It’s the last week of Lupus Awareness Month. My motto living with Lupus SLE. It’s many trials, tribulations both physically & mentally. But my motto is where you find pain there is happiness to be had if you want it.
I’m not absent of the realities Lupus has had on me physically, mentally & socially (if you want more insight please read some of my previous blogs). If you’ve had to deal with any type of chronic illness or invisible illness you’ll be able to relate. The hospital stays, medication, scars, societies label & attitude of who you are. Your place in the world & value. That in order to be understood I must fit into a box that’s comfortable for other’s. That I must present myself with weaknesses & complaints only. When no one is above or below someone so why would I not be the person I can be with all my imperfections which includes having Lupus SLE.
In doing so I’m not at the mercy of society, culture, social media, people & the whole world dictating my life & beauty standards. I am my own inspiration. Because we all have our own stories to live & tell. Which is much more interesting to experience it then to observe it or imitate it.
Embracing what you are dealt with to make the necessary positive changes. Is the first step to many more. Never underestimate the power of owning your own health, fitness & wellbeing. Outside of diagnosis it’s down to you to invest & commit yourself to positive changes whether that’s boosting your confidence, self esteem, physique, fitness levels, mindset etc. Is it easy no. But it’s doable.
You don’t have to have it all to live your best life. Lupus awareness month. Is not just about doing your upmost to provide awareness to the general public, freinds & family. But also gaining self awareness. There has been progress from the time I’ve been Lupus advocating such as been introduced as a recognised chronic illness. But there’s still a way to go in the level of awareness & understanding in communities, wider societies & work/study environments especially in the UK. Which I know because I’m often told by individuals they’ve heard about Lupus or they know someone who has Lupus when I’m providing information & explaining the different types of Lupus & what I have which is Lupus SLE (which includes multiple organ involvement & treatment such as chemotherapy). Which people assume is confined to the treatment for Cancer patients. So Lupus Awareness Month for me is an all year round commitment. Until the day comes when I can say Lupus SLE & everyone has a basic understanding of what it is. Just as if I mentioned a more well known autoimmune illness such as Sickle Cell or Cancer 🤞🏾.
With understanding & awareness it’s the best tool to have in order to support loved one’s, freinds & colleagues. Plus provide those who are diagnosed with Lupus the information & access to available resources. Because illness transcends far beyond the physical damage it may do. It will/can affect your whole life including your work life, social life, home life, your relationships with other’s & yourself. Coming to terms with changes can be a shock. So having awareness gives you the tools to navigate a path which will best suit your needs.
For example because I was to ill to go off to uni. To study BSc Sports Science after my NVQ 3 Coaching Sports Award qualification (yes I was gutted beyond belief). Then the full force of Lupus SLE made itself present. Hair loss, Chemotherapy, Lung & Kidney Failure (Acute & Chronic ×2 occasions) Biopsies & months on end hospital stays. Coma which was the worst it could get. But with a positive spin on it. It did offer me the opportunity to start all over again. Incapacity, wheelchairs, walking sticks, bruises, scarring, underweight & overweight. MRSA, dialysis etc. So I studied BSc Forensic Science & Health instead. Then BSc Psychology (to be honest I’ve got a whole resumè of recognised qualifications & experience. Which would read like the Lord if the Rings Trilogy minus the hobbits, wizard & elfs 🤣). Which wasn’t without it’s issues due to absences but had the best lecturers a person could ask for. Being dyslexic didn’t help 🤷🏾♀️ but at least I got tested whilst being at university to know I was dyslexic. But unafraid to be transparent about my situation helped me through that period. Also the power of education. So everytime I was at a critical stage. Studying for a qualification was my thing to do. Still is. Not only did it contribute to keeping my mind stimulated & active but it also prepared me for expanding my approach to learning & trying new things. So I never felt isolated. The confidence to go back to work & be a valued employee in retail then health care (which just so happen one of my clients had Lupus but was incapacitated/bedridden) same medication. Which was surreal for me looking from the outside but could relate to her circumstances & could only do what was permitted within my job title at the time of assisted care. It was a visual reality of the seriousness Lupus can be for some individuals. Sometimes phases & sometimes permanent depending on individual circumstances & mindset. Then Independent in Sports & Education in schools as well as building my own platform in Yoga, Fitness & Wellbeing on a professional level. Whilst knowing my rights. Plus developing my skills professionally. It was when I gained my P.T, Gym, Class Instructor/Trainer + Nutrition Level 3. Supply Support Teacher Qualification & Yoga Teacher Qualification (accreditations). It was like I had come full circle. Did some acting just because it looked like fun & that was the ultimate challenge to myself to test my confidence level can I thrive infront of a camera. Nearly wet myself at first but I didn’t freeze & delivered my lines. So job done. Did some more & found it interesting to talk to those who acting was their everything plus learning from the experienced professionals was priceless. Did some modelling but that phone call/email from a big fashion house hasn’t come in yet 🤷🏾♀️🙄. Still waiting. haha. The point is though not to wait for someone else to tell you you can do this or be that. I do think it helped that my parents instilled in me a good work ethic from a young age that if you want something you have to work for it. Which I applied to all area’s of my life including having Lupus SLE & Lupus related illnesses &/or health related occurrences such as blood clots, puemononia etc. Not everyone is able to have a strong support system such as family. But knowing how lucky I am. Has made me more open to providing positive encouragement to other’s which may just be all they have missing from their lives.
Awareness is important not just so you understand about Lupus SLE an Autoimmune invisible illness. But opening the lines of communication among us all. Learning not to be judgemental or make comments because you don’t know what someone is going through.
My passion & purpose is equally focused on advocating Lupus awareness as it is advocating the benefits of health, fitness & wellbeing awareness for those with Lupus + SLE + invisible illnesses. Because no matter what life brings upon you. You have the choice to make positive changes.
So no matter what stay active 💚 no matter how minor you think the activity is….
There are organisations which you can access online & from your GP should you suffer a mental health crisis. Such as Mind & Samaritans. Plus Lupus Community Patient Groups.
If your interested in Lupus or invisible illness friendly exercises. Check out my Facebook page G.ElliottServices also exercise shorts/reels/posts on instagram @georgia_einstein : Twitter @GeorgiaEinstein & Pinterest gelliottservice
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