Meet Heather

by Karen Shaw


I know it’s Heather’s house before I even check the numbers on the doors. It’s bright yellow, and like her, it stands out. Our rendezvous is in her garden, and on arrival, she slowly opens the door to welcome me, “I’ve had a bad morning,” she says sitting down.

Now for most, a ‘bad morning’ usually means we’ve split our coffee, ran out of petrol, or missed the bus. Heather’s morning has been swallowed up. She’s used her precious energy on prizing herself out of bed, showering and getting dressed ahead of our meeting. I cross my legs in the vain hope she won’t see the coffee stain I have on my jeans.

Heather Holderness, from Padiham in Lancashire, is 36-years-old, wife to Stu and mum to seven-year-old Hollie and until last autumn was leading a relatively ‘normal’ life until the day she woke up unable to see or move.

“I thought I’d had a stroke,” says Heather. “I can’t really remember how it started but I could just feel something creeping over my face. I had that on my face for a few nights it was like a crawling on my skin, the third night I just couldn’t communicate at all. I didn’t want to think about death, but I definitely thought I was having a stroke.” Heather’s sister, Evie was on hand and whisked her to the A&E department.

“I had my sister Evie asking me questions, because I know if you’ve suffered a stroke, it’s important to keep their mind going, it’s better for the recovery,” grins Heather.

“After we’d been to A&E, they sent to me to Specsavers, as they couldn’t find anything wrong. Obviously, I had no joy there, because it was my brain that was the issue and not my eyes. Then I started feeling ill at work. I can’t really describe it other than I felt like I was going under water, that would come and go. The first paralysis and speech effect was around November. It took me two months to get my first MRI. We eventually decided it would be better if I went private, because my own GP said to see the neurologist would be nearly a two year wait.

It was Christmastime, and while most of us were receiving gifts bringing happiness and joy, Heather received her diagnosis.

Heather was identified as having Functional Neurological Disorder (FND), the UK’s most common disease that only a few have heard of… until now…

“The results came on the spot, as soon as I walked in, they did a few tests on me and went through the symptoms. I’d never heard about it before I’d seen the neurologist,” says Heather.

Functional Neurological Disorder (FND) can encompass a diverse range of neurological symptoms including limb weakness, paralysis, seizures, walking difficulties, spasms, twitching, sensory issues and more.

In layman’s terms (or mine), imagine your Christmas tree lights, all tangled and mangled up. They still light up and work but it makes it difficult when dressing the tree. Everything is there, just not quite where you want it to be.

The basic wiring of the nervous system is intact, but there’s a problem with how the brain/nervous system is ‘functioning’, and how the brain fails to send and receive signals and messages correctly. This impacts on how the body responds to different tasks such as movement control and attention. Heather’s main symptoms are her speech and limb paralysis.

“I can feel it creep across my face and then my limbs go dead. I’m lucky I can feel it coming on so I can predict it. For a while it was a certain time every night but it’s eased off now, it was always at 4.30am on the dot. “I’ve got Fibromyalgia as well, so it’s a double whammy. When the Fibro is flaring it makes the FND worse. Some sufferers have full leg spasms and paralysis that lasts months, with some learning to walk again.”

It was four years ago that Heather was diagnosed with Fibro which began with neck and back pains and tiredness. “I just thought I had pain due to working a full shift and having massive tits!” She laughs. “I think FND was under the surface all along and the Fibro brought it up. The science of neurology is relatively new, the cure is something that they’re still researching.”

Walking and talking is something we take for granted. I wondered how Heather stopped herself from exploding with sheer frustration at her current situation.

“It’s an invisible illness, with me, you wouldn’t know until I open my mouth,” she grins. “People try to pre-empt what I say. It’s scary when you’re completely non-verbal. “I was non-verbal after my MRI scan, I had a bit of a do, they were talking to me and telling me what they were going to do. They were going to take me to Blackburn Hospital, but I didn’t want to go to there. Not being able to say what I need is very difficult. It’s made me think about people so differently, like people with dementia.”

Not only did the onset of FND steal her sense of normality, it also deprived her of her job as a store assistant. “Going from being sociable is very hard. People can be cruel, that was one of the reasons I didn’t go back to work because it would have been very hard for them to keep me. I would have found it too physically demanding. I can do with being the ‘fat, funny lass’ but if someone says that ‘spacker’ over there…,” she shrugs her shoulders. “Some people are like that, not everybody, but some. The most difficult thing is using the phone, because I have to clarify what I say two or three times until they can understand me. It’s tiring.”

Tiring! it must be soul-destroying. Not only has Heather had her own health issues to contend with, she’s also been supporting her husband Stu who has Sarcoidosis, a rare disease that produces too many white blood cells damaging lungs, eyes and heart. “It’s affected us in many ways, but we’re finding our way through it,” she smiles.

Stu, aged 47, had a pacemaker fitted, after Sarcoidosis began affecting his lung and then heart. “It’s been more of the unknown.” sighs Heather. “Especially for Hollie. Whenever somebody goes to the hospital or dentist, she doesn’t like it. She thinks something bad will happen. In herself she’s completely fine and full of sass. She’s such a character, daft as a brush!”

Although playing with Hollie is often difficult for Heather, she has found another way to communicate with her daughter.

“If I’m playing with the dolls, I can add a ‘singy’ voice and then I’m almost fluid in my speech. It’s odd. It’s to do with muscle memory and using a different part of your brain, the left and right. If I need to rest then I need to rest, there’s no other way around it. I know so many people that inspire me in different ways just to get up, Hollie especially.

Heather is currently awaiting speech therapy sessions. “I don’t know how it’s going to work, or when it will be due to Covid. I think it’s mostly for my muscles. There’s not much information. I do things for myself; I’ve got a contraption that moves my legs for me and I’m changing my diet. I don’t know what works and what doesn’t. It’s just finding out ways to cope.”

And cope she does, despite her deliberating illness she’s looking forward to meeting up with pals in August this year when she’ll be flying the flag as Miss Diamond Curve Lancashire in Miss Diamond UK a national pageant.

“When I started off, I was able to walk and talk, despite having Fibro. I decided to get involved when a good friend committed suicide. I had no idea she was depressed. She always had a smile on her face, she came to Hollie’s birthday party, then two weeks later she was gone.

The pageant raises money for the Samaritans so I wanted to carry on with that. At times I’ve felt like I don’t want to communicate with people and do stuff, but the problem I have in speech is the same problem people have when they are that ill and need to speak. They just can’t physically bring themselves to speak, so it’s that stop gap.”

FND Awareness, created a campaign and had people join in. People are affected in different ways. It’s just a bit of daftness and fun really. We used to have Butlins and ‘Miss Lovely Legs Skegness’ but that died off in the 70s. The more Americanised type of pageants came in which are better because they’re less looks based and run by women. There are some pageants specifically for disabled people for invisible illnesses online. Some for larger women, trans women, any excuse to celebrate!

I want to prove to myself that I can do it. I want to inspire other people to get out. I want to finish what I started while I’m still able.”

Although this beautiful lady may have had her voice stolen by FND, it certainly hasn’t stolen her spirit and it definitely hasn’t stopped her from speaking out.