Living Life, Within the Limits of Chronic Illness

Author: Clare Page 2 of 54

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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Strange Times

What a strange time we are living in at the moment. Not just here in the UK but worldwide. How is everyone coping with it all?

For me personally there are many mixed emotions, and I veer between being completely okay about things, and quite anxious about everything and anything. It’s weird because up until last week, just before the advice to stay home was made, there wasn’t anything particularly different about my life to what it normally is. With no medical appointments, and not having the best time with my health (it’s only a slight flare, nothing serious I promise!) going out wasn’t really on my agenda anyway.

But a lot can change in a week. And a lot has changed in a week.

My little sister has moved home from university, since it has essentially closed and all the lectures will be done online. My Mum has moved out to stay with my Grandad, as she was going across to care for him daily, it seemed like a sensible decision for her to stay over there as soon as it became clear people were being told to stay at home where possible, and the carers that usually came in to help were beginning to struggle with workload as people took time off to self-isolate in order not to spread the virus to the vulnerable they were working with. And then the official ‘lockdown’ began, and my Dad no longer goes out to work as he is not a key worker.

So now, like everyone else, I’m finding my life has turned upside down. On the one hand I know I should be used to not going out, but seeing everything on social media about ‘what to do when stuck inside’ has brought up some mixed emotions too; there are plenty of things which have been suggested which I can still only dream of being able to do. And suddenly once again, the little I can do doesn’t seem like enough.

I find myself thinking about all the things I could be doing if I was well; I’d be the one putting notes through people’s doors with my number, telling them to let me know if they needed anything. I’d volunteer to help in the community; getting shopping and medication for people etc. But instead I am one of the people who are relying on others for everything.

I haven’t left the house for 15 days, well left the property; I have been in the garden. My contribution to the house is sticking the laundry in the machine, planning our meals (with input from everyone else obviously) so as to make the best use of the food we have got, and making a list of the things we need when my Dad goes shopping, particularly the free from essentials like dairy free ‘milk’ for which I have no other alternative but to have.

And I am still exhausted, more exhausted than I have been when managing the laundry and a few other household tasks in recent months. I’d forgotten how exhausting just having people around more can be. I’d grown accustomed to spending almost half the day alone. And it turns out that peace and quiet allowed me to have the energy to manage the household tasks I was previously managing. Now energy is going on socialising/listening to more conversations in the house, even just coping with the bustle of other people doing things in the house, I’m finding myself more exhausted.

And of course there’s the anxiety. Not helped by the constant barrage of news reports in the newspaper, on TV and social media. For some people delving into all that and gaining knowledge helps. For me, well lets just say I watch the daily briefing around 5 p.m. each day, and occasionally pick up the newspaper to have a read if I feel like it. I’m trying to avoid a lot of the pandemic related posts on social media, unless they are the lighthearted ones or government ones. It all depends on how I’m feeling at that present moment; sometimes I can cope with it, other times it can completely overwhelm me. I do what I need to do in order to protect myself.

There’s also anxiety and uncertainty over my upcoming hospital appointments for tests and treatments; I expect them all to be cancelled, at least for next month if not longer (I can’t remember when my next ones are beyond next month!). But that hasn’t been confirmed by the hospitals yet and I’m unsure what to do; do I try and contact them in some way? Preferably by email as I expect the phones will be busy. Or do I wait until closer to the time? One is only a week away next week, how close do I leave it?

I know it’s for the best. I know all of this is necessary. I also know it is an uncertain time for many, and we are all having to adjust to a new normal. I’m just finding it difficult to cope with my illness flaring up, particularly with flu-like symptoms, at a time when everyone is hyper-vigilant for any “new” symptoms. Whenever my illness flares up there is some debate over whether it is “just the usual” or whether it is indeed a virus of some kind that I’ve managed to pick up despite not going out and no one else having been unwell. And obviously in the current climate that is a bit of a scary place to be.

I know we will come out the other side of this. I hope that as a society we will come out of this more compassionate and understanding of the situations others face everyday of their lives; for some people this ‘self-isolation’ is the norm, low income is the norm, if you are reading this and facing it as a temporary thing in order to save lives, just remember that there are people who have to live like this indefinitely. And there is also those people who have longed to be able to get a job but would only be able to do so if they could work from home remotely, but for years this has been something that has been classed as ‘impossible’, yet now wherever it can be done it is being done. Just like that. If these accommodations can be made available to those with jobs in a crisis like this, surely we can extend them to the disabled and chronically ill people who long to work but require these accommodations to be able to do so?

