Christmas is well and truly upon us. It seems to have snuck up from nowhere like the little festive pest that it is. Don’t get me wrong, I absolutely love Christmas, but I have learned over the last couple of years that it is quite possibly the least M.E friendly time of year. The cold, damp weather often causes a huge flare up of symptoms and makes it even harder to get out of the house. Add to that the never-ending shopping list, decorating a tree, writing and sending Christmas cards plus the expectation to join in all the festive fun and Christmas often becomes a one stop trip to Crashville.
Of course, Christmas is a busy and tiring time of year for everyone but when you are physically limited it can feel so overwhelming and often acts as a stark reminder of the loss of independence that this disease often brings. It can be so frustrating to have so much that you want and need to do at this time of year, but be physically unable to just go out and do it. If you know someone who suffers with a chronic illness like M.E, chances are that you often feel equally as frustrated that there isn’t more that you can do to help. But the fact is that so many of us would benefit from some extra help at this time of year, so I’ve compiled a short list of simple, easy ways that you can support your chronically ill friend this festive season.
1. Gift Shopping
Giving thoughtfully chosen gifts to our loved ones is something that most of us like to do at Christmas, however brain fog and lack of energy can make Christmas gift shopping a near impossibility for many people with M.E. It can be extremely disempowering and frustrating not to be able to go out and do something like this for yourself, and many of us have to do our shopping online. I usually like to support smaller, independent businesses to find more personal, unique gifts but even on the days that I have a little energy for some shopping, I would still need someone to drive me and push me in my chair. This can make shopping for one’s partner very tricky when they are also your carer because you are rarely out of the house without them.
If you have a friend in a similar situation, there are several things you could do to help. Ask them to write you a list or send photos of the things you had in mind and offer to do their shopping for them, or if they’re able, offer to drive them into town and, in my case, push them around in their wheelchair for an hour to help them get a few things ticked off the shopping list. Or finally, on a slightly grander scale, you could help them to fight for better accessibility in public spaces.
2. Christmas Cards
I know that not everyone is into sending Christmas cards, but I personally find it a really simple but lovely way to let people know that you’re thinking of them this festive season. Particularly long-distance friends who you don’t get to see very often. Unfortunately, even sitting up and writing Christmas cards can be exhausting for people with M.E. Just last night I sat at the table and wrote five cards, then had to lie down for half an hour because my arms were aching, and I was getting a headache and shaky hands. Again, this can be so frustrating because often these simple Christmas traditions can mean so much to us.
If you have some free time you could help by offering to come over one evening and write your friend’s Christmas cards for them, or do them together. Ask them to write you a list of names and get to work helping them get through their list. You could be extra helpful by then offering to post the cards and, if you’re going for friend of the year, you could even bring mince pies to enjoy together while you write. Writing and delivering Christmas cards may sound like a small thing, but it would mean one less Christmas job for your chronically ill friend to worry about and would save them some valuable energy.
We all know that one of the best parts of Christmas is the food, but food shopping and cooking are such high energy activities for people with chronic illnesses and when you’re already suffering from a flare up of symptoms during the winter months, it can make this task extra difficult. Simple things you could do to help are, again, offering to do some food shopping for them to make sure your friend at least has plenty of food in. Or you ask them when they are having their online shopping delivered and offer to come over and put it away for them, which is another high energy task that many people with M.E simply can’t manage.
If you wanted to go the extra mile, you could offer to batch cook a few healthy, filling meals that can be kept in the freezer so that all your friend has to do to get a healthy meal is ping it in the microwave. I know that Christmas is an expensive time of year for everyone, but if you can afford it this would be an amazing gesture to show your friend that you care. Many people with chronic illnesses can’t cook for themselves and often have to rely on microwave meals or quick, easy snacks just to make sure they eat something. We all know that eating rubbish makes you feel rubbish, so having easy access to healthy, home-cooked food would be such an incredible act of kindness and love for your chronically ill friend. Not only that, you’d be saving them precious energy that could be used for something else a little more festive and fun.
4. Gift Them Your Time
I’m sure that most of us are aware that Christmas can be an especially hard time for those who don’t have a lot of family or friends around them and for those who are suffering from loneliness, which many people with chronic illnesses do. Everywhere we turn at this time of year we are bombarded with images of large family gatherings, Christmas parties with friends and an abundance of gifts, decorations, food and fun. This is sadly not the reality for many chronically ill people, and all of these messages can make this time of year exceptionally emotionally difficult.
The best way you could support someone with this is to simply gift them your time and attention. I know that Christmas is a busy time for everyone, but when you’re housebound or bedbound and everyone else is busy with shopping and parties, it is very easy to feel forgotten about and left behind.
It’s so important to let people know that they are not alone at this time of year. Offer to come over one weeknight and watch a Christmas film together or set aside an hour on a Saturday morning to call in for a quick coffee. Making time for your chronically ill friends is so important. It shows them that they haven’t been forgotten and that they are still valued. Of course, not everyone with M.E is able to tolerate company but even just checking in via text or a quick email can mean so much at this time of year when so many are suffering loneliness.
Please remember that this really is the best gift you could give to a chronically ill friend who may be finding this time of year especially difficult. When you’re stuck inside your house or in bed all day, it can often feel as if everyone’s lives are just carrying on without you and you are being left behind, alone. By carving some time out of your busy Christmas schedule to just simply be with your friend you are showing them that they still matter to you, and that you haven’t given up on them.
If you are finding this time of year difficult, here are some useful links to organisations you can turn to for support in a crisis:
If you are someone with a chronic illness who is suffering loneliness, then try finding a community online. There are hundreds of forums via different charity websites where you can chat to people in a similar situation, and you’ll always find support in the chronic illness community on Instagram. Social media has been a life saver for me. If you’re unsure where to start, follow me (@creamcrackeredblog), send me a message and I can connect you to some wonderful accounts where you’ll always find someone who understands what you’re going through.
