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Living with Functional Neurological Disorder.

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Fighting the darkness.

It can be incredibly hard to stay positive when living with a chronic illness. Unfortunately, many sufferers develop depression and anxiety. This is understandable as dealing with constant pain and fatigue can really drag you down. 

Depression is like a dark, heavy raincloud. It follows you everywhere you go and is the last thing a person needs when already dealing with so much! So, the question is how on earth can you stay positive when living with an illness like Functional Neurological Disorder? 

I have put together a list of what I do to keep as ‘happy’ as possible. Once again, I am NOT an expert. I’m definitely NOT medically trained and by no means would I ever want to offend anyone. Each and every one of us is completely different. What works for me, may not work for another but if I can help anyone, then that’s great! So, here it goes …

1) Take each day as it comes. It’s inevitable that you will probably have more bad days then good. However, try and not to plan too far ahead. Chronic illness is so unpredictable. If you have a good day, enjoy it and savour it BUT try not to over do it!

2) Focus on the positives. Yes, I can see your metaphorical eye rolls lol. It’s true, believe it or not. When you’re lying in your bed in agony and feel like there’s no point anymore, close your eyes, take a deep breath and focus. Today is a hard and awful but there’s still hope. Do you have a roof over your head? Do you have friends, family or colleagues who care for you? Have you eaten today? If you can answer ‘yes’ to any of these questions, then you have more to be grateful for than you realise. 

3) Do one thing that you love each day. This is very tricky, especially if you are juggling illness, family and work! However, you have to remember that you matter. Please don’t take this in the wrong way, I’m not saying throw away all your responsibilities and run off in to the sun! Just try and think of simple things. Listen to your favourite song, relax and read your book or laze in front of the TV. Basically, whatever ‘floats your boat’. Even if it’s just 5 minutes. It’s so important to remember that you and your happiness matter. Give yourself some ‘me’ time and it makes a big difference! 

4) Ground yourself. This is a technique that I have been taught by both psychologists and neuro physiotherapists. I have, kind of, made my own interpretation of it that helps me fight off the dark clouds. It can become overwhelming, living in constant battle with your own body. It’s like being sucked into a black hole. When I feel this I simply take 5 deep breaths, in through your nose and out through my mouth. Then, I look at 5 different things around me. It could be the windows, the trees or even a flower. I take notice of the feeling of my feet on the ground, my bottom on the chair. I appreciate feeling alive and the simplicity of everything around me. Again, this works for me but it may just seem weird to others and that’s fine.

That’s it, my list of fighting away those nasty, black clouds. I hope some of these might help, even if just temporarily. 

Thanks for taking the time to read my story.

Charlotte xxx 

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Sick and tired. 

I feel quite lost. It’s a mixture of complete and utter exhaustion and panic. I have rested well and even had an extra ‘snow day’ thrown in for good measure. Yet, here I sit in pain and confusion. 

The tiredness I feel can’t simply be dealt with by sleep and rest. This tiredness is in a whole league of it’s own. I don’t even have the energy to brush my own hair. It’s like hanging over the edge of a huge cliff, clinging on for dear life but there’s just not enough strength to pull myself up again.

I know that I must ‘get on with it’ but I’m not sure that I can. It feels that I’m coming to a point where the fight is disappearing. I simply can’t keep going. Please don’t see this as a cry for help or attention. I just feel so invisible sometimes and alone. There’s no one I can really talk to. No one who really wants to listen. So I turn to my blog as a way of expressing these moments in a hope that by venting this feeling, I may get through the other side.

Here’s hoping for an extra charge of energy to get me through this week. Thanks for taking the time to read my story.

Charlotte xxx

Listen to your body.

Unfortunately, today I’m ‘losing the battle’. The pain and exhaustion have become too much and I’m stuck in my bed. It’s okay though, these days are just part of my self care management. 

When I was diagnosed with Functional Neurological Disorder, I felt as though I had been given a label and simply dumped. In 2013, when I was diagnosed, there was very little they could do. Thank goodness, things are FINALLY looking up! There continues to be a much greater understanding of this disorder. Nearly every month, there are huge conferences held around the world. These conferences are teaching all the medical profession about FND. There was a myth that all the symptoms are ‘in your head’. Which they now know is complete RUBBISH! The symptoms caused by this disorder are very REAL.

