Surprising Update: Are You A Daffodil or A Dandelion?

Do you remember the blog I wrote a few weeks back called, ‘Are You A Daffodil or A Dandelion?’ I mentioned that although people swoon over the popular flowers, they can be delicate, unlike the sturdy dandelion that seems to survive everything.

Well I can’t believe it, for the first time ever, we have had a sudden frost and lots of the summer plants have wilted 😦

I was in the garden looking at the hydrangea plant and I thought it was burnt, all the little buds had gone. I felt pretty upset as I love all the huge pomp-pomp like flowers that it has. There definitely won’t be any this year.

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The frost-bitten hydrangea

I went to the blossom tree at the front of the garden and that was the same. The leaves were ok, but the blossom was brown, and it looked as though tiny little bats were hanging from it instead of the pretty pink blossom that was supposed to be there.

But all the dandelions and the forget-me-nots? Well of course they were fine. Once again it proves that these plants are the survivor’s. As the other plants have wilted and died around them in an overnight frost, they have continued to thrive. Nothing seems to stop them. I knew there was a reason why I have always liked wildflowers, they have their own beauty and they’re tough.

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When you’re having a bad day, or people’s words are getting you down, think about how you’d like to be. Do you want to be like the wildflower or the spring flower? Will you be strong or fragile?

I know you will be the person who will get through everything because you are strong. Because those worse days you’ve had? You’ve survived them.

You’re doing great.

 

Thanks for reading,

Becky 🙂

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How Important is Music?

I believe that music is an important part of everyone’s life.

I sometimes wonder how many of us really acknowledge how important music is to us.

When you think about it, everyone likes some form of music. It doesn’t matter who you are or what mood you’re in, there is always a song for you.

Whoever you meet there is always a genre of music that they adore and I always love finding out what type of music they enjoy listening to.

Whatever music you like I am confident there have been times where you have heard your favourite song and turned it up, and found yourself feeling instantly happier, or stumbled across an old song and been hit with a rush of nostalgia.

I love all the varying feelings that music can instigate.

Do many of us really appreciate the amazing ability that music has?

Music is a part of our daily life and I wonder how many people realise its power and importance? One song can have the ability to reach millions of people and music can change and lift people’s spirits and alter their lives. I have witnessed older members of the community overcome loneliness purely through music groups, and I have seen people of all ages and backgrounds come together due to having the same enthusiasm over a band. Music can benefit and unite so many people.

It’s such a wonderful feeling when you hear a song with perhaps an incredible melody, moving harmonies, or lyrics that seem to personally speak to you.

Many of us will have a favourite song that we will never tire of, that either connects to us emotionally or lifts our spirits. Mine is, Don’t Stop Me Now by Queen. Its one of those songs that makes me happier, I’ve listened to it countless times and I still love it. A few years ago I was shopping, and they were playing that very song, I was miming away to the song and looked up to see everyone else, all age ranges doing exactly the same. (I knew that song was good.) I have never witnessed anything like this before or since. I guess it goes to show that songs don’t have to be brand new to connect audiences, it doesn’t matter when they were written, some will have the ability to connect with a wide range of people.

How has music helped me?

I am constantly drawn to music and when I need a bit of escapism, music is the perfect solution. I am confident that many other people will be the same. I am the type of person who will listen to every genre of music and finds it hard to choose a favourite style or artist, I like nearly everything.

I think with having epilepsy, I will do anything that can help keep stress and anxiety reduced, and for me music is ideal.

When I was a teenager, I also studied music. Being recently diagnosed with epilepsy, this was something good to focus on and I ended up learning to play four instruments. This sounds impressive but they are all woodwind instruments which are very similar to each other, they are; clarinet, saxophone, flute and oboe.

I would always recommend someone to learn music as I have enjoyed it so much. Perhaps if you have a child with epilepsy and want them to have a hobby, I would suggest music lessons as not only does it help develop abilities in maths and social skills, but it also builds on confidence skills in a non-strenuous or competitive way. I enjoyed music so much that it is still a great part of my life today.

Would you consider music to be an important part of your life?

Thanks for reading!

Becky 🙂

 

 

 

Benefits of a Seizure Diary

Years ago, I was advised to record any auras or seizures that I was experiencing. In all honesty I thought it wouldn’t be that beneficial, as my healthcare advisers had only advised me to record seizure activity. So being the organised teenager I was, I just wrote them down on the family calendar… which wasn’t that helpful. Plus I forgot to record most of them.

One Christmas I was given a small diary/calendar and initially I didn’t think I would use it until I decided that it could be beneficial as a seizure diary.  I always kept it near-by and I would make a record if I had an aura or seizure. Not only that, but I would also note how I had been feeling around that time, and would mention if I had exams etc. or if I had been particularly stressed or anxious about anything.

