True Story

My Story: The Battle with Lupus – Oluwapelumi Ayokunle

Days turned into weeks. Weeks turned into months and years gone by. I couldn’t find my zeal or strength to do anything or even what I desired.

I became a topic of discussion among my peers. Some were actually certain I had died. My name was always ticked on the attendance register as being absent.

My ordeal started in high school. I missed a whole school’s term (about 4 months) and it was a tough time catching up with my classmates, really tough. I had missed classes uncountable times. I was always home very sick and couldn’t get myself to school. There were really no phones at that time so my school getting in contact with my parents to know what the problem was, was not easy at all. I remember going back to school after been absent for a long while, and a classmate said to me, “ah, so are still alive?”. I was very shocked by that statement, but hey I couldn’t blame them because indeed what else would they have thought.

This sour story of mine continued even in the tertiary institution. I would literarily overhear people say they thought I had gotten pregnant or probably had Sickel Cell Anemia. This was because of my absence from classes and school, in general, was becoming a norm.

Yes, I became a regular face at home because I was always sick. I would always go home to get myself treated for Malaria and Typhoid which would span for nothing less than 2 weeks. I didn’t understand what was going on with my health because being sick for me was almost becoming a monthly affair. Every ‘mild’ ailment for others was always exaggerated in my own case. An aspirin wouldn’t just let go off the pains I felt.

Oh I had so many questions waiting for ‘who knows’ to give answers to.

I would ask “what is going on with me”? “Why should these be happening to me?” How would I face my peers?” “What answers would I tell them?” “How would I explain to them that I am not a sickler?” “Or should I just show them pictures and pregnancy reports to show I wasn’t pregnant?” “What have I done to deserve such punishment of being sick all the time?” “How would I achieve my dreams and aspirations if I continue to fall Ill every time?” All these questions kept on caving me in. My self-esteem was beaten and battered. I couldn’t raise my head up high amongst my peers. For a moment I was ashamed. Other times I wouldn’t give a damn.

Oh, yes, I never self-medicated which means I was always at the hospital in front of the doctors with one health complain or the other almost every month. Today’s complains might be malaria and typhoid symptoms, next time it might be excruciating joint and bone pains, other times unexplainable weakness and fatigue which would leave me in tears and depression.

The thoughts of me knowing I was missing lectures and class attendance was heart-wrenching but I was helpless. After spending depressing weeks at home getting care, I would go back to school to cover up on multitudes of assignments and projects left undone.

I was an Architecture student in one of the most prestigious Tertiary Institutions in Nigeria. Architecture, as we all know, isn’t an easy course for the strong, how much more for the weak. It wasn’t easy at all!

Finally, I became a graduate and I thought that would be the end of my embarrassing life’s journey saga. Little did I know that ‘I had just started’.

These sickly experiences continued until I worked in companies for my various internship programs. My bosses didn’t understand me anymore. My senior colleagues just thought I was lazy and just wanted to intentionally avoid work. Several times, I would bump on them secretly talking about me and my regular absence from work. Do I really blame them? I don’t actually. I mean who wouldn’t complain about an employee been present at work for only about 8 days in a month or zero days out of 20 working days a month.

I graduated from being confused to being depressed. I was lonely inside because nobody could understand the intense struggles I faced every day, the drugs I had to swallow every month, the tears I cried secretly every night. The questions I asked my creator.

Alas, I was laid off from the job I had with another construction firm I worked for. That was the height of it. Since then, I told myself that was the last stroke that broke the camel’s back. That was the height of shame I would have to face. I told myself I wouldn’t work for anybody anymore! I was tired! I just couldn’t imagine myself going through those painful rollercoaster experiences anymore. I mean no doctor could find any tangible diagnosis of what was actually wrong with me all they said was ‘you are not sick. It is all in your head”. No employer would want to keep a sick employee who wasn’t efficient at work irrespective of the talents she claimed to have. Lazy work they say equals low profit.

