I’ve been thinking a lot lately about the labels we have attached to us when we have a chronic physical or mental illness. They are powerful labels that can be associated with a lot of stigma, sadness or make you feel a little bit hopeless. I am trying to think of labels as something I ‘have’ rather than ‘am’.
When you have any kind of illness (mental or physical), it’s often likely that you will receive a diagnosis or something that labels the struggles you are having. Sometimes there can be a huge relief from having an understanding of what is happening for you, or a diagnosis / label that can lead to additional support or treatment; but sometimes a label can feel like a negative thing, it can lead to feelings of hopeless and shame.
As someone who has had difficulties with their mental health for a number of years, I have experienced the challenging and often complicated feelings that come with being given a label for a condition. It feels like some illnesses and difficulties can rate higher on a scale of what’s socially acceptable; whereas others aren’t spoken about and feel almost taboo. Some conditions are frowned upon and seen as ‘fake’ or unworthy of support or care.
I’ve been thinking a lot about the other labels that represent me. I have mental and physical health conditions but I’m not ‘broken’ or ‘mad’; I’m poorly and that’s ok. It’s not my fault and it doesn’t have to be my identity. I ‘have’ mental and physical illness, which is a part of my life that I have to manage daily. But I am also learning to love that I am a creative who can write, paint, journal, crochet and think in ways that are a little out of the box. I’m a writer, fundraiser, project manager, sister, daughter, cat mumma… and so much more. I am proud of who I am and I won’t let my illness take that away from me.
Hi, I’m Roz, and I’m the artist behind North Mayo Fine Art.
I’ve been creating art for most of my life, but have been an artist for 3 years. I might not have become an artist, had it not been for the fact that I became disabled, with multiple chronic illnesses, and became housebound.
I want to tell you a bit about what happened to me, and why I’m thankful that my life took the turn that it did.
I started to draw at a young age, and could always be found with a pad and pencil in my hand. My first drawings were the normal, square houses with the sun in the corner, and the V shaped birds. I remember drawing various animals including lambs, chicks and a horse that I was so proud of, and my people were the typical triangle body and fat arms and hands that rolled into one object. I was so proud of my drawings, and thought that they were the best drawings in the world.
I took art at school and enjoyed it so much that I asked the head of the art department whether I could take an extra GCSE in art, which I did (I did 2D and 3D art) I then went on to do a GNVQ in Art and Design in the Sixth Form.
I decided to get a job, and at that point my drawing took a step back, but I still dabbled in it from time to time. I always wanted to work in photorealistic art and that was always in the back of my mind.
Fast forward a few years, and I met my husband, and we decided to start a family, and thats where it all went wrong (for me).
Without going into a lot of detail (and boring you all), my pelvis broke and fused back together in the wrong place, and no one did anything about it. My consultant said it was normal pregnancy pain and I was just exaggerating it for attention. I was so angry. It happened again during the 2nd and 3rd pregnancy too, and still nothing was done.
I now have permanent damage to my back, hips and pelvis and I’m registered disabled. I’ve also developed multiple chronic illnesses including Fibromyalgia, Arthritis, IBS, Postural Hypotension, Asthma and Chronic Migraines to name just a few. I’m not telling you this for pity, but there is a reason for it.
I started many different crafts when I was at home with our first baby, including card making, stamping, crocheting, sewing, paper craft, cooking and weaving, and loved creating hand made items, but after baby number 3, my condition was so bad that I had to give everything up. I hadn’t been able to drive for a long time, my body was too sore to sit at a table to work, and I developed an allergy to every type of wool that I bought. I could no longer stand up to cook either, and I felt like my life was over. I was housebound, and on the verge of bed bound.
I was in so much pain that my bed became my best friend. I couldn’t dress myself, I needed help to have a shower/bath, and had to have the house kitted out with home aids to try and help me manage with everyday tasks. This was not how I imagined my life would be at 27.
I was in a very deep black hole and couldn’t see a way out. I thought that my life was over, and didn’t want to imagine the rest of my life lying in bed in agony. I fell into a deep depression, I hated having to be so dependent on my family, and incapable of managing the simplest of tasks on my own. Being in excruciating pain all the time was awful, and there was nothing I could do to change it. I’m allergic to all pain medications so couldn’t take anything to ease the pain, and other medication I was offered caused some awful side effects.
