Monday 29 April 2019

'But You Don't Look Sick' - Metro series

So I've just come across a series of articles in The Metro called 'You Don't Look Sick'.

It features lots of different people with a variety of invisible illnesses and disabilities including Parkinson's, cancer, sickle cell anaemia, asthma, M.E., Multiple Sclerosis, COPD, Inflammatory Bowel Disease endometriosis and more.

It's really interesting for me to learn about how different illness affect individuals, but also the difficulty in having an invisible illness or disability - something that I can really relate to. 

In the articles it covers what the illness is, how many people are affected by invisible illnesses/disabilities in the UK and the impact having an invisible illness/disability has on individuals, for example how feel they feel that they have to quickly exist disabled loos to avoid judgement, their condition not being believed at work, worrying about disclosing their illness, and even one person giving up their Blue Badge (disabled parking permit) because of abuse they'd received.

A link to the articles is:

It's really good to give invisible illnesses/disabilities the spotlight to raise awareness and understanding so hopefully the public can be more aware.

Sunday 28 April 2019

The M.E. Show Podcast

So I've recently discovered podcasts, which are especially enjoyable when I'm needing something to listen too, but need to lay in bed with limited light and sensory stimulation.

What's so nice about podcasts is that I find them easier to follow that an audiobook which may have a bit more of a complicated plot to follow and when I'm not feeling 100%, like recently they're also a lot shorter in length which helps when your concentration is lacking.

One podcast I've been enjoying is The M.E. Show (link to iTunes) which is run by Gary Burgess with the support of The M.E. Association. I've started from the beginning which was first put up last year. Each episode Gary interviews different people such as Jennifer Brea who shared her story of M.E. in the film 'Unrest', Dr Charles Shepherd who has M.E. himself and is a spokesperson for M.E. in the UK, Jane Colby from the Tymes Trust, Emma Donohoe who presented the Documentary 'M.E. and Me' which I blogged about last year and you can read it here and many others affected by M.E./CFS from carers to professional, to individuals with M.E. and even MP's and charity workers.

Gary himself has M.E. so it's amazing that's he's able to create the podcast for others like myself.

Gary also runs a website and blog called 'The Zonked Club' for people affected by conditions that cause fatigue such as M.E.

I'd really recommend The M.E. Show podcast. Each show is less than an hour and it really light going so it's easy to follow and it's quite informative at the same time.

Friday 19 April 2019

April Birchbox 2019

Card reading 'Your a gem' and a selection of five beauty products laid out inside a boxThis month's Birchbox came with a lift up lid, mirror and magnetic closure. I'd already been thinking of combining some old empty Birchbox's to make myself a jewellery box but in receiving this month's box it was just perfect to add as the top compartment.

This month in my box I received...

ESTATE Cosmetics 

Dew Me Baked Highlighter

Full size RRP £10

Silky smooth baked powder to swipe over your cheekbones, brow bone and eyes to give off a soft glow.


The POREfessional 

Sample size RRP £28

I've had this product before and I love it. It makes your skin feel ultra soft and smooth ready to apply your foundation and other makeup products.


Diamond Eye Pads

Full size RRP £4.99

A pend of caffeine and diamond powder (yes, really!) to hydrate, de-puff and brighten your eyes.

I'm feeling a bit ill today so when I went for a nap I put these on. They was nice and cooling. I left them on for longer than suggested. I did notice a difference when I took them off. Normally I have to put concealer under my eyes as they're a bit off colour but when I took them of I noticed the colour under my eyes was brighter and more blended with my skin tone and they looked less tired.

They was really easy to use and apply. A nice little treat for my eyes. It's not something I'd probably buy myself as they're a bit expensive for just two eye pads but it was nice to try them out and give my eyes a a bit of TLC.


Body SoufflĂ©

Sample size RRP £16.45

A lightly whipped cream to nourish your body.

Balance Me

Wonder Eye Cream

Sample size RRP £20

A multitasking eye cream using chamomile, coconut, cucumber, rose hip and carrot oils to de-puff, brighten and soften and smooth the eyes.