This greater understanding has led to better treatments and management. I am psyched to be attending the FND rehabilitation course for 5 weeks from January. The results of which look very promising. Obviously, each patient reacts differently to the treatment but I’m going to put my all in to it and hope for the best!

As I have said many times, I may have lost today’s battle but I will not lose the war! I will let my body rest today and be ready to face another week tomorrow. 

Thanks for taking the time to read my story.

Charlotte xxx

Managing work with chronic illness. 

It’s been another hard week but somehow I’ve made it to friday. I think even a ‘well’ person would have struggled with my workload this week! I honestly believe that teaching part time is like having a full time job. I spend my two days off marking, assessing and planning. Teaching full time is like having two jobs. You have the nice bit, teaching, then the paperwork. Oh my goodness, the paperwork is relentless! 

This week has had me thinking about how hard it can be to continue working when you have a chronic illness. I consider myself fortunate, I’m still working despite how much FND breaks me. I know many people with my condition have had to leave work. The thought of this scares me. I think if I didn’t work, FND would consume me and I would be even more poorly.

So, I want to put together a small list of what I do to manage my illness with working. This is, of course, personal to me and it won’t work for everyone but if it could help anyone that would be great! 

Here it goes … My FND work battle:

1) Work with your boss. I am extremely lucky to have a compassionate and understanding boss. We have spent a lot of time together, in order for her to understand my limitations. As a result, we are able to work out my timetable so it’s flexible and allows for rests in between. This makes a huge difference and I know that I can be open and honest when things aren’t working out.

2) Organisation. This is a huge part of managing my illness, home life and work together. Keeping organised elevates unwanted stress. It helps my week to run smoothly and gives me some rest breaks (even if they’re not very long). 

3) Routine. Alongside organisation, my routine is key. I have built a kind of internal body clock and this way everything runs smoothly. My routine means that everything gets done and this means I can relax during those rare breaks.

4) Support. This has been my biggest adjustment. Since falling ill with FND, I have had to accept that I just can’t do everything. Part of this acceptance has come from CBT (Cognitive Behavioral Therapy) and Fatigue Management. I realise know that if I push too much and try to do everything myself, I just end up exacerbating my symptoms. My family and friends are a vital part of me being able to work. I really couldn’t do it without their support!

I hope that this helps anyone else who is trying to work or return to work whilst living with a chronic illness. It won’t work for everyone and honestly, it’s so hard. I completely understand that many with FND don’t work and would definitely never judge that. However, for me, this is what keeps me going. I work as much as I can and as hard as I can for my two wonderful boys. Hopefully, in the near future, I will be able to increase my hours if my health improves but for now, all I can do is try my best!

Thanks for taking the time to read my story.

Charlotte xxx

Taking the highs with the lows.

The past two weeks have been full of ups and downs. I received a call last Thursday from the National neurological hospital in London. They invited me to attend the FND rehabilitation course on the 20th November. I went in to complete panic mode. I have to attend every Monday and Tuesday for five weeks in a row. So, I went about changing my days at work and arranging child care for my boys. Then, of course, the worry set in. Would I be able to manage all the travelling and work? How will my health cope? I managed to sort things only to receive a call to say that they would have to cancel and re book me in for January (the original month).

I couldn’t believe it. I had started to get quite excited about the possibilities of this rehabilitation. This could be my only chance to return to a relatively normal life. I’m not expecting miracles but any improvement would be better than none! However, as I thought about it, I decided that this circumstance is actually much better. I never like to be ‘thrown’ in to a situation and now I have plenty of time to prepare. 

I have been really poorly over the weekend but I know that it’s a result of all the panic. Despite all the illness, I have realised I am so lucky to work with such wonderful, caring people. They’re so willing to make changes to help me and that really means a lot!

My boys are both working hard at school. My eldest, who is now 15, is currently taking his Mock GCSEs. I am so proud of how he has knuckled down and is really trying his best. I really couldn’t ask for more. My younger son is also doing really well in his final year of primary school. They are both so amazingly resilient. I just hope that the stress that my illness causes doesn’t effect their chances. 