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I became tired!!! I had given up! I had hit the rock’s bottom! I had no more strength to fight!!!

As I write, I remember while working in an Architectural Firm, seating in front of my computer, I would suddenly develop a brain fog or freeze. Concentration afterward became so so difficult. My eyes would be open browsing through building designs but I would literarily see or understand nothing. I couldn’t fathom anything I was doing at that moment. I would become extremely weak and fatigued. My inside would feel like a truck had driven over me. It affected my efficiency at work. It affected my profession as a young graduate Architect. It affected my life in general :(. And, no, sleeping or resting wouldn’t make the pains go away just like that. It was as if it gets to a point my body just becomes extremely weak and nothing else I did afterward made sense anymore other than to just lie down and rest.

In the year 2013, I served my country in a compulsory Scheme called the National Youth Service Corp (NYSC). Here in Nigeria, it is usually observed for a year. I was posted to Ebonyi State situated at the Eastern side of Nigeria (It is about a 10-hour journey from Lagos State where I reside.). I had to redeploy back to my State of Residence on health grounds (this was after I observed the 3 weeks camping exercise). During this year it was the same terrible experience, if not more terrible.

Even after I was redeployed back to Lagos I didn’t want to go back home to observe NYSC so I lodged in one the Christian Fellowship accommodation called the NCCF family house. I remember my stay there was an interesting one except for the times ‘of course’ were I would experience my usual health crisis where I would have to be excused from my house duties. As I write, I can remember times I would groan in chronic excruciating bone pains in my room. Sisters then with their little experience were always scared. They tried to help me by massaging my legs and arms with ointment while I screamed the whole house down. I would cry for days in my room and wouldn’t go out. My state of mind grew pretty worse as I was sacked from my Job which I did alongside my Compulsory job to augment my salary. I was always in the room, groaning in pains, unkempt, alone and hopeless!

Months after the completion of my NYSC, I developed serious throbbing chest pains, serious palpitations, numbness at one side of the body, left shoulder pain, extreme/irregular heartbeats. I became chronically depressed. I had become a shadow of myself. I lost friends. Nobody understood me anymore. I couldn’t even understand me. Little tasks became so much of a task for me as I would breathe heavily and pant while doing them. I couldn’t go out anymore as I loved to. I was always indoor because going out left me in so much pains.

I would go in and out panic attacks. I couldn’t find myself anymore. It was hell for me. I couldn’t tell people what I was going through because at this point my mates and colleagues had already left me behind in life and doing way better than me (so I thought). They had already proceeded in furthering their education, gotten married (or about to), started having kids, had stable jobs, but here I was still barely trying to move.

2014 was when my life took a whole new direction. I started using heart drugs prescribed by a doctor. Visited specialists. Did series of tests (ECG, blood tests, tuberculosis test, HIV test), oh you just name it. Results came out and there was really nothing serious to worry about except for my ECGs which had some issues.

During this period I had to go to the Lord in prayer to ask Him lots of serious questions. “I mean if this sickness isn’t claiming my life then there should be a reason He allowed it”. Lo and behold, I reached a place of surrenderedness and stopped struggling.

Not until I reached a place of being fully surrendered did I hear God speak and understand the purpose of everything. I had to release myself to the one who created me. I repented and then was I able to know that indeed most times what we planned is always not what God has in plan for us from the very beginning of our existence (Jeremiah 1:5).

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The Holy Spirit told me to start a blog in 2015/2016 (pelblogs.wordpress.com). He said I should teach people going through hard times and wilderness experiences as I am being taught by Him. So I started that blog encouraging people ‘not to give up on HOPE’. This blog eventually helped me become a source of light and hope to a lot of people out there who go through tough times. I was indirectly been strengthened as I wrote articles on my blog. I got distracted from my pains by the blog posts. Note this, I didn’t tell anybody what exactly I was going through in my articles but my readers were sensitive to the fact that I wrote/write form a well of deep experiences. I listened to teachings and read books from Men of God like Bishop T.D Jakes, Joel Osteen, Kenneth E. Hagin, Billy Graham, Bishop David O. Oyedepo, Pastor E.A Adeboye and other anointed of God. These strengthened my faith further.

