Search

fndandmecom

Living with Functional Neurological Disorder.

Month

May 2016

Light at the end of the tunnel.

image

I’ve been lost in the darkness of pain, drained of all my energy and heading towards despair. I thought the pain would never go and I began the dangerous game of self pity … I began to question, why me? What have I done to deserve all this pain? Then reality struck.

I began to realise that despite all the pain and exhaustion, I am blessed. I am surrounded by the most amazing family and friends. My Uncle and Auntie were there from the beginning. They stayed with me. They nursed me. They cared for me. Then my children and my Mr Right. I began to understand that I am so extremely lucky. Imagine having to go through all this and having to be alone. No one to nurse or care for me.

I’m not a religious person, although I have nothing against those with faith. Suppose that there is a higher being. Maybe each and every person is chosen for a purpose. Maybe I am being ‘tested’. Perhaps there might be a purpose to my suffering or perhaps there isn’t. All I know is that life really is too short. One lovely friend of mine reminded me not to ‘dwell on the negative’. I may have lost a few days this week due to being ill but I need to make up for those days and live life to the fullest.

I guess what I am trying to say is, no matter how dark or despairing some days in this life may seem, there is always light at the end of the tunnel. Sometimes, it may not seem like things will ever get better but somehow, eventually, they will.

Thanks for taking the time to read my story.

Charlotte xxx

Advertisements

Chronic illness and fatigue.

image

My last two posts have been delving into the problems that arise when suffering from a chronic illness. The current definition of a chronic illness can be found on the NHS website or Wikipedia

https://en.m.wikipedia.org/wiki/Chronic_condition

As I have been suffering with FND for 3 years it is seen as chronic.

So, I have discussed isolation and guilt. Two very common issues that arise when constantly dealing with any illness. Today, I will discuss fatigue.

Imagine waking up each and every day and feeling as though you haven’t slept. Despite having at least 8 hours sleep every night, I wake each morning feeling absolutely exhausted. I know as we get older we all feel tired all the time – that’s life – but this feeling is like no other I have ever experienced. When my alarm goes off in the morning (this is very personal but important) I cry and I shake. My body burns and my head throbs. This is the reality of the fatigue chronic pain causes.

Lifestyle changes can help with fatigue so I try my best to eat healthily and exercise. However, dealing with both FND and my current heart issues make this even more difficult. I have gained weight due to my medication and find that after work, I am simply too drained to do anything. Unfortunately, there is no magical cure for fatigue and it is just one of the many difficulties one has to deal with. There are currently many studies into the affects on quality of life for chronic illness patients suffering fatigue. In the past it hasn’t been favoured due to a lack of knowledge. Gradually more studies are arising so hopefully there will be more help for sufferers in the future. This studybin particular highlights how it can effect quality of life;

http://www.ncbi.nlm.nih.gov/pubmed/10887052

I hope that my blogs are helping you to gain a better understanding. I am always happy to answer any questions about anything mentioned.

Thanks for taking the time to read my story.

Charlotte xxx

The guilt of chronic illness.

image

As well as developing understanding of FND, I am hoping to enlighten others of the hardships of living with chronic illness.
I constantly worry about my children, just as any mother does. Ultimately, we just want our children to be happy and healthy. I worry that they’re not getting the mother they deserve.

When the boys were little we were constantly out and about. We went here, there and everywhere. Since 2013 when I fell ill, things have changed. I always try my best to keep them active. We go and take part in an activity, whether that be, bowling, golf, badminton etc. However, I still feel like my illness is making them unhappy. My eldest son is very aware. He is constantly checking on me, asking if I am okay. This breaks my heart. A boy of his age shouldn’t have any worries.

Another common effect of chronic illness is guilt. It begins to consume you. I feel guilty about everything. I am constantly letting down everyone around me. I feel guilty about not being the best mother I can be. I feel guilty about not being able to work full time. I feel guilty about being a bad friend and girlfriend. However, I know that feeling this way isn’t going to solve ANYTHING!!!