Take extra good care of yourself and others this festive season,
[Ad – gifted]
[I was gifted this item free of charge, in exchange for an honest review. I will always disclose any gifted items, experiences or services and I will always give my honest opinion. I will not be swayed by payment or reward.]
This is the second of the two items I was gifted from Blue Badge Co., and again this was a product I felt that I would genuinely get a lot of use out of. I received the garden birds design, which I was chuffed about because I have recently developed an interest in bird watching - it's a really low energy activity that I can enjoy without using up too many spoons.
The cover retails at £18 and the price includes a free timer clock. There is a range of designs available and they are even offering a limited edition Christmas design, if you want to add a festive touch to your car.
The permit cover is hologram safe, meaning the plastic doesn't obstruct the hologram on your permit and you can display your badge in its holder whilst adhering to the legal guidelines.
Quality and Design
As with the tablet stand, my first impressions of the permit cover were that it was of a very high quality. My timer clock had started to get a little scratched up and worn from being chucked in my bag alongside my keys, and the numbers were starting to become a little faded so it's been brilliant to have something to protect my permit from wear and tear. The fabric is durable enough to be protective, but lightweight enough that it doesn't add too much bulk or weight to my permit and is still very easy to carry around, which is important when you have limited mobility or suffer from any kind of chronic pain issue.
I also found that the blue badge consisting of two separate parts meant it could be a little fiddly at times. I'm quite a clumsy person anyway, so I was forever losing my clock timer or dropping my badge when trying to retrieve them both from the glove compartment. Having a wallet to securely hold both items has made it easier for me to place it and retrieve it from the dashboard with considerably less energy and clumsiness than before.
The Importance of Style
As we in the disabled community know too well, so many products designed for us are lacking in style or flair. Something I like about the permit cover is that it makes my blue badge feel a little more like a stylish accessory and not just a clinical, government-issue aid. The different designs on offer are fashionable and will appeal to a range of tastes, and honestly it's just nice to have the option to style out your aids in the same way you would any other kind of accessory.
I know I can't speak for everyone, and I would never presume to, but when I first became disabled I found that I had internalised so much ableism throughout my life that it took me some time to get comfortable using any of my mobility/assistive devices out in public. I think that having the option to add a bit of personal style to your aids can help them feel a little less intimidating and help you begin your journey to becoming proud of your disabled identity.
I'm really pleased with my parking permit cover and have enjoyed using it whilst out and about at appointments this last couple of weeks. It's just a really stylish way to protect, store and display your permit and generally makes it easier to handle. They have a range of matching items available too, if you'd like to coordinate your accessories.
I do think that £18 is a lot of money to spend, especially if you don't have much to spare, but again I've done my research and have found that although there are some cheaper options available, the designs are basic and the fabrics don't look as attractive or high quality. If you are looking simply for function, then you could find a cheaper option, but if you want quality and fashionable design, as well as a company that employs and supports disabled people, then I highly recommend opting to spend a little more and buy a Blue Badge Co permit cover. They’ve still for some Black Friday discounts available on some products, so now would be a good time to pick up a a bargain.
Again, my only real complaint is that they’ve yet to add a cat design.
[Ad – gifted]
[I was gifted this item free of charge, in exchange for an honest review. I will always disclose any gifted items, experiences or services and I will always give my honest opinion. I will not be swayed by payment or reward.]
I have been a fan of Blue Badge Co.’s products for a while now and even had a few on my Christmas list, so I was thrilled to have the opportunity to work with them by reviewing one of their products. Blue Badge Co. was the first company I came across that was creating affordable, stylish products for disabled people and recognising that we still enjoy quality, fashionable design like anyone else. So many companies providing mobility aids or assistive devices offer up pure, clinical functionality with no thought whatsoever given to style. Blue Badge Co. is a breath of fresh air in comparison.
I was gifted the Fabric Tablet Stand in the sausage dog design (pictured above) and was excited to try it, as I’d had my eye on it some time. As someone who is predominantly housebound with M.E, I spend much of my time lying in bed or on the couch using either my phone or tablet to blog, read, watch box sets and generally keep in touch with the outside world, so I knew this was a product that would come in extremely handy for me.
Quality and Style
My first impressions of the tablet stand was that it was of a very high quality. The design and colour of the fabric is fashionable, and I can imagine it will appeal to lots of people. The fabric is strong and durable, yet soft enough not to aggravate any sensory issues for people like myself, who are extremely sensitive to rough or highly synthetic fabrics.
The stand retails at £18 which I initially thought was a little on the expensive side. However, after having researched other, similar products available from different companies, I found that Blue Badge Co.’s tablet stand is actually very competitively priced and has the added bonus of a wide range of fabric designs to choose from; offering a more personalised product which will appeal to more individual tastes.
Assistive and Enabling
As someone who suffers from chronic pain, I often struggle to hold up my tablet or phone for long periods and I have all but given up on reading, in part due to brain fog, but also because it exhausts me to hold up a book or my e-reader. Holding up a book or tablet, even just for 15 minutes, causes my neck and shoulder pain to flare up and my heart rate to elevate, which means I haven’t been able to do much reading at all over the past two years.
I’ve been using my tablet stand every day for the last week and have found that it has genuinely made a difference to how long I can manage to use one of my devices by relieving the pressure on my arms and hands. This has been a real gift as it has enabled me to do some long overdue work on redesigning my website and make a start on rereading A Christmas Carol, which I love to read every year in the build up to Christmas but haven’t managed to keep up for the last few years. These may sound like very small wins to other people, but in the chronic illness community we know that small achievements like this can make such a big difference to our mood.
The stand sits easily and stably on any surface, without any wobbling or leaning. I have used it all around the house this week - on my lap, my couch, my bed, my bed desk - and it sat reliably on all four. Another feature that I really liked was how lightweight the stand is, so that it doesn’t cause any discomfort when using on your lap and is easily transportable. It has a tab handle on the top which is easy to grip in order to carry the tablet, however, if you have limited mobility or grip in your fingers, the fact that the stand weighs very little means it takes no effort or strength to move it around the house with you. It’s little details like this that shows me that, unlike other companies offering similar products, Blue Badge Co. puts the needs of their customers at the heart of their designs.
