A Life Less Physical | For People Living With Chronic Pain
Hello, I’m Sarah, Chronic pain blogger sharing tips and tricks to live a life less physical – but no less fun. Mainly blogging about fibromyalgia, migraine and the important things in life: pizza, brunch, tea and cake.
I haven’t blogged in what feels like a very long time. It’s been a weird month and sharing it here as it was unfolding felt too difficult, so I waited for things to calm down and now – here I am.
March began with a killer flare. If I didn’t know any better, I’d have thought I was dying. Pain was high, energy was low and I wanted to curl up and sleep for a really long time. I wrote multiple blog posts in my head sharing details of the burning pain in my fingers and knees, waking from sharp pain in my back and trying but failing to cope with migraine after migraine. I worked all day and I pushed through the pain, but my face was pale and my eyes were dark. My clothes hurt, my skin tingled and everything felt like too much effort.
Image via Healthy Living
A couple of weeks later my dad had a quadruple heart bypass. I watch a lot of hospital dramas (shoutout to Greys, obvs) but I don’t know much about actual surgery. I soon learnt about breaking chest bones, four blocked arteries, and surgeons who were surprised my dad was still walking and breathing. I learnt about taking veins from legs and putting them in his heart (how amazing is that, by the way) and I learnt about the months of physical and emptional recovery. He’s a trooper and is doing incredibly well, and, as I sat by his hospital bed and tried to relieve the emotional pain my mum was experiencing, my flare was far from my mind. The pain didn’t stop but, hell, my dad just had heart surgery so I had to buck up.
But the pain just kept on coming. I went back to the doctors and – with the help of a motivating speech from my osteopath – asked for a series of blood tests with the purpose of re-checking for rheumatoid arthritis. The results came back abormal so they sent them away for further tests and, in the four days that went by whilst I waited for conclusive results, I found myself hoping the results would come back positive. If I got diagnosed with rheumatoid arthritis I would have a condition people have heard of, I would have medication that treated the cause, I would have a treatment plan and a doctor that gives a shit. I was on the train when my GP called me. She said, “Just to let you know the results are negative. I know in some ways that might be disappointing but it’s a good thing. Okay, bye.” I’m not paraphrasing; that was it.
I made peace with the undiagnosis (okay, I didn’t, but I’m trying) and carried on looking after my mum and dad. I decided the best way to distract my mum from all the stress was to recommend Greys Anatomy – genius right?! No. Not my smartest move. Someone dies of a heart bypass in the first episode.
Then, at the end of March, I got a virus. A virus that meant I couldn’t talk for four days. FOUR DAYS. Who’s got time for that?! I took four days off sick which I almost never do and watched TV whilst my body slowly recovered from… everything.
Image via Science Mag
So that’s why I haven’t blogged in a month. Because when life happens and things are busy, it’s hard to blog. It’s hard to do yoga or eat healthily or do all the things I know I need to do to manage my pain. Instead I put all my effort in to managing my life, and my pain gets pushed to one side.
Managing chronic pain is a full time job, and I don’t always have time to do it properly. I know I should, I know that it needs prioritising but sometimes there are other things that feel even more important. When my pain isn’t my top priority I know it will get worse, but I also know it won’t kill me. Sometimes it just has to wait.
You all know how much I love a practical blog post and you probably know how much I love an inforgraphic too, so here are two of my favourite things in one place just for you.
Chronic pain affects both the ability to fall asleep and overall sleep quality. In fact, according to the National Sleep Foundation, those who suffer from chronic pain experience lower sleep quality and have higher stress levels than those who do not.
Pain plays a major role in sleep debt for several reasons. The physical pain can make it difficult to fall asleep, and the stress caused by it can keep you up. Additionally, those who struggle with chronic pain often have difficulty finding a sleep position that’s comfortable and doesn’t further exacerbate pain points.
If chronic pain is making it difficult for you to fall asleep, SensorGel suggest it may be time to reconsider your sleeping position. This SensorGel infographic outlines the effect different sleeping positions can have on your body, from reducing back and neck pain to improving circulation.
I’m currently in a flare, so please excuse the short blog post. The old fingers aren’t as useful as they usually are. Still, short in length but packed full of information I’m sure you’ll agree!
