Even from a young age I was curious about life & people beyond my front door. To experience as much as I could. Not one for following the crowd or been confined to a life dictated by society. Which can often come at a price of been misunderstood. The label of crazy wild child. The free spirit. All of which is true. But that does not mean I am without seriousness or a sense of stability in relationships, education & business.
But the life I knew as a teenager which was not perfect by any means (come on if your honest when you was a teenager coming to terms with those mood, hormones & physical changes was a bit of a nightmare😲).
At 18 juggling a job, busy social life & working on 3 different career paths. YES 3🙈😂 love & still love science. Forensics, Sports Science & Travel agent (tbt that was just for cheap flights because i love to travel). The travel agency path didn't last long. In fact 2 weeks.
But well on my way with science & sports qualifications under my belt to start my degree.
Lupus SLE Chapter 1.
I suddenly started to get blotchy rashes all over my body & face. Which the doctor dismissed as eczema. The creams didn't work. Then I started to have pain in my joints like never before. Felt like someone was using me as a bouncy ball in squash. I felt like living rigor mortis. Human mannequin. My hair started falling out. Nausea & throwing up. At 18 I thought I was dying & no one knew what was wrong with me.
My mother took me to see her doctor 👐🏾 as a special request. Which was the break I needed to solve what was wrong with me. The Doctor said you may have Lupus. In my head I was like W.T.F is that🤔. Then I thought yep I'm finished got something that is not well known great.
First I was seen at Guy's for what was my first taste of what was to be my life. Blood tests, biopsies & medication😐.
Got my diagnosis of S.L.E an autoimmune disorder which has no cure. Got even more sick with endless A+E trips & hospital admissions.
So I was referred to ST Thomas Hospital to see the professor at the Lupus Coote Clinic. (Now at Guy's).
Lupus S.L.E Chapter 2.
By this stage the boyfriend I had left. Couldn't handle the nature of how S.L.E had changed me. Which I could sort of understand because I was coming to terms with the changes also. Having to give up work. Turning down my place at university & wondering what sort of life will I have.
Started chemotherapy & most my hair fell out which was & might sound vain my pride & joy. It was a natural dark brown which went light brown in the sunshine long & wavy. For some reason people thought I was mixed because of the texture (that's a whole other blog in itself😆).
Then MRSA & confined to concelled room like E.T just wanting to go home. Medical anorexia due to not been able to keep food or liquids down. Walking stick & questions from people asking but your so young why you got a walking stick. As if you had one as a fashion accessory.haha.
Medication which made the body appear bruised all over as if I was in a bar fight.
Whispers behind my back that I was bruised because I was been abused by an old boyfriend (erm no).
Lupus Nephritis Chapter.
My kidneys decided they wanted a piece of the action. Due to the autoimmune system affecting organ function. I had another pneumonia stint in the hospital. Body was swollen & leaking fluid because of fluid retention as a result of kidney function. Was due to go home the next day when I suddenly started to have trouble breathing. Then all I can remember is seeing the light that everyone speaks about & voices saying cut the necklace & bra straps to attach chest pads. Then I woke 9 days later grabbing at a tube in my mouth & hooked up to machines & tubes in my arm & chest (kidney & lung failure).
Asking for pen & paper. Which the nurse was hesitant to give me because apparently but I don't believe it.haha. I had awoken briefly & after given a pen & paper I wrote obscenities on it, then threw it on the floor.
Oh dear who thought I could be so angry in a dream state.
I was like o.m.g what now. Untill I saw my family & how drained they looked. Having had the call in the middle of the night that your family member is in a Coma on life support. Having tried to revive me 3 times. Then when they took me off life support the first time been unsuccessful. That the possibility of it been unsuccessful again is 50/50. I couldn't Imagine that experience.
Then having to learn & train my body to do all the things I took for granted like walking, eating & talking. Was both interesting & challenging. It was like been reborn in an adult body that needed repairing.
In my 20s looking in the mirror & didn't recognise the body in the reflection. Puffy, scarred & bruised. My self esteem & confidence was low. The prospect of having to give up swimming (self confessed water baby). One of the options was the CAPD bag which I opposed at the very mention of it. Years of dialysis &/or going on the transplant list. But blessings came my way when I got the news that my kidneys healed enough on their own to stop dialysis & just take medication 🙌🏾.
Anaemia Chapter.
For some reason I just kept been so tired & having breathlessness even though I didn't lose excessive amounts of blood or had any injuries. So countless endoscopic & gastric procedures performed & nothing. Saw a heamotologist Specialist. No answers. The case went cold😆.
Then I started complaining about a pain in my chest, tiredness & breathing difficulty. The other hospital & doctors just said it's probably normal for you. I was like erm no I think I would know what was normal. Luckily I had the best consultant in the world who saw me & squeezed me to get an MRI & blood test. Which showed a blood clot in my lung, leg & my INR was non existent including my blood count which was so low my consultant said I don't know how I managed to function. I took that as another sign of escaping death which amazed me. So that was the beginning of blood transfusions (which are so boring but at least I got to eat forbidden foods like crisps & drink ribena😉).
