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fndandmecom

Living with Functional Neurological Disorder.

Month

October 2015

No tricks for me!

Brown_lady

In response to The Daily Post’s writing prompt: “Trick or Trick.”

I’m a real sucker for Halloween fun. I love the effort some parents go to, to make their little darlings look the part.

The worst trick I could be subjected to would be something really frightening. Such as a  Ghostly encounter. They say that it is the living we should be afraid of and not the dead. However, when it comes to spooky tricks, ghosts are definitely what I find the most scary!

I have had a few spooky experiences in my time. How about you? …

Opening a can of worms…

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I have been reading quite a few autobiographies over the past week. One author described the task as ‘indulgent’. I felt that this was probably a good way to describe it. Depicting each moment of your life for the reader and trying to make them agree with the importance.

Although this blog is by no means an autobiography, it is an open door into my personal life and battles with FND (Functional Neurological Disorder). I find it quite therapeutic and satisfying. My friends, family and colleagues who have had a chance to read my blog are beginning to gain a better understanding of my illness. Also, many readers had never heard of FND and now know about it and have a bit of understanding about what is involved.

I have been researching more as a result of writing this blog and now realise just how lucky I am. Some other sufferers are in a much worse state than me (paralysis, wheel chair bound).

I will continue to share and spread awareness and hope to help others.

Thanks for reading

Charlotte xxx

If you work hard for something, you have earned it, no one can take that away from you.

Thinking

I am in the middle of my ‘half term’ break from school. We as a family are enjoying a well deserved break. Unfortunately, I am still unable to completely forget about work. Teaching as a profession really becomes a lifestyle. It tends to be the last thing you think of before you fall asleep and the first thing you think of when you wake up.

Since falling ill, I have supposedly taken a step back from whole class teaching and I have been teaching small groups 4 days a week and covering another teacher for a whole day on a Monday. Due to a lack in school funding I have had to accept a lower pay bracket and have been given two contracts. One of these being a HLTA (higher level teaching assistant) and the other a supply teacher. As you can imagine this has had a huge impact on my financial situation as well as my confidence. Teaching Assistants are amazing and are vital in the classroom. It’s not that I care being labelled a TA as that is by no means a bad thing! What I find hard is that after working my butt off to gain my teaching degree, due to my illness I have almost had my teaching title stripped away. This has knocked my confidence as I feel that although I am currently working as a teacher (marking, planning, assessing, subject leading- the list goes on!!) I am not always considered as a member of teaching staff.

I have thought about this a lot lately and a prominent thought that has come to mind is something that my Auntie, a fully qualified nurse, said to me. ‘No matter what you do, where you work, who you come across, one thing that no one can ever take away from you is your teaching degree. Anywhere you go you will always have that under your belt. It is something you have worked very hard for and something that helps to define who you are’. The more I think about this conversation with my auntie, the more I can smile to myself, I know that no matter what title I am given or what others may assume, I am and always will be a teacher.

Thanks for reading,

Charlotte xxx

Just because you can’t see ‘it’, that doesn’t mean ‘it’ isn’t there!

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Invisible disabilities are chronic illnesses and conditions that significantly impair normal activities of daily living. In the United Kingdom, 96% of people with chronic medical conditions show no outward signs of their illness, and 10% experience symptoms that are considered disabling.

When I first started to have symptoms of my illness, you could visibly notice that I was suffering as I used to experience facial paralysis and twitching. As my symptoms have developed and changed my face no longer ‘drops’. As a result of this most people assume that I am well. I really do wish this was the case!

FND along with a huge list of chronic illnesses, such as:

Arthritic / Rheumatic Condition’s

Chronic Fatigue Syndrome

Chronic Widespread Pain

Fibromyalgia

Irritable Bowel Syndrome

Ménière’s Syndrome

M. E. Myalgic Encephalopathy

Myofascial Pain

Seasonal Affective Disorder

Trigeminal Neuralgia

can all be ‘invisible’. I am very aware of this, so I don’t get angry when others assume everything is okay. I try my best to not complain about my constant pain. I don’t want people to feel sorry for me and I want to be treated as normal.

If you know someone who is suffering from an invisible illness, please try not to judge them. Some of the people who I considered to be my friends haven’t been very understanding. They think that I’m anti social and I don’t want to come over or go out. This really isn’t the case. Imagine waking up every day and feeling beyond exhausted, suffering from constant pain but still having to ‘put on a brave face’. Sufferers of invisible illnesses have to deal with this each and every day.

I hope that you don’t find this information negative as that’s not what I intended. Part of raising awareness includes promoting understanding. I hope that this is useful and informative.

Thanks for reading 🙂

Charlotte xxx

Good days and bad days…

I am not too good today. I think we all have bad days. After my recent visit to Queens Square to see my neurologist, I feel quite hopeless and let down. It can be very difficult to stay positive all the time especially when you’re in constant pain.