Tuesday 16 April 2019

The M.E. Show - Call for Volunteers: M.E. Association

Our Gary Burgess is producing a special edition of The ME Show podcast to coincide with ME Awareness Week in May, and he needs your help:⠀

"I’m looking to feature a number of people with ME speaking in their own words about what life with ME is really like.⠀

It’s simply a case of making a recording on your mobile phone or other device and emailing it to me at – most phones have a voice memo function.⠀

Or you can send me voice message via Facebook using the microphone symbol in Messenger or on the M.E. Association's Instagram.

Don’t worry about hesitations or needing to re-start your words. I will edit them all before they go live, I promise! If you’re interested. Here’s what I need:⠀

Start with “Hello, my name is ___ and this is the real M.E.”⠀

I’m then simply looking for you to speak for a minute or two about what your day-to-day life is like, warts and all. There’s no right or wrong thing to say.⠀

It might be describing your domestic routine. It might be about how you manage your illness when it comes to seeing friends and family. It may be, if you’re able to do some work, how you do it. Perhaps it’s a top-tip you have that could help others.⠀

By editing together a number of “Real” stories, I hope to create a picture of how M.E. affects different people in different ways.⠀

If you can help, I’d be most grateful, and am looking for a recording by Friday 19 April.

Tuesday 9 April 2019

My FND Symptoms - World FND Week 2019

My FND symptoms...
"FND Symptoms are poorly understood and can be debilitating". – Dr. Jon Stone


I have daily seizures, some days are better than others. I have a mixture of tonic-clonic seizures which are your classic unconscious convulsions. 
I then have myoclonic seizures which are involuntary jerks; these are usually in my right arm and because of my hypermobilty it can cause me to sublux or dislocate my shoulder, sometimes the force has even knocked me backwards. Sometimes I get the myoclonic seizures in my whole body. 
I also have absence seizures which are brief losses of consciousness and they just look like day dreaming moments.

After a seizure I become what is referred to as 'postictal' which is the altered state of consciousness post seizure. Sometime this can last anywhere from a few minutes to several hours. In this time I'm confused, I have speech difficulties, disorientated, and I can experience nausea and develop a headache or a migraine. 
Post tonic-clonic seizure I am very weak and I need help with simple tasks like walking, drinking, taking medication etc.
I can also go into rigid muscle spasm which is very painful.

I can sometimes go into what is referred to as 'status seizures'. or me this presents as an unconscious state of back-to-back tonic-clonic and myoclonic seizures which can last for quite some time and I usually need medication to bring me out of these episodes.


My mobility is also affected due to sensory disternbances in my legs. Basically the messages between my legs and my brain get scrambled so walking or moving can be difficult as each step is a conscious effort so I can all off-balence and it very tiring and painful so outdoors I use a wheelchair. I also use crutches.

Sometimes those messages can also cause me to get numbness in my body, usually either in my legs or down the right side of my body. I also get pin-and-needles pain in my legs which can affect my mobility.
As well as the neuropathic symptoms I have muscle weakness

I have regular falls because my legs just give way.

Chronic Pain

I've forgotten what it's like not to be in pain if I'm honest. Somedays I can just get on with my day, others days I'm in bed crying trying to distract myself.
I have all sorts of pain - nerve pain, joint pain, muscle pain etc. Sometimes it's localised to a specific area like abdominal pain or in my hips; other times it's generalised all-over pain.
Chronic pain is a symptom of my other illnesses.

The problem with FND is that the pain is that the pain signals can remain switched on in the brain so I might dislocate my knee but even when it's sorted in my brain the pain signals remain on and this can last for days, weeks, months and even years.

Cognitive Dysfunction

Again this is another illness that features across my other illnesses and it's another major symptom for me.
Brain fog is like your brain working really slow and you struggle to remember and process things. It's like if someone throws a ball at you it's going to hit you; you can see where you're looking at them but you don't know that they threw the ball til after it hits you. It's also like being drunk , like really really drunk (without the alcohol) and you have slurred speech and you forget words and get things mixed up.
As well as the brain fog I get confused a lot, or example I'll pick up a fork instead of a spoon and I struggle to follow instructions and I lack the concetration and I struggle to focus such as on conversations or in TV programmes. I'm very forgetful, I get tired, I also find it hard to complete tasks.

