Loneliness. Isolation. Solitude. Three words that I would describe life with a neurological disorder, excluding words associated with the symptoms that accompany said condition.
Having experienced symptoms related to the neurological condition I live with, I have always felt like I’ve never fitted in anywhere. Like Belle, from ‘Beauty and the Beast’ I have always felt that others’ looked down on me, thinking of me as odd and different, just like the villagers in the classic Disney film. Both Belle and the Beast are outsiders in the movie, both harbouring feelings of loneliness and it is this that I have resonated with over the years and perhaps one of the reasons it remains my favourite film to this day.
Often, I feel that I don’t fit in with my own family; a jigsaw piece that doesn’t fit in with the incomplete puzzle. Of course, I have had made friends during my thirty years, but just like the seasons, they have come and gone. I have been bullied by so-called friends, or otherwise ostracised by my peers; unable to understand my unusual ‘quirks.’ Rejection is something that I have dealt with over the years and perhaps is the reason why I find it so hard to trust people and remain protective of my heart, keeping people at a safe distance.
It’s difficult living with a neurological condition that affects your perception of the world. For example, some places like those with high ceilings or fluorescent lighting can be difficult for me to cope with, including cinemas and large shopping malls. Because of this, over the years I have had to decline invitations to such places to avoid the triggers that provoke the onset of my symptoms.
It seems that if you politely decline invitations on several occasions, you become a social pariah and such invites become no longer offered. And that hurts because it’s not that we don’t want to go to trips to the cinema or go shopping with friends, but we are unfortunately limited by symptoms of our health condition.
We desperately want to be included in the goings of our social groups and invited to events even if we aren’t always able to attend. Our anthem song slowly becomes ‘All By Myself’, and the lyrics “I think of all the friends I’ve known/But when I dial the telephone/Nobody’s home” has never felt so apt.
I am limited so much by my condition; the dizziness so disabling that it leaves me disorientated and confused, and the trembling in the legs so severe that I have no idea when they are going to give away that I am unable to go out without somebody else with me. And as I usually only go out with either my parents or my carer, it can make meeting new people extremely challenging. As such, I spend the majority of my days inside the same four walls.
Living with a chronic illness can often feel like living in prison; imprisoned by debilitating symptoms which are so constant that they have become a part of everyday life. Debilitating symptoms that keep us chained to our homes, often even just our bedrooms.
Also during the very first cruise, due to the severity of my symptoms at that time, much of the holiday was spent cooped up in our cabin. Unable to even get out once outside of the ship to enjoy the surroundings and activities that the beautiful countries such as Italy had to offer.
And as much as I wanted to persist and visit the places our holiday had to offer. As much as I would like to get out of my ‘prison’ cell and go out and participate fully in life, it is incredibly difficult. In everyday life, it feels as though I am continually being held hostage by the pain, dizziness, and fatigue as well as the myriad of other symptoms that I experience because of this neurological condition.
At other times, it is not the want to go out or being held hostage by symptoms of chronic illness that keeps me prisoner but rather the lack of opportunity.
Others may assume that I will be forced to decline the invitation due to ill health, or I am merely forgotten, but whatever the reason I’m once again excluded, ostracised. Even in the darkest times, and after experiencing the extreme depths of loneliness and isolation, I crave the company of others, at least the companionship of others who I don’t live with and already regularly see!
You then have to endure seeing photographic evidence of parties and gatherings that you seemingly have been excluded from, which little by little chips away at the self-confidence that living with chronic illness has already eroded. Amid the times where you manage to get out of the house, you feel awkward and unsure during social situations as after being stuck inside the house for so long it seems that you have forgotten how to converse!
Amidst the constant solitude, we are instead forced to find companionship amongst our favourite books. Whenever I reread ‘Little Women’, a book that I read for the first time as a child it is like saying hello again to an old friend. Failing that and perhaps on some of our worst days, then it is our favourite TV shows and those that portray our favourite TV and literature characters that help keep us company. Netflix is a welcome distraction from the silence and solitude that surround us.
Social media and the vast community that exists of fellow warriors, also living with long-term health conditions helps with the loneliness and isolation that living with chronic illness can bring. The friendships with others who can relate to what you are going through as they experience it to can bring welcome light into the darkness, and at last making, you feel less alone in the world especially when living with a rare or complex disorder like me.
It is relationships like these which help loosen the shackles and somewhat releases you from the prison that living with a chronic illness has built.
Who else can relate? What do you do to get out of your personal ‘prison’?
I am so sorry if you can relate, and that loneliness, isolation and solitude is a regular part of your life with chronic illness. But remember that you are not alone and feel free to comment below, or even email me or connect with me on social media (links at the top of the page).
I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own, and I was in no way influenced by the company.
Rewind to the end of the last month, and some of you may remember the blog post I published regarding my personal struggles with chronic pain; how living with constant pain has begun pass for attempting to survive catastrophic and torrential storms. I have made many attempts to try and ‘fix’ the excruciating pain which radiates throughout my legs, but nothing has worked, and the prescribed medications that I have so far tried has done little to relieve the neuropathic pain. This year, after seeing a specialist in London, a visit to a chronic pain clinic has now been put in motion, but after months of wrestling with intense pain, I am in need of some respite from it since yesterday!
Then in August of this year, I was contacted by Chronic Illness Bloggers who asked if I was interested in reviewing the Quell. I had researched many products which claimed to alleviate chronic pain, however, in many of the cases, the wearable technology is worn at the site of the pain which raises questions on where to place the device when the neuropathic pain radiates throughout both legs.
But Quell solves this problem, as no matter where in the body the pain originates the Quell is worn on the upper calf to stimulate sensory nerves, tapping into the body’s natural pain relief response. In other words, by stimulating these sensory nerves in your calf, sends a message to the brain to block pain signals, which in turn leads to widespread pain relief.
What is the Quell?
The Quell is an entirely safe, natural and drug-free pain relief device that is used to manage chronic pain. It is, therefore, safe to wear 24/7 for round the clock pain relief, for those like myself who suffer from constant chronic pain, and suffers from disrupted sleep because of it.
The device sits inside a pocket of the adjustable exercise band (also included in the Quell starter pack) and which an electrode strip is snapped merely on at the back of the small, thin device. These electrode strips (which I received a month;s supply of) are placed onto the skin of the upper calf, approximately 1 to 2 inches below the knee and once the band is fastened in places with velcro and the device is switched on you are ready to go!
How the Quell looks on my leg!
Calibrating the Quell
However, before using the Quell for the first time and to continue receiving the optimal pain relief for your personal needs, the device needs to be calibrated. This quick and easy step is done by sitting with your feet on the floor and knees bent at a 90°. Then to begin the calibration, you hold the button on the device until the lights start running back and forth. Release the button and then any time you feel a slight tingle, press the button. The calibration is complete when the lights on the device go off, and you are then ready to start full therapy sessions.