Note that during these periods, my family and a very few friends had and have been my pillars of support. My mom and I went to several prayer mountains, did deliverances, went for different healing programs, exercised all spiritual mysteries, confessed God’s words, acted in faith and all. I got strengthened spiritually but my body disintegrated further.

I thank God for my mother most especially who kept and keeps encouraging me every time to never lose hope and trust in God’s words.

Yes, I had lost lots of close companions and friendships over the years. I had lost relationships. Marriage suitors came around but after I show them this part of me (which I can’t keep a secret for too long), they take to their heels. They obviously don’t want any woman who will be a liability or baggage to them..lol.

In February 2018, I started going to a General Hospital in my area where I was later referred to see a Cardiologist in Ogun State University Teaching Hospital (now Olabisi Onabanjo University Teaching Hospital). Here I ran uncountable tests which cost many thousands of naira. Several times these monies were borrowed because I didn’t have them. After many weeks of long travels, confusions, emotions, test et al, the last test I did with the Cardiologist showed I had a problem that had to do with my Connective Tissue. Due to this reason, I was transferred to the Rheumatology department to see a Rheumatologists. My Rheumatologist finally confirmed I have a Connective Tissue Disease called Systemic Lupus Erythematosus (SLE) also known as LUPUS.

Immediately after she told me this diagnosis I felt numb emotionally. The news brought me to tears. Why did I cry? I cried because I remember all the long processes I went through before I got to know what was happening to me. I remembered the pains, tears, shame, bitterness, loneliness, confusion, and all I had gone through. My Rheumatologist understood those emotions and tried to encourage me not to give up. As she explained my diagnosis my mind flashed back to many months ago when I stumbled on a lady who has Lupus and she shared her story on Instagram. That was my first time ever hearing such a condition. I saw the pains she went through and I prayed for her from the depth of my heart. Little did I know I will be diagnosed with the same months later.

Did I tell you my mom traveled with me for my doctor’s appointments? She would wait outside the Doctor’s office while I was being attended to. She was there for me all the time. I went back home that day of the diagnosis and all I did was to cry. I had so many things running through my mind. I thanked God I had finally found a name to the monster eating me up. Now it will be justified that I wasn’t actually being lazy. I mean I always look very okay from the outside but my inside was tearing apart. I was also scared it meant this monster is actually a reality.

My Rheumatologist told me that there is no cure for Lupus but drugs are available for management of its symptoms which will be taken for the rest of my life. And yes these drugs also come with its own debilitating side effects. She said Lupus was the reason I always have the constant fever, joint pains, swellings, Tachycardia (irregular heart rates), palpitations, depressions, migraines, and so on.

Lupus basically is a ‘life-threatening disease’. If not properly managed leads to the ending of one’s life.

A Connective Tissue Disease (in my case, Lupus) is an Autoimmune condition whereby your Antibodies (which are supposed to fight unwanted agents in your body like viruses and bacterium) see your vital organs as a threat (an enemy) and begins to fight them. So in essence, the body is fighting against itself. Pretty scary eh? During this process, no organ of the body is left out. The joints, bones, kidney, liver, heart, skin, etc are all at major risks.

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There is no known cause of the disease, neither is there any permanent cure. It is also so sad knowing that there is not enough awareness about this and other Connective Tissue Diseases in this part of the world.

I know a lot of you are just hearing about this condition for the first time. It is also very scary and sad to know that many people have died from this condition due to its complications.

I was officially diagnosed with Lupus in July 2018. Though sometimes I find it pretty hard to come to terms with this challenge (probably because of my faith), but I am religiously taking my prescribed medications, trusting in God’s healing power, learning to slowly pace myself, avoiding sunlight, avoiding as much as possible any form of stress, learning to listen to my body and basically having a good and healthy lifestyle.