After many months of wallowing in my own self pity, I decided that I had to pull myself together and find something that I could do. No one else was going to fix me, no one understood what I was going through, and it wasn’t their fault, but without going through something like this, it’s impossible to understand the utter torment that comes with it, so I had to do it myself. I had to drag myself out of the deep black hole and try and get some purpose back to my life.
Thirsty Leopard
I got my pad and my pencils out and started to draw. It was something that I could do in bed on my worst days, and curled up in the chair if I felt up to getting up. I could pick it up and put it down whenever I needed to.
Once I realised it was something I could focus on, I started to set myself goals, and challenges, and aims for the future. I started to show my friends online what I’d drawn and got an amazing response from them. It gave me the confidence to start using coloured pencils.
I was determined to improve my techniques, and succeed in my goal to create photorealistic drawings. I worked long and hard, knowing that if I put the effort in, I would get the results I wanted. I also knew that it was going to be a long process, there were days that I could only manage 10 minutes before I had to stop and sleep, and other days I could manage a couple of hours, but I didn’t give up.
Pet Commission
As my work improved my friends started to ask for portraits of their pets. I was thrilled that people liked my work enough to want it in their houses. Slowly but surely more and more people came to me wanting work, and my work was getting noticed in more and more places.
In the last 18 months I’ve had my work published in several coloured pencil magazines, I’ve had an article published about taking my own photography for reference photos, and I have 2 exhibitions booked in galleries in the next 12 months. I’ve also brought out my own range of products.
I’m attending my first Craft Fair in August, which will be the first of many fairs and markets that I will be attending.
I still have bad days, days that I can’t face anything more than dragging myself out of bed and down the stairs, just to curl up on the chair and sleep in my pyjamas, and then there are days that I feel well enough to have a shower and get dressed, which is a huge deal for me. Mornings and evenings are hard for me as they are the most painful times of the day, but I manage the best that I can, and when I feel upto drawing I take full advantage of it, and try and create something beautiful.
I feel very lucky, because lots of opportunities are coming my way and I have a very bright future to look forward too, with lots of exciting plans in the pipeline too. None of this would have happened if I hadn’t become disabled, as I would still have been working full time and wouldn’t of had the time to put into my drawing the time that was needed to have been put in to get to the stage that I’m at now.
Hungry Wolf
If I could give anyone that lives through disability or chronic illness one piece of advice, it’s never to give up on yourself or your abilities to achieve anything that you want to. You might have to take a different approach, or work in a different way, but it’s still achievable. You will go though hard times, and you might lose sight of the positives in your life, but they will still be there, and with hard work and perseverance, you can achieve anything that you set your mind to. Take the rough with the smooth, and live your life to the best of your abilities, whatever they are.
Throughout the world there are thousands upon thousands of people living below the radar. Struggling just to exist, let alone be ‘functioning’ members of the community. These people, people like me, live with disability. Together we form a huge portion of the global community, but with so few of us in the public eye it’s hard to get our stories out there. So that’s what I’m hoping to do. I’d love to give you a window into our lives, a hearty welcome and a good look around!
Jennifer looking snazzy in her sunnies.
Jennifer is a forty two year old lady who has suffered with Spina Bifida since birth. Basically her spine did not form properly, causing her to live with a host of health problems throughout her life. These include not only crippling pain and loss of sensation, but also mobility issues. For a long time Jennifer fought hard to get around on crutches, until eventually her body could not manage anymore. She is now permanently wheelchair bound.
You don’t need a cape to be a super hero.
As Jennifer doesn’t have the upper body strength to propel herself, she relies on others to get her about. Luckily she has a wonderful husband who loves her dearly. He happily devotes himself to caring for her, cooking her meals and taking her anywhere she needs. It takes a special bond to love through severe disability, and they have it. As I’m sure you can imagine, living in constant pain and exhaustion is not easy. For Jennifer, as with many of us struggling with disabilities, depression has dogged her life. Trying its best to creep it’s way into her psyche on even the brightest of days. But she does not let it win!
