I’ve had the chance to ask an motivating instagrammer called Oyinda, a number of questions about what it’s like living with her medical condition Systemic Lupus erythematosus. Oyinda is an inspiring lady who created an online community, Sharing the ups and down of life and sle. If you want to know more about Oyinda and how she manages SLE keep reading .
Tell me a bit about yourself
I’m 24 years of age, a Disney & HP obsessive. I love being creative; this is mostly displayed through the artwork I paint in my spare time. I also enjoy textile work. Total bookworm, I’m always buying new books. I also genuinely enjoy Charity work and giving back.
When were you diagnosed and what lead to your diagnosis?
April, 2004 (Aged 10) Constant trips to my GP & local community hospital, with complaints of joint pain, fatigue, skin rashes and flu/cold symptoms. While on a trip to see Lion King the Musical (My Mum’s Birthday present from my Dad) my rash appeared and I couldn’t sit still from being so itchy. We had to leave not long before the end, to find a pharmacy. The woman at the Boots informed my parents that she didn’t believe it was ‘food allergies’ and that I should be taken to a hospital right away. That’s exactly what my parents did. I was taken to my local hospital, where I was admitted and diagnosed with S.L.E & RA. I was in hospital for 2 weeks. My consultant at the time wasn’t entirely surprised by my diagnosis, as I’d had an admission when I was 4 years old. My parents were unable to bring down my high temperature and I was seen by that same consultant. At the time, she said she suspected Lupus, but my temperature came down. I went on to have no other immediate symptoms afterwards. So she didn’t want to unnecessarily worry my parents.
How did you feel when u received the news?
Initially, I didn’t understand that Lupus didn’t have a cure. Therefore I didn’t know that I’d have to take the medications I was discharged with, for the rest of my life. I remember my Mum explaining it to me a few weeks after I’d returned home. It was and I think still is, difficult for me to comprehend. I often mourn the person I used to be before my diagnosis.
How do you treat your condition?
A cocktail of medications. From Anti- Malarial, Steroids, Suppressers for my immune system. All playing a part in my management and all with their own side effects.
Besides taking medication what other changes have you had to make?
I have to pace myself. Which is easier said than done and I’m still learning. I try to exercise and eat well. I’ve had to adapt, realise that I’m not like a ‘healthy person’. My immune system is compromised, I have to be more careful. A common cold could kill me. I have made aids including crutches, an adjustable bed, raised toilet seats ect.
How has having SLE affected your social life/relationships?
I find it difficult. I’ve lost friends that didn’t understand. That didn’t have the patience to put up with me. Past relationships have also suffered due to Lupus and my being chronically ill. It’s definitely changed me as a person. My social life has definitely suffered. I have social anxiety and if that doesn’t rear it’s ugly head, more often than not, the Lupus will. If it’s not a full flare, it’ll be the fatigue or the RA. I don’t want to feel like a burden. Especially in relationships. I’m with someone now who I’m absolutely head over heels for. Although that doesn’t stop the worries, the insecurities, the fears. The fear of rejection being a big factor. As well as the fear of the unknown. He’s not yet seen me at my worse. Though he assures me that he’s not going anywhere. I do try to take comfort in that. Someone else to add to the arsenal. We all fight together.
How do you stay positive?
I’m not going to lie, it is hard. It’s not all sunshine and rainbows. I do try to portray both the ups and the downs. I have a fantastic support system and that’s very important. My family, my small circle of friends, my boyfriend and the Young Person’s Support Group. My Church. They all are there through the good and the bad. Celebrating the wins and supporting/consoling me through the bad. I’ve had to become strong, stronger than I ever imagined.
I’ve lost count of the amount of times my Mum has said “You were given this life cause you are strong enough to handle it”
What inspired you start sharing your journey on Instagram?
I don’t know…I think I just wanted my account to be about me as a whole. Social media is great for connecting with like minded people and you do get a sense of community. At the same time, a lot of accounts only show their highlight reel. The ups, but never the downs. Everybody’s human. I like to show that. I cry, I laugh, I get angry. It’s normal and it’s fine. I want to inspire people. To let them know they’re not alone. I don’t care what you’re going through, everyone has something. We can go through life together. In the early years of my diagnosis, I felt alone and isolated. It’s difficult to be surrounded by people and feel that way. You need to find people that are on the same wavelength. Even if it’s just the one person. That’s enough.
What advice can you give someonethat has SLE?
Trust your instincts. Know nobody knows your body better than you do. Fight for what your entitled to. I know it’s hard having an ‘Invisible Illness’ but you have to think about your quality of life. Never, ever give up. Rest when you need to, take time to recover. Try to find the positives, whatever the situation. ‘Your tribe attracts your vibe’ Surround yourself with good, understanding, positive people. Try not to worry so much about the people that leave. It just means that those people weren’t supposed to be in your life forever.
Feel free to follow her on her social platform and show some love