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fndandmecom

Living with Functional Neurological Disorder.

New horizons. 

It’s been a while since I have blogged. I’ve been busy focusing on getting through each day. My health has been up and down but I’m pleased to say that I’m having more good days than bad.

This week I met with my new neuro physiotherapist, it turns out that I actually know her. Our children went to school together. She very kindly offered to pass me to one of her colleagues if I felt uncomfortable but to be honest, I felt more at ease speaking to someone I know. 

The purpose of this physiotherapy programme is to find ways to improve my tremor and the loss of sensation in my legs. Those of you who regularly read my blog will know that since November, I have been experiencing something called frozen gait. This causes me to suffer from temporary paralysis of my legs. They turn blue and I’m unable to move them. Luckily, at the moment, this is only temporary and eventually they start to move again. I saw my neurologist back in December and he referred me to my local neurological outpatients hospital. Strangely, in my notes he had said that I was unable to walk at all. So when my physio saw me stand and walk towards her she was quite shocked! 

I’m unsure why my neurologist put that I was unable to walk in my notes unless he presumed that’s what was going to happen?!?

My assessment lasted just over an hour. We went through my medical history and discussed treatment plans. I am going to be referred to an occupational therapist who can help with fatigue management. Unfortunately, there’s little they can do to stop my legs freezing. Obviously, my main concern is that I will wake up one day and not be able to walk. This sounds very dramatic but sadly I know that this can happen with functional neurological disorder. However, I refuse to live my life in fear and anxiety. It hasn’t happened and if it ever did I know that I will get through it! My physio discussed ways to try and get my legs moving and to be honest, I was already doing what she suggested. 

Overall, I feel that the assessment was positive. I’m still walking, I’m still working and just about surviving. I know how very lucky I am considering my diagnosis of FND! Yes, each day is a struggle and a battle. I never know what each day will bring but I know that whatever happens, I will not face it alone. I have an army of family and friends behind me and supporting me all the way and for that I’m forever grateful. 

I am in my final term of this school year. It’s been very hard for me returning to more whole class teaching but so far I have managed it. My health has deteriorated but I’m still going. I’m very lucky to work with such an understanding headteacher. I have episodes of seizures and bad turns at work but I’m treated with respect not pity and that means a lot. It’s hard, I’m not going to lie. Teaching is such a demanding job but I love it. I just hope that I can keep going and perform to the best of my ability whilst pacing myself and making sure that I don’t over do it. 

My next neurologist appointment isn’t until next month but hopefully if things stay afloat I will be okay. I fainted on Thursday and then had a seizure. Unfortunately, I landed on my right hand. Luckily, it’s just a sprain and not fractured and on the plus side at least I didn’t bang my head for a change!

Thanks for taking the time to read my story. 

Charlotte xxx 

Just a thought …

I love to read, not on a Kindle or any digital device, I love to read books. The smell of them, the feel of them. Having the chance to ‘escape’ into a whole other world.
I don’t have much of a chance to remove myself from my illness but when I’m reading, when I become totally engrossed in a fantastic story, just for a moment, I’m me again. 

I find that I become involved with the characters. I want to know what will be, where their ending or their beginning will come. You can be transported to another dimension, away from the sometimes harsh realities of life.

There isn’t one book in particular that I can choose as my favourite, there are so many I love. One book I read recently was ‘The Fault in Our Stars’. There’s a quote that sums up so much for me from this story and I would like to finish this short blog with it. 

‘That’s the problem with pain, it demands to be felt’ John Green.

Time to shut down …

As I drove away from my workplace on Friday afternoon, I began to cry. These were not tears of joy or sorrow. These tears that fell were tears of relief. I made it, only just but I got there. It was finally the end of term. 

It becomes increasingly hard to stay positive. Trying to believe that all of this pain will go away. You tend to feel that you’re wishing your life away. You’re weary at the thought of how tired you already feel when you wake on a Monday after two day’s rest. Despite all this, you keep plodding on. Why? Because it’s all you can do. 