The lovely Monty, smiling with Mum
Jennifer has filled her life with so much love its overflowing. How? With her beautiful pooches and pussy cats, who brighten her days with their bouncy personalities and unwavering adoration. One such companion was Monty. A cheerful West Highland Terrier, he was Jennifer’s constant companion of seventeen years. After seeing her through both good times and bad, he said his goodbyes and grew his Angel wings in August of 2015. That loss was one of the toughest to go through, and coming to terms with it has been hard.
You’d think that with so much difficulty in her life Jennifer would be bitter? But you couldn’t be further from the truth. As soon as you speak to her you feel an eternal optimism exuding from her. This strong woman will not let anything bring her down for long. So much so, that rather than wallow in grief, she has turned the harrowing loss of her beloved pet into something positive. Jennifer has chosen to craft. She crafts through pain. She crafts through depression. She crafts through the melancholy of day after day of living with disability. In fact, she’s made so much that she’s even opened her own shop, Monty’s Makes.
A handful of items to be found in Jennifer’s shop
Jennifer sells a whole range of beautiful bespoke crafts. Each item can take her days, if not weeks to complete. She does all her crafts sitting down, but due to pain in her back she has to do several short sessions on and one piece. To keep things interesting Jennifer likes to hop from piece to piece. When asked about her crafting she says:
It might take a while to get things done, but I never give up. I enjoy it as it helps me to take things not so seriously.
When visiting Jennifer’s shop you are immediately hit by the sheer volume of beautiful work she has created. From the kitch hand sewn items, to the funky jewellery. There’s something for everyone, not forgetting of course a good dose of doggy themed makes. How could she not. Here’s a few of my favourite pieces:
Blue chipped bracelet
I love the jade green and aquamarine hues of this beautiful bracelet. Being a bangle its so easy to pop on, perfect for someone who struggles with fine motor skills like me! Each loop of the bangle has had two of the shimmering beads attached by hand, creating a truly decadent and stunning piece of jewellery. My jaw literally hit the floor when I saw the minuscule price tag. It’s definitely one for my Christmas list!
2 Felt Bird Decorations
A sucker for anything kitch I adore these little felt birds. I can imagine them adorning the nursery of a well loved newborn. Or dancing merrily on a cot mobile to help soothe baby to sleep. Alternatively they’d be great looped through the Zips on handbags as a quirky adornment, looking cool and making the zip easier to grab at the same time. Another feature I love is that Jennifer allows her customers to customise these and many other items, offering a variety of colour choices.
Book or tablet cushion
Finally I have to say that I ADORE this iPad holder. With the issues I have in my wrists I really struggle to hold my iPad. This is not great as I spend the majority of many days in bed, with only my iPad for company. Sometimes the pain is too bad to even hold it. My husband did buy me a small plastic stand, but due to resting it on myself, I often end up with my iPad smacking me in the face. No fun. This is absolutely perfect!! It’s sturdy and pretty and everything I could want in an iPad stand! Even better I have no doubt it could be used for mirrors and even books. I’m really feeling all the love for this item!!
Just when I really thought my admiration for the drive and determination shown by Jennifer could go no further, she surprises me once more. Because Jennifer takes no profit whatsoever from Monty’s Makes. You see in 2002, after a harrowing four year battle with lung cancer Jennifer lost her Father. Then last New Years Eve more sorrow befell her family when her sister in law sadly passed from Breast Cancer. Even with all her own hurdles Jennifer couldn’t sit back and do nothing. So that was why she decided to create her shop and donate all profits to Cancer research. And what does Jennifer have to say about her wonderful gesture?
I just wanted to help others, like I’ve been helped all my life.
If you too want to help others please take a look through Monty’s Makes and see if anything catches your eye. Otherwise feel free to make a donation at Cancer Research UK. Jennifer would really appreciate it.
