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fndandmecom

Living with Functional Neurological Disorder.

Month

November 2016

In the blink of an eye …

There’s so much that happens in a week yet it passes us by in the blink of an eye! Unfortunately , I am continuing to deteriorate which saddens me to the core. 
I’m not the person who I wanted to be. None of this was in my plan. After the awful events in my past, I wanted to become a better person, a stronger person . I worked my socks off for my boys in the hope of providing them with a better life. A better future for them and for me. I’ve been knocked back over and over again. I live in the hope that one day I will be well again but instead I am getting worse.

However, I know why this is happening and I can’t continue to ignore it. Eventually, my body will just stop and then I’m no good to anyone. My natural instinct is to keep fighting, keep pushing and not give in but Functional Neurological Disorder doesn’t like to play that game. Like any other chronic illness it causes you to have huge limitations. You can’t ignore these because your body just can’t take it.

I love my job, I think you have to as it’s more of a lifestyle than just a career. The children are delightful (even the not so well behaved ones) I couldn’t imagine another vocation that inspires so much. At the same time I struggle to find another job that demands so much from a person. 

The trouble and the truth of it all is that I am  just a human being. I have no super powers. I am just little old me, nothing special but I feel that I need to be so much more to so many different people. It makes me feel suffocated. This feeling of needing to make everyone happy. Having a chronic illness can make you feel constantly indebted to those that help you. You want to show your appreciation and to keep everyone happy. It’s a feeling of having to be thankful for people giving up any time for you because at the end of it all you’re just a burden in their eyes. This I believe can be a huge factor in the cause of anxiety and depression in chronic illness sufferers. You can start to feel that you want to just disappear.

I know that I can’t disappear, my boys need me. The difference with the boys is that they don’t pressure me, they don’t suffocate me. They just love me and that’s exactly what I need. It’s as simple as that. They don’t need me to make grand gestures, they know when I’m exhausted and they choose to understand. It just amazes me how totally amazing they are. They’re so young yet they understand better than anyone else. I can’t describe in words what they mean to me. God knows if I was going through this and I didn’t have them to drive me and motivate me, I would have given up at the start!

If you have a family member or friend going through any type of chronic illness, please try not to pressure them. Please help them but tell them they don’t need to be indebted to you in anyway. If they tell you that they’re having a day when they’re poorly, offer help but then leave them to rest. They simply don’t have the energy to talk for ages about silly little things. At the same time they appreciate your call/visit and don’t want to seem ungrateful! Just try to put the shoe on the other foot. They are ill, please let them rest.

I hope that this blog entry doesn’t seem too negative. As always, I try my best to give an honest reflection of life with FND.

Thanks for taking the time to read my story. 

Charlotte xxx  

Turn down the lights.

Thank goodness it’s Friday! It’s been yet another crazy, busy week. I was very spoilt yesterday for my birthday and had a lovely day. Unfortunately, FND didn’t fancy a day off and I ended up extremely poorly through the night. Despite this, I managed to make it through my work day with the help of lots of pain killers!

As I have mentioned before FND acts like one of the bopper games at a show. One day you can experience one symptom, the next day a whole new symptom can just pop up 😕 

Last night I experienced a very scary new symptom. My head had been feeling like my brain was swelling up all day. My lower back at the base of my spine had been feeling tingly and quite numb. Out of nowhere, I suddenly lost the use of my legs. It felt as though my brain wasn’t communicating with my legs and I was unable to move them at all. I was petrified and got myself into quite a state. This horrible sensation lasted for only 10 minutes or so but I am praying that it doesn’t happen again anytime soon!

If I’m honest, I was quite frightened to go to sleep last night, I was worried that when I woke up I might not be able to move my legs again. Thankfully I was okay this morning. However, I’m still feeling the strange sensation at the bottom of my back. If this symptom reoccurs I will go to see my GP or contact my neurologist!

Please don’t take this post as a cry for help. I am trying to show people how changeable FND can be. Whilst I am struggling health wise I want to try and record all these new symptoms in the hope of noticing any patterns. I must try to stay positive and I know that I have a lot to be thankful for!

I must take my time this weekend to rest and recuperate. I have been on full attack all week and have been ignoring my signals. I know that I’m way overdoing it and that’s why I am suffering so much. It’s now time for a bit of recovery. I have to be a bit selfish and focus on some healing so that my lovely boys can have their mum back!

Thanks for taking the time to read my story . 

Charlotte xxx 

Riding waves…


I have been experiencing a rather awful new symptom this weekend. I considered posting a video to show my readers what it looked like but decided against it for now as it’s very personal and quite distressing.

I have always suffered from facial twitching and temporary paralysis since being diagnosed with FND. Unfortunately, this weekend, this has developed further. Last night, my right eye and face began to droop and spasm uncontrollably. This is a symptom that I’m used to and after taking my evening medication it eventually settled. About an hour later, my left side of my face and eye repeated the same thing. If I’m honest, I did start to feel quite concerned as both sides don’t tend to do this on the same day. Luckily, after 10 minutes or so the spasms settled again. Normally all of this is an indication that a seizure is brewing so I just rested.

