Tuesday, 27 March 2018

My Story So Far


Imagine waking up one day to find your legs don't work properly. When out walking a short distance you find they are weak, then all of a sudden they give way underneath you so that you can no longer stand. This is what happened to me whilst outdoors & stood in a fast food place waiting to pay.





My story starts way back in December.
On 1st Dec 2017, it was my son's birthday and I threw him a party at the climbing centre. It had been very hectic at university in the weeks prior to this as I had just finished two of three assignments and deadline date was only days before. I felt extremely tired and stressed with all the work load and had been getting little sleep due to the work load and also house hunting & being there for my mum who has recently been unwell. I'd had a sore throat but just thought I had a little cold coming on.



Ruben's party was a success. He loved it and we all climbed the walls at the climbing centre. We had music and food with some of our closest friends and family. I was feeling achy and thought it was down to the climbing. After all I felt very unfit after not exercising much lately!



After the party when rubes was in bed, I started to get a fever. I felt ever so cold whilst wrapped in layers of jumpers and blankets whilst feeling hot then cold and shivering. My jaw was rattling so much so that you could hear it across the room! I went to bed feeling very achy & sleepy that night.



The next day, I woke up and it was my 31st Birthday! Yay!

But, oh wait, I felt awful, my throat felt like razor blades. Great! My birthday was spent laid on the sofa feeling sorry for myself. All plans to go out to celebrate with friends were cancelled. 


Well I only got worse and soon realised I had tonsillitis but this was the worst id ever had. I was completely floored for days. I was taking numerous natural immune system boosters to try speed up the recovery but nothing seemed to work. It got to the point I had to go to the Dr's because I couldn't breath through my throat. I told the Dr I could hear ear wax in my right ear but she said it was because I was congested and gave me some antibiotics for the tonsillitis. I didn't quite understand why she didn't even look inside my ear.
My throat calmed down but I persisted to be unwell and was laid up for 2 weeks. And I haven't got better since then..........

Labyrinth

Christmas was fast approaching and I set out to do whatever present buying I could do from the comfort of my home using online shopping. I managed to get back into the school run and just powered on through, as us mum's do. Thankfully it was the universities Christmas holidays so I was able to rest when Rubes was in school.


One morning though, something strange happened. I had a very mild cough, but this particular cough did something inside my head. I coughed quite harshly, and then all of a sudden, something felt like it went pop in my head and I felt a sudden sharp pain on the right hand side which was so painful it hurt my eyes! 


Well that was weird. 

Id never felt pain like this. I felt alarmed, but off we went to take Rubes to school whilst suffering a headache. Whilst outdoors this headache got worse and my eyes felt overwhelmed by the daylight. 

Id planned to meet my sister in town to go shopping that day, but I urgently needed to go home to sit in darkness to try to shift the awful headache I had. That's when the wobbliness started.


At home, I was sat in darkness and just out of nowhere my body started to be pulled to the left hand side like a magnet was pulling me. 

I felt dizzy and my head kept being pulled in different directions, from front to back, side to side. I tried to stand up but I couldn't keep my balance. My whole body was pulled down the side and I felt so wobbly I couldn't control what was happening.

I couldn't understand what was happening so called my sister up. I explained how it felt as it was happening, I told her my head was spinning like I was on a ride, like physically spinning, then it felt like something was pinning my head backwards but next I'd be pulled to the left hand side, then the right. It was like being on a boat ride with the waves rocking you side to side.

I started to get worried that I might be having a stroke.


Oh no! 

My sister advised me to call up the Dr's, which I did and I was asked to go in just after lunch. The wobbliness and headache carried on in bursts. When at the Dr's I saw the same Dr I'd seen previously. She gave me a physical examination and told me I had Labyrinthitis. Id never heard of this before.

Labyrinthitis is an inner ear infection. It causes a delicate structure deep inside your ear called the labyrinth to become inflamed, which affects your hearing and balance.


So... Time passed and I continued to have these episodes and a terrible headache each day. These headaches were like no other. They felt like it was hot on the inside of my head and I could feel pressure building up inside around my ears.  I kept getting tinnitus and my hearing became very dim. They would pop, then my hearing would become clear again until they fogged back up and everything was much quieter than usual. Also, whenever I had a vertigo attack, my eyes would go all wobbly and roll around all over quite like I'd had far too much to drink! This made me feel very uneasy when walking beside the road.


I was forced to stop driving lessons because it just wasn't safe to be behind the wheel when I couldn't see clearly for half of each day. I tried two types of anti dizziness med's from the Dr which didn't help, so I tried to just carry on as normal and not let it affect Ruben or my degree work. I had to just keep on going. I had no time to be ill.