In Good Company
I can honestly recommend the fabric tablet stand very highly to anyone who frequently uses a tablet, smart phone or e-reader, but especially to those who are often doing so lying down because it makes viewing, scrolling, reading and writing so much easier when your arms are not having to do the extra work of holding up the device. The stand is high quality, durable, lightweight, stylish and well designed and I know it’s something I will continue to use daily. My only real complaint would be that there is no cat design available yet!
Finally, in preparation for working with Blue Badge Co. I researched the company and its ethos as I would never want to work with or recommend a company whose core values I didn’t agree with. Of course, I knew from their products alone that Blue Badge Co. are a company committed to helping disabled people live more comfortably and independently without compromising on style. What I didn’t know is that over 40% of their workforce are either disabled or primary care-givers. Not only does this reflect a company that is committed to providing meaningful employment for those with limited work options, but it also means that the team has first-hand knowledge of the types of products that will be beneficial to disabled people.
I don’t know about you, but that is the kind of company that I want to spend my money with.
Does this sound like a product that would be useful for you? What kind of designs would you like to see? Let me know in the comments.
Despite some of his more questionable theories, Sigmund Freud was right about one thing: “time spent with cats is never wasted.” For those of us who are lucky enough to have a little feline friend at home, this statement rings true. Cats make excellent companions, especially to those of us who are chronically ill and are perhaps in need of a little more companionship and comfort than most. Our cats can make us laugh, provide much needed company and cuddles, and give us a reason to get up each day, no matter how terrible we might be feeling.
More than just being our adorable little pals, however, our cats could also teach us a thing or two about priorities and how to live our best, chronically ill lives. I’ve spent a lot of time observing my cats over the last couple of years and have decided that these are three of the most valuable life lessons we could all take from our four-legged friends.
1. Prioritise Rest
Cats are known to sleep for around 15 hours a day, on average. If you have a cat, then you will also know that this sleep can take place in any location, at any given time of the day. From cardboard boxes, to kitchen counters, cats can and will sleep anywhere. Cats know that rest is the most important part of maintaining a happy, healthy lifestyle and yet, for us chronically ill humans, rest is often the most difficult skill to master. I know that many healthy, busy people might hear us complaining about rest and scoff; thinking how nice it would be to have more time to stop and recuperate. However, when you need to rest as often as we do, you’ll know that it doesn’t always come easily and it isn’t quite the holiday that many assume it to be. Going from having a normal, busy life to suddenly needing to prioritise rest above all else is not an easy transition.
There is also a lot of internalised ableism wrapped up in the idea of rest. Quite often, we humans view rest as something that needs to be ‘earned’ by being productive and many of us struggle with feelings of laziness when needing to take several rests throughout the day. This is where we need to start taking inspiration from our furry companions. It doesn’t matter to cats if they think they’ve ‘done enough’ to earn a good rest, or if they have a to-do list as long as their tail. Rest takes precedence. If all a cat has accomplished that day is to eat and chase dust mites, they will still take a little cat nap whenever they please. I know that for us humans it really isn’t that simple, but I think we could all benefit from having a more feline approach to rest. When your cat takes a nap, take your cue from them. Find a comfortable position (maybe not the kitchen counter) to lie down, or cuddle up with your cat, close your eyes and take some deep breaths. Allow your body and mind time to switch off. I find that listening to my cats’ purrs or their snores can be very soothing. In fact, it is scientifically proven that the sound of a cat purring can lower stress levels and blood pressure in humans. All the more reason to love them!
I know that many people find it difficult to switch off, but whenever your cat takes a rest just use it as a little reminder to check in with yourself. How are you energy levels? How is your pain? When was the last time you took a rest? Prioritising rest and making little pockets of time for it throughout the day is a huge part of managing your illness. Even if all you accomplish today is rest, remember that you are not being lazy; you are giving your body exactly what it needs. Think of it as an act of self-care. Cats certainly do.
2. Setting Boundaries
Have you ever seen a cat put up with anyone’s bullsh*t? Absolutely not. Cats are the masters of setting boundaries and we could all benefit from following their lead. While I am not for one minute suggesting you go around slapping and hissing at people, I do think it’s crucial for both our mental and physical health that we communicate our boundaries with people.
Try as they might, it is extremely difficult for our friends and loved ones to truly understand what it’s like to live with a chronic illness. Nobody else will understand the intricacies of your access needs or your symptoms, so it’s crucial that we speak up and make our needs known. Think like your cat - if something doesn’t feel right to you, slap the person nearest to you. Whoops! I mean, speak up. If someone is saying or doing something that is hurtful to you, let them know. If an activity is too much for you or causing a flare up of symptoms, think like a cat and be assertive. Teaching people how to treat us is a process that involves educating them on what is acceptable and what is unacceptable, it is knowing what we need and want and being able to communicate this effectively. So don’t be afraid to make your needs known, and to be assertive enough to set clear boundaries. Not only does this teach others how to treat you, but it also teaches us how to treat ourselves. In learning to recognise and respect our own boundaries, we are also learning not to push ourselves to do more than our bodies are capable of.
3. Be Curious
Contrary to the old saying, curiosity won’t kill the cat, nor will it harm us humans to foster a more curious spirit. Cats are naturally curious about everything in their world – new smells, new people, new sounds. While the idea of exploring the new and the unknown can often feel scary to some people, it can often lead to discovering new interests and learning new things about yourself. For many of us, chronic illness has completely derailed life as we knew it, and we have had to adapt to a ‘new normal’. Most hobbies that we had before are now inaccessible to us, and we lose a lot of the things that previously brought us joy and excitement. This is where curiosity comes in.
Have you ever watched your cat try to catch a beam of light on the wall? Have you noticed how long they can sit and observe the birds for, or how much interest they can take in a dangling shoe lace? Cats take an interest in the seemingly most insignificant things, they act on their whims, caring not for the opinions of others. Have you always fancied yourself a bit of a wordsmith but never been brave enough to give writing a go? Follow that interest now and see where it takes you. Do you have a secret interest in birds? Research different types of bird feed, buy a bird book and make your garden into a little bird sanctuary that you can enjoy from inside, even on your worst days.