If you have just been diagnosed with fibromyalgia my guess is you’re frustrated, exhausted and a little confused. It’s likely you’ve spent months – if not years – being tested for a myriad of conditions to finally get a diagnosis for a condition no one seems to know anything about.
You’ve likely been told there’s no cure, so you’ll get instructions to improve your “coping strategies” and “pain management”.
You’ve probably been told there’s no treatment plan, so you’ll hear phrases like “get to know your body” and “work out what works for you”.
Once you get home, you’ll realise you have the name of a condition – but not one you can pronounce or spell – and you’ll learn that people struggle to understand and empathise because “you don’t look sick” and “it’s all in your head”.
Not only is all of this hard to deal with, but the amount of information online can be overwhelming. There are a variety of theories about what causes fibromyalgia, there are hundreds of companies trying to sell you a cure, and there are a multiple views on what you should be eating/doing/reading/taking in order to improve your symptoms. It’s a minefield.
This is where the toolkit comes in. By building a bank of tips and tricks that help you understand and manage your pain, you can easily explain your condition to friends and can go back to the toolkit every time you need to be reminded of your go-to coping strategies. You can share the link with people who want to know more about what you’re going through, or you can use it as a personal resource to keep you on the straight and narrow. (Having a chronic pain condition is a lot like having an addiction – you need to stay focused to stop yourself doing the things you know you’ll pay for later.)
Your toolkit might not be identical to mine, but hopefully this gives you an idea of how to build something that works for you.
First things first: the practical tips and the facts you need to know.
I wote an article on New Life Outlook which discusses the idea that fibromyalgia is degenerative, and the things you can do to manage the range of feelings that come with it: Is fibromyalgia progressive?
Finally, the emotion of dealing with a chronic illness and the things that will make you feel less alone.
A good support network is essential for managing a new chronic illness, and the online spoonie community is particularly strong. I wrote this article sharing some of my favourite online forums and social media accounts: The chronic illness community you’ve been looking for.
I’ll be adding to this toolkit over time so be sure to check back for updates or, better yet, create your own!
I’m mid-flare and, as always, it’s floored me. I forget how awful these things are until they stab me in the back, steal my cognitive functions and leave me more exhausted than I’ve ever felt before.
I’m a week in to one of the worst flares of my life, which has got me thinking about the basics of pain management and using all the pills, potions, tips and tricks I’ve learnt along the way. One of the tools in my fibro toolkit is the explanation of Spoon Theory and Burning Nights have summed it up perfectly with the information and infographic below.
Burning Nights is a UK charity increasing awareness of Complex Regional Pain Syndome (CRPS) who said; “The everyday pain of living with a chronic illness such as fibromyalgia is exacerbated by some people’s lack of understanding as to what it feels like. When the illness is not overly conspicuous, there seems to be a default mentality that the person is exaggerating the description of their pain, an unfounded accusation that only makes the person’s suffering even worse.
Lupus sufferer Christine Miserandino became known worldwide for devising the Spoon Theory, a clever yet evocative analogy which brilliantly contextualises the daily struggles of people with chronic illness. She used 12 spoons to represent activities that she can manage during a typical day, with something as seemingly routine as getting dressed taking one spoon while activities like driving, attending lectures or completing tasks at work require multiple spoons.
Christine once spoke of her requirement to plan her day as if she was “strategizing a war” and it is a burden faced by chronic illness sufferers everywhere. Everything from selecting what clothes to wear to deciding what food to eat requires thought and pre-planning so that the consequences aren’t harshly felt afterwards.”
When we’re first diagnosed with a chronic illness, the diagnosis is quickly followed with a word of warning that it’s unlikely the pain will ever just go away and therefore we need to learn how to live with it. “Pain management” and “coping strategies” become some of our most common phrases and, ultimately, we need to learn how to pace ourselves without pushing our limits unnecessarily.
The infographic below explains spoon theory to help you manage your pain and pace yourself. It’s also a handy tool to share with friends and family to help them understand your challenges.
Going on holiday with chronic pain isn’t easy. We don’t pack our bags, skip to the airport and feel all our problems disappear as the plane takes off because – just like every other day – managing our pain is at the forefront of our minds. Going on holiday abroad takes preparation, careful planning and those good old coping strategies to make sure that we get what we need: down time. For most of us, holidays are booked because we need time to rest and recuperate… occasionally I book holidays for fun (madness, I know) but normally I book them because I need to recover and reboot. What’s that they say? A change is as good as a rest? It’s basically my approach to life; book a holiday and you’ll be fine.