**Beautifully Written by Jennie Louise Smales from This Little Life of Mine. Please note this is NOT a sponsored post. No money or goods were exchanged for the writing of this post.**
Spanish-style music was playing in the background. It was unusually hot for October, but I could feel a slight breeze on my cheek. The nerves in my limbs were twitching like they wanted to get up and run yet felt like they were being held down by cement. My eyes were closed, but I could see lights dancing and swirling like waves of fireworks in my head. I vaguely heard a man walk by and comment in my direction, “I guess you can have too much fun.”
This was me—sprawled out on a table in the wine garden at Disney’s California Adventure Park. It was the nearest place I could get to after exiting a ride with my kids and sensing I was going to collapse. It felt like I was in a dream. I had no perception of time or the fact that I had been non-responsive for over two hours.
The paramedics that huddled around me were prodding me and asking me questions, but they seemed so far away and I was just too tired to answer. Too tired to open my eyes. Too tired to move my leg that had fallen asleep some time ago. In the back of my head I could hear a frantic voice whispering, “Something is very wrong!” But at that moment I was just too tired to even care.
Little did I know that this incident was the beginning of an illness turned disability that would change my life.
Postural Orthostatic Tachycardia Syndrome (POTS)
So what was this mystery illness? Postural Orthostatic Tachycardia Syndrome, also known as POTS. As my doctor explained, upon standing my heart rate increases much more than is normal. While this is a defining characteristic of my condition, it is not just my heart rate that is altered. POTS is a dysautonomic disorder. It affects the autonomic nervous system, which controls our bodily functions that we don’t usually have to think about, like heart rate, circulation, blood pressure, breathing, digestion, temperature, hormone production, etc. POTS can be triggered suddenly by a trauma or viral infection, as it was in my case. (I’d had a sore throat for a week and been under a lot of stress from work as we embarked on our family vacation.)
While many of my symptoms are present all the time, they are amplified when I’m sitting up and even worse when standing. Because of poor circulation and low blood volume my brain suffers from not enough blood and oxygen. My symptoms include brain fog, dizziness, migraines, chest pain, nausea and other gastric issues, temperature control problems, and extreme fatigue and lethargy. I get overstimulated quickly– movement, light, and especially noise really affect me. Additionally, my body overproduces adrenaline, causing intense tremors and muscle spasms.
Overnight I went from being a relatively healthy, active person to someone who could barely get out of bed.
Chronic Illness Affects the Whole Family
Katie Carone Mommy Can’t Dance
I have always been a go-getter and an overachiever– from dancing 4-6 hours a day and attaining valedictorian in high school to an adulthood of teaching group fitness classes, owning and operating a small business, and being a wife and a mother of four. To lose my mobility and functionality was devastating.
This condition was not just life-altering for me, it affected my whole family. I could no longer take my kids out for the adventures we loved, like going to the children’s museum or hiking in the mountains. I couldn’t go to important events like music concerts, dance recitals, or preschool programs. And the day-to-day limitations were even harder to accept. I could no longer make dinner, help kids with homework, or get them ready for school or bed. I oftentimes could not even get myself out of bed without collapsing. (My husband has found me on the bathroom floor more times than I care to admit.)
I was battling to come to grips with my new reality. But I was not the only one. My kids were also struggling to comprehend why I couldn’t do what I used to do.
Our family has a tradition of taking turns sharing good news and bad news each night at dinner. The nights that I could make it to the dinner table, I noticed a trend in the news my kids shared. My four-year-old twins started repeating the same news night after night. “My good news is that I love mommy. My bad news is that I miss mommy.” Even my 10-year-old daughter would say, “My good news is that mom was able to come out for dinner. My bad news is that mom is still sick.”
I have vivid memories of a meltdown my daughter and I had one evening as she was preparing for her dance recital. She came into my room so I could do her hair, yet I couldn’t even sit up on the edge of my bed long enough to do it—let alone make it to the recital.
Over the holidays, one of my twins rushed into my room so excited for me to come see the Christmas tree he had helped decorate in the basement. After five minutes of him tugging on my arm begging me to come, and me trying to explain why I couldn’t simply get up and walk down the stairs, we both ended up in tears.
These are just a few of many examples.
