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Living with Functional Neurological Disorder.

Month

September 2016

Trials and tribulations…

I have had the week from hell. It happens to us all at some point in our lives. A couple of days ago I honestly thought my entire life was over. Unfortunately, there are some things I can’t share with my readers but let’s just say it is a HUGE lesson learnt! Life doesn’t come with an instruction manual  (my goodness, I really wish it did!!) but some how, thanks to some amazing people, I think/hope we’re going to eventually get through this!
Of course, with all the extra stress my FND has had a field trip. My body has been on fire. One of the ‘invisible’ parts of Functional Neurological Disorder is the chronic pain. Imagine scraping a thousand burning needles across your body whilst crushing your head in a grinder and that’s not even close 😧 I know, I know someone get out the mini violins lol. On a serious note, this type of chronic pain can be so crippling. Some days it’s almost impossible to drag myself out of bed but through grit and determination I manage it. Once I’m at work, I literally don’t have the time to think about it and eventually I can almost carry on as normal. The only downside is that when I finally get home all my symptoms come crashing at me and my whole body shuts down.

I am not a religious person, however I admit when times are hard – bit of an understatement for this week – I make the age old mistake of looking for someone to blame 😳 I have to say that I really feel that it’s not down to a greater entity  (although I am not insinuating that there’s no God!!!) I believe that it all comes down to humanity. I always strive to be the best person I can be and treat people how I would like to be treated. This week, I have been shown acts of kindness from those around me that give me such great faith in humanity without which I wouldn’t have made it through this week.

When you hit the hard times, I ask you to stop and look around you. If you have people around you who are willing to stand by your side, then you are richer than you could ever imagine. 

Here’s to a good night’s sleep and a fresh tomorrow. Thanks for taking the time to read my story. 

Charlotte xxx 

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Step by step…


Life is such a funny, exciting and sometimes terrible thing. No one knows what each day can hold. You don’t know what is in store for you. Of course, we make plans, have routines and go to work but we still can’t be sure what will happen to us throughout any normal day.

When I first started to fall ill, I was happy, I was in a ‘good place’. I had just started a new teaching role at a new school. The boys were thriving and Mr Right was, well, just right 😆 As I have explained before FND can hit anyone at anytime. There’s not a great deal understood about the initial cause of FND. Perhaps my brain felt ‘settled’ and ready to deal with past trauma and that’s why it hit me when it did.

I’m not resentful or angry. However,  I am a little bit sad. I guess you could say that I am grieving. Grieving for the life I had. I have been ill for nearly 4 years now and I’m learning to accept and understand FND and how my body copes with it’s symptoms. I am learning to accept that I’m not able to do all the things I could do before. Although I can accept it, it doesn’t mean I can always be positive about it.

I am a true believer that in life we make our own choices about what we want. I’m not saying that we have full control of what happens to us but more that, we make decisions that directly affect us. Some choices will benefit you and others will not. 

When you have a chronic illness like Functional Neurological Disorder you can feel like this is it and your life is over. It’s really not. Sure, everything will change, simple tasks will become gargantuan mountains to climb BUT you will still find ways. You can learn to adapt and manage and sometimes even avoid certain things if you know that they will make you feel ill.

I will always remain hopeful and I will refuse to give in. This DOESN’T make me special in any way, this makes me human!! We’re only here once and despite the pain, despite the exhaustion, I am determined to make the most of it! One little step at a time.

Thanks for taking the time to read my story. 

Charlotte xxx 

No pain, no gain!!!

I have managed to survive my second week of my new hours at work. If I’m completely honest, I’m exhausted and in terrible pain BUT I did it! 
I am managing okay and I haven’t had any fainting episodes and only a couple of seizures in the evening which adds up to a successful week. My seizures have changed their pattern as they do with FND. It was once described to me as a bopping game at an arcade. The neurologist said, “Imagine FND like a bopping game. Every time one symptom dissappears another new symptom can ‘pop’ up”. I have found this to be the case.

The other night, following a very busy day, my left eye clamped shut followed by my right eye. Imagine that your eyes are almost turning inside out while your whole face is twitching, that’s pretty much what happened. This then led to my neck and back muscles tensing up tightly and beginning to jolt violently. Eventually, all of this led to a 15 minute, violent seizure. Luckily, Mr Right was with me the whole time and stopped me injuring myself. 

If you suffer with FND it’s important to be aware of the sudden changes that can occur. Try not to lose hope. All these changes can hopefully lead to it eventually burning out (I’m always an optimist 😋).

I have another appointment at the hospital tomorrow afternoon to see the cardiologist as a follow up to last week’s Exercise Tolerance Test and to check how the new meds are working. I am quite sure they are helping as the fainting has eased (fingers crossed!!). I think I’m copying quite well. Let’s hope the doctors see it that way too.

Thanks as always for taking the time to read my story. 

Charlotte xxx

Exercise Tolerance Test

Yesterday I attended my local hospital for a further test investigating my fainting episodes. I am due to see the cardiologist again on the 17th September to follow up on all the other tests and to see how I’m getting on with the new medication. 
An exercise tolerance test involves a complex investigation of the heart and looks at how your body tolerates exercise. The test starts by walking slowly on a treadmill. Gradually the gradient and speed increases until you are running at a 45 degree angle. All of this is carried out while you are connected to an ecg and blood pressure machine. Unfortunately, I only lasted around 12 minutes instead of the 20 minutes planned. 

During the test I felt quite dizzy from the start. Once I was running at the full pace I began to feel tight chest pain and faint. Unfortunately, I ended up fainting and having a violent non epileptic seizure. I was put into recovery position and given oxygen. Then I was sent to the A&E department for 15 minute observations. Finally, after 3 hours they agreed that I was stable enough to be discharged (Thank goodness!).

Although the ordeal yesterday was very unpleasant it is in fact a good thing that the doctor and the physiologist had a chance to record all the information during my faint and seizure. The more information they can gather the better! 

It has been a very successful but exhausting first week at school. I think the fact that I was feeling so fatigued and then I had to run probably resulted in the seizure that followed the faint. So far I have managed my new teaching responsibilities without any problems. Fingers crossed with the ‘rest’ (working from home, planning and marking) days I should manage to make it through the next 6 weeks.

One thing that I noted yesterday was the impact my seizures have on a person when they see them for the first time. The physiologist who was carrying out the test said that it was quite a horrible thing to experience. This made me think about my children. It must be horrible for them to see their mum in such a state. They are so strong and so brave. Despite everything that is thrown at them they continue to show such great resilience. Proud is an understatement! 

I will try to update every few days but for now I’m looking forward to a lovely,  restful weekend! 

Thanks for taking the time to read my story. 

Charlotte xxx

Migraine awareness week. 

You are not alone. 

It’s been a busy but exciting week. I am excited to introduce my readers to FND Action. They are a non profit organisation that aims to raise awareness of Functional Neurological Disorder. I was lucky enough to be asked to share my blog on their website! Here’s a link to the website. It is fantastic and really explains the illness in detail. 

Home – Default

As a person living with a chronic illness it is always a good feeling to find others who can understand what you are going through. Even those closest to me can never truly understand what it is like. A fellow sufferer will know what a challenge each day can be. They will know the pain and the loneliness you feel even with people surrounding you. 

I really would like to help others. If it helps to speak to someone who understands how hard it can be then please feel free to ask me questions. As I said in my blog earlier this week, please never give up. Life is a challenge that can  accomplished even with the biggest hurdles. 

Thank you as always for taking the time to read my story. 

Charlotte xxx

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