For many chronic pain sufferers, holidays come with a whole lot of panic. How will I cope with the journey? How will I cope when I’m there? Have I packed everything I need to manage every single one of my 57 possible symptoms? What will I do if I flare? How will I do and see everything I want to do and see without breaking myself?
Well, I’ve had an epipheny. I’ve finally realised that there’s a special kind of formula needed to create the ideal city break for people with chronic pain, and Tallinn is a totally achievable example of it. (NOTE – I’m talking city breaks only, I know that countryside holidays or beach breaks come with a very different set of requirements.)
Tallinn is the capital of Estonia and is just 2hrs 30min flying time from London. The Old Town is listed as a UNESCO World Heritage Site, and is apparently one of the best preserved medieval cities in Europe. I don’t doubt it for a second; it is absolutely stunning.
St Olaf Church, Tallinn Old Town
Tallinn Old Town
Tallinn Old Town
Last year we decided to go to Tallinn for our mini-moon. (Don’t know what a mini-moon is? It’s a ridiculous excuse for a holiday after you’ve already spent a fortune on a wedding and are about to spend a fortune on a honeymoon.) R got flu right after the wedding so instead of exploring Tallinn in the snow, we spent our entire trip in front of Netflix – except for the odd occasion when I went to the pharmacy. Fast forward 12 months and we found ourselves back in Tallinn for take two and let me tell you: it’s completely wonderful.
It’s small, beautiful, friendly, full of character and bursting with delicious food. It’s pretty much all I’m looking for in a city break.
Tallinn Old Town
Alexander Nevsky Cathedral
The view from Kohtuotsa viewing plaftorm
At the end of this post I’ve listed my top five must-see sights and my top five places to eat/drink if you’re visting Tallinn but, before that, let me share the new criteria I’ve set out for the ideal fibro-friendly city break.
1 – Small
Tallinn’s Old Town is about 1km2 and there are coffee shops everywhere you turn. It’s impossible to walk five minutes and not find somewhere to rest. There is so much to see in such a small space that everything feels achievable. I never felt like I had to miss out on activities because of my health and that, my friends, is essential holiday criteria – I get really bad FOMO.
The city is so small that you get to be completely lazy and still have time to see everything you want to see. After a lie in and a slow breakfast we would decide where we wanted to go, plot the locations on Google maps and work out the best route to conserve energy. (Tactical planning is vital for travelling spoonies.) Visiting the top five sights on my list below took less than 30 minutes of walking time – what’s not to love about that?
Pastries at Rost, Tallinn
2 – Extreme weather
My body craves heat all the time, and there is nothing better than lying in the sun and doing absolutely nothing. The feeling of the sun’s rays magically repairing my body’s damage is what dreams are made of, and those people that say “I could never just lie on a beach for two weeks” are INSANE to me. Not only do fibro sufferers tend to love the heat, we tend to hate the cold. It makes us stiff and our lack of circulation can often result in stiff joints and freezing extremities that take ages to warm up.
But. But but but! I think the British, damp cold is the problem; it’s the kind of cold that gets into your bones and you just can’t shake. Crisp -8ºC snow really isn’t too bad – in fact, I loved it in Canada and I loved it in Estonia. I wrap up in 35 layers of thermals from head to toe, a chunky knit which is basically my clothing item of choice regardless of the weather, and venture out in to freezing temperatures for ten minutes before popping in to one of those super warm coffee shops because nobody – regardless of their ailments – can stay out in minus temperatures for very long.
Wrapped up warm in Tallinn Old Town
3 – Flat
This matters. I wish it didn’t, because there are so many stunning places around the world that require a little bit of an uphill climb to see the beautiful sights below, but unless you’re giving me a funicular (thank you Ljubljana) then I’m unlikely to get to the top of that hill. I’m also unlikely to climb
Tallinn, on the whole, is flat. I climbed a bit of a hill to get to the Kohtuotsa viewing platform but it’s short, and in the freezing cold it’s good to get the blood pumping – plus it’s also helpful to have a person you can lean on who will drag you up the hill when your legs will no longer participate. Just around the corner from the viewing platform area is Bogapott, a cafe that doubles up as a pottery shop with a beer cave and log burning stove downstairs. Dreamy.