We are barely surviving financially on my part time wages, even though I work 5 days I only teach 2 and a half. That’s the joy of my profession. If I was well enough to work full time we would be much better off but I am already pushing my body too much both physically and mentally. I hate that my FND continues to ruin things every day! 

I need to rest and recuperate over the next couple of weeks. We are heading to Scotland tomorrow to spend some time with my parents. I’m really looking forward to ‘shutting down’. I have a great need to eliminate any feelings of stress and to just completely relax. Focus on my boys and nothing else. 

I am going to make the most of everything. Having the chance to wake up naturally, having no alarm, it’s pure heaven. Also, having no set schedule and taking each moment as it comes is a rare opportunity. I plan to rest, meditate (good to try something new ;)) and heal as much as I can in the time I have.

Thank you for taking the time to read my story. 

Charlotte xxx 

Look for the positives. 

I am thrilled to see how much awareness was raised by FND Action yesterday during the FND Awareness Day 2017. They’re truly amazing and compassionate, they all worked really hard and it paid off. They even had two video interviews with Dr Mark Edwards and Dr John Stone, two main specialists in Functional Neurological Disorder. Below are links to these interviews:

https://m.facebook.com/story.php?story_fbid=402126683488737&id=291997261168347
These posts reached over 20,000 people and helped those who didn’t know about FND. A huge thank you to all of those involved!

I’m afraid I have been quite poorly, this seems to be a general pattern for me. As I head towards the end of term, I become unbearably exhausted and as a result I have more seizures and spend every waking moment in pain. Unfortunately, I had a bad turn at work on Friday. I didn’t know it was coming and if it wasn’t for my lovely friend at work it could have been a whole lot worse! It was all quite distressing, many people saw my seizure, normally I manage to make it to my head’s office but this time it didn’t give me enough time. 

I am extremely lucky to work with such lovely people. I feel guilty for upsetting others but sometimes, it’s just out of my control. More than anything, my pride was bruised. I’m quite ashamed to say that I was really quite devastated. Anyone who suffers from seizures  (epileptic or non epileptic) will hopefully understand why. The only way I can explain it is when I have a seizure I’m completely out of control. I’m vulnerable and not me. I’m a professional, I have worked very hard in the past to gain my career. When I fit, it’s like all of that hard work is stripped away. I become a lesser version of myself. I don’t want pity but I appreciate the kindness I am shown. I can’t change what has happened and will have to swallow my pride.

I just need to make it through to the end of term. There’s only one week left. I have had a lovely, relaxing weekend and have been spoilt by my boys for Mother’s day. Sadly, I haven’t been too well but I have been very well looked after as usual. 

Happy Mother’s Day to all the wonderful mums out there. I hope you have had a day of special memories just like me.

Thank you for taking the time to read my story. 

Charlotte xxx 

A problem shared …

Taking care of your mental health can be just as important as your physical health. When you live with a chronic illness, spending each and every day in constant pain, it can understandably have a negative impact on your mindset. 

Unfortunately, many people I speak to who are in a similar predicament suffer with anxiety and depression. It’s so easy to become completely consumed by pain and despair. It’s not so easy to break through this as you start to lose the will to live. I honestly don’t think I could stand my life, the way it is right now, if I didn’t have my family. 

That’s why I truly believe that talking about how you’re feeling is so important. If you talk to someone, it doesn’t necessarily have to be a family member or even a friend, just another person, it can really help to focus on what’s going on in your head.

Another important thing to do when you start to feel low is to recognise it and rationalise the thoughts you are having. It’s perfectly normal for anyone to have negative feelings and to feel a bit low. Especially if you are struggling, whether that be with your health or something else. However, when these thoughts and feelings start to take over and you can’t break through the darkness then you may need to seek more professional help.