My neurologist kept repeatedly mentioning that what I have is a ‘Chronic illness’. Should I just except this and carry on?

Having a long-term, or chronic, illness can disrupt your life in many ways. You may often be tired and inpain. Your illness might affect your appearance or your physical abilities and independence. You may not be able to work, causing financial problems. For children, chronic illnesses can be frightening, because they may not understand why this is happening to them.These changes can cause stress, anxiety and anger. If they do, it is important to seek help. A trained counselor can help you develop strategies to regain a feeling of control. Support groups might help, too. You will find that you are not alone, and you may learn some new tips on how to cope.

I hope that anyone reading this never has to experience what I am experiencing!

I hope to be more positive next time!

Thank you for reading

Charlotte xx

Finding the right balance. 

Brain

What makes a good parent? Is it all about the amount of quality time you give or about the way you support and provide for your children?

As a working parent, I find that I constantly feel torn between my family and my job. Working in the teaching profession is extremely demanding and due to my illness, I am only working part time. However, even when I am home I’m still working, whether it be marking or planning and preparing resources.

I wonder what affect my absence will have on my children. I hope that I am showing them a good example by working hard and providing for my family. However, part of me wonders if they feel resentful for the time that I give to my job.

We are all guilty of stressing out from time to time but this again can contribute to FND. I always try to think in a rational way and try not to over pressure myself. My advice for any working parents is to allow yourself quality time with your children. Try not to feel guilty about the time you spend on your work but make sure you allow yourself time for you and your family.

After my diagnosis I was sent to take part in Cognitive Behaviour Therapy (CBT). This is normally used to treat people suffering from OCD. The purpose of this therapy was to retrain my brain to accept my illness and not fe

el guilty for saying no when I need to. I attended several sessions and although it didn’t cure me it helped me to find ways to not stress.

I hope that this information has been useful. Thanks for reading!

Charlotte xxx

Stop, Look and Listen!

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We all live in a way that we have become ‘conditioned’ to. We learn how to adapt and survive in our environment. This ‘survival’ can effect our health if we put too much pressure on ourselves to keep it up no matter what life throws our way.

Sometimes life requires us to stop and take a look at what is going on around us. You need to accept that it’s okay to stop and allow your brain to process what is happening.

This is very relevant to what happened to me when I first started to experience symptoms of FND.

I began my teaching degree when my youngest son was just 10 months old and my oldest son was 5. I had finally got the courage to separate from the boy’s dad after years of physical and mental abuse. My life was changing (for the better) at a ridiculous rate. I never stopped to take the time to process what was happening and what was changing.

In my final year of University, I went through an awfully traumatic experience involving my children and their dad. I had to stop all contact for their safety. This all happened just as I was about to start my final placement. I felt that I couldn’t stop and process what had happened. I went on as if nothing had happened and thankfully passed my placement and also got offered my first teaching post at my placement school. This was all fantastic, however I had no idea what mental stress I was going through.

When I first fell ill in May 2013, I was in a great place. As mentioned before, I had just started working at a lovely little school. My boys were happy and healthy. Mr Right was just amazing, supporting me and looking out for me and my boys. So why did I suddenly fall ill?

After research into my condition, I found that FND can be a way of your brain dealing with a traumatic event. If your brain is not given time to process what has happened it stores it away in your sub conscious to be dealt with later when you are ‘mentally’ ready.

When I fell ill, it was at a time when my brain felt that I was ready to deal with the emotions. I was happy and content and so FND was unleashed upon me. My brain became overwhelmed with what was being thrown at it and so it became confused. This is where I went into the fight or flight mode. My nervous system went under attack. My body began releasing too much adrenaline and began to react to the battle going on inside.

My message to anyone taking the time to read my story is to allow yourself to process changes in your life. FND can happen to anyone at any time in their lives. Perhaps if I had stopped and asked for help when I was going through the trauma in my life, I wouldn’t be ill today.

I believe most of us are guilty of ‘living to work’ instead of ‘working to live’. When we experience something awful in our lives, we tend to just bite the bullet and carry on. This is a human survival technique. However, if you imagine your brain like a hard drive on a computer, full of information suddenly obtaining a virus, we wouldn’t just leave it there. The virus has to be ‘dealt’ with in order for the computer to work properly. This is the same as when we come across a difficult point in our lives. If we just try to carry on as normal, eventually our mind needs to deal with the difficult experience in order to carry on working efficiently.

So I guess my advice for anyone whether you have FND or not is to Stop, Look and Listen. Our mind is a precious thing, look after it and always allow yourself some time to process what is going on around you.

Thanks for reading, Charlotte xxx

When life gives you lemons, make lemonade!!