My speech is also affected. I often forget words or I confuse words and mix words up. I also utter and stammer on words - sometimes this is post seizure and other times it can common randomly.

Bladder and bowel problems

Another really embarrassing symptoms for me as a young person is bladder issues. I have incontinence and a leaky bladder, partly this is because the brain signals between my bladder and brain don't work and my HSD also doesn't help. I have urinary urgency as my brain does't get told it's full until it's really full so wen I need a week I NEED a wee! But because of my poor mobility often I can't get to the toilet in time so I have to wear incontinence pads. As well as this I also go into urine retention. I have frequent infection including UTI's.

I also have digestive issues again because my brain and digestive stutter don't "communicate" well with each other.

Other symptoms

Like with my other symptoms above they cross over a lot with my other illnesses. I have chronic fatigue, vision problems - especially double vision, hypersensitive (especially to light so I wear tinted lenses and noise is difficult and strong smells; this is partly because my brain finds it harder to process sensory input). I also have major sleep problems, headaches and migraines.
I also get a strange sensory disturbance whereby parts of my body feel smaller or bigger than they really are which is really odd and scary.

"These disorders cause an impairment in quality of life that is similar to, and in some aspects worse than, that experienced by patients with Parkinson’s disease or MS."  - FND Hope

FND is really unpredictable illness to live with. I can't predict even one minute to the next. One moment I can be fine an the next I could be on the floor or unconscious having a seizure. I can find myself going into spasm unable to self medicate or hold a cup or be unable to communicate or be curled up in a ball crying in pain.

Treatments for FND

Targeted treatments for FND in the UK are few and far between. Treatments for FND include medication, occupational therapy, physiotherapy and psychology.

I personally and am hoping to get funding to go to inpatient rehabilitation. My fight for funding for a care package continues.

As a result of my symptoms I find basic day-to-day tasks difficult to do, for example personal care, self medicating, preparing food, drinking etc.

I feel very lucky to be under the care of Professor Edwards in London who is highly regarded in the FND community and his understanding of FND is amazing and he is very understanding, supportive and sympathetic.

GUEST POST by Kirsty for World FND Week 2019

A woman in a wheelchair with a toddler on her lap sat in front of a tractor.

I've suffered from something called Non-Epileptic Attack Disorder for 11 years, since March 2008. I was 14 years old at a Hoosiers concert when I experienced my first seizure and although I've had seizure-free periods, once for 2 years!! They've always returned. They're just a part of me now, although it did take me a LONG time to get to this stage. I won't sugar coat it, it's legitimately the most painful, tiring and ultimately embarrassing experience of my life and no matter how many you have or how long you suffer, it doesn't get any easier, you just learn to live with it I guess.

On 14th August 2018, I had a normal, for me, seizure but when I came round I woke up completely numb from the waist down, unable to coordinate or even move my lower limbs and losing urinary incontinence. I'll be honest, I was so naive and oblivious to the severity at the time. I was laughing! I remember my call to work so vividly "I'm really sorry, I don't think I'll be in tomorrow, I've just had a seizure and I'm currently wetting myself!" IMAGINE IT! I honestly thought I'd trapped a nerve, I'd go to hospital they'd crack my back or something and I'd be fine. Little did I know.

I spent 8 days in hospital, I was catheterised and completely wheelchair bound.

In October, I went to get out of my wife, Heidi's, car but I couldn't. I was crippled in agonising pain with severe lumbar spasm and experienced complete left leg paralysis. Now, I was scared. I wasn't laughing anymore. My mother and father in law rushed around to help Heidi get me out of the car and called a ambulance. I was admitted to hospital where I stayed for another 8 days. This time I was prodded, poked, assessed and scanned multiple times and at the end of October I was diagnosed with FND, Functional Neurological Disorder. A disorder that means the brain doesn't communicate with the nervous system properly meaning signals are mis-communicated, slowed down or not received at all.

For me, FND effects my left leg, my bladder and recently we've established it's also the cause for my seizures but it effects different people in different ways; men and women, adolescent or elderly and its causes are unknown.

