The subject of this week鈥檚 What She Said is Ijeoma Ogwuegbu, a Nigerian woman who was diagnosed with Fibromyalgia, a condition that causes widespread pain all over the body. She talks about how difficult it was to get a diagnosis, coping with it while raising three children and how music helps her escape.
When did you first notice something was wrong?
I first noticed two years ago, in the first week of January, 2019. I was going through a lot emotionally 鈥 my marriage had just ended and I was attempting to move forward. That week, I felt a stabbing pain in my back and couldn鈥檛 move my right arm. It was really odd. This wasn鈥檛 something that had never happened to me.
That weekend, my sister and kids were in the living room, so I sent my sister a text to come to the room. Seeing my face, she knew something was wrong. She tried to move my arm, and it was hell. She called our other sister who lived nearby to come and drive me to the hospital. When we got there, the doctor looked through my records and said, 鈥淵ou complained about something like this about this time last year.鈥 I didn鈥檛 even remember that. He gave me muscle relaxers and said to go home and rest.
What happened next?
The next Monday, I felt an electric shock going from the top of my head down. From then on, I was always in constant pain.
Oh wow. When did you eventually find out what was wrong?
Almost a year later. So, for about a year, I didn鈥檛 actually know the problem. I did different scans and tests, but they couldn鈥檛 identify the problem. My test results always came back fine.
To determine that it was in fact fibromyalgia, they had to do an elimination process where they ticked every other thing before coming to the conclusion. And up until this diagnosis, the pain kept getting worse. It got so bad that I couldn鈥檛 move my body.
Did they tell you what caused it?
Generally, there are two known causes of fibromyalgia: psychological trauma and physical trauma. I know I didn鈥檛 have physical trauma before this time. However, I had some psychological trauma from getting separated. So when I got the diagnosis, I knew it wasn鈥檛 completely out of the blue. The thing is, If you keep pushing emotional stress down and thinking it has gone, you鈥檙e wrong. It鈥檚 inside your body, and fibromyalgia will basically tell you: 鈥淕uy, you can鈥檛 keep stuffing these things here, your body will break.鈥
When you don鈥檛 deal with physical and psychological trauma at the time they happen, your body stores them up. Then the pain receptors in your body will break down and stop functioning properly. Your brain will begin to interpret every single thing as pain. You won鈥檛 be able sleep properly, you鈥檒l be tired all the time. In fact, you鈥檒l constantly be in pain.
Wow. I鈥檓 so sorry. Is there a part of your body that suffers more than the rest?
My limbs. I now walk with a walking stick, but I鈥檓 looking forward to getting an electric wheelchair.
I鈥檓 curious about the journey to getting diagnosed. What was your experience with doctors like?
I went from hospital to hospital between January and March but couldn鈥檛 get any help. Then I went to LUTH. In the first meeting I had in LUTH, I tried to explain the electric shocks I was experiencing anytime I put my foot down, but the doctor didn鈥檛 get it.
Eventually she said that what I was experiencing could be due to family issues I was having at the time and recommended that I needed to relax. She also prescribed antidepressants. I was a bit disturbed by this initially, but honestly, I needed them at that time. I had previously been diagnosed with depression and anxiety but had never done anything about it.
Using the antidepressants made me feel better. I didn鈥檛 feel as much pain on one hand. And on the other hand, I was seeing the world differently and was quite shocked. My brain is usually switched on and constantly evaluating my actions and everyone else’s. But with antidepressants, I realised that wasn鈥檛 the way the world was. It was a big ah-ha moment for me.
Did the antidepressants stop working to treat the pain?
Yes, it did. After about a month or two, the pain was back. However, because the use of the antidepressants gave me clarity, I was able to advocate better for myself. I knew that the antidepressants were not the solution to the pain. So I did more tests and eventually got diagnosed.
After being diagnosed, what kind of support did you receive from your family?
Even before I was diagnosed, they were there for me. I come from a really large, loud and boisterous family. I have five sisters and three brothers. My parents are alive. They were there for me all step of the way. My mother and sister moved in with me. My entire family treated the condition as a thing that happened to all of us. I never had to worry about my kids.
That鈥檚 good. How do you cope with the pain?
I鈥檓 not religious, but I鈥檓 a spiritual person. The way I experience spirituality involves a lot of physicality. I listen to music and can feel my body responding to it.
Because I鈥檓 constantly in excruciating pain and can鈥檛 move 鈥 fibromyalgia doesn鈥檛 want you to move, exercise or maintain a peaceful existence 鈥 I had to utilise music and sound in some way. Music generally opens up a folder of memories. So when I listen to music, I revisit the parts of my life that were positive and meaningful in some way and bring them to my present. I love Abba. When I listen to Abba, I remember all the joyful and blissful moments I spent with my siblings as kids. So these days, I listen to Abba with my children and all the pleasant memories come to my mind.
What about medication?