I’m lucky and happy but despite this, I’m really struggling at the moment. The pain just doesn’t seem to lift, it’s constant and it’s starting to get me down. As a result of this, I have been acting out of character. I have been grumpy and snappy. Poor Mr Right is getting most of the brunt of it. I hate to be this way, it’s not me. The sad thing is that at the moment there’s nothing I can do about it. The good thing is that I see it and I understand it. I’m lucky that Mr Right is understanding and truly loves me. There’s not many men who could deal with everything he has and not run a mile!

I think all of my symptoms are so much worse at the moment because I’m exhausted. When my fatigue is worse, my pain is worse and I have more seizures. In an ideal world, I would just take time off to rest. In reality, I work and I’m a mother and a friend. I can’t just stop and rest, somehow I just have to keep going. I just hope that I make it to the end of term!

Please remember to always talk about how you’re feeling. Try not to ‘bottle’ things up. It won’t make your problems go away but it stops them from ‘bursting’ out of control. 

Thanks for taking the time to read my story. 

Charlotte xxx 

Knowledge is Power. 

Later this month, March 25th, it’s Functional Neurological Disorder awareness day. There are so many ‘understated’ chronic illnesses out there so I guess people might ask, ‘Why raise awareness about FND?’. That’s a good question, I’m going to give you just some of the reasons why it’s important for people to learn about and be aware of Functional Neurological Disorder. 

Since being diagnosed with FND in August 2013, my entire life has been turned upside down. This illness destroys lives, ruins opportunities and can leave a person permanently disabled. There are people living with FND who are wheel chair bound, they can’t walk or sometimes even feed themselves. Despite this, as there is so little known about the illness these people are left to get on with it. As it stands, despite the fact that nearly 40% of patients in most Neurological wards have FND, there’s no cure. Nothing. Imagine your whole life crumbling down around you and all the doctors can say is, ‘One day you MIGHT get better’.

I believe that there’s someone out there who could do something. If we work together to raise awareness, maybe someone might just get it. Perhaps not a cure but maybe a way to make symptoms less harsh, less ‘self help’ and more ‘real help’.

Personally, my main symptoms are as follows : 

Non epileptic seizures, migraines, neuropathy (shooting pains all over), tremor, extreme fatigue and fainting. I also now experience ‘Frozen gait’. This is temporary paralysis of my legs and feet.

However, there are many other symptoms a person with FND can experience. These can be found on the FND Action website :

http://www.fndaction.org.uk/symptoms/#more
I am extremely lucky to have a great support system around me but others are not so lucky. Imagine experiencing problems like these without any help!

I was 31 when I was first diagnosed with FND and managing and understanding what was happening to me was frightening to say the least. When you are told that what is happening to you is very real but there’s nothing that can be done, you begin to doubt your sanity. Imagine all of this happening to you and being a child. It breaks my heart that children have to go through this. I believe that this makes it even more important to keep working to find a resolution. 

I am currently finalising plans for a pamper evening to raise money for the fantastic charity ‘FND Action ‘. They do an incredible job raising awareness and supporting fellow sufferers. I believe that support systems like this charity are vital in getting through life with a chronic illness. 

I would like to thank you for taking the time to read my story. Your support means a lot. I constantly live in hope that one day I will wake up and all the pain will be gone. I will continue to fight for my loved ones. 

Charlotte xxx 

One Lovely Blog Award!

one-lovely-blog

I have been nominated for ‘The One Lovely Blog Award’ by the wonderful Rhiann Louise. You can check out her fantastic blog at https://brainlesionandme.com/2017/02/02/one-lovely-blog-nomination/ . I can guarantee you will have a great time reading her story.

