Where do I start? I’ve attempted to write this post numerous times but I’m always mentally blocked. Although I’m very open with the fact that I am disabled, I mean it can’t really be hidden, I still find myself battling with the acceptance of it. All I know is that I want to dedicate this post to my sister, Dayna, because she’s the one person who supported me every step of the way when it comes to my disabilities. I appreciate you sissy!
I wasn’t born disabled. Not that my parents or me knew of anyway. As a child my health was great aside from the fact that I was tired all of the time but my parents just said that I loved to sleep and I agreed. My bed is my favourite place to be.
Comparing myself to others has never really been my thing. I’ve always been different and always been aware of that. I never looked like my parents, in my opinion, until I became an adult and now I look like my father. So, I’ve always felt like I had created myself and was a unique little being. As well as my exterior, my personality has always been one of a kind. My maturity has always been at a higher level than people my age, I’m an old soul. Mix that with the fact that my intelligence is also remarkably at a high level, if I do say so myself, I’ve always known that I was special.
When I was younger, although I was tired a lot, I was quite active. I did Karate, Tae Kwon Do and Boxing (Kickboxing included) for years; and I was one of the best, better than people my parents age. As well as martial arts, I’ve always been a dancer. Choreographing routines for myself and others and watching music videos religiously so that I always knew the latest moves. Considering the fact that I was regarded as a great martial artist and dancer as a child, my tiredness seemed granted; I was doing a lot so it made sense that I needed sleep. However, as I got older, I started to cut down on my extracurricular activities.
In my teenage years I stopped doing martial arts and dancing and decided to just focus on enjoying my youth. Travelling to the other side of the city to go to school and hanging around in the centre with “friends” was more than enough for me. I also got sucked into society and would rather spend my evenings at home on MSN than going out and getting sweaty; and that’s what I did for a while.
At that point I realised that I was still tired all the time, even more so. I was doing less yet feeling more lethargic than ever, and the lack of energy lasted all day. Going to school made me tired, sitting on social media made me tired, just being awake made me tired; I wanted to sleep all the time.
My maternal grandmother used to always complain that something wasn’t right because every time I visited her after school I would curl up in front of her fire and fall asleep. Oh yeah I forgot to mention, I’ve always been cold! Cold is an understatement actually, as I’m always frozen. My hands and feet feel like iceboxes no matter how hot the weather is. When you’re Caribbean and your family feel your cold extremities and say: “If yuh dead say yuh dead” then you learn to laugh it off; so I laughed it off.
So now we’ve established that I’ve always been cold and always been tired but then things quickly took an extreme turn for the worst. I started to be sick, and I don’t just mean feeling unwell but I mean literally regurgitating 24/7. My appetite has never been a big one but the slightest amount of food would make me throw up. I’m a petite girl, I’ve never weighed more than 103 pounds in my life so you can imagine that after throwing up for half an hour, my stomach would be empty. Yet I continued to throw up, so the majority of the time I was resurfacing the lining of my stomach (which practically looks like foam) and it hurt! The doctors answer to sickness and pain was tablets. Painkillers and antibiotics are supposed to make it all go away, apparently, but they didn’t.
That’s where my addiction to medication heightened, you can read more about that here – on my previous post. My frail little body couldn’t manage the pain that I was constantly in, and fighting it was impossible as I didn’t have the energy to do so. I began to eat medication for breakfast, dinner, lunch; and every snack in between. Did it help? Barely. I could still feel pain but the medication had numbed my soul so every physical feeling felt distant yet present. My doctors continued to try and shut down my cries for help with tablets, my parents thought I was over exaggerating and being lazy and my teachers were just disappointed because their golden genius pupil was slacking.
If it wasn’t for my younger sister, Dayna, then I would’ve given up on seeking help a long time before getting my diagnosis. She always believed that there was something greater causing me to be unwell all the time and her support helped me greatly.
My suffering went on for years, yet life doesn’t stop just because you’re sick. I still had to complete school which I did, but my GCSE grades were nothing like they could have been if I wasn’t sick throughout the whole entire exam period. My grades weren’t awful but as I’ve mentioned, I’m very clever, so they couldn’t been much better. The grades that I got weren’t enough to get me onto the specific A-Levels that I wanted to do and that crushed me. When I went into Matthew Boulton College to sign up for my courses and was told that I didn’t have enough points I was distraught. The lady who delivered the information to me looked at me almost as if I was crazy. She spoke to me like I was stupid to think that I could ever achieve anything and told me to try a BTEC course instead.
BTEC? That wasn’t my dream and if I had any ounce of motivation left inside of me then it went right out of the window as she gave me that news. All that was going through my head was that, if I was diagnosed in school I would’ve had the correct treatment and would’ve aced the exams and would not be in this predicament. Yet, that didn’t happen and I had to make a choice. BTEC it was. Whether my path would go how I wanted it to, I was going to end up successful so I couldn’t give up.
