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“People have no idea what Severe ME is like” – Nevra, Pakistan

Nevra had to abandon answering questions because it exhausted her too much. Her story was instead compiled from Whatsapp conversations over the course of a few weeks before and after she had to move house:

When I was 5 years old, I got sick with a fever and couldn’t make it to kindergarten classes for quite some weeks. I went from someone who could attend school every day to 15 days a month. At that time polio was rampant in Pakistan.

My ME symptoms flare up with my PMDD, so I fluctuate between 10% to 5% to 0% of my previous capacity. As well as ME, I have Hypermobility spectrum disorder with Marfanoid features, POTS, MCAS, PMDD, OCD, endometriosis, TMJ disorder, CCI and suspected TC. I’ve never been as poorly as I am right now. I’m badly crashed and was supposed to be packing to move. I’ve got a fever, an unrelenting cough, a virus and…I just can’t.

I’m going through a very rough time gearing up for endometriosis surgeries while having intermittent paralysis and recurrent UTIs. I have to force myself to get up, empty my bladder and change my pad after 12 hours of being asleep. It’s only supposed to stay on for 3-6 hours. I can’t keep up with hygiene due to PEM and keep getting infections. My care is so neglected, it’s too much.

People have no idea what Severe ME is like. Even my close friends go “I’m crashing” and I’m like “What are you on about? You sleep for 2 hours and your crash is gone and you’re out clubbing”. Even when you show them proof that ME has the lowest quality of life of all chronic conditions, they gaslight you whilst complaining about how their own illnesses are misunderstood, or they’ll say “At least you don’t have cancer”.

My brain and body are not coping. I’m watching myself get worse and still my parents are pushing me. I’m not sure how I can do this… I’m feeling defeated due to ME. 

My family doesn’t believe me. My Mum says if I end things, God will punish me more by sending me to hell over and over again. And that is why I’m sick, because God gets angry when I want to give up and makes me worse. My folks won’t help me fundraise either. They claim Allah will send money down from the sky in suitcases and that if I was a true believer I would be patient. I’m terrified that they’re not understanding how fast my ME and PMDD are progressing. 

A family member pressured me into covering my hair out of nowhere and I fought back and broke down because I could not take any more. He went on and on about jinns and how they would enter my body through my hair and that my hair needs to be tied back and covered and said “I don’t care if you have migraines. I don’t believe you get them anyway.” He said, “Tie your hair. I will pray and your migraines will be fixed forever within a week.” I said “Nothing has ever happened with your prayers. You keep using this to get me to believe stuff you want.” He said “I can fix you in a week with my prayers.” This has been going on since my childhood.

I have been begging my brother for years to let me live with him but he has two kids now and also doesn’t want me and doesn’t believe I am ill. I tried to move out but it’s not safe here in Pakistan to live alone as a girl.

My new room’s window faces traffic. I can’t sleep and I’m having meltdowns from sounds all night. Motorbikes. Tankers.

I’m feeling really sad and crashed and nauseated. There are paint fumes everywhere and water damage and mould. I’m having a very bad reaction. Outside I’m stable but inside I can’t breathe, my head gets heavy and my neck hurts. 

I’m really angry. I didn’t want to move. I’m not wanting more pain and struggle anymore. I’m now gasping for air.

I’m really scared of what the mould is doing to my brain. My muscle pain, headaches and breathing are all worse but the brain fog is 10x worse. 

I have to sit in the chair outside to be ok which is not sustainable for a patient with Severe ME. I slept on the chair for an hour and my chest pain was gone. When I came back it started again. But I can’t keep going outside.

I’m finding it hard to battle everything with ongoing attacks and this. I really just want peace and if there is any loving deity I’m asking for them to save me.

#GlobalVoiceForME Nevra Elis Ahmed