By being curious about new interests or new opportunities, you might discover new sides of your personality. I never considered myself much of an insect lover, but after having spent time in my garden observing the different types of insect life going on, I have since discovered an interest in insect conservation and now my garden is a little hub of activity that gives me a strange kind of pleasure to observe. Granted, it’s not the coolest of hobbies but does a cat care about how cool he looks when he’s dangling off your shoe lace? Of course not, so neither should you.
Don’t be afraid to follow where your curiosity leads you, you might just surprise yourself.
I became a wheelchair user two years ago, and in that time I’ve really had to work through a lot of anxiety and internalised ableism to become comfortable using my chair out in public. It hasn’t been easy and I still have my wobbles, but I’m now at the point where I feel love and gratitude towards my little Hot Wheels, because it enables and empowers me to do more of the things that bring joy to my life.
An important and ongoing part of this journey has been having my eyes opened to the experiences of disabled people in a world built entirely for the able bodied. I know that for any long-time wheelchair or mobility aid users who may be reading this, this will all be Disability 101 preached to the choir. However, these are three lessons that I feel have been important for me to learn, so I’m sharing them in the hopes that it will help abled people to be better allies to their disabled friends and loved ones.
1.The World is Not Built for Disabled People
Hand on heart, I will admit that I had never given that much thought to accessibility and what it really means, until I became a wheelchair user myself. Previously, I have been guilty of thinking that accessibility just meant ramps and lifts. If wheelchair users could physically enter a building, then that means it’s accessible. Box ticked; job done. How woefully wrong I was. My eyes have been well and truly opened now though and let me tell you; we still have a long bloody way to go in making the world accessible to wheelchair users, and disabled people in general.
Since becoming a wheelchair user, I have realised that it is no longer possible to just leave the house and head to my destination. Instead, so many questions must first be asked and answered. Will the street outside be wheelchair friendly? Is there disabled parking available? How far is this disabled parking from the entrance to the building? Will there be steps at the entrance? Will there be a lift? Does that café/restaurant/shop even have space for me to manoeuvre a wheelchair around? The list goes on.
So, with all this in mind I have a little assignment for you. Next time you’re out walking in your area, I’d like you to pay close attention to the following: the quality of the pavements, the number of cars parked on them blocking access, and how many dropped curbs actually have a corresponding dropped curb on the other side. Now imagine trying to navigate all of these issues with a wheelchair, a walker, or a cane. If you stop off at a café for a quick coffee, take a glance around and see if you think there is enough space in between tables to get a wheelchair in? Is the doorway wide enough?
Next time you pop to the supermarket to get some food shopping done, pay attention to how many disabled parking spaces there are compared to the hundreds of regular spaces readily available. Now notice how many people are bold enough to use these already limited spaces without a blue badge. And all that before you’ve even had to navigate the supermarket itself with so many things being out of your reach, cages blocking access and people yelling at you for taking up space in the aisle with your wheelchair.*
Of course, there are some venues that are doing a decent job, with many more beginning to take steps in the right direction, but you truly would be amazed how largely inaccessible the outside world still is and how entirely unwelcoming it can feel to disabled people.
*Yes, this actually happened to me in Lidl! Next time I see that grumpy, ableist bastard I’ll free up some more aisle space by wheeling over his bloody feet.
2. A Ramp Alone Does Not Accessibility Make
Now that we’ve thought about navigating the street outside of your house, and a simple task like getting to a café or the supermarket, let’s think about going to a big event like a concert. So many places believe (as I once naively did) that by having ramps and lifts, that makes them an accessible venue. Yet, before you even get to the venue you are met with roadblocks. Wheelchair users can’t actually book tickets in the same way as everyone else. For a lot of venues, wheelchair users first must check if the venue is even accessible in the first place. Then we have to ring a special number to and try to quickly reserve one of the (again, limited) wheelchair accessible seats.
Once you have managed to reserve one of these limited seats, many venues will now ask you to provide proof of your disability. You know, just in case you’re one of those people who pretends to need a wheelchair for the lols. If, like me, you’d think that presenting your blue badge would be evidence enough, you’d be wrong. This is where many venues will think nothing of asking you to provide personal medical information as proof that you are a 100%, medically approved, bona fide disabled person. And once you have been through all these steps, you can but pray that your seats will actually be accessible. Previously, I attended a gig at a venue which claimed to have a ‘accessible viewing platform’ for wheelchair users. In reality, said platform was little more than about 5 inches off the ground, meaning that all the people standing up at the gig were blocking my view anyway. And the icing on the cake? There was no ramp to get up on to the plinth.
*Insert face palm emoji here*
So hear this, venues of the UK: if disabled people must go through an entirely different, much more time consuming and convoluted process to access tickets to your venue, before then being asked to provide private medical details to complete the sale of their ticket, this does not make you an accessible venue. You can have all the lifts and ramps you like, but if you’re still making disabled people have to work ten times harder just to access something that everybody else can do with a few clicks on a website, you need to rethink what accessibility actually means.
3. Hands Off
We all like our personal space, yes? We would all be a little bit unsettled if a stranger just casually came over and leant on our shoulder or physically shoved us out of their way? We’d be pretty angry if someone just came and hung their coat or our shopping bags over our arm without asking? We’d all think this was inappropriate, and probably feel a little like our space or even our body had been a little bit violated, wouldn’t we? So, riddle me this: why do some people think that these rules don’t apply to wheelchair users?!
One of the most eye-opening lessons for me since I started using my chair, is that the relationship between a person and their mobility aid is often complicated, sometimes fraught but always deeply personal. To wheelchair users for example, our chairs are not simply a functional piece of furniture that gets us from A to B like a car. The connection that we feel to our chair is not merely a material one, it is much deeper than that. Our chair is an extension of our own body. It is our personal space. We feel protective of it like anyone else, and yet so many people think nothing of invading this space when we’re out in public.
