Living Life, Within the Limits of Chronic Illness

Author: Clare Page 1 of 54

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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How Controversial Graded Exercise is Helping Me

Before I even begin writing this post properly I feel I need to explain that I do not believe Graded Exercise Therapy (G.E.T.) will cure M.E. In fact I know it doesn’t.

You see, I was prescribed G.E.T. when I was first diagnosed with M.E., and I followed the advice I was given while doing it up until the physiotherapist who was doing it with me, discharged me when she saw it was actually making me worse rather than better. And for that I am immensely grateful – the harm that could have been done had I kept following the advice is unimaginable, however that also left me in a worse state of health than I had been, with no help or guidance on what I should be doing for the following 13 years.

But, 13 years on, having seen more doctors (and gained more diagnoses) I am back doing a form of graded exercise. Only this time it is being done in order to help my hypermobile joints and most importantly done at my pace; that’s to say the aim is to gradually increase the exercises I do, BUT if I have a bad day I can reduce the amount I do, or even not do it at all, all depending on the levels of fatigue and pain I have that day. The idea is to build up my ability to “exercise” while still being able to manage my every day tasks and activities.

I think the key thing here is to explain exactly what I mean by “exercise”; for many that term conjures up walks, gyms, running, swimming, all the kinds of things I am unable to do. And if I attempted would leave me in a heap on the floor. No, for me exercise each day is a series of gentle stretches twice a day, doing between 2 and 5 reps of each. Working towards 5 reps of each exercise and possibly adding in additional exercises once certain areas are stronger. The majority of these are done laying down, in part because of the symptoms I get when standing up and the risks they pose.

Like I say we are gradually increasing them. The aim is to increase one “exercise” by one rep, once a day every 2 weeks. But if I find I can’t manage that, it’s fine. We come up with an alternative plan; either increasing a different exercise that time because it’s obviously too soon for the muscles used in the one I’m trying to increase, or leave it longer between the increases. It’s all about finding what works for me, and what I am able to do without impacting greatly on my daily routine.

My personal view is that the idea of graded exercise, or activity (which basically includes everything done in a day), is a good one. However the way it has been implemented in the past, as G.E.T. particularly in regards to those of us with moderate/severe M.E. is severely flawed. Like I said, I’ve been there, I’ve seen the damage it can do, and it is only thanks to a physiotherapist that it didn’t do more damage than it already had to my health.

But the general principle of gradually increasing the amount of exercise or activity is a good one, and it is what many of us do without even realising it; we build up in little steps to doing things; like watching TV for 30 minutes instead of 25, or sitting up for 32 minutes instead of 30. Or reading a sentence in a book, then building up to reading a paragraph.

Whatever it is, it’s natural for us to do it; the majority of people I know with M.E. all have something they are working towards; little by little, something they’re building up to doing. The key to it being beneficial rather than harmful is just the way in which it is done. Listening to the body, only pushing a tiny bit at a time, and resting afterwards, assessing the impact doing something has over the hours and even days that follow. And if the impact is bad, you go back a step; find the level which is manageable and can be maintained before perhaps trying a smaller increase, or a different increase to work towards which works for you.

With the right implementation, I think graded exercise can be beneficial. It’s not going to cure M.E. or hypermobility, or many other chronic illnesses for that matter, but by building up the muscles, no matter how slowly, it will gradually take less energy to use the muscles, and in turn that leaves a little more energy in the pot for something else. It doesn’t actually increase energy levels; they remain as low as before, it just reduces the amount of energy that basic tasks take each day.

On bad days it might not seem that way at all, and even on average days it can be difficult to notice, at least not for quite some time. But in my experience, after 6 months, when I look back at what I had been managing, and what I am now managing there is a slight improvement; going up the stairs isn’t quite as physically difficult mobility wise, and it doesn’t take quite as much out of me as it used to. That’s not to say it is easy, or that there aren’t days when it is almost as difficult as it used to be, but for the most part, on average, it is a bit easier than it was.

And that gives me hope. Hope that if I continue building up my exercise, or activity levels, however slowly, things will continue to get that little bit easier.

Now I know that what I’m doing won’t work for everyone, because everyone is different. And it is important to realise that: what works for one person, may not work for another. But it is equally important not to tear people down just because they’ve tried something and found it’s worked for them, when it hasn’t worked for you. I can’t tell you how many times I’ve seen people who have improved, be that a little or greatly, being attacked on social media because if they’ve improved at all they can’t have had whatever diagnosis they’ve been given by a doctor.

The problem is there is such a range of ability within the diagnosis of M.E., hypermobility and other chronic illnesses, that it is impossible to compare one person to another and come to conclusions about what will work for you. The one thing we all have in common is that a doctor has given us the diagnosis based upon our symptoms.

The chances are we have all tried to find ways in which to live the best life possible with our symptoms, and find ways in which to improve our health; whether they have worked or not, we generally keep trying. Perhaps not consciously (by going out looking for the “magic cure” and spending money on things which promise to help), but subconsciously we are always trying to make little improvements, acknowledging the positives in each day, and celebrating those “firsts” since becoming ill (such as the first time standing without feeling dizzy for x-amount of weeks or whatever).

Comparing yourself to others with the same diagnosis doesn’t do any good. And saying bad things about someone who has managed to improve their life, through whatever means that worked for them, doesn’t actually help. It might make you feel better for a few minutes or so, but the chances are you’ve hurt them for much longer than that. You might well find your means to improve sooner than you think.

But in the meantime, be kind.

I am hoping that my current journey with graded exercise will continue to be a positive one. Both me and my parents went into this incredibly warily after what happened the first time, we were ready to pull the plug the moment it seemed to be too much for me, but the approach being taken this time round is VERY different to what it was. Whether that is because knowledge of M.E. has come on in the 13 years since I last encountered G.E.T., or whether it’s because this is being done to help manage hypermobility and therefore is done in a different way, or perhaps I’ve just been incredibly lucky in the physiotherapist I see. I don’t know.

What I do know is, right now I am feeling some benefits from it; stretching each day is helping ease some pain, I am gaining a bit of mobility back (not great amounts, but little bits which help with getting around the house, and that makes a big difference when you’re housebound) and because my muscles aren’t taking quite as much energy to do things I am managing to do a little more activity each day; be that simply concentrating on a book for a bit longer, again it’s nothing huge but when you’re life is so restricted by illness any little improvement helps make life a bit better. And that is what counts.

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