Mommy Can’t Dance
As a mom, it is no fun to feel physically awful, but it is worse to know that your kids are suffering too. I hated that my illness was affecting my children. I needed a way to help them understand that my illness and inability to do things for them or with them in no way affected my love for them. Additionally, any chronic illness brings with it feelings of helplessness for the patient and the loved ones. I wanted my kids to find ways that they could feel helpful and loved. Thus, the book Mommy Can’t Dance was born.
While this book is near and dear to my heart, I recognize that I am not the only mom struggling with chronic illness. I hope this book can help other mothers and children that are similarly struggling.
The children’s book “Mommy Can’t Dance” is available at:
In an effort to further the advocacy and research on POTS, the illustrator and I are donating all proceeds of the book Mommy Can’t Dance to Dysautonomia International a 501(c)(3) non-profit founded by patients, caregivers, physicians and researchers dedicated to assisting people living with various forms of dysautonomia.
While I wish I could write a fairytale ending to my personal story, that is simply not the case. I have found a few medications that have helped, and I continue to pursue additional treatment options through trial and error. Like many others who suffer with chronic illness, I understand that this may be a lifelong condition. However, I refuse to give up or give in, and I hope to someday report that mommy can dance again.
Ever since I was little, I’ve wanted to do two things: be a writer, and work with animals. At one point I wanted to be a vet (even though I don’t particularly like the sight of blood), then I wanted to go into animal conservation. I’ve always loved the idea of working at a zoo. I had these big dreams of all the work with animals that I’d do when I was older. And in my spare time, I’d fulfil my love for writing, creating imaginary worlds where anything was possible.
But, when I was a teenager, I became really ill.
The strange symptoms first started around the age of seventeen, and all my doctors were baffled. Many just wrote me off as “an anxious female”, saying it was really common for teenage girls to faint for no reason. But, when I was nineteen, and after many tests and many doctors, I found out that I had some pretty rare conditions: I’d been born with Ehlers-Danlos Syndrome (a genetic disorder where the body produces faulty collagen) and, because of this, I also had several forms of dysautonomia (autonomic system dysfunction that affects almost every part of the body), including Postural Orthostatic Tachycardia Syndrome, meaning my autonomic system doesn’t work properly every time I’m upright—sitting, standing and walking.
These diagnoses explained a lot of the symptoms I’d been dealing with for the last few years. But knowing that I had these chronic conditions—EDS is genetic; it’s a DNA error—and that a lack of research meant none of them yet had a cure made me worried. I suddenly saw everything in terms of what I couldn’t do. And it was around the age of nineteen that I really understood what this meant, and the impact it would have on my life. With my conditions—the frequency of my fainting, and how my autonomic system no longer works when I’m in an upright position—unsurprisingly, I’m not allowed to drive. It would just be too risky. I don’t always get warning before I faint (and often my faints look like fits), and I get problems with my vision thanks to a lack of oxygen to my brain when I’m upright (sitting, standing, and walking).
But these illnesses also limit the amount of physical work I can do. Every time I’m upright my autonomic system malfunctions, and sometimes, I can barely stand up without getting a heart rate that’s in the 200s even when I’m doing nothing but standing (yeah, my autonomic system really doesn’t work thanks to POTS). I also faint frequently—which can do a lot of damage in itself, if I faint when I’m standing up—and I’m constantly dizzy; even moving my head from side-to-side can trigger an episode of autonomic dysfunction (during which I literally cannot do anything but lie still and wait for it to pass). And that’s not to mention how fragile my joints and muscles are due to the error in my DNA (Ehlers-Danlos Syndrome). I’ve dislocated major joints just walking—which sounds ridiculous given that I used to compete at athletics and cross-country running. But apparently it’s not unusual for those with EDS to be less affected by it when they’re younger, so much so that they don’t realise they have the gene until they get older and start experiencing the symptoms.
Pretty soon after my diagnoses, at the age of nineteen, I realised I most likely wouldn’t be able to work with animals as a career. Not only could I not drive myself to such a place of work, but also I’d probably end up collapsing or fainting after being upright for a little while, and I’d be too nauseated, due to autonomic dysfunction, to do anything. Just a short walk can leave me exhausted, thanks to this condition. And besides, my joints would be dislocating and subluxing the moment I tried to carry anything.
This is where my writing really came in.
