Reality Checks of Living with Lupus
Updated: Mar 28
I try to live a simple but meaningful life, well I thought I that was what I had been doing.
When I lived in Nigeria, I had been ill with malaria and the medication used to treat this is one that is used for people with SLE. So, in essence, it was masking the Lupus. Honestly, I do not know how to feel about it- if there is a way at all to feel. I certainly was not going to start worrying myself over this. My focus at this point was my life ahead of me with my hubby and daughter.
Reality Check 1- Acceptance
I have three interlinking conditions- Systematic Lupus Erythematosus (SLE), Membranous Glomerulonephritis (MGN) and Chronic Kidney Disease (CKD). Of these, the latter is the one I still struggle to accept. I know it is there and it cannot be changed. But certainly, over time I have been able to think about how I associate my life and my health with the term CKD and that is to keep it in solely in clinical communication if at all. When I talk about my health, I will mention SLE and MGN at most if detail or specificity is required. I guess this is just one of the coping mechanisms I have developed.
Reality check 2 - The impact of Lupus on my health
This peaked in my second and third trimester of pregnancy. My asthma flared, I developed hypertension, and the worst was when I was told that I may have to give birth at 30 weeks. Thank God whatever was happening to my body did not affect my daughter in any way, shape or form- although there were increased risks of preeclampsia, she was doing well. We had her at 37+5 weeks and none of the risks manifested. I did everything I was advised to maintain my blood pressure and asthma, as well as taking my medication; which nicely leads me on to my next Reality Check...
Reality Check 3 - Medication
If you know me, you will know how much I cannot stand medication, tablets, injections the lot! Then imagine me now having to inject myself with one of my prescribed medications at home and slowly, they started creeping up. A major aspect of the realities of taking medication was when I had to have a one- time infusion of chemotherapy medication. It didn’t bother me at the time but I remember thinking that this is something they use for people with cancer and which is not my case, but if it would keep me well and control my health then I’m all in. What also strikes me now and more often is the number of tablets I have to take a day. The way SLE affects me could be much worse (I’ll explain later) but I am always thankful that that is not my story, journey or situation.
Reality Check 4 - Tests
From weekly blood tests, to have to face the fact that I needed to have 2 biopsies, having all these tests done was almost like testing my faith. Believing and trusting God that all will be well despite the temporary discomfort. I think that seeing the number of blood test tubes is always a shocker for me, I have such a low threshold for pain and for the fact I have been able to see these numerous tests through is a massive thing.
Life will always give you tests, I just need to remain prayerful coupled with help of my clinicians to ensure I will have testimonies to keep sharing.
Reality Check 5 - Living with an INVISIBLE ILLNESS
I look well. I feel well. And for the most part, you won’t see any signs of me being unwell or the severity of the condition. But when the fatigue kicks in I have no control I become so unproductive; not because I don’t feel like working, more like I cannot work because the energy just isn’t there. It can easily be mistaken for being lazy or just rude- It’s very easy to be misunderstood. I have always been the kind of person to challenge myself out of my comfort zone. However, this invisible illness surely put me in my place- I have learnt to listen more to my body and to be assertive.
I feel that I have also had to cope with the fact that people do not know much about SLE- so kind of invisible in the mind of others. To raise awareness it one of my goals through this blog. Again, I find that I am pushing boundaries and it's allowing me to grow and flourish the more.
Reality Check 6- Live for today
Life is for living and despite all the realities I have to face, with God and my family by my side, I sincerely feel stronger than ever.
Live, Love and Learn always xx