I hope that when we come out the other side of this pandemic, we will see some positive changes in society. That people will understand that health is a precious thing, never guaranteed, and that when it is threatened in any way at all your life becomes uncertain.  But that with the support of others, although it is still hard, it becomes easier to cope with.

For once we are all facing the same enemy, and have the same responsibility to keep each and every one of us as safe as possible. Do what you can to keep yourself and others safe by staying at home as much as possible, that’s all any of us can do.

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Self-Isolation

I’ve been sat here pondering about whether or not to post anything about the current pandemic, I know I for one am finding social media to be full of the worst case scenarios, rumours galore and generally just lots of doom and gloom right now. But I figured I might as well write something, and no, this post isn’t going to be all doom and gloom. Because what good does that do anyone? No, this post is going to highlight how, despite the current pandemic and resulting panic, not a lot is going to change for me. And I suspect this is the case for many other people who are almost, if not completely housebound.

You see, for the past 15 years I have lived in what it seems is now being called self-isolation, and my family have had to live in a form of self-isolation too; doing what they can to protect me from catching any viruses which are doing the rounds.

We keep hygiene to a high standard, wash our hands often, particularly after having been outside anywhere. We use the antibacterial gels, wipes, hand wash etc. but not to over the top standards; my little bubble doesn’t need to be 100 percent sterile. We just do what we can to minimise the risk of me catching anything. It is now an embedded part of our routine.

And as for social distancing, well I myself only really leave the house for medical appointments, to visit my Grandparents and for the occasional shopping trip on ‘better’ days. My parents don’t exactly go out a lot either as usually someone has to be here to help look after yours truly here; they go out to work, visit my Grandparents, do the shopping and such, but rarely will you find them out socialising or at concerts and the like.

You see, my health has meant that the things everyone else seems to take for granted, the things they think they should be able to do, and life will be terrible without, my family have tried to avoid for the 15 years since I became unwell. That’s not to say they don’t occasionally go out to concerts/theatre/pubs/meals whatever, but it doesn’t happen often, and more often than not that would be in summer when there are less viruses doing the rounds, and my health tends to be a little better anyway.

And I think this is what has led to my utter bewilderment at some of the things I have seen on social media since this pandemic started: people wondering how on earth they will survive 14 days in self-isolation, stating how utterly awful it will be and so on and so forth. It’s just highlighted the MASSIVE difference there is between my life and seemingly most other peoples. I mean to me 14 days in what they are now terming self-isolation would be a breeze as far as I’m concerned; it’s not unusual for me to be stuck in the house for 14 days at a time, granted over the last 15 years mostly spent stuck in the house I have found things to do; little bits of housework, DVD box sets to watch, a few hobbies such as knitting and card making, all things I can manage within these four walls, and pick up and put down as my health allows.

But being isolated for 14 days, or even a few months or years, isn’t as terrible as it once was. Granted it’s still not exactly pleasant, especially if you are used to socialising lots, you will miss out on things, but at this time EVERYONE is going to miss out on things. You won’t just be sitting there thinking about what a good time everyone else is having at the concert while you self-isolate, because that concert has likely been cancelled anyway.

Besides, compared with the first few years I spent self-isolating, there is A LOT more you can do and a lot more interaction to be had while stuck at home. As a girl who became housebound, and was self-isolating, back before the internet was a big thing, when households only had the one computer for everyone to share, and social media was still in the making; it may only have been a few years before it became main stream but even then it wasn’t as big as it is now.

I can honestly tell you that self-isolating now is an awful lot easier than it once was. You can have contact with friends, family and the like without leaving the comfort of your own bed if necessary, heck you can even attend tutorials online from your bed (after all that is basically how I did my degree!). It doesn’t even have to just be through messages and phone calls, you can see each other through video calls too these days. Self-isolation doesn’t mean you are completely cut off from everything quite like you used to be; I could go weeks without hearing from my friends because we couldn’t afford to text that often, I wasn’t well enough to sit at the desktop computer and write an email, or to write a letter and get someone to post it for me. Nowadays I often hear from at least one friend a day, even if it’s just a quick message to say hello. Those messages often brighten my day, it’s through losing things that you learn to truly appreciate what you’ve still got, and while self-isolation may feel extreme to some, it can be absolutely necessary, and during this pandemic you at least know that your self-isolation is temporary, many of us with chronic illness live like this indefinitely.

The media are going wild about how people need to change their routines and life will inevitably be disrupted over the coming weeks and months. And I know for the majority of people that is true, but there’s also me sitting here looking at my own little life and thinking that actually not a whole lot is going to change, or even needs to change.