4 – Stay local
Often staying in the centre of a city is too expensive, so we look for places near the city with good transport links. That works fine, but this time we stayed right in the centre of town and it meant that we could go back to the flat whenever we wanted. We spent most of our days out and about in the cold, then would head back to the flat late afternoon where we would watch a film have a nap, then head back out for the evening. I’ve decided it’s totally worth spending a few extra pennies to stay local – it makes everything much more convenient and napping much more appealing.
Staying local, our apartment in Tallinn
5 – It’s cool to be chill
You know those holidays people go on to ‘do’ stuff. They go hiking or exploring or boozing or skiing … I am not that person. I have never been that person. I like a holiday where I can just be, and Tallinn is perfect for that. The coffee shops are cool, the mocktails are creative and the hot chocolate is to die for. And everyone everywhere is eating and drinking in hipster cafes doing bugger all. They came here to chill, and I’m all over it.
F-Hoone, my favourite place to chill in Telliskivi, Tallinn
I do recognise that not all holidays should be like this, but city breaks are particularly difficult to manage with chronic pain and I think that sticking to these five criteria can make a long weekend in a stunning city that bit more enjoyable. And let’s face it, some destinations are more fibro-friendly than others and I think it’s important to share and celebrate those.
Where do you recommend for travelling spoonies? Share your fibro-friendly destinations on twitter and instagram with #SpoonieEscapes.
My 5 favourite places for good food, good drink and good vibes in Tallinn:
If you’re involved with the chronic illness community it’s likely you’ve heard about Unrest, a new film about Jennifer Brea’s personal journey with Chronic Fatigue Syndrome. The documentary, which won a Special Jury Award at Sundance film festival in 2017, follows Jennifer as she learns to cope with CFS/ME and reaches out to fellow sufferers online to try and understand a condition that has baffled medics for so many years. It’s gained a huge following and has led to discussions in parliament about the treatment of chronic fatigue patients within healthcare systems across the world.
It’s now available on Netflix and well worth a watch – but possibly not for the reasons you might imagine.
Image via Fort Worth Business Press
If you don’t know anything about invisible chronic illnesses (which I’m guessing isn’t the case, based on the fact you’re reading this blog) then I recommend Unrest. If its purpose is to raise awareness and give a voice to the millions of chronic illness sufferers that are too sore, too tired, too unwell to fight a medical system that doesn’t understand chronic fatigue, then Jennifer has achieved what she set out to do. The film shows the severity of some symptoms of CFS and the families that are affected by the ill health of their loved ones.
But, for me, Unrest touches the tip of the iceberg. It only hints at the story of Karina, a girl in Denmark who is forcibly removed from her parents home because the authorities believe CFS is a psychological disorder; and it only briefly addresses the role of medical sexism and the widely accepted perception that female hysteria plays a key role in the diagnosis of invisble illnesses. This isn’t a criticism of Unrest – I can’t expect one film to address all the problems that surround this complex illness, but there are so many of us talking to people and raising awareness that I feel the unjust treatment of invisble illnesses is where the real story lies.
I haven’t written about the debates surrounding the validity of chronic illness for a while. Well, not since this post last year when I had a stressful appointment with my GP which led to frustrated tears and then a frustrated blog post. Somewhere along my chonic pain journey I have learnt (or tried to learn…) to accept that there are many varying views on this topic. In the case of fibromyalgia: some people don’t believe it exists at all, others believe it’s a psychological disorder, some think it’s the mental and physical shock of past trauma, and others believe it’s an unknown undiagnosed physical disorder that just isn’t identifiable using current technologies. But regardless of what you think might be the issue, one thing I’m sure we can all agree on is: More must be done to research and understand this group of illnesses so that doctors and patients alike know what we’re dealing with.
I was fascinated by the statement in Unrest that Multiple Sclerosis was once known as Hysteria Paralysis, until MRI machines were invented and then we were able to see what was going on in the brain. There’s a strong part of me that feels like patients with ME/CFS and Fibromyalgia are just waiting for the right test to be created, and then we’ll know.