I am very busy at work, teaching 2 and a half days a week and taking the choir to rehearsals for Christmas shows. I have rested as much as possible today and hopefully that will help me make it to Friday. I have recharged my ‘spoons’ and I’m ready to take on the world (or at least a class of 5 year olds 😂)

Thanks for taking the time to read my story.

Charlotte xxx

Wave a magic wand.

There are so many things that I would like to say but so many things that I can’t. I really am trying my best. There’s nothing left to give and my tank is running on empty. I’m trying to stay positive but the pain is inexplicable and so relentless. 

I am strong, whether people believe it or not. It’s not a physical strength, it’s a mental strength, deep inside. This strength comes from those around me. My family and friends keep me strong and without them, I really don’t think I would still be standing! My children are my breath and my adrenaline. Despite the pain and exhaustion, it’s the boys that keep me going. 

I have been burning the candle at both ends and now the flames have well and truly burnt out. My readers will know that I will never simply give up. Instead, I will stop for as long as I can until I have to get back up again on Monday morning. I’m no Super Woman, I’m quite a pathetic mess right now but it doesn’t mean that I’m defeated. I will keep going and just hope that my body and brain don’t let me down. 

As silly as it sounds, I really wish that I could wave a magic wand and be well again. It’s been too long and these 4 years have been so hard. I hate feeling so self pitying and know that so many people are in a much worse place than me. I’m trying all I can to care for myself but sometimes, you just need to voice your demons. Hopefully, by releasing them, I will find a way to recharge and try again.

There will be better days, I will continue to hope that this god forsaken FND will eventually burn itself out. If not completely, enough for me to achieve what I need to for my children.

Mr Right ran the Beachy Head marathon with his brother and they managed to raise just over £300 for FND Action. He’s been so exhausted but I’m so proud and grateful for what he has done!

So, I am going to continue to care for myself and heal my mind by gaining a better understanding of the damage of PTSD. I am meeting with a neuro psychologist at the end of November and hope to make some improvements on my symptoms. Here’s hoping that my brain doesn’t let me down and I make it to the Christmas holidays! 

Thanks for taking the time to read my story.

Charlotte xxx

New horizons. 

I have made it to half term! I honestly don’t know how but I’ve done it and that’s a huge achievement. I have had an absolutely awful few weeks, even the fittest of people would have struggled. I’ve probably said this before but I would definitely give the cast of Eastenders a run for their money.

My health is not great and the only reason that I’m still standing (if a bit wonky) is that I’m learning to manage my symptoms better. I have been referred by a psychiatrist to see a psychologist in the hope of receiving the treatment known as EMDR. I was quite disappointed when I read the psychiatrist’s assessment. She claims, after just a one hour assessment, that I have a disorder in which I constantly suffer anxiety about being ill?!? Anyone who knows me would know that this is NOT me. I don’t wake up every morning, desperately searching for pain or illness. I most certainly don’t focus on being ill. If this was the case, would I still be working? Would I still be trying to live a normal life? I wake up and get on with things, I go to work and I look after my family. It’s just unfortunate that FND likes to jump in and cause me constant disruption! 

I am not a qualified psychiatrist, however, I can’t see that you can diagnose a person after a short assessment. I start to feel that in all honesty, this is now up to me. I have to essentially, fix myself. I need to find a way of closing off the trauma in my mind and winning the battle against FND.

It shocks me that in this day and age, so many people whose lives have been turned upside down are left with no help or pointless help. The doctors, consultants, neurologists, psychiatrists are as clueless as we are. At the end of the day, it’s my brain and it’s my body. I don’t want to be in pain any more. I don’t want to experience paralysis or seizures, so some how I need to fix this. How do I plan to do this? I’m not sure but I will find a way!

Over the next few months, we are going to be making some huge and exciting changes to our lives. It’s going to be hard but I really hope that it’s going to be worth it. I don’t want much in this life. All I want is for my little family to be happy and healthy. My children deserve the world and I will always strive to find a way to give it to them.