Now, don’t get me wrong, I’ve always loved writing. It’s not the case that I got ill and then I started writing. No. I was writing seriously from the age of nine or ten; writing has always been one of my dreams. I had my first short story published at the age of sixteen, and when I was seventeen I completed my first full-length manuscript of 137,000 words. Writing is just part of me. It’s who I am and I have to write. It keeps me sane!
But, realising that I wouldn’t be able to work with animals, and that a lot of jobs would be nearly impossible for me to do in my current state of health, really made me focus on writing. It made me determined to be a successful full-time writer, because writing was one thing that my illnesses hadn’t stopped me from doing.
Even though I’m unwell and unable to move much due to my faulty autonomic system, I can still write. And I can fit my writing around the crazy number of hospital appointments I seem to have most weeks.
I’d always been a voracious reader, but now I read as much as I could get my hands on, and I wrote in every spare minute I had. It was escapism from my illness partly; when I wrote I wasn’t just this sick girl, I was a writer creating amazing worlds and I was living through my characters. But it was also something more. Writing was part of me. I had to do it.
I sent more and more short stories out until I had over fifteen accepted for publication, and then I began concentrating solely on novels. I wrote and then rewrote what I had, countless times. I set myself the goal of writing 2,000 words a day and I soon settled into a routine where I’d try and meet that word count. Some days I managed it. Other days (particularly if I’d had a bad episode, or a hospital appointment) I didn’t.
But I kept writing, determined to write a book that a publisher wanted. With every novel manuscript I wrote, I could see my writing getting stronger. And it was my fourth full-length manuscript that really worked—and four publishers made offers on it.
Aged nineteen, I signed my first book deal.
A year later, my debut novel, Untamed, a dystopian story about addiction, loyalty, and survival released from Prizm Books, the YA imprint of Torquere Press, in both paperback and ebook formats.
By this time, my illnesses were getting worse, and I was struggling to attend even a couple of hours a week at university. I was unwell all the time, and in a near-constant state of presyncope that could (and regularly did) develop into full-on fainting at any moment, as my consultants had yet to find any medications that helped manage my symptoms. I really began relying on my writing. And, it was during my third year at university, after I’d written a new manuscript and signed my second book deal, that I fully realised I wasn’t just a chronically ill person, I was an author as well. Sure, I’d realised I was technically an author during my second year at university, when my debut novel released, but a part of me hadn’t actually believed it then.
But now I realised what I’d done: I’d achieved one of my dreams—arguably my biggest dream—despite being chronically ill. I’d proven to myself that just because I was ill, it didn’t mean I couldn’t achieve anything. I could still be the writer I’d always dreamed of being.
Fast forward to the present day, and I’m 21, and my second novel, Fragmented, is set to release on 7th September 2016. Even though my health is still the same, and my consultants haven’t yet been able to find a way to successfully manage the daily symptoms of my illnesses, I’m currently working on the first drafts of two new manuscripts, as well as editing a third. And last month, I also managed to finish my degree—at the same time as all my friends. I’m pretty sure this was because I had writing to fall back on during those agonising weeks when I thought I’d never manage all the university work. Writing comforted me. And I’m so grateful that writing is one thing I still can do, when there are many things I’ve had to give up (horse riding, athletics, gymnastics, cross country, etc.).
This is why I won’t let my chronic illnesses stop me from being a writer—from being who I am. Because writing gives me an identity, it gives me something to hold onto. I may be chronically ill, but I’m also a writer.
And I have to keep writing.
About Madeline Dyer…
Madeline Dyer lives in the southwest of England, and has a strong love for anything dystopian, ghostly, or paranormal. Her debut novel, Untamed (Prizm Books, May 2015), examines a world in which anyone who has negative emotions is hunted down, and a culture where addiction is encouraged. Madeline’s second novel, Fragmented, is set to release on 7th September 2016, from Prizm Books.
For more information, please check out her website. Follow Madeline on Twitter, Instagram, Pinterest and like her Facebook page to receive the latest information about Madeline’s writing.
Would it surprise you if I told you that the majority of people whom I count as my true friends in life are people I’ve never actually met?