But for the test to be created, the research needs to happen, and there are small studies here and there but in general, the research isn’t happening. Why? Well, I’m not entirely sure. I fear we have reached a point of such acceptance that neither chronic fatigue nor fibromyalgia are being explored as complicated physical health conditions and therefore there isn’t a desire to dig any further, because it’s nothing a little therapy won’t fix. If the research is done and that’s what it shows then, fine, but I firmly believe that we cannot convert physical illnesses in to mental illnesses, just because we can’t see them and just because we don’t understand them. It dismisses our experience, and it doesn’t help the development of work being done for mental health support either.
For every film I see or book I read or podcast I listen to that showcases just how badly these conditions are affecting our quality of life, I wonder how on earth we’re still in a situation where nothing is being done to find what is really going on. The four GPs I’ve seen over the last nine years have sent me home with nothing more than phrases like, “you know your body better than I do, so just do what’s best” and “how you manage this is up to you”. There isn’t even a desire to try and understand, which honestly baffles me.
Image via Natural Treatments for Brain and Body
I discussed this with a friend of mine this week – she has CFS and I have fibro, and the two of us are attempting to work full time and balance our enthusiastic, energetic personalities with our exhausted, painful bodies. We talked about the lack of research and I wondered if maybe it’s because the problem isn’t visible. It’s so easy to ignore what you can’t see; if you can’t see our illnesses and we’re too sore to be marching outside parliament then we’re a very easy group to ignore. My friend agreed and added that the bit people do see is the smiling, working, functioning bit. Our crashes happen behind closed doors and we save all our energy to come and be functioning members of society, so it’s not just that you don’t see the illness, it’s that what you do see looks pretty damn healthy.
So how do we make it real? Well, we keep on trying to explain that just because we don’t look sick doesn’t mean we’re healthy, and just because we don’t talk about it all the time doesn’t mean we’re not constantly thinking about it. We do what we can. We make films, we write blog posts, we particpate in campaigns from the comfort of our sofas and we do our best to keep the conversation going.
I developed Fibromyalgia nine years ago when I was 24 years old. What started as back pain soon spread to my arms, my neck and my legs, and in a matter of months I was struggling to get out of bed. Frequent visits to the doctors and numerous tests at the hospital resulted in nothing, and no one could tell me what was causing the pain.
Doctors wrote prescription after prescription for a variety of pain-killers, none of which worked, and I was eventually referred to a rheumatologist. Unfortunately, the rheumatologist decided there was nothing physically wrong with me, so referred me to a physcologist, and so began a frustrating medical journey experienced by so many other chronic pain sufferers.
Fibromyalgia takes a while to diagnose. It can’t be identified with a blood test or scan, so it becomes a process of elimination. It took 18 months for a GP to confirm I had Fibromyalgia (a fairly quick diagnosis in comparison to some stories I’ve heard) and during that time my physical pain was also accompanied by a gnawing fear that my body and mind were slowly falling apart.
When I was finally diagnosed I assumed everything would start to get better, but for every pain consultant I saw, I saw a further three psychiatrists – all of whom wanted to link my pain to some kind of previous emotional trauma. I was asked about rape, abuse and violence over and over again, none of which had occurred.
Everything I said was analysed and re-analysed, from my relationship with my father to my flippant comment about being a control freak, each word I said was turned into a suspected reason for my pain.
During this time my office job had become more difficult to maintain and I was on such a weird combination of medication that pretty soon my social life become difficult to maintain too. I stopped going to gigs and festivals, stopped seeing friends as often, I moved back in with my parents and I quit my job. It all seemed pretty crappy.
There is no doubt about it; learning to manage my pain has been quite a journey. I started off pretty scared and felt completely out of control, not really knowing what lay ahead of me. But, after a while, I took the time to get to know my condition; I observed my body and the way it responded to things, and I tried to explain it to others – some who really ‘got it’, others who tried to, and some who didn’t.
I am very lucky that my boyfriend got it from the start. His dad has had ME/CFS for 40 years so he is familiar with chronic pain and fatigue and knows just how to support me and my condition. However, I’m very independent and I like to be busy, so my biggest fear was that I would become reliant on his support – physically and emotionally.