I went into bladder retrain where I was partially successful, I could now urinate for myself but suffered severe retention leading to incontinence so I now successfully self catheterise. At first, this was a massive change, however, self catheterisation has actually given me my life back! It allows me to live my life as normal as possible. There's no permanent tube to cover and I don't have to worry about peeing myself anymore or wearing nappies at the ripe old age of 25! It's quick, it's simple, it's discreet and ultimately it's dignifying for me! AND, I can pee standing up like a bloke ;)  Can tick that off the bucklist, no sheewee needed, no sitting on dirty public toilets or squatting in a bush and peeing down my legs! There's got to be benefits and for me this is a massive pro!

I was also put onto a Neurological Rehabilitation Programme which involved intense physiotherapy to try and retrain my brain to effectively communicate with my lower body again! I progressed and I came so so far! Albeit still in a wheelchair but in a much better position that I was in August! I regained full strength in my right leg and it was fully functioning! I was up on my feet, walking on crutches and furniture crawling! I became a fully fledged toddler completing toilet training and now learning to walk!
In December 2018, I relapsed again leaving me hospitalised for 3 weeks this time where I received intense inpaitent physiotherapy! This is a LUXURY to receive for this condition so although it was SO hard being away from my wife, Heidi and my son, Woody, I knew I had to grab the bull by the horns and run with it (pardon the pun, I can't run!). I progressed so much I am now able to mobilise unaided indoors on flat surfaces, outdoors I look like Bambi, but baby steps...LITERALLY! Unfortunately, upon discharge at the beginning of February 2019, I was given the bittersweet news that I was unlikely to make a full recovery from FND. A bitter pill to swallow after the rollercoaster journey I endured thinking I only had a trapped nerve! But sweet to finally have some kind of answer and some brutal honesty to be able to draw a line and move on and learn to live my life. Not just me, but my family too. 

You CAN make a full recovery from FND. It's not entirely impossible. But the retraining has to happen immediately. After reevaluating my neurological history with my seizures, my neurologist came to the conclusion that I've infact had FND since March 2008, when my seizures started, not August 2018 which is why the retraining wasn't proving easy and the results were slow moving. Essentially, my brain has relearned this as the 'new normal', like a reflex, and that's not easy to reverse. It's not impossible, but there's not a 'quick fix'. FND is so incredibly under researched and that means there's a severe lack of understanding, education, knowledge, funding and therefore treatment. Even the very few specialists there are for this condition are somewhat clueless of it too because the tools and resource just isn't available.

The lack of understanding and inability to 'fix' those suffering with FND has left a stigma around the condition, even in the medical world. I'm incredibly fortunate to have the team I have behind me, I have had to fight for admission at A&E once because of it, but I've never been at the receiving end of derogatory comments or refused treatment, and believe it or not, lots have! My GP, neurologist and physiotherapist are 100% on my team, we learn together, we fight together! And I'm truly appreciative of that, but I shouldn't be thankful for receiving brilliant care, everyone should be entitled to it!

That's why I've restarted the blog. To blog my journey. The good, the bad, the ugly! The ups, the downs and the round and rounds! The trials and errors as well as the successes because that's how we learn! 7th-14th April is International FND Awareness Week, 13th April I've signed up to do a 5km run with two of my sisters, two cousins and my son. I won't be running, but I intend to do as much as I can walking, aided, and the rest in my wheelchair but I will complete it!

If you'd like to donate to help fund research into the condition I have then please feel free to donate, all donations go to FND Hope UK, but even if you can't or don't want to do that, just sharing my story raises some much needed awareness!

This is a pretty succinct (for me!) overview of me and FND over the last 7 months! But I'll go into certain things in more detail over time I'll try and keep up to date! Working full time, having a toddler and now balancing this condition too can have its challenges in 99% of my life, but I'll certainly try! Anything you want me to write about, answer, address or have my opinion on then please do ask :) I'll be as honest and truthful as always!

Monday 8 April 2019

Living with FND for World FND Awareness Week 2019

FND (Functional Neurological Disorder) is where the the brain's messaging system (the central nervous system) doesn't work properly so my brain is unable to send and receive messages properly. 
"One way of thinking about FND is looking at it as a bit like a 'software' problem on a computer. The 'hardware' is not damaged but there is a problem with the 'software' and so the computer doesn't work properly."
Some of the symptoms are constant, meaning that they are prominently there such as cognitive dysfunction, chronic pain and fatigue and other symptoms are episodic which means that they come and go such as seizures, headaches/migraines and sensory disturbances.