This step could not be quicker or easier to complete! In fact, I calibrated my Quell device before leaving on a four-day break with a local bus company with my Mum. The pain had been so severe that I was concerned about the impact it would have on my time away, especially with the number of trips on the itinerary. I was relieved when I received my device on the day before we were due to leave, in the hopes it would have a positive effect on my pain. It didn’t take long at all to calibrate the device, and it was then ready to use while we were travelling to our destination on the bus!
Is the Quell easy to use?
In the simplest terms, yes, it is straightforward to use, and even those who may be technologically challenged would find the Quell uncomplicated! All that is required is to put the device, press the button to switch it on and then leave it and go about your day as usual! The Quell delivers therapy sessions for an hour, then gives you a break for 60 minutes, before starting another cycle automatically (there is also a Quell app which can be used to change the frequency of the sessions).
There are four different options: the standard is a therapeutic session that lasts 60 minutes, followed by an hour break before restarting; manual in which again has a 60 minute therapy time but you have to start following sessions manually. A low therapeutic dose is a 30-minute session that restarts after a 60-minute break, and a high therapeutic treatment which involves a 60-minute session and restarts after a 30-minute break.
After four therapy sessions, it will buzz at the end to remind you to let the skin on your leg for a breather. If you feel the need to continue receiving sessions, however, as I had done when the pain was at its worst you can switch the device to the other leg.
It may be necessary, as everyone’s experience of pain is different, and so Quell has designed the device as such that you can also increase or decrease the intensity of the therapy that the device delivers. To do this, you hold the button on the device down until you see all six lights flashing. Keep holding until the intensity reaches a level you are satisfied. To decrease the intensity, press the button once. To switch the device off completely, press the button four times.
The App
As previously mentioned, the Quell also works with an app that is available on smartphones (available in Apple App Store and Google Play). All in all, I much prefer using the app as it saves so much time in the mornings when I want to start using the device as part of my pain management. All I have to do is press the start button and voila! However, while I was away, I did appreciate having the option to operate the device manually as I wanted to save precious battery life on my phone to take plenty of pictures of our trip.
Although, to my surprise, when connecting the Quell via Bluetooth to my phone in the night to track my sleep, it didn’t use as much battery life as I was anticipating (great to know if you rely on your phone as much as I do!). I read other reviews in which they had used the app for Apple devices and had a feature that reminded you when to change the electrodes (which last approximately 2 weeks) however this particular feature isn’t available on the app for Android smartphones, and which hopefully the developers will rectify. Another aspect that is sadly missing from the Android app is seeing the level that the intensity is currently at; no numerical data available to know how high or low the intensity is at which makes adjusting to your preferred level in future sessions difficult.
The Dashboard which controls the device
The app is also helpful as it notes how many regimens you have had that day (Quell recommends that you have at least 2 to 3 full therapy sessions for the first month). The Quell app also lets you know the amount of battery life left on the device, so you know if and when it needs to be recharged.
An added benefit is that it can also keep a record of how your pain has been over the previous 24 hours (asking to rate your pain, how much it has interfered with sleep, how much it has interfered with activity levels as well as mood). It also has a feature which enables you to track sleeping patterns and activity levels all of which are excellent indicators if and how Quell is helping your pain.
My Personal Experience of Using Quell
To note, the Quell does not work right away for everyone, and sometimes it can take weeks of use until you start feeling the full benefits of the device. However, after hours of wearing the Quell, I began to feel a reduction in the severe pain I had been experiencing during that time.
It is not a magic cure and pain is still a constant aspect of my everyday life. There are still days, however, when I am in agony due to neuropathic pain but it helps to take the edge off the pain, and the Quell is now a permanent feature in my pain management toolbox. When you have been in constant pain as long as I have even a little relief is welcome.
I have found that the Quell has been much more successful in alleviating the joint pain I have been experiencing in my knees. It is not a pain we know the reason for, although I suspect it is as a result of all the falls I have had over the years, as I often fall onto my knees. If for whatever reason, I am not able to use the Quell, I notice that the pain in both knees exacerbates.
The first night have I started using the Quell; I decided to wear the device overnight to track my sleep, especially since pain has a significant impact on my ability to sleep, sometimes only managing a couple of hours. So, imagine my surprise when I checked the app and found that I managed 8 hours and 24 minutes of precious sleep!; more amazing since I was also sleeping in a strange bed.
A great night’s sleep has been a welcome side effect from using the Quell.
At first, I was sceptical in wearing the device, as I often wear slim-leg jeggings, and wondered whether I would even be able to pull them up over the device. But this proved not be an issue at all as the Quell is slim-lined in design.
Then I worried that everyone will notice this strange looking device strapped to my leg, leading to many questions about what it was and why I was wearing it. Living with an illness and subsequent disability that has become more visible, I get asked a lot of questions. But we are all more than our illness and disabilities, and therefore wish that people see beyond our physical limitations. However, as the device is slim it was less noticeable than I had anticipated and during the month I have worn it, nobody has seemed to notice the device strapped to my leg.
Even wearing slim-leg jeggings, the Quell is hardly noticeable!
The only problem I encountered was when having to swap the electrode to the other leg, allowing breathing room for my skin, which proved difficult as I was out all day on trips and I was wearing my usual slim-leg jeggings.
Another positive of the Quell is for its incredible battery life. Considering that I am using it for the majority of the day, and overnight, the battery lasted for around a week. The Quell came with a charger adapter and charger cable and has only taken approximately 2 hours to recharge.
What does a Quell Session feel like?
It doesn’t hurt at all and just feels like a vibrating and tingling sensation on your leg. With my neurological condition, I also experience constant trembling feelings and have found that the vibrations and tingling reactions the device produces do, in fact, worsen the trembling which is unnerving when walking while out of the house. Most people report forgetting they have it on but because of this, this is a rare occurrence for me.
I have also found that as someone who suffers a lot of falls due to my neurological condition, I have had issues with accidental disconnections with the Quell device, and have needed to excuse myself to the bathroom to reconnect the device to the electrodes and to resume a therapy session.
Accidental disconnections is also a regular occurrence when I wear the Quell overnight. Many times I have discovered the device has failed to record the length of time I have spent asleep as during the night as the Quell has disconnected (although I am one of those persons who is forever tossing and turning!)
Although the Quell is no cure for the constant pain, I experience I have found I have been able to do more than I would otherwise. During our time away, I found that I was able to walk further and do more than I was anticipating before leaving for our trip. Also, I have noticed that I have been able to increase the time spent on the bike at the gym. Admittedly, I have experienced payback of pain afterwards, but it hasn’t been as bad before using the Quell.
