In this month’s Community Interview we talk with Maira about her chronic illness.

Hello Maira! It is awesome to talk with you today. Could you please tell us a little about yourself? 

I live in Islamabad, Pakistan. We are nine family members now: me, my mom and dad, my sister, two brothers, one brother in law, one sister in law, and my cute little niece. I also have a pet cat he’s my baby and he actually thinks he’s a baby. He misses me a lot when get admitted in the hospital.

I do have a few hobbies like nail art, kanzashi art, artificial flower making art, interior designing etc.

What terms do you like to use in relation to your illnesses/disabilities?

A person who is chronically ill but thriving through any kind of hardship.

Do you have a diagnosis for your symptoms?

Yes. It’s called VUR which lead to chronic kidney disease and I have many more illnesses like stomach ulcers, anemia, absence seizures, angina, skeleton deformity, and stunted growth.

VUR is Vesicoureteral Reflux, a condition where urine flows backward from the bladder into the ureters and sometimes the kidneys and damages them.

Chronic kidney disease (CKD) is a type of long-term kidney disease in which either there is a gradual loss of kidney function which occurs over a period of months to years, or an abnormal kidney structure (with normal function). Initially, patients are usually asymptomatic, but later symptoms may include leg swelling, feeling tired, vomiting, loss of appetite, and confusion. Complications can relate to hormonal dysfunction of the kidneys and include (in chronological order) high blood pressure (often related to activation of the renin-angiotensin), bone disease, and anemia. Additionally, CKD patients have markedly increased cardiovascular complications with increased risks of death and hospitalization. CKD can lead to end stage kidney failure requiring kidney dialysis or kidney transplantation.

Does having a diagnosis help you? 

Yes it does.

How long did it take for you to get a diagnosis?

10 years.

If you don’t have a diagnosis, can you please describe your symptoms? 

My neurological symptoms doesn’t have diagnosis. It all started with a head rush I used to bend over to feed my cat and when I get up I used to feel so dizzy that I couldn’t see anything and with time it got worse. I started fainting, my speech started slurring, my brain started getting slower, I couldn’t function properly, I couldn’t walk, in short I was in a bad state.

Does not having a diagnosis affect how you live your daily life?

Yes it does.

When did you first realize that you had chronic illness and how has your journey been since then?

I was born ill. I was born with a small bladder which caused VUR and that lead to CKD. So my journey has been in and out of the hospital ever since I’m born.

How has your experiences of the world changed since your symptoms started?

For me life was always different than a normal person because I never had a normal life. So I never experienced anything out of the way from the world.

Which of your symptoms do you find the most debilitating and why?

My absence seizures because they have no diagnosis and I’m having endless medications for them.

Absence seizures are one of several kinds of generalized seizures. Absence seizures are characterized by a brief loss and return of consciousness, generally not followed by a period of lethargy (i.e. without a notable postictal state). Absence seizures are most common in children. They affect both sides of the brain.

Can you describe what a bad day symptom-wise looks like to you?

When a person is in a lot pain and hearing a loud screeching sound like anxiety is banging in your head and you feel oddly restless and no medication is working.

When you have a good symptom day, what do you like to do?

I like going out with my siblings. I like to rest in and watch asmr or a movie. I don’t overdo myself on good symptom day too.

What has been the most helpful for you as you have gone through this journey?

My religious beliefs.

Is there anything you would like people to know about your chronic illness or chronic illness in general?

Well I would suggest never ignore that your baby’s organs will grow with time. VUR is a serious condition and small bladder’s doesn’t grow on their own.

Thank you Maira!

Make sure to follow along with Maira on Instagram @achronicwarrior