 

Rules:

  • Thank the person that nominated you and leave a link to their blog
  • Post about the award
  • Share seven facts about yourself
  • Nominate at most 15 other people
  • Tell your nominees the good news

Seven Facts about Me:

  1. I’m a Primary School Teacher. I love my job despite how hard it can be! My favourite part of the job is when the children have their ‘light bulb’ moment.
  2. I love to sing and dance. I have always dreamed of being in a musical. I’m lucky enough to run my school’s choir and have performed with them at iconic venues such as The Royal Albert Hall.
  3. I used to be a Dental Nurse but I’m petrified of the Dentist. I think spending years watching some awful extractions has put the heebee jeebees up me.
  4. I have two children who are both boys. They are 10 and 14. They keep me busy but I wouldn’t have it any other way.
  5. I love to box set binge. If I like a show, I just want to watch each episode after the other. I’m currently half way through the Walking Dead, no spoilers please!
  6. I would love to travel. I have been to Japan, Spain and all around the UK but that’s it. Maybe one day!
  7. I would LOVE to be an author. I love to read books, not on a Kindle but an actual, beautiful book. I love the feel, the smell and the way a story can transport you to another world. I believe everyone has a story inside them and hopefully, one day, I will get the chance to share mine.

Image result for books

My nominees are:

MeRaw at The Journey of my left foot (whilst remembering my son) and Rinaldo at experience of thinking.

Think before you speak! 

We have all met times in our lives when we have come across challenges. Personally, I have had many, some have had bigger impacts than others. I like to think of these challenges as lessons. 

We’re never going to get along with everyone we meet so many factors come in to how well we ‘mesh’ with others. No doubt, some of these people will cause you much upset! 

One of the reasons I may have become ill with FND is due to traumatic experiences. My brain stored it away till a later date and then let loose all at once sending my brain into complete confusion and disarray. I’m not in anyway blaming the people who may have emotionally attacked me in the past for my illness. However, these moments, these mental traumas, destroyed just a small part of me which meant I needed to take the time to heal. I never did, I tucked them away, brushed them off. 

I know now that I can’t blame others for the way they’ve treated me in the past. At the same time I also can’t blame myself. I’m not and never will be responsible for any person’s actions other than my own.

I’m still constantly learning, life doesn’t come with a manual. I will say this; always think before you speak, try to look at things from the perspective of the other person. When you do, I promise you that things will start to make sense.

I am waiting for test results next week. Whatever the outcome, I know that everything is going to be just fine. After all the things I have been through, like everyone else, this won’t knock me down.

I am so grateful for my little family, we may not be perfect but I wouldn’t change them for anything! Also for those friends I know that understand and support me, thank you! Love you all x

Thanks for taking the time to read my story. 

Charlotte xxx 

Everything’s going to be alright!

It can become increasingly hard to stay positive when you’re constantly fighting a battle. I have struggled to motivate myself to blog over the past few weeks. This is mainly because I have been dealing with a myriad of new health issues. Some of these are linked to FND, however some are not. The strange thing is that I find it easier to accept symptoms of FND. When it comes to the unexpected extras, I find it so much harder. 

Every person you know, every person you meet would have come across ‘darker’ times. Unfortunately, it’s a fact that at some points life can be extremely bloody hard! I like to think that I’m a rational person but despite that I do sometimes wonder why? I know that everyone else has bad things happen. I hate to be all ‘poor me’ but seriously, I’m not sure how much more I can take.

I’m so exhausted, there’s not much fight left in me. I am no angel and have made MANY mistakes but have learnt from them and tried to become a better person. I take each challenge FND throws my way and fight not just for me but my family too. 

A cross road lies in front of me. Only I can choose which way to go. I can allow the ‘Dark Horse’ to carry me away OR I can run in the other direction as fast as my numb legs will carry me! Those that take the time to read my story will know that I will always choose to run but for the first time, that decision hasn’t come easily. 

If I knew how hard life was going to be perhaps I would have taken more care. I don’t ever want my downfalls to drag my children along with them. I try so hard to protect them but they’re older now. Let’s hope that all of this doesn’t make them ‘victims of life’.

So I will continue to fight all of my health battles and take each day as it comes. No one can be sure what lies ahead. If living with a chronic illness means that I have to make big changes in my life then so be it. As long as I have my little family by my side, I know that everything will be alright. 

Thanks for taking the time to read my story. 

Charlotte xxx 

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