Cost of the Quell
The main drawback to the device is the price. At $249 (around £197) it is an investment. However, the company does offer a 60-day money back guarantee, so you are able to recuperate the cost if the product isn’t suitable or if it just doesn’t work out for you.
There are also additional costs to consider, as previously mentioned the electrodes need to be replaced every two weeks; for a month’s supply, it costs $29.95. With the starter kit, I was sent a one month supply of the standard electrodes and a month supply of their new sport electrodes which are designed to absorb moisture so are perfect for those who exercise regularly or play sports. I have found that the sport electrodes do last much longer than the regular electrode.
I found that the blue gel on the regular electrode became tatty quite quickly, although they still have lasted the full two weeks before needing to be replaced. Admittedly, to save further cost, I have pushed one to three weeks of use. Although I wouldn’t recommend it as the Quell felt like a painful stinging sensation, instead of the usual buzzing feeling, and was probably because the electrode became worn out.
The band also gets worn and stretched quite quickly, and the velcro loses its strength, and sometime in the future will need to be replaced, which is yet another cost!
Final Thoughts
Despite the shortcomings that I have experienced with using the Quell, I still think that the Quell is well worth it; it has become my favourite tool to help manage my chronic pain. If someone were to ask my opinion on the Quell, I would have no hesitations in recommending it for someone living with chronic pain. Quell offers a drug-free approach to pain management, which I appreciate as I often have stomach cramps after taking pain medication.
Like with anything, I know that it would not help everyone, but with the 60-day money back guarantee, it’s definitely worth trying.
I have usually talked about my experience of living with chronic pain in passing during the three hundred and fifty posts that I have previously written. However, today I thought I would shed some light on what it is like living with chronic pain from my own personal experience.
Living with chronic pain is like attempting to function through a torrential storm. A mighty and ferocious storm that wreaks havoc and destroys everything in its sight.
The excruciating pain is limited to my upper and lower limbs, although the pain in my legs is often much worse. The pain is unimaginable; a crushing sensation, as if they are leg caught in a vice which is only getting tighter and tighter. Every step hurts, each step bringing stinging tears to the eyes.
Pain is relentless and all-consuming
At other times, the pain feels like an extremely unpleasant cold sensation radiating throughout my entire legs; the cold that seeps down right into the bone, feeling frozen and if will snap in half.
It is crippling and unrelenting causing a massive red stop sign to appear in my track; unable to do anything else but think about and feel the intense, uncomfortable pain. Distractions, anything to divert the pain away from the thoughts inside the brain, but nothing works.
Pain consumes everything; a storm that is so powerful and savage causing flash floods. Rough waves pulling at the body, dragging you under, consuming you. And living with constant pain feels like that, it drags you under to the depths of despair. It is all-consuming and relentless.
Living with constant pain is exhausting.
If fatigue weren’t already a side-effect of living with a neurological condition, then the pain would be the cause. Dealing with pain every day is draining, each night laying there all alone with nothing but the pain for company is mentally exhausting. The lack of sleep and fatigue accompanies the pain, following you around after the exhaustive, restless nights. In the chronic illness community, we have a word for this – painsomnia.
Often, as the lack of sleep overwhelms everything else, a nap becomes necessary. But no matter how much sleep we, it is never enough. Sleep never eradicates fatigue. A vicious cycle of sleeping during the day and not being able to sleep at night which is seemingly impossible to break.
Painsomnia can last all night and one in which you will try anything to distract you from the pain which usually consists of social media and Netflix
Each morning promises to be a clean slate, a new beginning of hope and promise but for those like me battling chronic pain, each new morning starts instead with the shock of crippling and debilitating pain.
It is a constant companion, one who dictates how our day will go and what we can do with our day. We speculate when the next ‘storm’ will impact, although very often these waves continuously crash, pulling us under, our bodies being slammed from every side by the violent waters.
The emotional side effects of living with chronic pain can be just as soul-destroying as dealing with the physical aspects of our conditions.
Pain can make us feel incredibly lonely.
Pain is invisible, and as such nobody ever knows just how much pain we are in, we are expected to participate in society even when we are consumed with the pain. We don’t want to say no or cancel plans we have made, but it feels as if we are being held hostage by the pain and as such we are forced to stay at home, clinging to a raft trying not to be sucked under and sink. Chronic pain and chronic illness shrink your world until you spend your days staring at the same four walls, like Rapunzel trapped inside her ivory tower.
Due to constant and debilitating pain, a lot of time is usually spent alone
Lonely as we struggle with the painsomnia; lying awake in bed, the pain draining our ability to sleep, alone with only the pain and our thoughts (usually about the pain) for company. We can be in the company of others, a roomful of people and still feel alone; the pain louder than any conversations happening in the same room.
There are times when the pain wins; days when we are worn down by the pain. Days when we don’t do anything besides lie and think about the pain, feeling defined merely by the pain. Pain has a way of making you feel stranded in the middle of nowhere with no roadmap or compass in sight to help you find your way.
Many of us are never without pain, but regardless most days we soldier on despite the pain; we push through the intense discomfort. Despite the constant affliction of pain we continue to hope for better tomorrows. We cling hard to a raft during the torrential storms until it passes and sunshine and rainbows appear overheard once again.
Despite living with pain and feeling like we live in darkness when living with a flare we still look and see the beauty in life
The storm of living with chronic pain cannot be stopped, it is a storm that can only be weathered. The only thing to do when the storm hits is to seek shelter, prevent damage, survive and stay as comfortable as possible while the storm is raging. We embrace self-management techniques; tools that we have built up over time into our very own ‘toolbox’ of strategies that help us manage our chronic pain. Techniques which include strategies such as pacing, relaxation skills, and diet and exercise.
And eventually, the storm subsides, and we breathe a big sigh of relief that it’s over, while also waiting with baited breath for the next storm to arrive…
After surviving the ‘storm’ of a pain flare, we are left wondering when the next one will arrive…
One of my favourite chronic illness bloggers, Sheryl from ‘A Chronic Voice’ has started a link up party! These parties are a monthly get together for any bloggers who live with or have experience with a chronic illness. These will provide opportunities to ‘meet,’ share thoughts, information and learn from one another.
To gain more information about these parties and information on how to participate then you can visit Sheryl’s original post here.
The prompts for this month are:
Missing
Appreciating
Striving
Releasing
Eating
Missing: My late dog, Honey
I’m not going to lie, but I have been struggling these past couples of months and been spending more time alone in the house. And it’s during these times that I have been really missing the company of our late dog, Honey. Although she may have been pretty useless if something happened to me such as a fall (which have also been increasing) however the mere presence of having her around was comforting. Of course, I also miss her copious amounts of hugs and kisses which never failed to make a bad day better.