Thankfully, as I started to understand my body, I identified my triggers and I developed coping strategies. I soon went back to work, moved in with my boyfriend and we got back to our ‘normal’ way of life – working hard and playing hard. The problem with that, of course, is that I got cocky. I quickly learnt my old life and my new condition didn’t really work very well together, and so I spent a lot of time pushing myself to be the old me, trying to do everything on my own, only to find I would flare up and crash a few weeks later. The harder I pushed myself, the longer I crashed.
And then, in 2013 – four years after I first became ill – things changed. I had a bit of an epiphany moment where I realised I really had to change my routines and find a new way of living, and so I started this blog. A Life Less Physical has probably been my biggest achievement to date. I needed to try and find new hobbies that would keep me busy and having fun but that didn’t require quite so much physical activity and, after a while, the hunt for a life less physical became an activity in itself. I started the blog as a way of recommending fibro-friendly things to do but pretty soon I realised the blog itself had focused me. I started writing about coping with Fibromyalgia and as I learnt new strategies for managing pain, I would recommend these to my readers. I’ve made connections with fellow Spoonies across the world, and discovered social media is the perfect place to meet like-minded fibromyalgia sufferers without having to leave your sofa.
I am by no means perfect at managing my pain, and I often have to remind myself to take a bit of my own advice. I work full time, I write almost every day, and I am always trying to find new things to do – if only to make sure I have something to blog about! I’m forever being told I don’t rest enough, and consultants have recommended I reduce the amount I work in an attempt to balance my energy and my flares.
However, though it may seem like I’m not giving myself enough rest, I don’t make a single decision without thinking about my ability and my pain. Managing my body and my symptoms are now parts of my daily routine; a fibro-friendly way of life is at my core. I recently wrote,
“Once upon a time, my pain was something that made me different to others and for that I was angry. Now my pain is something that makes my blog different to others and for that I am surprisingly grateful.”
Fibromyalgia is, quite frankly, an incredibly weird condition. It’s unpredictable, it’s mysterious, and it’s very difficult to cope with because our medical professionals haven’t cracked it. There’s no treatment plan, no support nurse, no guidance, no proven medication. Advice is contradictory, most GPs seem dismissive, and learning to manage our pain on our own is exhausting. Like so many chronic pain conditions it’s an emotional rollercoaster. But, having failed at managing my pain quite spectacularly in those early days, I think you have to go through that disaster before you learn how best to manage it and what works for you.
I’ve been trying to work out how to write this blog post for months but it’s been sat in my draft folder because, apparently, I’m not very good at managing work and rest. In fact, when I told R the title of this post he said, “I assume you’re getting a guest blogger in for this one.” Funny guy.
But then, in December I heard a programme on Radio 4 on this very subject and it began with a very important point…
You can’t have a conversation about how to manage work and rest without defining what each of those things mean to you. Work (or certainly, office work) used to be something that happened between the hours of 9am and 5pm; we left the house to go to work to make money, and then we came home to rest. Technology has now blurred these lines and society is changing; we now have the ability to work from anywhere, we are contactable all of the time, and many of us say we feel rested after doing something we enjoy – not necessarily something that involves being at home. We go away for the weekend to rest, using our rest time to explore new cities and do more stuff. But what’s that they say; a change is as good as a rest?
It is therefore up to each of us to define what ‘work’ and ‘rest’ means to us and how much we need of each.
For me, the activities are very blurred but how I interpret them is very clear. ‘Work’ means doing something because I have to – and usually at a time when I would rather not be doing it. On the other hand, ‘rest’ is everything I do by choice because I enjoy it and because I feel better for having done it. That means that if, for example, I have to go and see friends and I’m not in the mood then it can feel like work, and if I’m sat on my sofa in my pyjamas and start researching an exciting work project then it can still feel like rest. The supermarket is work (I hate going to the supermarket), the hairdressers is work… work isn’t necessarily something I get paid to do, it’s something that takes effort and time when I’d rather be doing something else.
I get criticised time and time again by people (incredibly sweet and caring people, I should add) who think I work too much and don’t rest enough, but if we’re working from different starting points then it’s no wonder we can’t reach an agreement in this ongoing conversation.