When the Christmas break was over, Ruben started back at school and I started back at uni. We started a new project doing metalwork which I was so looking forward to getting stuck into. Unfortunately, I found that whenever I was in town walking the streets, my symptoms would be at its worst as the noises and stimulation were triggers for an attack. Everything would happen all at once. It was really quite horrible. 


When in the metal workshop, I found it a great struggle, as every little bang or machine would make me go wobbly and hurt my ears. I started to wear ear plugs/defenders when I needed to use a machine to drown out the sound so it didn't affect my vision, that way I could work safely. My ears became very painful and itchy, I could no longer turn my head to the left, or look upwards or left using only my eyes as this would trigger all of my symptoms. It was so painful & I became very upset and distressed so much so I felt emotional and upset when walking the streets in agony but persevered in order not to take any time off uni because this was so important that I did not fall behind. 


Art is therapy, so when I am sat quietly being creative, I am at my most content. It was just all these life altering problems were actually affecting my life and I couldn't take no more.

Image result for brain ideas art

I soon realised I had another infection so went back to the Dr's who told me I had an outer ear infection, probably caused by wearing ear buds and over cleaning my ears with cotton buds. I managed to get through the next few weeks by choosing to use the workshop on quieter days to avoid the noise.

Once I'd completed the metal project, we went straight onto textiles, which is another love of mine so I couldn't wait. My outer ear infection had started to shift so finally I started to feel an improvement.


Oh, well until we got into the textile's workshop when the sound of just one sewing machine alone sent me so dizzy, I couldn't see straight and my head would be pounding. Imagine hearing lots of machines going off at once. Crikey!


Again, I used ear defenders to use a machine myself to practice free machine embroidery. I must have looked so cool sat there sewing with big headphones on to drown out the noise. I still went dizzy..


Next comes the serious stuff.......................


Id started to get double vision which raised alarm bells so I saw a lovely Dr who was completely baffled by all of my symptoms so he sent me through for an emergency MRI scan the following day, which I had on Saturday.


Having an MRI scan has to be one of the most surreal experiences I'v ever had to do. I felt so very nervous of the seriousness of it all. I was anxious and was worried Id have a panic attack. As we walked from the car, my legs felt weak and I was wobbly. I'd taken some music to help calm me down but the receptionist told me I wasn't allowed it. I was also told I wasn't able to have a sedative to relax me as I hadn't pre arranged it. 


"Please can I wear headphones to protect my ears from the sound"


"Sorry, but no, you will not be able to wear anything other than ear plugs because you need to have something positioned right beside your ears."


How annoying. All of the things I'd hoped to be able to use to make the process as relaxing as possible, I couldn't have.


"But what if I get another outer ear infection?"


This just added to my worry. Despite feeling very anxious, I used breathing techniques to calm myself down. It was very claustrophobic in there, and extremely noisy. Nothing like what id expected.


I spent 25 minutes in the machine. I laid there with my eyes closed the whole time and tried to imagine being somewhere exotic but I couldn't focus on anything other than the bangs and clicking.


I realised the noises actually sounded quite like techno music! So I decided I'd picture myself on the dance floor of a club and drummed along to the beat of the sounds. This helped me somewhat. I spent 25 minutes in the machine. It actually felt like less. Once it was done I was so relieved. After all, this was the best way of finding answers to all of my problems, whatever the results.


After having the scan, my sister, mum and brother and I, stopped in the car to go greggs to buy a drink and a snack. I felt ok until I was stood in the queue waiting to be served.


My left leg gave way from underneath me. It became so weak that it collapsed. I was holding onto the side which held me upright. I told my brother that something weird was happening. He could see that my knee was bent and my left leg was bending as if I was going to crouch on the floor..


"That's not right Layla" He said.


When I tried to stand upright my leg wouldn't take my weight. It felt like gravity was forcing it downwards.


It eased off a little and I was able to walk outside the shop. But then as we were walking I felt my leg giving way again. I was dragging my leg along the floor and was getting lower to the ground the more I walked.


I managed to get into the car where I was happy to be seated.


It happened again when we stopped at a second shop and I told my sister.



The only thing I can find relation to this feeling was that it was exactly like in the recurring dreams I had growing up as a teenager.


When I got back to Damian's house, I called 111 as we were concerned about these symptoms happening on the left hand side of my body. Signs of a stroke? After all the Dr told me to go to a&e if my symptoms got worse, and they had.


I was instructed to go in to a&e within the next hour. So mum dropped me off and Damian assisted me. 


