Search

fndandmecom

Living with Functional Neurological Disorder.

Month

June 2016

Things are on the up.

image

I have had another very busy week but despite that I have been ‘okay’ health wise. Living with FND leaves you in constant limbo. You never know what your day will be like. Some days, despite head aches and pins and needles, I can feel almost normal. Other days I can feel at deaths door. If I look back to last year, after a week like this one, I would have been extremely poorly. I can see an improvement in my health but I am far from being a normal, healthy 33 year old.

On top of dealing with my side effects of FND, I’m still suffering a lot from my arrhythmia. Unfortunately, I am still waiting further tests before I can be fitted with my pacemaker. These tests are not until the end of July and the beginning of August. The cardiologist wants to make sure that I don’t need to be fitted with a defibrillator.  This week I have had two episodes of excruciating chest pain and fainting. Luckily, these have happened in the afternoon and evening so they haven’t interfered with work.

I was looking forward to having a much needed rest over the summer holidays but we now have to move house. I am thankful that we have been able to find another place near work. However, I am worried that the stress of moving could put me in hospital. I know that I am not in the best of health. I have a brain disorder which causes seizures and severe migraines and arrhythmia to top it off. Although stress does not cause any of these it certainly doesn’t help!

I can’t change what’s ahead but once again, I must try my best to pace myself and not over do it. I just hope that I manage it all and my health doesn’t let me down. I will try to keep my blog up to date as it’s a good way to process and track my health.

Thank you for taking the time to read my story.

Charlotte xxx

Advertisements

Looking after the family.

image

The effects of living with someone who has a chronic illness can be life changing. You will see a complete transformation of the person you love. They can go from being a positive, laid back person to a negative, stressed out person rapidly. Your love will be tested to its limits but if you really love that person, you will stand by and support them. Despite this you have no guarantee that they will return to their old ways again.

I often wonder what makes Mr Right stay. We had only been together 3 years when I first fell ill. He had no obligation to stay. My children were not his responsibility, he could have ran and never looked back. However, he didn’t run. He didn’t turn away. He stayed. Despite all the stress and how much I have changed, he is still here. He stands by me and supports me and my children. He does all of this because he loves me. Another reason for me to be thankful!

I can honestly say that without him I’m not sure if I would have survived these last few years. Unfortunately, I can’t help but feel guilty. My illness has such a huge effect on him. I know at times he feels helpless. He wants to take away my pain and suffering but he can’t.

It is so important that those who care for sufferers of chronic illness have a support system. Whether that be someone to talk to or to help and support them too. They too feel the pain and the suffering and it’s not an easy life.

Functional Neurological Disorder has changed the lives of my little family in so many ways. One prominent change is how close we have become. We are a team, a unit that can’t be broken.

If you know someone who is caring for a loved one, please when you can, offer them support. Most of the time they will say they’re fine but just showing you care can make such a big difference.

Thanks for taking the time to read my story.

Charlotte xxx

Thank god it’s Friday!!

image

Thank goodness it’s Friday! What a week it has been. My head and chest have both been equally bad but somehow I have managed to get through another week.

I found out on Wednesday, that we are being evicted in two months as our landlord wants to sell. I couldn’t believe it. Another blow. Moving is stressful enough but I have all my final tests on my heart in August before I am fitted with my pacemaker. I know that our house is not ours but it has become our home. We have lived here for 4 years and I will truly miss it. Now that I have had time to process it all, I am trying my best to be positive. Perhaps a new home could new health?!? (I’m always the optimist).

The reason for suffering more this week is the intense humidity. Many people who suffer with neurological conditions like FND have trouble maintaining a normal body temperature. This is discussed in more detail in the website below.

http://brainandspine.org.uk/heat-sensitivity-and-hot-temperatures

I always feel more embarrassed as because of my bodies lack of ability to control my temperature I sweat really badly. I know it’s not because of my weight because I have been much bigger in the past and not sweated half as much. The intense heat and stormy weather causes a build up of pressure in my head which increases my migraines. Unfortunately, more migraines means more seizures.

I follow another blogger with FND on Facebook and it’s fantastic. She is always putting up very useful information about FND and chronic illnesses. Today she put up a post about levels of consciousness. What many people don’t know is that sufferers of Non epileptic seizures are often fully conscious during episodes but we have no control over our bodies. It’s a petrifying experience when your body shakes uncontrollably and you can hear those around you panicking. You have no ability to speak or communicate but you can feel every second of pain. Some of this is explained in the website below.

http://neurosciencenews.com/consciousness-dimensions-neuroscience-4420/

Once again, I know I sound like a broken record but I have been really quite lucky. So many friends and family have offered their help and even their homes to us this week. We are struggling financially and at the moment we don’t know how we are going to afford to move but we have to. If the worst happens I know that thanks to our loved ones we won’t end up on the streets.

I am forever grateful for those of you who take the time to read my story and help me raise awareness of FND. It’s a lonely illness and I want to help anyone who needs it.

Much love

Charlotte xxx

A holiday of reflection.

image

I have just returned from a lovely holiday with my family and my dear friend. Thanks to the emergency medication my neurologist prescribed me, I managed to enjoy it. When you are away from home, you have time to think, time to reflect.

As I sat on the beautiful beach, not by choice but because I was exhausted after the walk down there, I watched my family. I watched my boys, Mr Right and my beautiful best friend play together. I began to wonder if they would be okay if I wasn’t here. This may sound over dramatic and morbid, however, when you have as many health problems as I have at 33 you do start to wonder how much longer you will suffer. In a sad, melancholy way I smiled knowing that my boys would be great. They are surrounded by so many people who care for them and love them.

I’m not planning on going anywhere too soon but I know that if the worst was to happen, my boys will do just fine.

When you suffer from a chronic illness your life becomes limited. As I mentioned before, you have to learn to pace yourself. I have learnt to understand my body. I know the warning signs. I am pleased with how well I managed during our holiday despite my limitations. Yes, I would have loved to have the energy to play all day but in reality I am ill.

My boys are my world, I will always try my best to be the best mother I can. I hope that they will see that despite my FND, I have been fun and exciting where I can.

When I returned from holiday I had received appointments for more tests on my heart. One in July and one at the beginning of August. Unfortunately, I can’t have my pacemaker fitted until these further tests are carried out. So, I have a long wait ahead!

I return to work on Monday and it is the last half term. I was very poorly during the final week of school so I am hoping after the rest I have had that I will make it to the end. Fingers crossed!!

Thanks for taking the time to read my story.

Charlotte xxx

Create a free website or blog at WordPress.com.

Up ↑