When it comes to my job, I’m pretty anti the 9 to 5. As someone with a chronic pain condition, there are some times when I feel energised and motivated and I want to use those moments to be as productive as I can – even if they strike on a Sunday afternoon. Similarly, I want to be able to stay in bed when my legs just won’t get me down the stairs or my neck can’t hold up my head. Unfortunately, the problem with this great picture is that employers haven’t quite caught up with the fact that whilst many of us work during home time, they’re not very good at letting us be at home during work time.
This made me chuckle
I do recgonise that there’s a limit to all of this, and that everyone is different. Not everyone wants to blur those boundaries and not everyone should have to. Plus, this approach is really only justifiable if I make sure I’m getting some good rest alongside all that work, and that becomes a much harder argument when I’m unwell.
The thing with managing work and a chronic illness is that only you can work out what is tolerable. I work a full time job with fibromyalgia and regardless of how much of it is enjoyable, it still takes effort and energy. It uses my spoons. Every time I’m struggling and flaring, someone tells me to phone in sick.
Here’s the thing about phoning in sick when you have a chronic illness…
If I wake up and I’m in pain and I phone in sick, at what point do I go back in? If I stay at home until I’m pain free, I’ll be at home forever. If I phone in sick when I’m in pain then there’s got to be something that tells me it’s okay to go back to work – and I’m not sure what that is.
I could set myself a limit like, if my pain hits 8 out of 10 on the pain scale then I’ll phone in sick. But I bloody hate the pain scale. I have no idea what an 8 out of 10 feels like, and there are days when I hit 10 out of 10 and then discover oh hang on, it can get worse. Every time a specialist asks me to rate my pain out of 10 I could scream.
Edit – A reader recently reminded me that for many of us with chronic illnesses, there comes a point when we have to make a choice. I choose to work full time, but that means sacrificing a social life after work and carefully managing what I do at weekends. I choose to put my energy into my job, and that is my choice. In the future it may change but for now, that’s how I roll.
Writing this post, I know that regardless of the way I categorise it, I need to manage my health and I need to balance work and rest. That might not mean striking a difference between my job and my home life, but it still means drawing a line between things that give me enjoyment and energy versus things that drain me and leave me tired and frustrated.
So how do you rest? We all talk frequently about a work/life balance but if the lines have been blurred and we can no longer separate one from the other, it’s up to each of us to define the difference and manage it in a way that works. I know I can get sucked in to the work side a little too easily but in general, I feel like I’m getting better at finding ways to relax and I’m confident that I have a model that works for me.
How do you manage work and rest? Have you found the balance?
2017 was one of my favourite years ever. I went to Canada and New York, I got a wonderful new job, and I realised for the first year ever that I wasn’t planning for anything. In 2017, I was content.
The end of 2017, however, was pretty bad – health wise. I knew that I had run myself in to the ground with not so much as a glint of light at the end of the tunnel, and I feel like managing my health has become harder than ever before. Therefore, the theme of this year’s resolutions is: balance.
Image via Don’t Get Serious
Last year I set myself five resolutions and achieved four out of five, which is probably a personal best. I failed to send birthday cards to my friends though which should have been an easy one, so I’m carrying that one over. Here are my four new ones:
One for the mind: Read more. I currently use all my spare time for work and I can’t remember the last book I read from start to finish. I’m kicking off this year’s resolution by reading my sister-in-law’s debut novel, The Mermaid and Mrs Hancock. Check it out and keep an eye on Imogen Hermes Gowar.
One for the body: Swim, godamnit. Swim. I’ve been trying to get back in to swimming for three years, and it still hasn’t happened. It’s the next step in my plan for managing pain, and I will force myself in to a swimming pool this year if it kills me.
One for others: I am lucky enough to be given five days of volunteer leave per year at my workplace, but I have only ever used three because the year gets busy and I inevitably run out of time. This year I plan to use all five, four of which I’ll use for local causes that I’m passionate about, saving one for my family’s charity BEFSA – which aims to reduce poverty through education in South Africa.
One for me: Last year I kept to the resolution of blocking out ‘free weekends’ in my diary to make sure I always had a free weekend each month. It was brilliant and I very much plan on doing it again. Who knows, I could even use that free weekend to get back on top of this blog and become a regular poster once again?!
At the beginning of 2017 I shared my obsession with binge-watching TV series and gave you a list of 50 programmes I insist you go and watch immediately.