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Do you ever wonder why certain things happen? Do you just except it and carry on?

Sometimes I think that I was given this condition to challenge me. I try not to feel sorry for myself as I don’t want to become a ‘victim’. I can get angry and frustrated waiting for the day that it all goes away (hopefully!!). Some days I feel almost normal but I know that it’s always there inside me.

The final instalment of my journey to diagnosis started in June 2013. After weeks of tests including Lumbar Puncture, several MRI scans and lots of other delightful intrusions my neurologist felt that he was close to discovering what was wrong.

It was a hot Saturday afternoon in June. I was at home with my eldest son. I was in my bedroom resting. As I went to get up, my head began to pound and I began to experience a burning pins and needles sensation over my head and body. Then my eyes clamped shut and I couldn’t open them. I had to call for my son to help.

He came in to help me on to my bed, then out of nowhere my body flung backwards and I began to convulse violently. My poor boy had to witness this for the first time on his own. He was so amazingly brave, he called for an ambulance and stayed on the phone until the medics arrived. Eventually after convulsing for about 30 mins they managed to ease my symptoms with medication. Unfortunately, the seizures kept coming and once again, I was admitted to my local hospital.

My neurologist was informed and I was sent back to Queens Square for another round of tests.

In August 2013, I was finally diagnosed with Functional Neurological Disorder. My symptoms can vary but I generally live with regular migraines, non epileptic seizures and extreme fatigue. I experience constant pain but I am able to manage day to day on my medication. There is no cure for my condition but there is hope that eventually it will ‘burn out’. There is a detailed explanation on the following website: http://www.neurosymptoms.org/ . This website details all the possible symptoms someone with FND can experience.

FND has been a life changing condition for me and my family. However, I am lucky as I have the great support system around me. Although I have had to cut my work hours, I am still able to work in the job that I love. I try my best to support my children and live a relatively ‘normal’ life.

When I was diagnosed I had a choice to make. I needed to decide whether this illness was going to define me or whether I would choose to fight it all the way. I choose to fight and I hope that my story will help to give strength to others living with a sometimes invisible illness. Over the coming weeks, I plan to share ways that I have adapted my lifestyle in order to function with FND. As I have mentioned before I hope to spread awareness and to help anyone else who might be suffering.

Thanks for taking the time to read my blog. I plan to update in the next few days.

Charlotte xx

The story continues…

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Firstly, I would like to say thanks for the positive feedback on my first blog 🙂

I am really excited to get my story out there and even if it helps just one person, I will be happy.

So to continue with my story, after spending the night in hospital following my ‘episode’ the doctors/neurologists were happy to send me home as they believed that I had Bells Palsy (temporary paralysis of the face). I was given a course of steroids and sent home.

Following this I returned to work but within a couple of days my face dropped again and my eye began to twitch uncontrollably, this was coinciding with an almighty migraine. I had to be sent to hospital again as the pain in my head was excruciating. Once again I was kept in hospital for observations and tests including an MRI scan. At this point the doctors could not see anything obvious in my brain scan but they definitely felt that this was a ‘neurological’ issue.

It’s hard to explain in words what this was doing to me both mentally and physically. I am and always will be a ‘worker’. I felt as though I was letting everyone down. My children, my family and my work colleagues. This wasn’t due to the way people were reacting, it was my own self punishment. I felt angry and frustrated. I wanted to be at work and stupidly (now I realise!) I kept trying to return to work. If I worked anywhere else, I really don’t think they would have been so understanding. Despite only knowing me a short while, I think they knew that it was very hard for me to accept what was happening.

After another stay in my local hospital, I was referred to The National Neurological Hospital in Queens’ Square, London.

A month had passed, I was suffering with constant debilitating migraines and a bells palsy like drooping of my face. We all had great hope that the doctors at Queens Square would be able to tell us what was going on and could stop the symptoms.

My neurologist was very understanding and showed great empathy. He said that I would need a lot of further tests to find out what was going on. I had to have a Botox injection in my EYELID (ouch!!@#). I was put on strong medication used for epilepsy which basically just made me sleep all the time. They arranged for me to return in a couple of weeks for a day of tests to try to get to the bottom of what was happening.

Despite all that we have been through as a family, I am a very lucky person, I know this now more than ever. As I take you on this journey, I have mixed emotions. Part of me feels sad but then I realise that on every step of way I have had the love of my family and friends supporting me. No one should have to go through something like this without someone to support them. If you are lucky enough to have that then no matter what happens to you, you are blessed.

I hope that I haven’t gone on for too long, I’m still ‘finding my feet’ with this blogging business. Once again a huge thanks for taking the time to read my story. Please feel free to share or comment. I will try to update again in a few days.

Thanks, Charlotte xx

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