& # 39; My life stopped at 17 & # 39 ;: What it is like to fight this brave young woman against her hidden illness that is dismissed as laziness


Natasha Spychalski was looking forward to starting a degree in fashion purchases and hoping to pursue an acting career.

She studied a level in media, photography and textiles at Huddersfield New College and had it all for her.

But after Christmas 2011, in her final year at the university, she got sick with glandular fever. Eventually the disease passed, but her symptoms did not, Examiner Live reported.

After six weeks she went to college part-time, but had so little energy that she would go home to sleep during the day.

When her friends turned up at her 18th birthday party, Natasha watched from the sidelines, too tired to join them. And when they went into town after the party, she went home to bed.

After a series of tests, Natasha was finally diagnosed with ME, commonly known as chronic fatigue syndrome. In addition, she also suffers from fibromyalgia, a long-term condition that causes pain all over her body.

Her condition is incurable and there is no effective treatment.

Natasha Spychalski in Disneyland Florida

She shares her story to help people understand that not every limitation is visible – and to have compassion for others who may be struggling with something that you cannot see.

"I feel like my life has stopped at 5 pm.

"The disease really worsened after I left college – I was bedridden, I found it very difficult to do something active. Even walking to the bathroom was difficult.

"I had managed to study in uni, buy fashion in Manchester Met. I did two days and couldn't handle it, I couldn't get up and was in so much pain.

"The next week I stopped, I was upset. It's what you should do when you are 18. All my friends had gone to uni and I was stuck at home with no one."

Natasha, who lives in Bolster Moor with mother Pam, father Richard and brother Alex, 28, started working for her parents' property rental, but had to give up.

Instead, she has spent her teens and early twenties trying to control her debilitating condition, which can make her sleep for up to 23 hours, wake up only to eat and shower before falling back to sleep.

And despite her sunny personality, Natasha's condition has made her depressed.

She says: "There are good and bad days.

"My mom and dad have to put me in bed with smoothies because I can't chew on food – I get too tired."

Natasha Spychalski undergoes testing in the hospital

She says that fibromyalgia causes joint pain, but ME causes brain fog and concentration problems. Light and sound influence her and she suffers from joint and muscle pain.

She said: "Chronic fatigue makes you feel so heavy, as if you ran 10 marathons in a row. You feel like a dead weight.

"It's like walking through a puddle of syrup, the pain feels like your whole body is bruised and presses on something."

But Natasha says that people's response to her condition is worse than the pain and fatigue.

She said, "The worst part is that people don't understand.

"People say I'm lucky to stay in bed all the time, but I'm bored because I'm stuck, unable to go out.

"I missed so much.

"All my friends buy houses, in long-term relationships, have children, I can't think of being that way. It feels like I'm stuck in four walls for eight years.

Natasha Spychalski with her brother Alex, mom Pam and dad Richard

"I like going to the cinema and theme parks, going out with my friends for a drink and a chat about normal things that aren't tired.

"I try to go out twice a month, but in the run-up I sleep all week, so I can save enough energy to go out.

"If you cancel too often with a friend, they won't bother you later."

Natasha has tried many types of therapies, from painkillers to talk therapies, massage and even cannabis oil (CBD), but has found little relief.

She said, "Doctors don't know much about it – there isn't enough money or research, they don't know what to do, my doctor understands it, but she doesn't know what to do, there's no cure or treatment.

"The CBD oil helped with my depression, but not with chronic fatigue. The only thing that helped the pain is tramadol."

But Natasha has found help and support from other patients online.

Natasha Spychalski

She said: "In Huddersfield I noticed that the people in the support groups were much older and I could not address them. But online there are people my age and younger.

"You hear online about people who have been talking since they were 11 or 12 – I don't know how they did high school."

She says she has lost friends and boyfriends, but she has tremendous support from people closest to her.

"My parents are very good – they will do everything, they will pay for everything, they just want me to get better one day.

"My brother Alex is really understanding, if I'm very low, he'll hang up a movie and sit down and see how I'm doing."

She also has two rabbits, named Luna and Syrius, inspired by Harry Potter.

She says, "It's nice to take care of something. There have been many dark times when I didn't want to continue and they gave me something to do."

Natasha dreamed of becoming an actress and doing extra work in Waterloo Road and Shameless. But her illness made that too difficult.

She said: "I thought it was great, it was the best thing I did, it made me want to do more and go to drama school, but the days are very long. Today I feel good, but I will probably lie in bed tomorrow day ME is so unpredictable. "

Now Natasha hopes that her experience can help others understand what it's like to live with a chronic condition.

She said, "I want people to listen. People know what ME is, but they assume it's just fatigue. It's much more than that.

"They judge that you are lazy or pretend, because they cannot see what is wrong with you. But if it was not real or in my head, how could it have been here for so long?

"You don't know what people go through just looking at them."

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. (tagsToTranslate) Greater Manchester News (t) NHS