I was recently at a Tattoo festival in Scotland with my husband and we had managed to reserve a space close to the front, from where we had a brilliant view of all the proceedings. There were food vans around, and my husband left me alone for about 15 minutes to go and grab us something to eat. In that time, the gathering crowd grew significantly as the event was about to start. At one point, I was just sat watching the world go by, patiently waiting for my pizza when suddenly someone approached me from behind, grabbed the handles of my wheelchair and tried to push me forward. I had both my brakes on, so I kind of just got shunted forward aggressively. When I turned around, a man apologetically told me he was just trying to squeeze past. Since when did ‘squeeze past’ mean physically grab hold of someone from behind, without warning, and attempt to move them without their consent?! It was such an unsettling experience and I wish I could tell you it was rare, but you would be amazed.
In my relatively short time spent using a wheelchair I have had complete strangers lean on my handles, use my arm rests as their own and put their feet next to mine on my footrests. Complete strangers! Can you imagine being sat on the bus and a stranger just nonchalantly resting their legs over yours without saying anything? You’d change seats then keep one eye on them at all times, fearing they were a serial killer. But when people do this to me in my chair I’m stuck, just casually trying not to combust with rage at having my personal space so weirdly invaded.
Not only is this deeply offensive, as it suggests that you are failing to recognise the person actually in the chair, it is also just downright bad manners. Try to remember that just because we’re disabled, we are not saints and we are still capable of much more than you think.
By which I mean we will hurt you and make it look like an accident.
Having M.E is a bit like being the donkey in Buckaroo. Bear with me, I’m going somewhere with this metaphor. You’re carrying so much stuff around, just barely keeping it all balanced, that all it takes for the whole thing to come crashing down is for someone to try to add that pesky banjo to the mix. Sometimes the banjo can be something physical like socialising for a few hours, other times it can be something mentally draining like feeling anxious about an upcoming appointment. At some point, the already precarious balancing act will take on one extra weight too many and, just like that: Buckaroo! Everything comes crashing down.
If you suffer from a chronic illness like M.E, then you will know how profoundly these crashes can affect your mental and emotional wellbeing. It’s often in these moments where I suddenly feel completely overcome by the sheer effort of getting through each day with an illness like this. It feels like hitting rock bottom again and I’m often left wondering how long it will take to crawl my way back up this time. The constant balancing act of symptom management and the gargantuan effort to remain positive in the face of it all can often become overwhelming. It can leave you feeling hopeless, frustrated and a little bitter.
Before getting sick, we all had plans and ambitions like everyone else. Yet now we must shelf these dreams and learn to accept life as it is now: limited and so very different from what we had hoped for, with no real possibility of a cure on the horizon. It’s in these moments of negative rumination that my mental and emotional wellbeing takes a huge dip, and this is neither a fun nor healthy place to be. I must, therefore, make a continued effort to not let thoughts like this consume me and to focus on finding happiness and contentment in the small and simple things.
Over the last two years I’ve developed several coping mechanisms that help to sustain my emotional and mental wellbeing. It has been a huge learning curve and I’m not claiming to be some kind of guru, but I hope that by sharing what works for me I might be able to help others in my situation:
In recent times it seems that meditation and mindfulness have become buzzwords around chronic illness, and they are often proffered as a magic cure for any and all ailments. While I do reject that particular notion, I must admit that I have found meditation to be extremely helpful since my diagnosis. I was first introduced to it at my M.E Clinic and was immediately cynical. First of all, I hate being still (which seems a cruel irony, given my current situation), I hated the weird, whispery voices that all the people on the apps used and I hated being told to “mindfully brush my teeth” or “tune into the sensations” of stroking my bloody cat. However, I was told it would be helpful in calming down my nervous system, therefore allowing my body to begin to repair itself, so I decided to put aside my cynicism and have a go.
It’s not easy to get started and, as is the case when learning any new skill, it requires practise. I’ve tried apps: Calm, Headspace, Stop Breathe Think and there are plenty of free guided meditations available on YouTube and Spotify. Stop, Breathe, Think has been my favourite because it asks you to list five things that you’re feeling in that moment and will tailor a guided meditation to your current mood or feeling. I’m not for one minute suggesting that meditation is going to cure you, but I genuinely find it helps to calm my nervous system throughout the day, particularly when I’ve overdone things and my body has switched into that “fight or flight” adrenaline mode that we hear so much about in M.E patients.
It’s not easy to ‘switch off’ your mind and it really does take some practise, but over time I’m beginning to find myself working it naturally into my day. I’m not saying I sit and reach spiritual enlightenment whilst stroking the cats, but I do find myself bringing my mind back into the present moment a lot more when it starts to run at 100 miles an hour.
Perhaps the most significant change brought on by meditation however, is my ability to focus on the really simple pleasures in my day, the ones that M.E hasn’t managed to steal: my morning cup of coffee, watching the bees at work in my garden, feeling the sun on my face or listening to the rain outside. I know this might all sound a bit twee, but it genuinely helps you to find pauses in your day to allow your mind to be still for a while and just enjoy the lovely little things. Give it a go, you might just surprise yourself.
There’s a running joke amongst the chronically ill that if you say the name of your illness into the mirror 6 times, someone will appear and ask, “but have you tried yoga?!” A word of caution to anyone who ever finds themselves wanting to suggest this to their chronically ill friend: don’t. Do not. In fact, take that idea and throw it into the depths of the sea, never to be heard of again. Having said that, yoga really has been an invaluable coping strategy for me over the last two years.
My illness means that I am forced to spend most of my days sitting or lying down. This is a far cry from my life pre-M.E, when I spent all day on my feet; dressing up, dancing around and generally existing for the consumption of a classroom full of 5 year olds. And that’s even before you factor in all the running, hiking and cycling outside of school. Being still really is not my strong suit.