Lupus related Illnesses Diagnosis Chapter.
What followed was a stint of epileptic seizures. Osteoporosis due to medication. Dermatitis & conditions I can't spell let alone pronounce😆 unless I was on top of my Latin studies which I never did at school.
Then one cancer patient changed my whole life even though I met many different people young & old. Been placed in so many different wards depending on what was Lupus cause for hospital admission.
This young guy so full of life who I had jokes with & talk about our issues with mutual understanding was due to go home after a long stay in hospital.
But it wasn't to be. I was used to the nurses every other night closing the curtains on the ward to take away a patient who passed away during the night. But did not think it was the young guy who spoke about all the things he was planning to do & said keep in touch was gone. When I saw his family looking sad instead of the joy you would expect a family to show.
It hit me & I went numb. So numb I couldn't cry. Just silence & retreat. How do I deal with grief. Not very well for a short while by lashing out & screaming for my sister who was the only one who could calm me down. Been held down & administered morphin in twice the dose. The nurse said I had the strength of the incredible hulk.
I did apologise to all the staff with flowers & chocolates. It wasn't so much I wanted to go home. It was the fear of not waking up the next day like so many around me had done.
But that is when I gave myself a reality 👋🏽😲 slap in the face.
I am awake & alive. Appreciate what you have & who you are. F!@k what people think when they look at you or think they know. I was back just new & improved. Humble & more determined than ever to change my life.
That meant study, qualifications & work.
Lupus S.L.E Past➡️Present Chapter.
I always studied something which will never stop. Because you can never know everything about everything. Plus opening up a wealth of knowledge, learning & discovery.
I worked my way up in retail learning so much about figures & KPIs. Training & motivating staff. Been in charge of a store & team. To dealing with so many different people.
So a honours BSc in Science & Health Studies, Psychology, counselling (just to have a better understanding of the mind including behaviour & coping mechanisms which can help or sabotage motivation &/or self image) coaching, Support In teaching & learning, business & entrepreneurship qualifications. Professional Fitness & P.T accreditation. & more. The list goes on & still adding.
But after a second bout of kidney failure I said to myself there's a reason for this it's a wake-up call to say why not be your own test subject. What are the boundaries of Lupus physically & emotionally.
Emotions can't be measured because it can be up or down & affected by so many factors. But such emotions such as not feeling worthy or insecure is something that can be changed by having a positive mindset regardless of your present situation or physical appearance. Which is not easy when the world is bombarding you with how you should look, who you should like, what you should wear, what you should have, for you to be of any value. Which I called b@lls#$t on a very long time ago (was not a popular view point😉✋🏾🚫 It was No to societal brainwashing).
Of course there are fashion & music that I like which happens to be trendy. I would be lying if I said I didn't. I just don't place my value on it. Nor do I judge those who are able to make money from having the know how to profit from it (each to their own).
I am passionate about pushing the boundaries of fitness in a realistic & healthy way. To encourage anyone & everyone why not see how far you can go in challenging your body. Setting goals, whether it's to do a pull up or lose weight. Loving yourself & giving the middle finger to people who say you can't do that or be that.
Taking up hobbies or interests. Taking the plunge & publishing my poetry. To give acting a shot just because I was always performing & dancing for fun on the shop floor plus been dyslexic which I was assessed for and told I was untill in later years during my second year at university. I always mention I did play Mary two years in a row in the nativity play at school (a very sought after role I may add😂) TBT I wanted to play the story teller because the costume was colourful but my sister always got that part (she had a great speaking voice).
When I did my first line on camera I actually couldn't sleep the night before. Also been dyslexic was I going to struggle with lines. Also modelling wasn't so much look at me I'm a model. It was having the opportunity to explore the world of imagery & different looks. Because the amount of jobs & roles I got turned away from. From not been tall enough, too thin, too fat, chest is too big & my butt is not big enough🤣🤣🤣🤣.
I did think to myself by who's standards. I'm fine as I am thanks😍 judging by what constitutes been the perfect beauty which is 70% man-made I'm good👌🏾 so unless you got a text, email or news announcement from God. There is no one look or type that is superior & means I need to achieve that by buying into the hype. But as a result of fitness training & nutrtion becoming toned, stronger & healthier is an added bonus. Plus it would be cheaper & more sustainable than taking diet tablets or shakes which is shoved down your throat in ad's. Mindset & motivation is a married couple who both need to be on track if goals are going to be achieved. It takes work. Yes I said the dirty word 'work'. It's not a quick fix because with surgical procedures the work has to be done to maintain the result.
Any way I shall finish as I began. This is me.....
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