Taking my medications wouldn’t stop the fact that I get recurring symptoms (called flares) which comes without any announcements, lol. The usage of my drugs come with its own side effects like weight gain, blurry vision, dizzy spells, photosensitivity, puffy face, mouth ulcers, hair loss (in some people’s case), etc. Basically, Lupus affects people differently so you can’t really compare one person’s symptoms to another.

I am learning every day about this condition. I am getting to connect with few women like myself home and abroad who struggle with these pains daily. Lupus affects more women than men.

I go through debilitating pains every time (you just can’t imagine) but I still try as much as possible to live a quality and impactful life. Oh, it’s very difficult but I trust God every day to pull me through. I am learning each day to trust God’s process for me physically, spiritually, ministerially, emotionally, maritally and in every way.

The truth is leaving the house most times for me is still very difficult but I try as much as possible to do little freelancing from home as much as my strength can take me. I also love to go to Church because for me it is a home away from home. In God’s presence, I am able to lay bare to Him withholding nothing.

I am a very talented young Lady but at a point, it looked like Lupus just didn’t want me to make money from my Art and Crafts. I am still finding a way to advertise my Art and Crafts around Lupus. I mean it’s very hard because I can’t travel, I can’t do deliveries and the likes, but I won’t give up just yet. Social Media especially Facebook and Instagram have really been a helpful tool in marketing my skills. Apart from being a graduate Architect, I am passionate about Illustrations (Fashion Illustrations and Art illustrations), Phone photography, Interior Visualizations, and Crotchet Art. This period for me helps me build myself up in every ramification. I mean I don’t go out too often so most times I am home I spend time with God (by studying His word, praying and worshipping), Freelancing, updating my Skills, and developing my brain, lol.

It has really taken me a lot of courage sharing my story and coming out bare. I literarily feel empty right now, lol. I mean, I think I feel fulfilled. I have the strong feeling that even if it is just one person I have touched with my story, then that is awesome!

Lupus still gives me its kung fu kicks and blows every now and then but I strongly believe that God is with me in this storm.

Dear reader (especially my friends and followers on social media) I know it may sound unbelievable reading my battle especially with the fact I look really beautiful in pictures I post and how amazing my Artworks looks. Well, yes this is the real me 🙂 Those smiles and awesomeness are products of intense pains and molding in the furnace. Please don’t cry for me. All I need from you is to be inspired and NEVER GIVE UP! Yes, also I need lots of your prayers, love, and support.

Whatever your story is just know it is all for your building up. If it hasn’t killed you then it is making you stronger.

Never give up guys please never! Let’s fight this together to prove to our ‘hard times’ that we know better!!!

Oluwapelumi Janet Ayokunle
xoxo…

 

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16 thoughts on “My Story: The Battle with Lupus – Oluwapelumi Ayokunle”

    1. You are welcome dear. It’s a privilege to get to do this. The world deserves to hear your story. We are more than conquerors❤

    2. Wow! Pelumi… don’t know what to say but I’ve this believe that you’re closer to the end of this storm. Stay strong dear

  1. Sister Pelumi, you are strong, more than a conqueror.

    Don’t ever let this lupus get the upper hand, this is just the devil’s way of apologizing to you by giving it a name because he knows you are destined for greatness.

    You shall not die, you will out live this so called lupus.

    At the mention of the name of Jesus, you dont have to say it more than once just once is enough with faith and a deep conviction every knee shall bow and every tongue shall confess that Jesus Christ is Lord. He has given us the power to thread over serpents and scorpions.

    I will always pray for you, the battle line has been drawn.

  2. Reading these details makes me understand more the weight of the pains you told me you go through…reading this also just lifted a weight off of me; it is my prayer Pèlúmi that God heals you of this, and may He keep using you for His glory in Jesus name!

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