I did a BTEC Business course for almost a year and it was excruciatingly boring. I don’t know what my excuse was for doing business but hey, it was education. My health was deteriorating yet I could do the course with my eyes closed, the work was easy and I was over it fairly quickly. It was time for me to try something else but my parents aren’t bummy so dropping out without having another plan was not an option. I’m glad that they’re like that because not having the option to do nothing keeps you motivated to do more, and work harder to be better.
After finding an apprenticeship, I left college and went straight into working. I didn’t want to swear in this post but I’ve got to keep it real, the job was shit! The actual wage has gone out of my memory now, but it was something minuscule like £2.60 an hour. Yet I went there and worked anyway. It was such a rubbish job that I knew I didn’t have to do much more than show up and socialise to get paid, so no one would notice when I hid in the toilet throwing up for 45 minutes. Alongside working, I had coursework and of course it was easy. I stuck it out long enough to get my qualification and a reference; which was a great one considering I was sick all the time… but they didn’t even care to notice that.
Once I’d finished the apprenticeship I realised that I needed more than alright GCSE’s and one qualification outside of school to be successful. I still had to find somewhere that would accept an extremely ill person without a diagnosis though. McDonalds it was.
I started working in McDonald’s when I was 17 because like my first job, I thought they wouldn’t care to notice how sick I am and it was flexible. The flexibility allowed me to go back to college, this time I decided to do fashion. I thought that if I couldn’t study Law, (which was what I wanted to do at A-Level) then I would go to plan b – Fashion Journalism.
Looking back on it now, I have no idea how I juggled college and work. My attendance for college was poor and when I did go I was unable to hide my sickness. The deterioration had taken a fast-track and my illness was becoming a public issue. Tutors were noticing me skipping lessons and assumed that I was just being a bad student, yet I was dying in the bathrooms and trying to hide it. The lessons that I did attend were okay sometimes, sometimes my work was great and I was engaging and the other times I was either falling asleep or passing out. It got so bad that one time I blacked out and woke up on the floor outside of the building and my mother was there; most people in the college knew that I was the “sick girl” from that moment onwards.
As well as college starting to get wind of my illness, work did too. Leaving early became a regular request and missing shifts last minute did too. My excuses must’ve sounded like a broken record because colleagues used to tell me to say something else because I said that last time yet it was the truth. The same issues were occurring, my body was aching from head to toe and the vomit would not stop. Yet, without a diagnosis people think that you’re a liar.
That lasted for two years and after finishing college I decided to find something else. Going to university to study fashion journalism sounded like a great idea and finally I had the grades to follow a dream of mine but I wanted to do it big. Staying in my city and going to university wasn’t good enough. If I’m going to enter the fashion world, I thought, then I need to be in London. Yet, the anxiety from not knowing when I would be at my worst refrained me from going; I needed to be near my family. Instead I got a job working for Children’s Social Services.
In between finishing college and working for Children’s Social Services I had two jobs but they were literally for a few months; and are totally irrelevant now. I was still on medication but after, barely, holding down a job and education at the same time I felt like I could move forward. Then my paternal grandfather died and my health died with him.
Battling with mental health has always been an issue for me, and that was diagnosed when I was younger, but that was kept under wraps a bit by becoming antisocial. My depressive state of being was literally only shown to my four walls because I hid in bed. Then I put on a brave face whenever I had to go out. It was a great act for a very long time. When my Abuelo died though, there was nothing in the world that could’ve kept my mental health under wraps. I broke into pieces publicly.
Dealing with death wasn’t new to me, I had my first death when I was 2 years old and since the age of 12 I don’t think that I’ve had a year where I haven’t lost someone. This one was different though. I was too weak. Panic attacks became a regular occurrence. Chest pains and insomnia stopped me from sleeping. Vomiting was more than two times a day. Fainting got more frequent. Getting out of bed without help was almost impossible. Not only had his death severely traumatised me mentally but it impacted me physically too. I spent almost every day in the doctors surgery asking for help and all that I got was more stupid medication. I also still had jobs so I couldn’t heal, or rest as the doctors told me to. Plus, I had the interview for my job in Children’s Social Services just a few days after my Abuelo passed away and somehow secured the job so I knew that I’d be starting that soon and didn’t want to ruin it by being sick. Then the blessing and the curse happened, I almost died.
I stopped breathing and my body rapidly shut down and I almost died.
When I stopped breathing I was already on the way to the hospital with my little sisters. Until this very day I can’t be more sorry that they had to witness their big sister go through that but I’m so grateful that they were there with me. If I was alone I would’ve died alone in the cul-de-sac around the corner from my house because there would’ve been no one to get me home and call the ambulance for me. The thought alone scares me.
Being in hospital was a horrible experience and when I start making videos I promise that I’ll share that experience with you properly in detail. My body shut down completely, I was dosed on medication constantly and I couldn’t walk for the majority of my time in hospital. However, after being hospitalised for two weeks people started to believe me. I wasn’t a drama queen anymore and I wasn’t a lazy liar. People actually believed that I was sick and doctors actually started to try and figure out what was wrong with me. It’s crazy that you have to almost die before people help you, but the person who always believed me was the one who called the ambulance to save me and I’m so grateful for her. My sister.