Sometimes, with all the will in the world, I find that I am simply too restless, too worked up, too full of adrenaline (‘fake energy’ as they call it at my M.E clinic) for meditation to be effective. This is where yoga comes in. The gentle movement means that my restless limbs get to use their pent-up energy without over-exerting, while the concentration on breathing helps to slow down my heart rate and calm my mind. There are literally millions of yoga tutorials available on YouTube nowadays, but my advice would be to do your research carefully. Look for routines that are specifically tailored for people with M.E or CFS. Some of my favourites are Sleepy Santosha, Chakrapod and Yoga, My Bed and M.E. Each of these has routines tailored specifically to people with very low energy and strength. Most involve only sitting down postures, and some can be done lying down in bed.
I particularly like Yoga, My Bed and M.E because Donna herself suffers from M.E, therefore is extremely knowledgeable about what types of movements are going to be helpful and which to avoid. It’s also important to know your own limits and avoid any movements that cause pain or elevate your heart rate. The idea is very gentle stretching to keep your muscles and joints moving, and breath work to help calm and relax you. This is not supposed to be a hardcore workout. Namastay within your limits.
3. Do a Good Deed
I’ve heard it said that living with a chronic illness is a full-time job, and it certainly feels that way to me sometimes. Every waking moment of the day is dedicated to pacing, symptom management, resting, taking meds, checking in with pain levels, resting some more. Suffice to say that we spent a lot of time thinking about and focused on ourselves. Add being housebound to the mix and life can quickly become dull and lonely.
After a particularly long spell of feeling like this, I decided to look into volunteering opportunities that could be done from home, and that might be manageable for me. I came across a charity that supports older people suffering from loneliness. The role involved committing to a 30 minute phone call each week, something I felt was manageable within my energy limits. After an interview and some online training, I was matched with a wonderful lady with whom I share a lot of interests. Just 30 minutes of my week spent focusing on someone else, on something else other than M.E felt like a gift. Not only that, it gave me a sense of purpose again and made me feel I was doing something worthwhile, and I’m at the point now where I look forward to our calls because it feels like chatting with an old friend.
As is always the case for people with M.E, it is crucial that you only undertake something like this if it is going to be manageable for you. If it’s going to make your symptoms worse or tire you out too much, it isn’t worth it. Get creative and think of other ways you could do a good deed – even something as simple as writing a letter or postcard to a friend going through a hard time will give you that lovely warm, fuzzy feeling that you took the time to do something nice for someone else. In spite of everything the world has thrown at you, making the effort to spread a little kindness out into the world feels like taking back a little power.
4. It’s Good to Talk
I know that for many people with M.E, socialising is an extremely high energy activity that requires careful symptom and time management, and often leaves us feeling completely wiped. Especially those who suffer with severe M.E, for whom socialising is often completely out of the question. It’s no surprise, therefore, that so many sufferers report feeling lonely and isolated since becoming ill.
This means that many people with M.E and other debilitating conditions often turn to social media to socialise and keep up to date with friends. It took me a long time to be comfortable and brave enough to share details of my illness online, and I know that social media can often be a toxic environment that has to be carefully managed. Having said that, I can honestly say that nothing has been quite so therapeutic, so encouraging and so helpful as getting online and connecting with the chronic illness community on twitter and Instagram. When I started my Instagram account (@creamcrackeredblog), my sole aim was to educate the people around me on the realities of living with M.E, and to raise awareness of the mistreatment and lack of care available. What I hadn’t bargained for was the discovery of a community of genuinely cool, interesting and supportive people, many of whom I consider friends even though we’ve never actually met. I’ve been inspired, supported and challenged. I’ve had my eyes opened to issues surrounding chronic illness and disability that I was previously ignorant of, and I continue to learn from members of this wonderful, inclusive community. Not only that, I’ve also been given the opportunity to share my writing and be a part of some of the inspiring advocacy efforts of several M.E charities. I’ve found a sense of purpose again, after struggling with the loss of my teaching career, which has been invaluable in restoring my sense of self-worth and confidence in my abilities.
I know that not everyone is comfortable with sharing personal aspects of their lives online but I assure you that for every new symptom, worry or frustration you may experience on this journey, there are so many people within the online community who can relate, who will listen and are ready to hold you up and support you, or at least share photos of their pets to cheer you up.
In a community of people who suffer pain, ill health and marginalisation daily, there is so much warmth, humour and kindness to be found. It makes you feel part of something worthwhile and makes it that bit easier to face each day.
Finally, I want to say that I think it’s vitally important that we learn to talk about mental health as openly as many of us do about our physical health. Loss of health is a form of trauma. Living every day of your life feeling fatigued, in pain, housebound or bedridden, takes its toll on your mental wellbeing. It’s normal to feel sad, angry, resentful, bitter. While I think it’s important to allow yourself the space to feel these emotions, its just as important not to let yourself stay there for too long.
As wise old Dumbledore once said: “Happiness can be found in the darkest of times, if only one remembers to turn on the light.”
Below is a list of organisations you can contact if you are struggling and need someone to talk to:
This is a photo that my husband took me of this afternoon. Lying in a darkened room, wearing an eye mask because even the light coming through the curtains was intolerable. I’m wearing headphones and listening to wave sounds because my wee neighbour is bouncing outside on her trampoline and the noise of it is painful. I was nauseous, experiencing muscle spasms, pain and feeling too weak to sit up or hold up my head.
I wanted to share this photo in the interest of honesty and openness. We’re all very guilty of carefully curating the image we present on social media, me included. I started my blog because I wanted to share the realities of living with M.E, to help raise awareness. I must admit, I still don’t like being too negative so I often try to downplay things or sugar coat them, which kind of goes against my reasons for starting this whole thing in the first place. I want people to truly understand what this illness is.
So, today I wanted to share this little dose of reality with everyone. Yesterday I went to yoga. It’s a class that is specifically for people with mild - moderate M.E. It’s all very gentle, done either lying down or sitting. Then I rested all afternoon, before watching Eurovision in the evening. That’s it. Didn’t run a 10k, didn’t do any heavy lifting, didn’t go out drinking til 3am. Just gentle yoga and Eurovision.