There are dozens of websites that discuss chronic illness and guilt. One in particular, explains the pointlessness of feeling guilty about something you can’t control. It’s really worth a visit:
http://positivemed.com/2015/06/14/guilt-and-chronic-illness/

I believe it all boils down to acceptance. No one chooses to be ill. Family and friends understand that it’s not your fault. Even if you are free of any illness, guilt is a natural human emotion. It’s just important to not let it consume your life.

FND/FMD awareness week

image

Next week is FND awareness week, those of you who are kind enough to follow my blog will know how important it is to spread the word.

FND is a brain disorder which causes a range of awful symptoms. These include: non epileptic seizures; excruciating migraines and burning pins and needles as well as many other life changing problems.
I hope that by spreading awareness we will find new ways to improve symptoms

Thanks for reading xxx

Pinterest • The world’s catalogue of ideas

https://uk.pinterest.com/pin/473089135828124801/

One Lovely Blog Award

one loveley blogger

 

I was nominated by http://cmugrad817.wordpress.com/, her blog is fantastic and definitely worth a read. Thanks again for the nomination.

The Rules:

•Thank the person that nominated you and give a link to their blog.

•List the rules.

•Display the award on your post of the award.

•List seven facts about yourself.

•Nominate (up to) 15 bloggers for this award and comment on one of their posts to let them know you have nominated them

Seven Facts about Me….

  1. I have a degree in Primary Teaching that I finished in 2010.
  2. I currently teach in a lovely little school that is just around the corner from home.
  3. I have a brain disorder know as Functional Neurological Disorder (FND).
  4. I have two wonderful boys aged 9 and 13.
  5. I once spent a month in Japan staying with my uncle.
  6. I have family scattered pretty much all over the world, one day I plan to visit them all!
  7. I worked as a Dental Nurse before going into the teaching profession.

I Nominate….

Thanks again for the nomination!

Chronic illness and isolation

image

Living with FND has turned my life upside down. In the past I was a real ‘social butterfly’. I was always the first and last person on the dance floor. Always up for an adventure. My friends always saw me as fun and free spirited. Then came the illness.

I have come to recognise that with chronic illness there is one prominent change. That change is isolation. Those around you don’t plan to do this but unfortunately it really is inevitable.

It all starts with lack of invitations. At first, many friends/family/work colleagues would continue to invite me to different events. As I continued to turn these down in the first year of my illness as I was so poorly, the invites began to lessen. Perhaps they felt I was being rude? Or lazy? However, the truth is I really, really wanted to go to all of them but I was just too ill. If I’m honest, I wouldn’t want to invite someone like me to a ‘special’ event. Knowing that at any moment I could fit or even faint would put even the kindest person off! I first started to feel the rejection when a colleague who I felt very fond towards got married last summer and she invited all our mutual colleagues apart from me. I was extremely hurt but I tried to put myself in her position, tried to understand.

I have become more aware of this isolation. I know how blessed I am to have my children, my fantastic boyfriend, my best friend and my close family. Having a chronic illness really makes you realise those who care. They are the people who are always there despite how much you change. I think they realise that I have no control over it. I miss the ‘old me’ and I’m sure they do too! However, they stick by me through thick and thin and help me to remember the good old days.

Earlier today I came across this website that explains the heartache of chronic illness and isolation.

The Isolating Loneliness of Chronic Pain & Invisible Illness

The truth is it’s no one’s fault. My colleagues and friends who have stopped involving me in different things are not nasty or rude. They are human. They don’t have to understand what it’s like living with FND or any other chronic illness. I know this and although it can be hard, I will always try to understand. I hope that the lack of invitations isn’t because of an actual dislike but more because of a lack of understanding.

If you have a close friend or family member who has any type of chronic illness, please don’t stop involving them in everything. Don’t give up on them like so many have given up on me. One day, on one of those rare ‘good days’ they might be able to come along and it will do them a world of good. Feeling isolated can make life so much harder for someone who is already suffering enough!

Thank you for taking the time to read my story.

Charlotte xxx

Create a free website or blog at WordPress.com.

Up ↑