She had the world at her feet. Then little by little, it started to crumble……..
Leonie’s first challenge in life was when she was born! At a week old, the last rights were read after she developed Impetigo (a bacterial infection). Little did she know that once she had got over this, that her next challenge would be life changing, ongoing and incurable.
Until she was around 24 Leonie was a fit and strong girl who was a spray painter by trade.
She suddenly started to experience changes in the use of her right arm and hand. The pain was diagnosed as Carpal Tunnel Syndrome and resulted in surgery, all the while Leonie ‘pushed through’ and began her work using her left arm.
The surgery did not fix the problem and if anything it made matters worse. Complex Regional Pain Syndrome and Fibromyalgia (a hypersensitive nervous system creates chronic pain) developed and Leonie’s life began to change.
Her legs began to lose function and the associated pain could continue for days before improving again until the point where there was NO improvement to expect. Exhaustion and pain put an end to her running days and so began her journey into doctors, neurologists, psychiatrists, therapies, MRIs, CTs and tests.
Four years ago Leonie was walking with a shopping trolley as an aid and explains that ‘her legs just went’. She hasn’t walked properly since that day.
On a good day she can stand and ‘hobble’ a little. On a bad day she has extreme tremors or paralysis of her legs and can not move. She is also allergic to most pain killers.
Her diagnosis has been determined as POSSIBLE Multiple Sclerosis (MS) AND Functional Neurological Disease (FND). This means she has both a structural disease (MS) AND a functional disease (FND) of the central nervous system so that the brain does not communicate with the nerves in a way that allows normal body function. Frustratingly Leonie has not been able to get a definitive diagnosis for one or both diseases. She is hoping to find a(nother) Neurologist to help progress with some answers. If you can recommend or help at all please get in touch with me.
Only recently, researchers have discovered that FND affects the white matter of the brain as opposed to the grey matter like MS. As a result, this may allow for societal and medical acceptance and payable benefits to help sufferers which in the past, has not been available.
Four years since that day her legs ‘gave up’ and where is Leonie now?
When I met her, she rolled up in her brand new purple wheelchair with its own motor that is controlled with a wristband sensor. She had driven to meet me in her Land Rover in which she wears weighted boots to allow for pedal control and there is an upright handle on the steering wheel to allow for one handed steering. She LOVES cars!
When she’s not driving the car or in the purple wheelchair, she’s on a ride on mower or a mobility chair.
Her other love and mode of transport is Legacy- her 18 hand horse who’s been with her through the whole journey. Leonie AND Legacy have adapted to the new world in which they live. Leonie is able to mount her horse from the ride on mower or with help of someone for support and hasn’t let her disability hinder her passion for horse riding. After listening to her story, it is evident that the connection between horse and rider is strong and genuine. It’s such an important role in Leonie’s day to day of coping with her disability.
Leonie tells her story with self acceptance and willingness. She said ‘there’s always something positive’ to see.
The one aspect which does cause some frustration is the fact she has to live off a disability and New Start allowance and the process through which she receives it is ‘a nightmare’.
She is hoping to one day make her entire income from photography, which currently is a hobby. She spends much of her time sitting and explains that part of her condition is a slowed learning process. So although her short term memory (which is the same part of the brain as affected by MS) suffers, she intends to take advantage of the ‘still times’ and LEARN.
Once a painter Leonie is clearly creative and has just succeeded in completing her Certificate in Professional Photography and will soon begin her Diploma. Her hope is to become independent of ‘the system’ with a steady income for something she is passionate about AND able to do. She would like to be her own boss to allow for her ‘rough days’ when the tremors take hold, she’s vomiting or she is laid up with exhaustion. To be able to work her own hours would be ideal as she says her whole life is ‘a management process’ with medical appointments and ongoing care and adaptation.
As always when I interview people, I asked Leonie for three pieces of advice she would offer to someone in a similar situation to what she is living and learning from.
“Find a reason to smile every day. Even if you feel like you can’t or you don’t want to or it hurts too much or you don’t even want to be here any more. Just find a reason! Think about your family or your pets. You are STILL important to someone and to society.”
Oh Leonie! What a simple but powerful lesson! A lesson we should ALL take on board and one that could be so contagious if only we put our mind to it. Smiles are free and can make someone’s day.
“Don’t get disheartened if you have to see a lot of doctors because not all doctors know about EVERYTHING. You need to find one that works with YOUR body and one who LISTENS.”
I feel like this is important through any industry, any friendship, any relationship, any connection! To be HEARD and helped. Leonie also has some great support groups and family and friend groups on her side.
She said ‘my family and friends are amazing!’.
She says that while many are trying to help, they haven’t ‘lived it’ and can’t relate to what she is going through. Support groups communicate and offer advice from a level only they can understand. You can find Leonie in MS and disability support groups online where she learns about others and similarities they share.
“Keep trying to do the things you love. You’d be surprised at how you can work around whatever’s stopping you. Even if you fail. It’s better to try and know you’ve tried than sit there wondering.”
Leonie followed this statement up with ‘make sure you rest’ after trying! She’s learnt the hard way how exhausting the ‘try’ can be!
Time flew while I met Leonie. She was open and honest and I think there should be more like her! Rather than MY conclusion here, I’d like to finish with a photo she sent me and the caption with it. It sums up her attitude and mindset with her disability better than I could ever hope to.