Of course I do have a couple of normal friends (literally two). Women who have known me since high school and I know will always be part of my life. Women I’m eternally grateful for. Plus, there’s my husband, who’s my best friend. But, other than that, the people I rely on are thousands of miles away.
How can this be?? Well, when living with chronic illness it’s hard to find people who understand. I’m very lucky, because those in my life always try their best. They treat me with kindness and patience and bring humour into my life regularly. But it’s hard. It’s hard for them and it’s hard for me. Hard for them, because no matter what they will never know what it TRUELY feels like to live in my shoes (something which I’m happy about, I would never wish this on them). Hard for me because I constantly wish I could keep up, or do better. Like I have to justify myself, even though I don’t.
So, as you can imagine, life can be very lonely and frustrating. Feeling alone whilst wrapped in the loving bubble of your friends and family is one of the most challenging feelings that accompanies chronic illness. Because of that, I sought out support groups. I wasn’t well enough to go out and physically attend one (plus finding one locally that matches my rare illness would be much like finding a needle in a haystack) the Internet became my searching ground. Facebook in particular.
I soon found several groups, and over zealously joined them ALL. Finally, people like me!! Except no. I soon found out that every group has a different dynamic, and some people in them are just craaaaaazy. It takes time to find a place to fit in. Over the years the groups I’ve used have changed and evolved. They’ve shrunk significantly. But now, now I have my friend base.
I’m in a small group made entirely of women. Those women understand me, and it is EVERYTHING. We support each other on hard days. We laugh. We cry. We take the mic out of this health crap in a way only people suffering can. We care for each other. Isn’t that what makes a TRUE friend? Knowing that someone is in your corner, no matter what?
No, I’ve never met these amazing women in person. But they know the bones of me, and I them. They literally saved me on my darkest days. My prison of my bed is not as lonely with their chat and banter. My achievements are less feeble to those who know what an effort just being is. My life is more enriched. I can enjoy my other friends and my family more, because I can air my frustrations with those who understand.
If you are living with chronic illness, I urge you, please find your friends. Find the group of people who do not judge, and will be there on those dark nights. People who will laugh with you at the dire straits you live in, and it’s ok because they’re in them too. In this day an age, nobody has to feel alone. Your friends are out there. They might just be on another continent.
Life changes when your health deteriorates. Suddenly you’re no longer living on your own schedule anymore. Every aspect of your life beats to the tune of someone (or something) else’s drum.
I used to choose what I did with my time, how many hours I worked, if and when I socialised, what activities I did to fill my time. (Because in those days time was something to be filled with limitless and varied options.) Yes I still had exhaustion and pain, but nowhere near the life sapping amount I have these days.
But now? Well, let’s just say, things have changed. My health decided to strip me of my energy, and my ability to work. With that went my social life, which doesn’t matter as I don’t have the energy for it anyway. Finally those time filling activities, they went out the window too. I’m sure you can guess the culprit.
So now I wait.
I wait for doctors appointments. I wait for tests. I wait for the results of those tests, so I can wait for doctors to decide what they want to do next. I wait for medications to work into my system, I wait to wean off other medications. (It’s an ever changing cocktail.) I wait for pain killers to kick in. I wait for my body to let me sleep. I wait for my husband to realise he can do better. I wait for my daughter to wish she had a fun mummy. I wait for the summer when my joints ache less. Then I wait for the winter when I’m less likely to collapse.
Everything is waiting. My life is waiting. Waiting for a miracle so I can ‘get better’ from my list of incurable chronic ailments.
I know what you’re thinking. Wow, that’s depressing!! Well yes. For a very long time it was. In fact, sometimes it still is. But luckily my husband assures me he will never get sick of me. My daughter (and step son) fill my days with smiles, stories, cuddles and laughter. My pets provide companionship whilst I’m stuck in bed. My few friends that remain are loyal and understanding. My new friends from various medical support groups are loving and funny. My good days are spent making the most of them as best I can with the people I love.
So I wait. But whilst I wait, I live. It may not be the life you have, or the life I expected. But it’s the life I have now, surrounded by the loving family I’ve created, who have stuck by me through the toughest of times. I’m happy with that.
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