This year has been no different. Box sets have seen me through many a bed-ridden day, so I thought I’d recommend 20 new ones to see you through 2018.
So, let me begin.
Detectorists – Image via British Comedy Guide
#51 Detectorists. Someone commented on my previous list of TV series and recommended Detectorists, a light-hearted series about two friends in search of buried treasure in their home town with nothing but big dreams and a couple of metal detectors. It’s wonderful.
#52 The Path. I missed Aaron Paul when Breaking Bad ended so was delighted to find him in this Hulu series about a spiritual movement which, beneath its peaceful surface has darkness at its core.
#53 Silicon Valley. Brilliant comedy series about a group of ‘nerdy’ guys who try to make it big in the tech world.
#54 This Is Us. An addictive drama about the Pearson family, which swings between their life in the 70’s as young children and their complicated thirty-something lives. It has Mandy Moore in and I loved her.
#55 Unreal. I kicked off the year with this fictional series about the production team behind a hit reality TV show. It’s funny and dark, and made me seriously wonder about what goes on behind the scenes of Made in Chelsea.
Santa Clarita Diet – Image via Netflix
#56 Santa Clarita Diet. I love Drew Barrymore at the best of times, but Drew Barrymore as a zombie mum living in American suburbia is even better. I love this show!
#57 Braindead. This series about aliens invading earth and eating the brains of US politicians was pretty great. I’m not entirely sure why I loved it so much because it’s not ground-breaking TV but it has good characters and witty banter. Thumbs up.
#58 The Moorside. This BBC series is based on the real life kidnapping of 9 year old Shannon Matthews on the Moorside estate in Yorkshire. It’s brilliantly done and well worth the watch.
#59 Parks and Recreation (again). This featured on last year’s list so I’m sorry for the repetition, but I watched it again this year – all seven series of it. I love it I love it and if you only watch one thing on TV before you die please let it be this.
Master of None – Image via Yahoo
#60 Master of None. Oh I loved this! Aziz Ansari is a struggling actor living in NYC and shares stories from his life as he searches for work, love and his place in the world. I absolutely adored this series and will watch it again very soon.
#61 Three Girls. A three-part BBC series based on the true stories of three girls who were victims of the Rochdale sex abuse ring. It’s absolutely horrendous in parts and but well worth a watch if you can cope with the subject matter.
#62 The Handmaid’s Tale. Based on Margaret Atwood’s novel where fertile women are property of the state and are kept in sexual servitude, used to provide children to wealthy infertile couples. Brilliant, but not jolly.
#63 Glow. Now this is jolly! Set in the 1980’s, this Netflix drama is about out-of-work actresses who sign up to join a women’s wrestling club, in the hope they will create a following and make their fortune.
#64 The Good Place. Kristin Bell being brilliant as usual in this light-hearted series about a group of people who find themselves in the afterlife, and are relieved to have been sent to The Good Place. But all is not quite as it seems. (Dun-dun-duuuuun.)
Fortitude – Image via Den of Geek
#65 Fortitude. Set in a quiet town in the Arctic where nothing ever happens, members of the community start suspecting each other as people start dying. Two of my favourites star in this brilliant drama: Sophie Gråbøl and Stanley Tucci.
#66 Mindhunter. Two FBI agents interview a number of serial killers as they try to make the case that understanding the psyche of mass murderers will help to reduce these crimes in the future.
#67 Ozark. Starring Jason Bateman (who is always great) as the husband/father in a family of four who has to relocate after a money laundering scheme goes wrong.
#68 Dawson’s Creek. If you haven’t seen Dawson’s Creek, I’d like to question what you were doing with yourself in the 90s. And if you’re not in love with Pacey Witter, I’d like to questions your ability to see and hear. Re-watching this and loving it.
#69 Fringe. This is brilliant. Olivia Dunham is an FBI agent who investigates weird and unusual events with the help of a retired scientist. It’s witty and heart-warming – it also stars Joshua Jackson who is as great in this as he is in Dawson’s.
#70 Halt and Catch Fire. I’m finishing this list with the best thing I watched this year. It begins in the early 80s and follows the lives of four people at the heart of personal computing and the start of the internet. It is everything and I utterly adored it.
Halt and Catch Fire – Image via AMC Latin America
And that takes us to the end of this year’s recommendations. Enjoy!