Some people may only have one or two symptoms, others have numerous symptoms. And like my blog title we are medical zebras because like a zebras stripes no two zebra's are alike and no two people with FND will be alike despite having the same illness.

I've have FND for 6 years now. It's started of with a few symptoms  pain, tiredness, dizziness, falls, involuntary jerks but I just put it down to being overworked at University. And then one day at a friends I have a tonic clonic seizure. I had to have a tube put down my nose to seizure my airway - not nice coming round with that I can tell you. Since then my symptoms have progressed and more diagnosis' have been given to me.

FND has completely turned my life upside down (alongside my other illnesses) and in someways I'm having to re-find myself as I've lost so much to ill health.
I try to focus on the others aspects of Naomi but sometimes, especially on my bad days my health just takes over.

As well as affecting me physically being chronically ill and disabled has a huge emotional toll. Permanently being in pain and having to deal with a host of other symptoms; not being able to predict one hour to the next; dealing with appointments etc really affects me. Sometimes I feel more able to cope and then I have times like I'm going through at the moment where I'm not feeling so resilient and my health really affects my mental health.

I get a whole range of emotions. I get frustrated when I can't get my body to do what I want it to do or I get upset when I'm in pain and meds aren't helping.

There's also the other things that come with being disabled, like people misusing Blue Badge parking spaces.

I feel like my life is on hold at the moment. I had my life all planned out and then I got ill and now I'm just waiting and waiting and waiting.

FND isn't very well understood which is really really difficult to say the least. I've often been accused of feigning my symptoms or exaggerating my pain levels.
I've learnt to live with FND and my other illnesses and I've learnt to put on a mask. I often use the analogy of a duck where the duck look like it's gracefully gliding on the water, but underneath it's paddling like mad to stay afloat. 
I've learnt that shouting/screaming/crying does very little so outwardly I may look "okay" but inside I'm shouting/screaming/crying.

Sunday 7 April 2019

World FND Week 2019

Today marks the start of World FND Week. The first awareness week of it's kind dedicated to FND.

FND stands for Functional Neurological Disorder.

FND is a malfunction in the central nervous systems affects the the way the brain sends and receives messages affecting the body in numerous ways. As my blog name suggests no two zebra stripes are the same and that's the same for FND as no two people with the condition are alike.

My main aim of this post is to focus on stigma an the misunderstanding around FND. Often is is mistaken for being a psychosomatic illness, for example seizures and often individuals with FND who have seizures are seen as feigning or are 'pseudo-seizures' when in fact most seizures are non-epileptic which are caused by a whole range of reasons including FND.

Other symptoms are also treated the same way, for example continence issues - why would someone deliberately wet themselves?! Or with the movement issues that some people with FND experience and professionals not understanding why and are thinking that people are putting on an unbalanced gait or are faking or exaggerating a loss of sensation in their body.

Because in the past FND has been seen as a psychosomatic illness many healthcare professionals unfortunately still hold this view even though research and new knowledge shows that it is a very real physiological condition which individuals have no control over.

Even earlier this week I met with some very misunderstanding paramedics and my carer was trying to explain to them as to why would I put on a episode and to explain my care plan to them.

The stigma an lack of education around FND is upsetting and frustrating. Often I'm left wishing I had a more well-known illness as then I may get the care and understanding I desperately need.

As a result care and treatment options for FND are severely lacking in the UK and the need for more research and treatment guidelines is greatly needed.

I wouldn't wish FND on anyone and being on the receiving end of poor care and judgements about my illness is horrible. Most people would think that when professionals are faced with an illness they don't fully understand they'd listen and ask the patient, but in my case that's rarely happened an instead I've faced criticism, accusations, poor care and more.

I'd like to see more education of FND and for patients like myself to be listened to and asked about our illness. Over the next week I hope to talk more about FND to speak about the different aspects of living with the illness to hopefully raise some awareness.