Appreciating: Books
In my last post, I wrote about my love of books and reading. As the pain and relentless trembling in the legs have worsened recently, I appreciate the wonderful world of books for allowing me to escape from the monotony of chronic pain and the other symptoms that have taken permanent residence in my everyday life. These books, the many that I have read so far this year has taken to many different places that my body is physically unable to go. It has proven to be a great distraction for me on the bad days, which unfortunately have been many. And for that, I have been so very grateful.
Striving: Striving for Progress
As I have already mentioned, things have been challenging in regards to my health which is really frustrating especially as I take steps to try and improve it – I go to a local gym in the attempts to strengthen my muscles (which hasn’t happened). Or at the least ensure that the weakness does not get any worse. I also ensure that I spend time everyday to complete the vestibular rehabilitation exercises that I was given at the hospital to help with the dizziness and vertigo as well as the physiotherapy exercises to improve the functioning in my legs. So far, they have been unsuccessful, but still, I persevere in the hopes of improving my situation. Like all of us, I am never going to achieve perfection, but I hope one day soon I manage to attain progress and improvement.
Releasing: Positive Thoughts
As a writer myself, I love words, and I love finding new and uplifting quotes to decorate my bedroom to raise my spirits and inspire me on my bad days, and those days I am stuck in bed. I also own several pieces of jewellery that have a positive quote or mantra that I can wear and remind myself during difficult times. I release these positive thoughts to elevate my mood. I have even found some cards that have positive and inspiring quotes on them that I have even used to send to others also living with chronic illness and disabilities (such as the fun and brilliant #spooniepost) to help remind them of everything that is positive during their own struggles.
Eating: Homemade Pizza
In our attempts to eat healthier, my Mum and I have been spending some time experimenting with some of the recipes from the beautiful cookbook ‘Cook Happy, Cook Healthy‘ by Fearne Cotton. Our favourite meal from this book has been the Healthy Homemade Pizza which uses spelt flour instead of regular white flour due to its nutritious qualities. I love this, as it’s surprisingly easy to make and it doesn’t leave your stomach feeling heavy and stodgy afterward, which I often get after indulging in a takeaway pizza. It has also been enjoyable to make (despite all the mess!), and I have felt incredibly accomplished while enjoying the fruits of our labour!
In a recent post, I wrote about my passion for television shows and the distraction that they provide from the persistent chronic pain that has been ravaging throughout my legs recently. In this post, I also shared my favourite box sets to watch when incapacitated by chronic pain or the many other symptoms that occur when living with a neurological condition.
Yes, television and films are one of my primary passions. However, it is not my only passion. My first love, and one which has followed me throughout my life since childhood is reading. Books are something that I have always collected, amassing goodness knows how many over the years and are found all over my home, especially in my bedroom! Many books I donate to charity shops or pass them along to those whom I know would love it as much as I did, but still, I amass so many books!
The problem of being a massive bookworm!
Like many, I hate getting lost especially in unfamiliar places. But I can spend many hours perusing the shelves of libraries or bookshops that times seems to slip away from me, and wouldn’t notice if I did get lost, or lost sight of my companion.
As a young child as much as my Mum tried to get to engage in other activities such as colouring or puzzles, for example, I quickly became bored, and I once turned to the safety and magic that books provided. Many of the photographs of me as a young child, I can be seen clutching a book, losing myself in the words and pictures on the page. As we have now established my condition whether genetic or due to another organic cause, was from birth, I wonder if I retreated into books as a way of dealing with symptoms such as pain that I could not yet verbalise.
Nearly 30 years later and I am continuing to use books and reading as means of distraction from the effects of chronic illness. Recently I came across a quote on Pinterest that read ‘Reading gives us somewhere to go when we have to stay where we are.’ And this quote is incredibly apt for someone living with a chronic illness as there are many times in which I I am incapacitated by one or more of the many symptoms that come with living with this neurological condition that I live with day in and day out. Weak legs that can barely carry me into the next room forces me to lie on my bed, contained within the same four walls that I am compelled to spend most of my time anyway. Days like these I am unable to go anywhere or do anything, and so, I find solace in the written word.
Escapism. A place where I can forget my predicament, and everything that chronic illness has given and taken away from me. Escapism from the vast number of symptoms that are plaguing me. But books are not only able to take you away from everything that is bothering you, but they can also take you places.
Books are like a unique magic carpet ride, transporting you to far away places, places you’ve always wanted to go and experience but which current circumstances prevent you from doing so. After seeing many pictures and heard stories from those who have been there, Prague has been on my ‘bucket list’ of places that I would love to visit some day. However, as I’m unable to fly due or cope with large airports, this neurological condition has prevented me from ticking it off my list.
Last year, I read the beautiful ‘A Year and a Day’ from author Isabelle Broom in which a large chunk of the story takes place in this very city. The way Isabelle writes, and the exquisite level of detail with which she describes Prague and its unique landmarks it made me feel that I had been there and experienced the city for myself. OK, so it may not be like experiencing travelling firsthand, but when circumstances prevent you from being able to move from where you are, books are the next best thing. In fact, all of Broom’s books give you major wanderlust as each novel has taken place in a different, exotic locations, and each place beautifully and meticulously described, making you want to grab your passport and book flights immediately.
And it’s not only places that exist now that books allow you to visit; historical fiction allows you to visit and experience places that existed many years ago (or at least what it was like from the author’s perspective). But very often, and for me anyway I want to be uplifted. A story to remind me of the beauty and wonder of the world; to comfort and reassure myself that despite chronic pain there is still hope and much to be grateful for.
Reading can give you real wanderlust!
In books, we can be whoever we want to be. We don’t have to sick, confined to bed and in constant pain. We can be the hero, the warrior, the woman who eventually finds love and her happily ever after. Getting lost in these worlds, we no longer feel the pain that was slowly dragging us down into a dark abyss. We no longer have to fight against our bodies. These books that are on my bedside table allows me to experience a snapshot of normality; one in which I am independent, confident. No longer a burden on others.
Books are a magical portal allowing us to escape from our lives. Taking us away from this world of sickness – time spent in bed, mobility aids, hospital appointments, and medications. Books can allow us to find out who we wish we could be. For many, reading is merely a hobby, a way of filling time, or for light entertainment. But for those of us confined to bed, incapacitated by pain or from numerous other symptoms from chronic illness there is magic and power in those printed words.
Does anyone else love to read? What books do you enjoy; are there any that provide comfort and sanctuary away from life with chronic illness?
And let me know of any great book recommendations that you have.