When at hospital my headache got so bad the light hurt so badly. It was excruciating pain. I was giving a room with a bed to wait in where I could lie on a bed with the lights off. We waited some time. I found I could barely walk when there. I was being pulled towards the floor. I couldn't control my legs properly.


What was happening to me????


Whilst waiting, me and Damian talked about anything but was was happening to lighten the mood of the crappy situation.


All of a sudden my tongue went all tingly, pins and needles at the tip of my tongue. Then I started shivering terribly, so much so my jaw was rattling.


"Alert the nurse, Damian."


After 15 minutes I was checked over and left alone again. I felt so freezing. 


We finally got seen by a Dr after 2 hours since arrival. She ran numerous examinations and asked me of my previous history. She was quick to tell me I had loads of air bubbles in both ears, and a slightly high temperature. Everything else seemed fine. My reflex actions were fine but weaker on the left hand side but nothing caused for alarm. She was happy for me to go home to wait for the results of the MRI as I wasn't having anything serious happening like a stroke or aneurysm ( few!).


But why was I having such a long list of symptoms?

I didn't understand what on earth was happening to me.

I was supposed to be out that weekend for the first time in ages as I'd been booked to perform on the Fri and Saturday but this caused me to cancel. : (



received the results on Monday whilst having pins stuck in me for acupuncture....



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I was told I have a tiny Meningeoma in my inner ear. My right internal auditory meatus to be premise.

Shock horror!


This cant be real? My worst fear had come true. I'd hoped for anything but this. 


All I could think of was my mum's dad who we lost to a brain tumor when he was around aged 50. I couldn't stop thinking of what this news would do to my poor mum. After all, she lost her dad when she was aged 15. She also lost her daughter to cancer aged 20 and her mum aged 91. And then my dad passed away suddenly in 2016.

Our family have been through so much, yet mum especially, stayed so strong. My inspiration. My rock. I dreaded telling my family the news.



The following day I started having what I thought were a series of seizures and was admitted into hospital by an ambulance with blue lights. This ambulance was with me quickly, in 5 mins. Amazing really when you think about how busy the ambulance service are right now. . . .

After arrival I was sent to resuscitation after there was a mix up with mine and an older males ECG report. (crazy huh) They thought that my heart beat was fluctuating so I had to have my heart monitored whilst my family& friend Anna stood beside my bed, shocked and confused at the random news that I had a problem with my heart! I continued to have more funny turns & spent 11 hours in recuss whilst waiting for a bed to become free on a cardio ward in City.


When I was finally moved, the Dr's at City were quick to realise that both mine and this over 50 year old man with previous heart conditions, and my ECG reports were identical but with different names. 

They were convinced mine was the dodgy heart because of the seizure type episodes I kept having. My sister and I knew it wasn't mine because of the times and had to point it out to two Dr's that the times proved that it was the man who had a dodgy heart. Not me.

Thankfully I wasn't sent for treatment and tests so awaited the neurologist which is who I should have seen on first arrival.
This neurosurgeon examined me and ran some tests asking me of the many symptoms I'd been having for the past 2 months in relation to ear problems. He informed me that I'd been having 'non-epileptic fits' & diagnosed me with 'Functional Neurological Disorder'. This is why I was having the 'drop attacks' causing my legs to become temporarily disabled at unexpected sudden moments. What even is this? I questioned...
He also told me that I'd been having migraines,  and may possibly have had labrynthitis too, but he couldn't be certain.

The good news was that my unusual mass does not look aggressive and wasn't causing any immediate life threatening damage so no action was needed immediately and he was happy for me to go home and he requested for a second MRI scan to be had with contrast injection, to get a better look at exactly what is happening inside my ear.

So, my mum, sis & niece came to pick me up, gifted with treats. We waited for some medication to take home that would help with the dizziness and headaches.

As we left, I felt very weak but so pleased to be going home whilst also feeling anxious. We decided it is best I sat with my mum so she could help take care of me. As we pulled up outside of her house an attack came on, triggered by bright car lights, movement and noises inside the car. I was helped out of the car but my legs gave way. First the right leg, then both legs collapsed to the point i was squatting on the floor.

I became embarrassed of the neighbour's seeing me this way.

I was upset because I couldn't walk and I was in pain and frightened of something worse happening & not having medicals around to help me if things got worse!

My sister & mum both linked arms with me and held my weight to guide me into the house, my legs collapsed to the ground again and I was pretty much sitting down on the outside ground. They managed to help me into the warm and I settled down on the sofa.


For the next few day's I had many attacks & got lots of much needed rest in bed. I'd get a pain in my chest, pain in my arm, then leg followed by tremors in my arm or leg, sometimes my head. I'd go very drowsy and my head would be lodged backwards. I'v been told I look like I'm falling asleep. I feel disorientated when it happens and my breathing will be low and deep. It is very strange. 