My wonderful Mr Right is running the Beachy Head marathon next Saturday in aid of FND Action. I am so unbelievably proud of him and grateful to have such a wonderful man by my side. 

Thanks for taking the time to read my story.

Charlotte xxx

Stuck between a rock and a hard place …

I’ve made it through another week. It’s been hard and my body has been in complete defiance but I made it and that’s what matters!

I had my initial consultation with the psychiatrist on Tuesday. It was quite a lengthy process, we spent well over an hour going through my history both pre FND and post. She made several diagnosis but explained that her role is mainly medication based and that she generally manages patients through anti depressants. Despite all that I deal with, I’m not what would be considered depressed or anxious. However, she believes that I may benefit from seeing a psychologist with treatment such as EMDR.

As I continue to attempt to educate myself in the understanding of what is actually happening with my body, I’m starting to see why my body has taken the score. I am beginning to see that when something traumatic happens to a person, if they have to internalise the feelings, those feelings don’t just ‘disappear’. My brain has them stored there, waiting to come to the surface. You can’t ‘trick’ yourself and carry on. It becomes inevitable that there will be a time when your brain wants to express those deep, dark emotions. 

Unfortunately, my symptoms have been worse lately. I know why. I am really pushing myself to the limit. It’s not ideal but it’s just how it is. I love my job, however, it’s not a vocation that ever really allows you to pace yourself! This week, I have had two episodes of complete body paralysis. The first time it occurred was on Sunday night. I was watching one of our box sets with my eldest son and cuddling Mr Right. As I went to sit up, I realised that I couldn’t move. I won’t lie, it was terrifying. What made it so much worse was seeing the fear in my son’s eyes. I can always reassure him that it will pass but what if one day it doesn’t? He shouldn’t have to be dealing with this. His exams happen this year and I would be devastated if I affect his chances. Each time this paralysis is happening, the length of time and the severity increases. I guess you could say that I’m stuck between a rock and a hard place. I’m too ill to work but I’m not considered ill enough to not!

It’s only 2 weeks till half term, I’m praying that I make it there. I wish there was a magic wand that I could wave to go back to before. This, however, is my ‘now’ and I just have to keep trying. I have too many reasons not to!

Thanks for taking the time to read my story.

Charlotte xxx

Please note that this image is not mine:http://www.makeroomformommy.com/rock-and-a-hard-place/

Finding the positive.

It can feel almost impossible sometimes to look for the positives in life. There can be constant hardship thrown your way and you can start to feel lost. Life doesn’t come with a handbook but if it did, we would probably miss out on the ‘good’ bits!

It’s been one hell of a hard week and if I’m honest, it’s been a struggle! I’m finally sitting down and having a rest. Those of you who live with chronic illness would have heard of the spoon theory. 

https://www.google.co.uk/url?sa=t&source=web&rct=j&url=https://amp.theguardian.com/commentisfree/2012/sep/24/spoon-theory-chronic-pain-fatigue&ved=0ahUKEwiRjaXzwLvWAhVQZFAKHWt7B7cQFghwMAc&usg=AFQjCNHRx46tg6O-zHDkol7Lqi83kPNNbQ&cf=1
The article above gives an explanation. I have most definitely run out of spoons this week and I’m now paying the price. However, if I consider how ill I am and look at everything I have achieved, I can smile (when my facial muscles stop twitching 😂) I can feel proud of myself for actually being able to go to work. I can feel proud for trying my best to be a good mum to my wonderful boys. Despite the absolute exhaustion, I have still helped them both with homework and kept them safe and fed. I have managed all of it and I can now take some time to stop and recharge my spoons!

I am forever grateful for the strength I manage to find when everything becomes so hard. My children give me this strength as do my family and friends and not forgetting Mr Right. 

So I guess what I’m trying to say is; when it seems like the world is on your shoulders and things are never going to get better, stop. Stop and breathe. Look around you and see what you have and who is there by your side. I hope, like me, that you’re be able to see those little positives and will start to realise that some how and some way, everything is going to be okay.

Thank you for taking the time to read my story.

Charlotte xxx

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