Connect with me below or any of my social media channels:
Thank you so much to Cheyanne, a lovely young woman who blogs at Hospital Princess in which she shares her personal journey living with Ehlers Danlos Syndrome and its other comorbid conditions including dysautonomia and gastroparesis for tagging and nominating me.
What is the Sunshine Blogger Award?
It is a nomination given to bloggers by bloggers. If someone nominates you, it means you’re one of 11 people whom they find inspiring and brings sunshine into the lives of your readers. If you decide to continue to tradition, then follow these simple rules!
Rules for the ‘Sunshine Blogger Award’:
Thank the blogger who nominated you and link back to their blog;
Answer the 11 questions the blogger asked you;
Nominate 11 bloggers to receive this award and ask them 11 new questions; and
List the rules and display the Sunshine Blogger Award in your post and/or on your site
Questions and Answers
Here’s what The Hospital Princess asked me, and my answers to them:
What inspired you to start blogging? It was a remark by an online friend who also at the time was blogging. At the time I didn’t have a concrete diagnosis, but we both suffered from chronic dizziness and after reading some of my personal writing and knowing my story living with an undiagnosed condition she suggested creating my own blog to share my journey and to help myself and others going through a similar experience.
Instagram or Twitter? Why? I would have to choose Twitter; I also have an Instagram account but much more active on Twitter mainly because I hate having my picture taken, always highly critical of my looks. I also feel that I am much more eloquent with words!
If you could choose another “niche” for your blog, what would it be? It would definitely have to be writing about books as I am an avid reader. I have so many books but still always find myself buying more as I discover new and exciting authors and titles within the bookshops that I frequently inhabit.
You can travel back in time. What age would you be? I would travel back in time to when I was 16 and going through a tough time at school, suffering from depression. I would give myself a big hug and reassure myself that it will be OK and that these feelings will pass.
Professionally, what are your future goals? I have no idea. At the moment with my health, I am just trying to get through each day. But I would like to do more writing, either for online platforms or even get published in a magazine.
Who is the biggest supporter of your blog and life in general? How do they keep you motivated? Of course, my biggest supporters will always be my parents. But outside of my immediate family, it would be my best friend Aisha who makes an effort, despite her own health struggles to read my writing and my blog whenever I publish something new and has even proofread my writing. Her support and encouragement always keep me motivated!
What is your favourite song lyrics? Why? I find lyrics in the song ‘Do You Hear the People Sing’ from the musical Les Miserables particularly inspiring and motivating. ‘Even the darkest night will end, And the sun will rise’ is a beautiful reminder that nothing in life is permanent and the pain or the negative feelings we are currently experiencing will pass just as the night ends giving way to a new day.
How do you promote your blog? I promote my blog through my social media channels – Twitter, Facebook and Instagram. I also am members of various groups on Facebook to help share and promote my new blog posts.
Most embarrassing moment? I once fell off a stage as I went up to collect an award which was very embarrassing, especially as there is still evidence somewhere as my parents were recording it!
What do you dislike the most about blogging? It’s not so much about blogging per se, but it can be frustrating when you take the time to share the blog posts of fellow bloggers, but they don’t return the favour. It doesn’t happen a lot, but some bloggers don’t even thank you which is frustrating as I think especially within the chronic illness community we should all support each other.
How have you changed as a person since starting your blog? Well, I’ve certainly gained more perspective and insight into my experiences with living with a long-term health condition, have become more eloquent when describing my symptoms with doctors and other consultants, which may have helped in getting answers and culminating in a diagnosis. I have grown in confidence as a writer and as a person.
For the past few weeks, I have unfortunately been experiencing a severe flare in symptoms. Although the symptoms I live with are constant, however, I experience blocks of time in which these symptoms worsen causing much pain and suffering.
Pain, trembling, dizziness and especially fatigue have all been particularly acute of late. Often I have been unable to do much at all, with the pain and trembling in the legs shackling me to my bed due to difficulties with getting around, even in the house. Crippling fatigue has also confined me to rest in bed on numerous occasions especially after being out of the house or doing chores around the house.
And it’s in these moments, being incapacitated by the illness that I am unable to do much more than just lie on my bed and entertain myself with a light or comforting book. But more often than not, however, I have been distracting my mind from the pain and other symptoms with a box-set binge of one of my favourite television programmes.
In this post, I thought I would share some of my favourite box sets that have recently helped me into a chronically (ill) induced boxset binge.
Bones
Anyone who knows me will know that I am a huge fan of procedural crime dramas, and Bones has to be one of my all-time favourite shows in this genre.
‘Bones’ centres around the relationship between forensic anthropologist Dr Temperence Brennan and Special Agent Seeley Booth of the FBI whom together combine their skill and expertise to solve murders using evidence recovered from dead bodies. “Bones” is the nickname given to Dr Brennan who heads up the team of forensic scientists of the Jeffersonian Institue (based upon the real-life Smithsonian Institue). As the show is based on the character created by real-life forensic anthropologist Kathy Reichs (and who is also an executive producer on the TV series) the science and techniques used adds to the show’s realism and authenticity. Alongside murder inquiries, the show also explores the relationships and private lives of the characters.
Not only is the science of the show interesting and compelling but the writers of the show beautifully write engaging and relatable characters whom you can’t help but fall in love with, especially the show’s protagonist ‘Bones’ whose directness and clumsy demeanour makes her both hilarious and endearing to watch. Also, what I love about the show is its ability to inject humour seamlessly alongside the horror and gore of its depictions of its murders and dead bodies.
Blindspot
“Jane Doe” wakes up stuffed inside a duffel bag in the middle of Times Square, naked, unaware of her own identity and covered in strange tattoos covering most of her body. And it’s this enigmatic twist that makes it so different from any other police drama before or since.
The FBI, headed by Special Agent Kurt Weller, whose name also appears on the back of this mysterious tattooed woman, realises the tattoos are much like a treasure map and when decoded reveals clues to crimes and instances of government corruption. Also while trying to discover Jane Doe’s real identity, and who sent her to the FBI and why.
If you love dramas that make you think, then this is one to put on your list. Once you start to watch you cannot help be instantly intrigued with these beautiful and ornate and tattoos as well as the methods used to uncover the messages behind them. As the series develops, the momentum builds closer towards a shocking and dramatic conclusion, raising more questions than it actually answered, and brilliantly introducing new avenues for future series to explore. Everything about this series really impressed me, but the standout performance came from Jaimie Alexander as ‘Jane Doe’ who although excelled at the action stunts it was the vulnerability she showed portraying a woman whose entire identity had been erased that made it such a compelling watch. A series I could happily watch again and again!