I know that lots of the people following me on social media also suffer with M.E or other chronic illnesses themselves, so they will know exactly what I mean when I say I crashed. This afternoon I crashed hard. It’s actually the first time in a while that this has happened to this extreme, and the worst of it passed quite quickly. That didn’t really make it any less unpleasant at the time unfortunately.
The truth is, we never really feel well. I honestly don’t actually remember what it’s like to feel 100% well anymore, it’s been that long. We have days that are better than others and days that are worse. When you do see us, it’s because we’re having a better than usual day and we’ve more than likely spent days carefully resting, in anticipation of spending time with you. When we do see you we, like everyone, like to put our best foot forward. We do our hair and make up, we smile and laugh and enjoy feeling normal for an hour or two. But we’re smiling through fatigue and pain, and all the while trying to keep a check on how much energy we’re expending so that we can try to temper the payback later. The horrible bit that no one else sees.
To my healthy friends and family, I know it’s sometimes hard to truly get what we mean when we talk about payback, or what a ‘crash’ looks like.
This is it.
In the build up to M.E Awareness Week, the advocacy group ME Action Network have asked the online community post on a new topic every day this week, to raise awareness of the ways in which the disease affects every day life. The topic for today is how M.E affects marginalised groups. Turns out I had too much to say for an instagram caption, so I decided to do a quick blog post about it.
I recognise that as a white cis woman I occupy a position of privilege. I have no trouble accessing healthcare and I don’t face prejudice (beyond the usual doubt that surrounds M.E). I previously earned a good wage but since I’m now unable to work, I’m completely financially dependent on my husband. Our financial situation has certainly changed since I became ill, but ultimately, we are comfortable and secure. I know that many are not so lucky.
In the arguments and debates that surround M.E, something I think gets forgotten about is just how easily this illness can drive people into poverty.
It’s true that some people with M.E are still able to work (although I know from experience that it comes with a huge physical sacrifice), some are really not well enough to work but sadly do not have the luxury of taking time off or even going part-time. Then there are the many who are too sick to even leave their beds, let alone maintain any kind of employment.
If you are too sick to work, then reasonably you would expect to be able to access support from the government, and yet I know from my own experience and from my discussions with other M.E sufferers that it is extremely difficult, if not impossible to qualify for any kind of benefits. You are met with doubt and suspicion at every step of the way. Too sick to work, and yet apparently not sick enough to qualify for financial support.
What happens then to the people who don’t have a partner to support them? Who don’t have parents on hand to help out with the cost of the food shopping, or the people who are parents themselves and have children to provide for? Who do they lean on when their disease makes it impossible for them to maintain full time employment, but the government refuses to support them? Where do they turn? Living with a chronic illness is stressful enough without the added worry of how you’re going to pay the rent each month.
To make matters worse, there is little to no treatment or support available on the NHS. Many people are forced to go private for treatment or tests, with many spending a fortune on supplements just to try to maintain the tiniest sliver of health or function. I really think people underestimate just how desperate people with M.E are to get well, and how much money they are willing to spend trying anything and everything just to get back to their lives.
Unfortunately, there are always those who are willing to exploit this desperation for their own gain. Enter the snake oil salesmen. You’d be amazed how many private ‘treatments’ there are available for M.E - usually involving some kind of therapy or ‘retraining’ of the mind in exchange for a large payment. Maybe it’s worked for some people, but honestly the ways in which these treatments are marketed to prey on seriously ill people who are at their wit’s end and out of all other options just doesn’t sit right with me.
That’s why I believe it’s so important to make noise and advocate for change. I know it probably gets tiresome for some of my friends to see me constantly banging on about this all over social media, but it’s the only kind of activism I can partake in and I truly believe that if the M.E community continues to bang our collective drum loud enough, then someone has to listen eventually and perhaps things will finally change for the better.
Around two weeks ago it was International Wheelchair Day and this got me thinking about my relationship with my own wheelchair and the journey we’ve been on together. So, I decided to write a little something about my new identity as part-time (ambulatory if you want to be posh) wheelchair user and how I have grown to love my once-loathed Hot Wheels. Full disclosure: this post contains zero cat content.
The journey towards acceptance of my limitations has not been smooth or easy. The first time I used a wheelchair was when my husband and I were flying home from Italy for the final time. I knew that I would find the travelling absolutely exhausting, so was advised by friends and family to make use of the special assistance through the airport, to avoid over-exerted and the subsequent payback that comes with it. To say that I was not keen on the idea would be an understatement. I was so embarrassed at the thought of someone seeing me in a wheelchair, which really doesn’t sound good when I say it out loud. It’s not that I had ever or will ever think of being in a wheelchair as something to be embarrassed about, it was more that I was still in denial about my condition and hadn’t yet made peace with what my body was no longer capable of. How had I gotten here? How could I have gone from fit and active to wheelchair-bound in the space of a year or two? And how could I really need a wheelchair when I didn’t even have a ‘serious’ illness? People would think I was faking, or that I was doing it for attention. Everyone in the airport would stare at me, knowing that I didn’t really need that wheelchair.
As it happens, no one gave a toss except me and it really did make the whole process much more manageable.
A few months after moving home, we got our own wheelchair and I began to use it more regularly. I expected that over time I would become less uncomfortable, but that wasn’t quite the case. Whenever I was using my chair, I found myself making jokes about it - or myself - a lot. I convinced myself at the time that I was doing it to make everyone around me more comfortable. I know it wasn’t easy for some people to see me in the chair initially, so I found humour to be a helpful defence mechanism for putting everyone at their ease. I would shout “it’s a miracle!” whenever I stood up out of the chair, or quote Brian Potter from Phoenix Nights. It soon became apparent, however, that the only person truly uncomfortable with it was me. I was making these stupid jokes for my own benefit.
