitting depending on how I’m feeling.

Usually around 11am I get up again and take the washing out of the machine, either putting it on the airer straight from the machine, or folding it into a basket and putting it on the washing line outside; if I do the latter it can take me two or three trips depending on how heavy the clothes are, and I always put the basket on the garden table or chair so I don’t have to bend down to it as that often results in dizzy spells. I’ll often have a little break and sit down while putting the washing on the line as it involves lifting my arms up higher than it does for an airer and after a few goes my arms start to hurt so I have to rest.

11:30am and I sit down for yet another rest, and some more medication. Again I might put the TV on and half-watch something which is simple to follow during this time, or do some crafts that don’t involve too much in the way of concentration as the housework I’ve just done has taken quite a chunk of my energy. I stay this way until lunchtime, usually when my Dad comes in from work.

Dad often makes my lunch for me so I can continue resting on the sofa as the pain is starting to increase by this point. I take some more medication with my lunch, and then spend most of the afternoon on the sofa either resting or chatting to him when he’s around. If the weather is nice, and my legs allow, I might wander out into the garden and sit out there instead. Usually chatting to my Dad, sister or neighbours (from a safe distance, each of us sat in the middle of our gardens) whoever is about and happy to chat about anything and everything; stuff that doesn’t matter if you forget!

By 3;30pm I’m often starting to flag. I become quieter and not quite as involved in any conversation. Just listening to what’s going on rather than joining in. Around 4:30pm you will often find me sloping off upstairs to get changed into my pyjamas and do my second, and final, lot of phsyio for the day. I am then back on the sofa ready to watch the daily government briefing about the pandemic at 5pm, and stay there long after it has finished and the TV is off.

I take more medication and listen as my Dad (and/or sister) cook dinner before eating that on the sofa. By now the pain is usually at it’s worse, as painkillers begin to wear off again and the effects of having done some housework in the morning begin to set in. The evening is usually spent curled up on the sofa resting or reading a book until the phone rings with our evening phone call from my Mum.  I often end up taking my final lot of medication for the day during this call.

Come 9:30pm I am usually ready to start getting ready for bed, moving a little slower than I have throughout the day but still fairly steady on my feet despite the pain. I go to the bathroom and get myself ready for bed before Dad follows me up the stairs; thanks to the physiotherapy this task isn’t as hard as it used to be, and I get up there without too much unsteadiness!

I settle myself into bed, write in my journal, take off my glasses, switch off the lamp and try to find the least painful position in order to try and fall asleep.

As with previous years post this is just an average day. Some days are worse, some are better. I adjust my activity levels and the aids I use accordingly. But this is the amount of activity I currently do each week day at least, unless the day is a bad one. Lock down has made pacing myself that little bit more difficult as I have to do more of the housework with my Mum staying over at a relatives to look after them.

I don’t know what the impact of this will be on my health in the long term, I am trying my best to create a schedule which allows me to pace myself better than I was when this all began in March, and my Dad does what he can to give me time to rest, particularly at weekends. But obviously this is harder on my body than things would usually be if there wasn’t a pandemic; even if I could go out I wouldn’t be able to due to the amount of energy I’m using keeping the house tidy and laundry up to date. I also know that this current level of activity on an average day isn’t sustainable long-term, I’m just struggling to come up with a way round it. I hope that I will find the right balance and things will get even just a tiny bit easier soon.

Looking back on last year’s post it’s heartening to see things have improved a little again; thanks to the new diagnoses and resulting treatments I don’t get quite as dizzy, quite as often; I still have to be very careful not to change positions too quickly and if I don’t have compression clothing on the dizziness can be quite bad but it is still an improvement. And the physiotherapy is helping with muscle strength and means my ability to manage the stairs is so much better than it was; yes I still have bad days where it is as difficult as it was last year but they are fewer than they were. It still takes it out of me too, but it isn’t as difficult as it was. So it’s all fairly positive!

Some things haven’t changed since last time though, so I shall quote from my post back then:

“…when people visit I always put on a brave face, an act so they don’t see just how bad the ME is. I don’t do this for my sake, but to protect them from the truth. There are some who see the ‘real’ me now but it’s taken a few years for me to ‘drop the act’ for them. And if they themselves are having troubles or stresses the ‘act’ of being better than I am and not letting on how bad I really am comes back to protect them. I don’t want to add to their worries.”

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