Strike Back
I wouldn’t say that I am a huge fan of action dramas, but Strike Back has to be the one exception and one I can happily watch over and over again. I’ve even been known to have come to the end of the entire series of the show and then immediately go back and watch it all over again. The original series of Strike Back was adapted from a novel written by former soldier Chris Ryan and starred Richard Armitage. John Porter is a disgraced soldier recruited by a secret branch of the British military to travel around the globe in the attempt to stop major global threats while his boss does his best to cover up a mistake from his past. It was a solid series, however, Strike Back really came into its own during its second outing with the introduction of soldiers, Sgt Scott and Sgt Stonebridge, two leads who share amazing chemistry, and rival any of the best television or film comedy duos. They are engaging, and a delight to watch, and the banter they share is really what makes the show so fun and entertaining. The one-liners between the two are hilarious, and as it’s a show I watch so of, I am even able to quote them! But be warned, throughout all of the series there are many instances of explicit language as well as gratuitous sex and nudity. Certainly not something I will watch in front of my Dad!
But what also makes the show so brilliant is the high octane drama and action. The stunts are both impressive, and looks incredibly realistic and what the show will be most remembered for. Although the action is what mainly drives the show, I also enjoyed the emotionally driven storylines, examining the tortured psyches of the soldiers and the moral quandaries that they are forced to confront in their line of work. It was great to love a show that seemed fresh and new at the beginning of each new series, with ever evolving characters and brilliantly complex storylines, hunting new enemies that threaten not only the UK but it’s political and military allies. The episodes are so intense and exciting it’s hard not to get carried away and watch several episodes in one sitting!
Gavin and Stacey
Written by friends Ruth Jones and now very famous James Corden, Gavin and Stacey tells the story of the eponymous characters; one a boy living with his parent in Essex and Stacey, a young woman from Barry, a town not very far from where I live! They navigate their love affair alongside their best friends Nessa and Smithy, who although they seemingly hate each they keep sharing romantic trysts themselves!
The show is absolutely hilarious, and it never fails to make me belly-laugh no matter how many times I have watched the episodes! A great boxset to watch when feeling down, feeling the effects of living with a neurological condition.
Other Notable Mentions:
Grey’s Anatomy – it’s fun, addictive and beautifully written with strong and relatable characters that despite their flaws you can’t help but love
Criminal Minds – as someone with a psychology degree, I find their abilities to get inside the minds of serial killers fascinating
Ghost Whisperer – Jennifer Love Hewitt is absolutely compelling to watch as reluctant medium Melinda Gordon. Each episode is so emotional to watch and never feels to leave you with tears in your eyes
Designated Survivor (on Netflix UK) – with elements of 24 and The West Wing, this show is undeniably intriguing and also complicated at times. Tom Kirkland (played by Keifer Sutherland) on the eve of the State of the Union becomes the President of the United States after a catastrophic explosion claims the lives of the President and everyone in his line of succession. It’s absolutely addictive, and all 21 episodes are now immediately at your fingertips making it perfect binge-worthy material.
I always love to discover new box sets to watch on those days which leave me incapacitated by my symptoms so I would love to hear your favourite box sets and any recommendations on what to watch next!
A friend of mine, a lovely woman whom I connected with through this blog, recently asked me to take part in an awareness campaign to shed light on invisible illnesses and the debilitating effects that they can have on the lives of those affected.
We found each other as we both share a diagnosis of Functional Neurological Disorder (FND). This is a disorder which is a result of a problem, often of an unknown origin, of the central nervous system whereby the brain fails to send or receive messages correctly. As the brain controls all of our bodily functions, the list of potential symptoms is extensive and no two people with this condition will exhibit the same symptoms.
Sharing our stories can help break through barriers and shine a light on invisible illness
In many ways, there are many unknowns to this condition, but as I have and continue to experience the symptoms can be wide-ranging and debilitating. Also in both of our experiences living with such an invisible illness can be difficult and isolating as the effects of such conditions cannot be seen. As a result, my friend Harmoni Shakti wants to shine a light on these conditions to start new and meaningful conversations between loved ones, friends, colleagues and even strangers. By doing so, Harmoni hopes that all of us can start to converse, start more meaningful and truthful connections so we can better help each other through the tough times that these illnesses can bring.
Harmoni has therefore asked to help ‘light the flame’ on my own journey of life with a functional neurological disorder and my other neurological conditions to help raise awareness that has already been featured on her social media pages and given me permission to also publish on here my own blog. Do you live with an invisible illness? Why don’t you also light a flame and share your own story with Harmoni and the rest of the world? Details to get in touch with Harmoni and all of her social media pages can be found at the bottom of the page.
Imagine growing up never fitting in.
Constantly feeling like you are always on the sidelines.
That’s what life felt like for me growing up.Experiencing symptoms such as dizziness and weird sensation in the legs which no one else in my peer group seemed to experience.It set me apart from everyone else.
Encountering such symptoms and not being able to describe what I was going through sufficiently to the appropriate medical professionals during many appointments over many years.As a result, I felt incredibly alone and isolated from friends and family.
It continued for many years, dizziness and pain in my legs following me through secondary school and later university.
These symptoms and new ones including severe weakness in the legs, often resulting in them giving away on me and me on the ground unable to stand or walk. Visual disturbances, which I often experienced during childhood and was thought to be related to my short-sightedness were added to the growing list of symptoms that had become my life.With all of these symptoms, I was and continue to be unable to leave the house unaided because of the symptoms and the effect that it has on my life (i.e., the falls and being unable to get back up, especially as there are no warning signs before it occurs).
And as the symptoms worsened and became constant I felt that I became shackled to them; imprisoned to my home because of persistent and incapacitating symptoms.Left unable to work or participate in society.
I and my symptoms have stumped all of the doctors and consultants whom I’ve seen over the years; unable to find a name for what I am experiencing.As a result, I was referred to see a consultant in London.He concluded after numerous tests and reviewing my extensive medical history that several co-morbid conditions were going on; something that happened at birth or a genetic disorder causing a long-standing neurological condition which resulted in functional symptoms, or a functional neurological condition (FND).
If we think of the brain as a computer, neurological conditions such as MS or Parkinson’s Disease are as a result of a hardware problem (damage to the brain observed by an MRI scan) however often people like me can develop symptoms that have no apparent cause or damage to the brain.In this instance, there is a software problem in which the brain for some reason fails to send or receive messages correctly.
Functional Neurological Condition, like many others, is invisible.Living with an invisible illness can be incredibly lonely as no one else can see the pain and other debilitating symptoms.They think we are just like them and cannot understand the problems that we are experiencing at that particular time.Others cannot see what we are experiencing which is why we should help shine the light on invisible illnesses and the effects that they can have on the individual.
I am lighting a flame for invisible illness and for those who are affected.
To connect with Harmoni and to help with her mission to shine a light on the effects of invisible illnesses, you can connect with her on her following social media accounts:
Being undiagnosed and having no answers for the peculiar going on inside our bodies is very much like being stuck in a darkened room with no light.