So why was I so uncomfortable? When I confessed to my husband that I felt everyone would question whether I really needed the chair, he asked me a very simple question: “when have you, or anyone you know for that matter, EVER questioned someone’s need for a wheelchair?” Well of course I bloody hadn’t, and I don’t know anyone who would, so why did I think everyone around me would suddenly turn into the DWP and start asking me to prove myself. It was utterly nonsensical.
As I continued to ruminate on this (and believe you me, I have a lot of time on my hands these days so I can ruminate with the best of them), I started to question whether my discomfort with my wheelchair was part of some wider social stigma or prejudice that I had unknowingly internalised? Did I view having a disability or using a mobility aid as something shameful? Absolutely not. So it was difficult for me to understand why exactly I was now judging myself for needing a chair. I knew I felt embarrassed about it, but I couldn’t quite get to the real root of the issue. Why did any outing leave me a sweating, anxious, apologetic wreck? Whenever I was out in the chair, I could physically feel myself shrinking into the smallest version of myself, in the hopes of not being seen or noticed.
I mentioned this to my Occupational Therapist during one of her visits and she told me that one of the hardest things for people with M.E to do is accept their condition. To go from living a fit, active and busy lifestyle to being housebound is very hard to swallow. To do so thanks to an illness so heavily entrenched in stigma and disbelief is even harder. Imagine how devastating it is to have your life brought to a crashing halt by a disease that can’t be treated. Imagine how much more devastating it is that many still hold the belief that your disease isn’t even real. When faced with all of this it can be hard not to doubt yourself at times, not to question if you are simply not doing enough to get well. Maybe if you just pushed yourself, you’d start to improve? Maybe it is all in your head after all.
It would appear that the only prejudice I had internalised was toward my own bloody condition.
After much soul searching, I realised that the reason I worried that people would think I didn’t really need my chair because I still couldn’t quite accept that I needed my chair. I had been viewing it as a concession, as if by relying on my wheelchair was somehow ‘giving in’. It was my mum who pointed out that the chair was simply the difference between doing something or staying in the house, and it was this that helped me begin to see my wheelchair not as something I was surrendering to, but an aid which actually empowers me to take part in activities that would otherwise be impossible or unachievable.
Since becoming an ambulatory wheelchair-user I have connected with others in my position via social media and have learned a lot about the ableist language and attitudes that are still extremely prevalent today, and just how damaging these can be. Earlier I used the term “wheelchair bound”, but I have come to realise that language like this is all part of the problem. I am not “bound to” my chair, my chair is my freedom. I am limited at the moment, so my chair is holding up the fort me. It is doing the work that my body can’t manage just now. Although I continue to hope that my limitations are not permanent, I am learning to make peace with them in all of their various forms.
And so, to my little Hot Wheels who I have mistreated and resented for far too long, I would like to offer an apology. Not only have you taught me to worry less about what other people think, you’ve enabled me to do things that would have been impossible without you. You helped me get to Oslo to watch my brother get married, you took me back to Milan to see my pals, you made it possible for me to stroll (well, roll) along the seaside. You’ve taught me a lot about acceptance and self-love, and to give significantly less f**ks about other people’s opinions of my illness.
Lastly, you’ve also helped me get the best parking and queue jump like a boss. You’re the best.
Hello and Happy New Year!
I hope you all had a very merry festive period. If you’re reading this and you have a chronic illness, I hope you managed to join in at least some of the fun without too much payback.
I’ve been finding it quite difficult to write much of anything lately. Living with M.E can be really all consuming at times. For the most part I feel like I’m managing it all well and I manage to stay positive, but winter has been difficult. Despite my best efforts, the many germs that do the rounds at this time of year have taken me down several times (special shout out to my Primary School Teacher husband for kindly bringing so many of them home), and I seem to have developed a couple of new food intolerances. I’m currently conducting yet more ad hoc investigations into that, trying to rule things out and find the culprit. Think of me as Sherlock, only with a Lancashire accent and a cat instead of a Watson.
I also got a bit overcome with Christmas excitement and tried to do too much, so spent most of December in a cycle of ‘boom and bust’ – trying to do the things then crashing for a week, before picking myself up and foolishly attempting to do the things again, therefore bringing on an even worse crash. It’s a vicious cycle and one that is not easily unlearned.
If I’m being completely honest, I’ve found Christmas and New Year quite mentally and emotionally draining on the whole. Even though I had some lovely, fun family time over Christmas and spent New Year relaxing and catching up with very dear friends, it’s tough to have fun knowing all too well that no matter how well you pace your activities your health will take a huge hit for you having joined the celebrations. I’ve also found that while social media can feel like a great distraction and connection to the outside world when you’re a housebound hermit, it will turn around and punch you square in the face come December. It’s really quite difficult to see all your friends’ social media feeds full of parties and festive cocktails when you’re stuck in bed, having been too sick to shower for the fourth consecutive day. It reminds you of what you’re missing and what you’ve lost. It’s equally hard when people start posting their ‘best of’ photos around New Year’s Eve - looking back at all that they achieved in 2018 or all the fun they had. While I obviously don’t begrudge my loved ones their happiness and accomplishments, it can be hard to feel that all you really did this year was survive.
And yet, despite what people may present on social media, I know that it isn’t real life and that the festive period can be mentally and emotionally difficult for many people, for a number of reasons. So if you’re reading this and found that you felt quite gloomy at times during the festivities, then I guess I just wanted to let you know that you’re not alone in that and I hope that you have good people around you who you can talk to or at least binge-watch RuPaul with until the gloominess doesn’t feel quite so heavy.
Now, on to happier things! Although 2019 hasn’t gotten off to a great start on the health front thanks to another stomach bug – I do have some exciting things ahead. Sadly, my dreams of opening up a cat sanctuary/mansion are still a long way off but I do have a few things in the pipeline that I’m really looking forward to and have a lot more to say about how my Perrin treatment is going, so I’ll hop to it and get to writing about it all soon.
For now, I hope January is being kind to you and that your New Year is off to a flying start.
And to those of you reading who are living with an illness like mine, then well done on simply surviving and getting up every day. I think that deserves a toast (of herbal tea, in a quiet environment of course).
Ciao for now,