I started my job in Children’s Social Services less than two weeks after coming out of hospital, so I still hadn’t fully recovered. It took another year for me to finally get a diagnosis. A very stressful year too. Between almost losing my job for being sick and my manager passing away, I couldn’t want a diagnosis more. Fibromyalgia! Fibromyalgia is now the most annoying word in my whole entire life at this point. However, at that point I never knew what it was. Not only was the diagnosis long-awaited but it was not what I wanted to hear. I’d never heard of it before but all I knew was that it was a lifelong illness.
You mean to tell me that there isn’t a cure? That I won’t get better, ever? Could I get anymore unlucky? The questions started running through my mind in abundance but I kept them to myself. Doctors did nothing more than print off an NHS page and tell me to read it so most of what I learned was through my own research.
Year one of being diagnosed was hard because I just didn’t want to accept it. My performance at work showed just how much I was affected. I looked depressed, I fell asleep in the office because the medication was too much and I missed a lot of time because I was in bed sick. Soon after being diagnosed with Fibromyalgia I was also diagnosed with Postural Orthostatic Tachycardia Syndrome and Polycystic Ovaries. I wasn’t born disabled but now I’m registered disabled with two chronic illnesses and have a third health issue. That realisation was the moment when I gave my head a wobble and decided to fight.
I remembered the little girl who had dreams bigger than any disability. She was me and I realised that I was letting her down by being weak. The disabilities weren’t going anywhere, and if I sat down being miserable about them then neither would I. Having control over my body was no longer a possibility but having control over my mind was.
So, I took control.
I started studying with The Open University to get a degree whilst working full-time. I’m currently in my final year and in a few months I will be a law graduate. (Ha! To the woman who looked at me like I was crazy for having dreams bigger than BTEC!)
I’ve held my job in Children’s Social Services for over four years now. Through hard times where I could’ve lost my job due to sickness but performing so well there that they kept me. To helping so many people and gaining experience that will allow me to further my career goals. I also managed to earn qualifications in my job whilst working and studying for my degree; both full-time. To say I’m proud of myself would be an understatement, I’m more than.
Through research I learned that a vegan diet could improve my health, and it has, and I’ve been a vegan for over two years now. Becoming vegan allowed me to come off medication which helped me flourish in work, and improve my attendance and focus. It also allowed me to learn a lot more about the world and how I can live my healthiest and best life. They tend to say that true old souls who are spiritually in-tune end up going back to a pure vegan diet, so that time came for me. It was only right.
The fear and anxiety of being sick whilst away from family was overcome by travelling solo; and I’ve travelled to multiple amazing countries alone over the past few years. Not only has it helped me feel confident on my own, I’ve also made the most amazing friends and stopped being so antisocial. It’s like a breath of fresh air. I also have a walking aid now; I don’t use it all the time but when I need it I’m no longer anxious about what people will see when I’m using it. Who cares? Not me.
I started to dance again, behind closed doors, but it’s making me happier than ever. My energy is getting back up there and soon I’ll be ready to find a studio space and start teaching dance to students. My love for music never stopped over the years and not being able to dance really made me want to stay far away from the industry but I’ve got over that now. Getting over that hurdle allowed me to get into music journalism, it’s not fashion but it’s much dearer to my heart and I enjoy it. I’m officially a journalist in the music industry and in a short space of time it’s opened so many doors for me. Not only am I a journalist but I’m also about to start managing artists, I couldn’t be happier.
Living with disabilities turned me into a recluse but as I’ve started to get out of my shell so much is happening. I’m not afraid anymore and people are listening now. My secret little blog is now public and through social media I’ve been able to share my writing and there are people who like it. The books that I’ve been writing and thought would get no attention are now things that people are waiting for and the feeling is amazing. Getting out of my little disabled bubble has opened doors for me, I’ve been offered more job opportunities than ever and they work for me. My physical abilities are still poor but my mind is appreciated now, and it’s building the life she always wanted. I’m able to build a career that is greater than my physical without making myself more ill. I can work from my bed sometimes and it’s great. She’s proud. She being the little girl with dreams bigger than disabilities.
As well as what I’ve already mentioned, there is so much more that I’m working on which will come to light in 2018.
When you’re disabled people treat you like you should stay in your little box and be content. They start to tell you to be “realistic” and work within your means but if your dreams are bigger than your means then ignore them. You can do whatever you put your mind to, there is always a way. If I had listened to those people then I’d still be the miserable little disabled girl and would’ve ended up fired and stuck at home achieving nothing. That life wasn’t meant for me.
To those who have disabilities and are stuck at home, I know that you have dreams and I want you to chase them. People around you may think they’re unrealistic but I don’t. I’m talking to you and I see you. Don’t let what’s “socially acceptable” stop you. You’re different for a reason. God gave you a bigger hurdle for a reason. Jump over it! We’re all destined for greatness and the greatest rewards are the ones you work the hardest for. Your road will be harder but it’s achievable; God wouldn’t give you an unachievable dream.