Living without a diagnosis is very much like life in the dark
After every uneventful doctors’ appointments, and every negative test results only moves the light switch further from our grasp, and we remain, still in the dark. You begin to fear every upcoming appointment for the worry that this meeting will end with the platitudes that you’ve heard many times before, such as “We know there is something wrong, but we just don’t know what.” Then there is the usual carousel of different doctors from different specialities, some you may have seen before but which only yielded more questions.
In our world of living with chronic illness, the light offers answers to our predicament, in the hope of appropriate treatment and a better future.
Remaining in the dark, however, leaves us still with many unanswered questions, and living with a future of unknowns.
Having a diagnosis means living with many unanswered questions
I read an interesting article that was written after the author was eventually diagnosed with an autoimmune condition. In the article, she wrote that although she was thankful for finally being diagnosed, she felt however that nothing really changed with regards to her life with chronic illness.
And this is true, of course.
Getting a diagnosis; an answer to the big question that has been hanging over your head for a long time doesn’t really change anything. The symptoms, the limitations placed upon your life and the other effects that chronic illness has on your body and your life hasn’t really changed. Life is really the same regardless of whether or not we have a diagnosis.
But often a diagnosis matters. Some may just say it’s only a label, but when you have been in the dark for so long, it’s more than just a label. They provide answers. Validation. Proof that the doctors that were cynical in their treatment of you, those doctors that told you “it’s all in your head” were wrong, and you in your insistence that something was wrong with your own body was right.
A clinical diagnosis almost acts like a light sabre against those forces that doubted the existence of the symptoms ruling your body and life.
We need to know exactly what we are dealing with. To have some idea of what the future holds for us instead of living with unknowns and what ifs. A diagnosis matters.
It can be lonely not having a confirmed diagnosis with many people questioning if you are actually ill. Getting a diagnosis can lift a weight off your shoulders
A diagnosis can lead to answers. It is far easier to find information when searching on Google when you have specific keywords to search, such as a diagnosis of MS for example than if searching for the many symptoms you are experiencing in the hopes of coming across the answer for yourself.
It’s also far easier to find others like you, those also battling the same disease as you; to build an online support system with those who understand, swapping tips and stories of your own experiences of living with the condition. A diagnosis matters.
A diagnosis can lead to treatment options where there were none before. And it’s these treatment options that can provide hope and a chance at a better quality of life. A diagnosis as well, of course, can also help with practical matters such as helping to qualify for disability and other types of assistance. A diagnosis matters.
Having a clinical diagnosis can help with practical considerations such as applying for disability benefits that you might be entitled to
For me, I have been waiting for more than most for a definitive clinical diagnosis for symptoms since young childhood, some possibly since birth. For years, I have seen so many different specialists, sometimes more than once. Received the cliched response that the symptoms are due to depression and anxiety and sent on my way with a prescription for medications to treat such ailments but still with no improvement. Years with no name or explanation for what I was experiencing. Years of disappointment and hopelessness after test after test came back normal.
Last year I was referred to see a specialist neurological consultant in London and which I attended last month. I admit I went to the appointment with not much expectation, after many years of disappointment I have learnt the hard way not to get your hopes up as they will inevitably be dashed with a lack of answers, leaving with no diagnosis and an uncertain future.
However, although I came away from this particular appointment with no formal clinical diagnosis, I feel that I have found a small flicker of light in the darkness of suffering. After the consultant’s senior registrar took a thorough clinical history, gave a detailed neurological examination and poured through my hospital notes, the mystery that is my life and has so far eluded many doctors, he left the room to consult with the top neurologist at the hospital to discuss my case.
Getting some answers means that I can finally see a glimmer of light within the dark tunnel that I have been living in
He concluded that the problems I have experienced, and are still are experiencing are due to a neurological problem of some kind but unsure of the exact cause or even a name for what I was experiencing. Due to the problems I had shortly after birth, he concluded that it was highly likely the cause of many of my symptoms was from birth and may either be due to damage to the brain during the delivery or even a genetic condition of some description. Could it be that whatever condition I am suffering was determined before I was even born? That the development of the symptoms was inevitable like me having blue eyes?
Apart from the unknown neurological condition, the consultant also felt that other problems were going on, diagnosing me with a Functional Neurological Condition, which I have previously written about after a local specialist diagnosed me with FND. Apparently, it is common for patients exhibiting functional symptoms in conjunction with other illnesses.
Alongside these, I was also diagnosed previously with a vestibular condition; a weakness of the vestibular nerves (those nerves that run from the ear to the brainstem) resulting in dizziness and vertigo. It is not uncommon for those living with chronic illness to experience more than one condition. Like jugglers who juggle many balls at once, our bodies often juggle many symptoms from different ailments at once. Each symptom vying to be the centre of attention.
Having one or more diagnoses means juggling many symptoms, all of which compete for attention
In the meantime, the consultant is going to speak to other specialists from other departments to narrow down the possible suspects that could be the cause of the as yet undiagnosed condition before doing investigations such as genetic testing.
So, although I left this most recent appointment with no definitive answers or a definite diagnosis, however, I did leave with hope. Hope that we are one step closer to an explanation for symptoms that have been with since a baby. Validation that although we are not sure of exactly what is wrong with my brain, I have been reassured that there is something wrong, and it’s not ‘all in my head’ (well technically it is, but you know what I mean).
Like a light at a window, I can finally begin to see the light but am just not able to touch it yet.
I’m not at the end of the diagnosis journey, however, but I can finally begin to see the light although unable to touch it just yet.
Living with a long-term health condition is hard. Every day seems the same with juggling the ordinary daily tasks of life with the many symptoms and other effects that chronic illness imposes on our body. There are so many demands on our bodies, which is why self-care is so critical to our overall well-being.
Self -care can take many forms. Relaxing, participating in a favourite activity or hobby or just taking time out to enjoy a luxurious bubble bath are some ways which we can take time for ourselves to rest and unwind from the stresses of life with chronic illness. And self-care is also important to help elevate your mood and provide a little light and happiness from the darkness that chronic illness can sometimes create.
I’m writing about a special brand collaboration, which I thought would be beneficial for those like me, living with a chronic illness and finding that it has an adverse impact on their mental health, suffering from stress, anxiety or depression alongside their physical health problems.
The brand in question is called The Distraction Box, started by the lovely Rachael and Samantha. I did a little Q and A with Rachael, one of the founders behind The Distraction Box about the inspiration behind the company and about self-care.