Very few medications work. You can鈥檛 use opioids for long because of dependency issues. So you have to figure out how to live your life with that amount of pain. That鈥檚 why music and movement are important to me. When I move, I immediately start to feel light 鈥 I鈥檓 not thinking about how I look or how someone else will perceive what I鈥檓 doing. My muscles will scream at me to stop, but if I keep going, then my body will loosen up and I鈥檒l feel peaceful. I do this for about 15 minutes. And for the next hour or two, I feel lighter, like a weight has been lifted.
I鈥檓 not a fan of suffering, that鈥檚 why this is escaping through music and movement are important. There鈥檚 no place where they wrote my name next to 鈥渟ufferhead.鈥 I have fibromyalgia and that鈥檚 enough stress for 25 people and three lifetimes. No need to add anymore suffering on top.
Haha.
In fact, this is what I was thinking of when I created this . Two people, a man and a woman, came together and had children. One person has already used all her body and mind to have the babies. Yet, you who were involved in it, feel it鈥檚 okay to go on and live your life, leaving the children with her. People think that the mother and father are equal 鈥 50: 50 鈥 when raising children, but it鈥檚 not true.
The woman is already deficit because she鈥檚 spent nine months carrying the child. Her body is broken. The first three months after I had my child, I was just like, what the fuck is this shit? It is the absolute ghetto. Let鈥檚 not even talk about what happens to the woman鈥檚 body when she鈥檚 pregnant or what happens when you step out of the hospital with your child. You don鈥檛 love the child yet, because that child has crashed and burned your body to come out. It鈥檚 only normal if the first thing you think is 鈥淚 don鈥檛 know what I feel about you right now.鈥 You just know there鈥檚 something between you and your child.
There鈥檚 literally nothing to compare the pain of pregnancy to. Unfortunately, women don鈥檛 get the time to acknowledge and process what happened. You’re not even allowed to contemplate it in any serious way. You鈥檙e expected to bounce into motherhood. Then you start breastfeeding which is another torture.
But we鈥檙e supposed to experience all the stages of pregnancy and childbirth in pure and unbridled ecstasy. This idea of just moving on to the next thing forces us to drink so much trauma. We have normalised it so much that you鈥檙e the odd one if you question it.
With all of these in mind and the fact that you鈥檙e divorced and living with fibromyalgia, what鈥檚 it like raising your children?
I simply don鈥檛 have the time to do a lot of things. In a day, I might get just one hour to be active. All of this has forced me to be so conscious about even the smallest interactions and how it contributes to my wellbeing and my children鈥檚 well being. I hardly fly off the handle because I鈥檒l probably say something that鈥檒l hurt them even though I don鈥檛 intend to. At that moment, I鈥檓 not myself. So when I am annoyed with them, I ask them to leave, so I can process what happened, think of my reaction and then react.
We play music in the evening after their classes and sometimes, spend an entire day doing that, since mummy cannot jump up and down. Fibromyalgia forces me to consider my needs, their needs and how to make both work, rather than dwelling too much on could haves or would haves.
How has it affected working?
This is the hardest part. I鈥檝e always been a writer. Because of how crippling the condition is, it is difficult to do any kind of sustained work. Fibro fog is an aspect of fibromyalgia that affects your memory. Short term memory isn鈥檛 saved as well as it should. You forget names, conversations, meetings and other details you should know. So I can鈥檛 write and even if I try, joint and muscle pain in my hands is another challenge.
A while ago, I started gardening because I was depressed. I also had a gardening group. I can鈥檛 garden or manage the group because of fibromyalgia.
On the other hand, fibromyalgia has forced me to focus and ask myself, if I can鈥檛 do what I used to do, what can I do? That鈥檚 how I became a painter. There鈥檚 a sense of freedom I get when I鈥檓 painting. I might never have discovered painting if this didn鈥檛 happen. Once I start doing something, I will become So immersed in it until I know everything about it.
Currently, I’m script editor on Tinsel. They鈥檝e given me a lot of concessions to be honest. We definitely need companies to start to think of their people beyond being a bottom line feeder.
What are the peculiar ways in which fibromyalgia affects women?
Women are more likely to have fibromyalgia than men. And I feel it鈥檚 because of all the ways in which we internalise trauma and are okay with it. That鈥檚 why so many women have fibromyalgia. It’s basically your body saying it鈥檚 enough 鈥 o ti to. In hindsight, I realise all the times when my body was trying to get my attention. We women end up treating our bodies in ways it鈥檚 not built to handle. Your body is not built to be constantly traumatised.
Then there鈥檚 the fact that the things we go through in Nigeria are not normal. We are so used to it that we have dehumanised ourselves. We don鈥檛 deal with the anger and the rage, but it鈥檚 still somewhere, either inside of us or we鈥檝e transferred it to someone else to deal with.
Living with fibromyalgia has made me realise that I just want to have positive energy around me and transfer that positive energy to other people and by doing this, somehow improve the world. Even if it鈥檚 just for one person. I don鈥檛 have energy.
One important thing I learned from my mother is that valuing yourself. My mother was very clear that she deserved to be happy. She valued herself. Women need to know that we don’t need the trauma. We have value just by being here. Eyan nla ni e. We don’t need to break ourselves and our bodies to be anything.
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