I started to read up about my condition to gain a better understanding of what was going on & I found an FND & a Meningioma group on Facebook where I was able to reach out to others going through the same. I found that by researching I was able to understand more about what was happening to my body. I learned some tips to help manage my problems and within days I began to spot the warning signs of an attack so began to use distraction as a technique which would sometimes stop the attacks happening full blown. This gave me hope to learn that I could manage it using self help. After all, this was a massive shock and I couldn't see how I could live like this so I seeked as much research I could to find advice on how to cope with this new way of living.



I have found out that the Meningioma is highly unlikely to be cancerous and it is on the outer layer of my brain which means surgery is far easier.



Meningioma's are common, mostly in women aged 30+ and are 90% more likely to be benign. This sounds reassuring.



Life didn't just stop there though. I had a son to care for, degree projects to work on and a house to move.



I had no choice but to stay off uni, after all I was temporarily disabled and unable to walk my dog never mind go into town to study. I was very lucky to be given an outstanding amount of support with the house move and helping me to care for my son Ruben. 



Everybody rallied round to help me finish the packing and moving. I couldn't lift much as I'd get pains in my arms and my legs would go weak, the spinning and vision troubles continued so I was ordered not to move anything. 



This for me was extremely difficult, I felt like I'd lost my independence and was putting so much strain on my family. I tried to do my bit but the stress and over stimulation of the hectic surroundings triggered my attacks, so I had no choice but to direct the move rather than do it myself.



I was so thankful of the help given. I couldn't have done it without them.



5 weeks since the move started and it is finally complete. We are settled in our new home (have lots of unpacking to do!) and I have started to come to terms with my sudden change of life. I have had an outstanding amount of support in helping me with everyday living when I need help. 



I am having to take a much slower more relaxed pace of life with as little stress as possible as that is one of the triggers. Distraction is a wonderful form of self help which i'v continued to use when I feel an attack coming on so that it doesn't happen full blown. Easier said than done when they can come on at random moments. Some days I am completely floored with lethargy, pain and numerous 'non epileptic attacks'. Then other day's I feel fine with only a few moments of pain.



Thankfully I am ok most of the time and can walk and carry on as normal at short distances but I have all sorts of symptoms caused by this condition which is a quick reminder that my body is not what it once was. And this I have to adapt to. 



Sadly I have been forced to take a gap year from uni to get better, which upsets me but it means I have the time for hospital appointments and can make our new home nice and spend more time with family whilst get the vital rest that I need.

I refuse to let this change my life completely, my son needs me so I'm trying to live as much of a normal life as possible whilst not letting him be affected by this.



As you can imagine this is a massive shock to me and all around me but I am so so thankful that it has been discovered early. I havn't been right for a good two years but I just power on through and shrugged it off as general tiredness and having a low immune system. But that day back in Dec when I coughed which brought on instant headache and dizziness like the room was spinning and set my balance and vision off (vertigo) I knew something had happened inside of my head.



I am very in tune with my body and only go to the Dr's when i really need to, but I'm so glad I did do with this even if they did tell me it was just labyrinthitis at the start!



The last 8 weeks have been extremely difficult with all that has been happening but I'm taking each day as it comes and keeping my loved ones close especially Rubes cos he needs his mummy and I need him.


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One evening I went to samba dance class and was excited but also nervous that the stimulation and energising movements would trigger an attack. My aim was to do the stretching and easier moves but in actual fact,
I was able to dance energetically for two whole hours just like I used to.

Much to my satisfaction!!! ............ Buzzing!!! :D

My FND condition is strange, your body is able to dance or walk backwards but not walk so easily. I'm so happy that I can carry on doing one of my old hobbies which is dancing. Without music and dancing I'd be miserable.
There is hope to keep doing the things I love. Which makes me want to do a happy dance!


.........................On Thur 29th March I have the 2nd Mri scan with contrast injection. It has been two months since diagnosis so it will be interesting to see if it has grown or not. I want answers. I want a solution & I want to get better.

Life really is precious. Our mind our body the way it functions. It is our temple and we must take care of it and listen to warning signs.

I'm still the same Layla just with a new way of living. I refuse to let it change my life completely. You can't keep a good woman down. 

My story continues and my fight will go on. I will continue to stay positive as much as I can and I will continue to do what I love to do with the ones I love, because life goes on. I will not be defeated

I am a fierce tiger. My body is my temple and I will own it and 

wear it with pride. 

Thanks for reading my story.

Much Love & Blessings <3


Positive Mind.
Positive Vibes.
Positive Life.

Image result for being strong for health quote


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