Hi Rachael, Why don’t you start by telling us a little bit about yourselves and your business The Distraction Box Distraction Box was founded by two female business women, Rachael and Sam. Rachael was forced to leave her high-flying career in Marketing due to health challenges. After major spinal surgery, serious complications and a subsequent diagnosis of a further two nasty chronic illnesses, Rachael’s life changed dramatically overnight. Rachael has to work really hard on her health to participate in life – including her emotional health. That’s where the business idea came from – passion and personal learnings.
Sam is a Dr of Physiology who has a particular interest in the effects of stress on our physical health. Sam has also had to live with depression since the age of 17 so also had to work hard on her emotional health. Both founders share a passion for emotional well-being so we thought we’d make a great team!We launched the business in October 2016 and position ourselves as a well-being subscription box for the mind. We also have one-off boxes which are great for gifts for loved ones going through hard times. Our subscription packages are available for those who want to invest in their emotional well-being on a regular basis. We encourage people to invest in their emotional health and not just their physical health. We have a monthly, 3 monthly and 6 monthly subscription packages and each can be cancelled at any time and very easily.
Where did the inspiration for The Distraction Box come from? It’s a great name! How did you decide upon it? I used to be an athlete and had the belief that you could do anything in life, as long as you were prepared to work hard enough, and if your heart desired it. Then, 6 years ago I had a major health challenge that changed my life. In a nutshell, I suddenly had physical limitations that meant I had to change my life completely and found myself not being able to do ‘what I wanted when I wanted.’This affected my emotional well-being, and I was struggling to cope with grieving my old self, and the frustrations with my new life. Thankfully I was offered counselling to help me with my emotions – and I found the courage to embrace it. This was the start of my journey with coming to terms and accepting what life has thrown at me, and even changing my mindset to help. During that journey, I joined a health group which focused around teaching people how to live with chronic illness.One of the tools I was taught was how to create distractions from physical pain and/or the emotions that come with living with an illness that affects your everyday. I created my own Distraction Box filled with items that comforted me, helped ease physical symptoms, or simply cheered me up when I was struggling to remain positive. I love creating my own Happy Distractions and felt that more of us should create them in our everyday lives. We all face stress and pressure, but not enough of us take the time to ‘switch off’ or manage overwhelming emotions in a positive way.
How do you decide on the products you select for the boxes? What are your favourite products that have been inside your lovely boxes? Both of the founders spend a lot of time researching the right products that we feel would create happy distractions. We can’t pick many favourites as we love them all (or they wouldn’t be in the box). However, we love JustBe Botanicals, Re-Mind notepads and the slate heart of self-love which was featured in our February box.
Self-care is a big deal within the chronic illness community. What are your favourite ways to relax and unwind? I have too many ways! I can’t say a specific favourite, but I do love water. I’d say visiting the pool – even if it’s for a float to take the edge off my pain, or to go for a swim and build strength, I love it. I have regular hot baths too and have different bath bombs and oils depending on what mood I’m in. I also meditate once a day if I can – I love finding out where my mind will take me that day!
What do you hope to achieve with The Distraction Box? We hope to spread a little happiness across the UK and beyond, but with an important message; emotional well-being is just as important as physical health. Working on the mind is a strength and not a weakness – we are so passionate about that.On a practical note, we are hoping the boxes will raise enough money to set up ‘talkitout’ which will change the way the UK view talking therapy. Watch this space…
I was sent a box for myself to unveil and review for the blog.
The Distraction Box for March was based on the theme ‘Hibernation to Happiness’ which was essentially all about stepping out of the hibernation period of winter and into the lighter, brighter days of spring.
The box arrived after a long night of insomnia as a result of chronic pain, so just receiving the box was enough to cheer me up. Upon opening the box, I was greeted with a little green parcel which contained all of the month’s goodies. It was beautifully packaged and wrapped with care which made me appreciate receiving it even more. It felt special like having received a special gift for Christmas or a birthday. With the goodies was also a little booklet which outlined the theme for the month and a description of all the goodies contained in the month’s subscription box.
One of the first things that I noticed after opening the box was a gorgeous citrus scent from the Beefayre ‘Bee Happy’ Tea Lights that are scented with orange and jasmine essential oils. It immediately lifted my mood and helped me to relax despite feeling uptight after a night dealing with pain. One of my favourite ways to relax and unwind in the nights is to read or watch something on my iPad while I light a scented candle and so I really loved receiving these. And they are natural which is a bonus!
I have previously mentioned that the recent popular craze of adult colouring is also becoming a favourite form of self-care for me when I am feeling anxious or just need to distract my mind from the all-consuming symptoms. So, I was ecstatic to receive a mini Mindful Colouring Pad with colouring pencils! They are sweet, and the best thing is that both the colouring pad and pencils are pocket sized – perfect for slipping into a coat pocket or handbag to take out on trips, such as hospital appointments so you can take a little time out from your thoughts or anxiety.
Also, in the box was Birchall’s Green Tea and Peach Infusion Tea Bags and the BakedIn Gluten-Free Mug Brownie Mix, both ideal for those who are health conscious and want to look after their physical well-being as well as their emotional health. I’m not gluten intolerant myself, but again the thought of Rachael and Sam for those who may have such intolerances really shows their understanding of such concerns within the chronic illness community.
I love writing handwritten letters to friends or other special people in my life. And I also love to receive handwritten letters, in my opinion there is nothing better than to receive a thoughtful handwritten letter in the mail and which feel a lot more personal than an email or text message. Which is one of the reasons why I participate in a project called Spoonie Post whereby every month you send a letter or card to a fellow chronic illness warrior to say hello or to cheer them up during difficult times. In this month’s box was two cards with envelopes which I will be able to use for this project and brighten someone’s day!
And finally, and probably my favourite item from this gorgeous and positive box was the Happy Mug (perfect to enjoy the green tea and peach in). With simple colours, and finished with a rose gold detail it has a beautifully inspiring and positive quote that we should all aspire to every day. I’m not a big hot drink fan, but I am sure that I will enjoy using this mug during times of self-care in the future.
I loved this subscription box, and all the little goodies were perfect for taking the time to invest in my emotional well-being and for anyone else also living with the effects of a long-term health condition. I know in the US and Canada various companies have subscription boxes specifically for those with chronic illnesses, but nothing similar here in the UK (although The Distraction Box does ship worldwide). However, I think The Distraction Box has this niche market in the bag and would definitely invest in a box in the future during a bad flare or maybe even buying it as a gift for someone going through a difficult time.
If you would like to try out a one-off Distraction Box or are willing to invest in your emotional well-being and sign up for a monthly subscription for a Distraction Box, then go and visit their website and use my code ‘brainlesionandme’ for a 10% off your first box/subscription and enjoy the benefits of their take on self-care for yourself.
And let us take a look at your enjoyment of your own Distraction Box by using the tag #HappyDistractions!
My Brain Lesion and Me 