After an hour or so, I began to feel a sharp pain in my eyes and then suddenly both my eyes clamped shut and wouldn’t open. This was extremely painful and it felt like my eyes were being crushed inwards. Mr Right tried to massage around my eyes and forehead but said it was so tense that it felt like rock. Eventually, this tight crushing feeling tightened my whole face. Then after about 30 minutes of Mr Right massaging the tightness eased. However, I still couldn’t open my eyes. As you can imagine, by this point I did start to panic. I tried to stay calm and relaxed but I just couldn’t get my eyes to open. Finally, after nearly an hour, I tried to stand up and a few minutes later they began to open up again (thank goodness!!).

It was a really horrible experience last night and I don’t think I could have done it on my own. Unfortunately, this is the cold, harsh reality of living with a chronic illness like Functional Neurological Disorder. I never know what to expect. My symptoms can change from day to day but I must try not to live in fear. If I allow the fear to consume me, I will begin to lose. Honestly, I know why this is all happening and I am trying to do something about it!

I wouldn’t wish this on my worst enemy but it’s the card I have been dealt. I will not allow anxiety to creep in and I will try to stay positive and listen to my body.

Thanks as always for taking the time to read my story. Just by reading my blog, you help me to raise an understanding of FND.

Charlotte xxx 

Dust yourself off and try again!

I often wonder how my life would be if I didn’t have FND. I worked so hard to get my degree, I wanted to be a teacher . I really wanted to make a difference. If I’m completely honest , there was many a day when I thought it wouldn’t happen. I was on my own with two children, the youngest was a baby. However, by some amazing miracle and a LOT of hard work, I achieved my dream. It was a real struggle but it was worth every second. I can’t help but wonder why? Why after all of that did it have to be ruined by becoming ill?
I want to be happy and healthy but it just doesn’t happen. I always try not to complain about the pain and the exhaustion but lately I have been failing to do so. This isn’t fair on anyone, especially my little family! Honestly, I don’t know how Mr Right deals with me. I am completely consumed by it all and constantly complain and break down. In a sense I feel that I’m losing my way. Perhaps this is just a blip? I hope so! I know that I’m over working and as a result my health is suffering. However, I want to work and give my all. Why after all I have been through to get where I am did this have to happen?

In reality, there are no answers. This is the card I have been dealt and I have to deal with it! I must take action and pull myself together. My boys deserve better than this, although they never complain, I am aware that I’m failing. When you live with a chronic illness it is only normal to get ‘stuck’ from time to time. After all, moaning and complaining about my pain won’t make it disappear. It’s time to get proactive and do something about it! Wish me luck 🙂

I survived the ‘Tilt test’ on Tuesday although it was rather horrific! It’s all for the greater good though!

Thanks for taking the time to read my story . 

Charlotte Xxx 

FND and insomnia . 

I have had to neglect my blog this week due to having an incredibly busy work load. I am pleased with how well my body has coped considering how busy I have been! I have had quite a few seizures but these have occurred more at night in bed. My general pain has been bad but I have just soldiered on as you do.
Unfortunately, one of my main issues that I have been battling on top of everything else is insomnia 😥 the NHS describes insomnia as sleep deprivation. There is a full description in the website below.

http://www.nhs.uk/conditions/Insomnia/Pages/Introduction.aspx
When I originally started my medication for Functional Neurological Disorder it was so strong and would ‘knock me out’. I could sleep for 10 hours plus but still suffered with chronic fatigue . In the past month, I have started to have extreme trouble sleeping. I am taking at least 2 hours to get to sleep and when I finally do I am waking up constantly throughout the night and finding that I am wide awake most of the night. 

I know that it is common to have problems with your sleep due to stress and anxiety, however, despite my busy workload and my illness I have trained my mind to not allow stress in! 

I know from discussing this issue with fellow FND sufferers that unfortunately , insomnia is a very common symptom. When I lay down in bed, most nights, my body is in constant pain. I believe the correct term is neuropathy. Your body is filled with nerves, try to imagine what it would feel like if all those nerves were confused and were disturbed. I basically am fighting a constant battle to just go to sleep. 

I am going to try and keep a sleep diary over the next few weeks to take note of my sleep disturbance. I’m hoping this will be helpful for my neurologist to see. Perhaps they will suggest some ways of improving my sleep as I have tried all the conventional methods. Fingers crossed!

On Tuesday , I’m going to Hammersmith hospital in London to their Syncope clinic. I am having what’s called a Tilt test. I am pleased to say that since starting the medication given to me by my cardiologist my fainting episodes have lessened quite considerably. However, I’m still experiencing some so that is why I am having more tests. Below is a website that gives a bit of information on tilt tests. It sounds delightful 😂

https://www.imperial.nhs.uk/our-services/cardiology/syncope/patient-information
I have another busy week ahead. I know that I’m relatively lucky to still be able to work at the moment. Unfortunately, I’m not sure how much I have left to give 😟 but I won’t give up until I have to!

Thank you for taking the time to read my story. 

Charlotte xxx  

This website describes neuropathic pain and treatment :

http://www.brainandspine.org.uk/neuropathic-pain

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