Yes, inevitably I will in all likelihood cut out all but essential trips out of the house: no more shopping trips on ‘better’ days, probably less visits to my Grandparents too, but that’s nothing I haven’t done before during rougher periods of health anyway; it is part of my ‘normal’. Actually as I write this I have turned down the chance to go out with my parents, something I would usually have jumped at the chance of, and yes it does make me feel a bit down, but I know it’s for the best.

We might wash our hands a little more often, maybe even wipe down surfaces a bit more than usual but the fact is our cleanliness levels are already high. There’s not a whole lot more we can do. No, we are not imposing the stay two meters away from anyone in the house as part of social distancing, because quite frankly the house isn’t big enough for that, and in the 15 years of my being unwell what we have been doing has been sufficient and I don’t see why this should be any different.

Please know I am taking this pandemic seriously, and I am worried about it. I don’t doubt that for a lot of people this is a massive change in routine, but for me the majority of the advice I’m hearing are things I am already doing.

The fact is we just have to do the best we can to minimise the risk of us catching any virus, within the limits of the basics (work, food shopping and the size of the house! etc.) After all our best is all we can do.

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Loneliness

In a previous post I wrote about loneliness I almost sang the praises of social media and technology in helping to prevent loneliness setting in; all the positives that can come with it and how it can help me to feel less lonely (You can read that post about loneliness here). However, that’s not to say there isn’t drawbacks. In that previous post I mentioned there are days I’m simply not well enough to manage screens, or need a break from the online world. But there are others.

Now, before you read any further I want to stress that what I am about to write isn’t meant to discourage anyone from posting what they want to on social media, after all it is your social media page and you can post what you like. This is just something I’ve become aware of feeling myself, and I’m sure others with chronic illnesses probably feel the same at some time or another.

It’s often said that social media is a highlight reel of your life, and lets face it, that is pretty much the truth of the matter. The focus is very much on the things you do, the achievements you complete and the things which make you smile and feel good. And why not? Because sharing your happiness with your friends is what life is all about is it not?

I do the same. If you look through my social media accounts you will often find it’s notes of positive things; little trips out, the things I haven’t been able to manage for a while and have now done again, things I’m proud of.

But there are times when scrolling through social media and looking at what friends, family and even complete strangers are posting about doing, only serves to highlight how restricted my life is in comparison, and how lonely it is too. As a rule, I try not to compare my life to others, as the only thing it serves to do is drain the enjoyment out of my life.

However, it’s impossible to live by that rule all of the time. When all you see when you log in to social media is people getting engaged, married, having babies, new jobs, new houses, going out for drinks with friends etc. I can’t help but look at my life and realise how small and restricted it is.

The truth is, over the years of illness, the number of friends and family I have who visit in person has dwindled to just a couple. Yes, I have some amazing friends made through charities and social media, but they all live quite a distance away and often neither of us is well enough to travel to meet.

And it’s not just about the number; as the years have passed and they’ve got on with their lives, as I would have done if I wasn’t so unwell, I feel like a gulf has opened up between us. With some friends and family I simply don’t know what to talk about any more; we don’t have a lot in common and I can no longer relate to what is going on in there lives, and they can’t relate to what mine is like either. All those experiences which come with age; getting your first job, working, having a partner, moving out, having kids… none of that applies to me yet. My full time job right now is managing my health and hospital appointments, relying on my parents to cook dinner, get me to appointments and more. Not something a lot of healthy people can relate to!

I can’t do a lot of the things I see posts about, even the seemingly ‘normal’ things of meeting friends for drinks or a meal, this has to be arranged at a time that will be manageable for me, and sometimes will have to be at my parents house, in their living room because I’m not well enough to leave the house. Otherwise it’s a case of a friend, mastering the art of loading a wheelchair into the boot of their car, and unloading it at the other end. Sometimes pushing me, other times I’ll self-propel, that all depends on the distance needing to be covered and how I am on the day.

Sitting alone, at home scrolling through social media, sometimes that reality hits me like a ton of bricks, and I realise just how restricted, and yes, lonely, my life is. It sometimes feels like I’m the only one going through this, even though I now there are many in a similar boat. And I also know that my social media posts, my highlight reel, could be causing someone to feel the same way I do sometimes. I try to be open and share the not-so-good times on my social media too, but somehow it’s more difficult to share those moments than it is to share the good bits.

So if you ever feel lonely scrolling through, please remember that it is a highlight reel, and that you are not alone in feeling this way. If you’re like me, you’ll probably feel reluctant to do what I’m about to suggest because you don’t want to bother them, but drop a friend a message, even if it’s just to say “Hi” and see where the conversation goes. Or if you’ve noticed someone hasn’t posted anything for a while, or you haven’t heard from them do the same.

Just a single conversation can alleviate the loneliness, no matter how short that conversation might be.

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