I was surprised by how well it worked. I was able to look over the weeks and months to see exactly what triggered my auras. The majority of the time, it was a combination of stress and fatigue. It was a relief to look back at the diary and realise that an aura didn’t always appear out of nowhere, it mainly happened due to other events in life. After that I made sure that I took better care of my health to deter auras and seizures.

I now have a collection of tiny diaries where I can glance over the years and see exactly how I had been feeling.

I would definitely recommend anyone with epilepsy to have their very own seizure diary as it could help identify their seizure triggers.

I only wish that I had started keeping a seizure diary sooner.

Thanks for reading!

Becky 🙂

Epilepsy Treatments

When it comes to treating #epilepsy there are various treatments available…

When it comes to treating epilepsy there are various treatments available.

When a person is first diagnosed with epilepsy, they are usually given medications called anti-epileptic drugs or (AEDs), these aim to reduce seizures.

Many AEDs can have side effects and sadly not every medication will be an instant success.

For many, it’s a case of trial and error. It can be normal for people to try several medications before they find one that works for them, and for lots of people, they can even take several  different medications at the same time.

Your body can also take a little while to adjust to these new medications. Strong side effects may be temporary, so if you’re trying new medicine and your neurologist wants  you to continue with it a little longer, don’t be upset as the side effects may soon subside.

If you have tried loads of medications and haven’t come across one that has helped yet, don’t lose hope. There is always the possibility that one in the future will work perfectly for you.

Tips:

  • Try to take your medication at regular intervals, E.G. If you take them twice a day, try spacing them 12hrs apart, and use an alarm to remind you. Originally I would take my medication whenever I remembered, and it wasn’t a successful tactic.
  • Withdrawing from medication – If you decide that you no longer want to take your medication, always consult your doctor and you will be slowly taken off  your tablets. If you suddenly stop taking your medication, you could become very unwell.
  • If you decide to take a new herbal remedy consider consulting with a healthcare professional or pharmacist. Many remedies can interact with medications and epilepsy. For example, St. John’s Wort is not recommended for people with epilepsy as it interacts with medications.

Anti-epileptic drugs are normally the first form of treatment for epilepsy, but they are not the only form of treatment for epilepsy. If you find that your seizures are difficult to manage, there are other treatments such as:

Ketogenic Diet –  Which is a high fat low carbohydrate diet, to help control epilepsy. This diet is mainly used for children, but some adults may benefit from it. If you are considering the ketogenic diet it’s recommended that you to speak to your doctor and dietician for advice and supervision.

Surgeries:

VNS – Vagus Nerve Stimulation is an implanted device which is similar to a pacemaker; it sends electrical impulses to the vagus nerve (the nerve between the neck at the brain) at regular intervals. The number of impulses can be increased by sweeping a magnet across the VNS generator, preventing or stopping a seizure. Want to know more? Learn more here

DBS – Deep Brain Stimulation, is an implanted medical device that sends electrical impulses to the brain. This is a fairly new epilepsy treatment, it was originally used for conditions such as Parkinson’s Disease. It aims to reduce excess electrical activity in the brain and It may be offered to people who cannot have brain surgery. Its effectiveness for epilepsy is still being researched. You and read more about DBS, here.

Brain Surgery involves being referred to a specialist brain surgery clinic. The overall aim of brain surgery is naturally to reduce to stop seizures but to also consider the patients quality of life. Brian surgery, is frequently carried out to people who have head traumas or tumours is which affected or caused their epilepsy, but brain surgery can be offered to many people, and is becoming increasing popular in helping control people’s seizures. If you want to know more about brain surgery, you can learn more here.

These are the main types of treatments that a neurologist might suggest to help control someones epilepsy.

In the UK, 7 in 10 could be seizure free with the right treatment, 5 in 10 currently are.

Hope it’s been helpful! If you have any questions or comments feel free to let me know!

Thanks for reading!

Becky 🙂

Auras: Do They Help or Hinder?

Auras: Do They Help or Hinder? How do auras affect your epilepsy?

When someone has epilepsy, they can also have auras.

What’s an Aura?

An aura is basically a warning that a seizure is about to happen. They can be different for everyone, meaning that the symptoms, the intensity and amount of auras can be different for each person, plus not everyone with epilepsy will suffer with auras.

What are Auras Like?

Here are some examples of what auras can be like. They can have varying symptoms. Some people might have just one symptom or a combination of symptoms:

  • Tingling or numbness
  • Feeling of déjà vu
  • Having a strange taste in their mouth
  • Hearing a strange sound or ringing
  • Smelling an odd smell (normally bad)
  • A tight feeling in the stomach or throat
  • Seeing flashing lights or colours

(You can look here for a more complex list of aura symptoms if you wish)

During my time with epilepsy auras have hindered my life more than seizures. When my epilepsy was uncontrolled I would perhaps have 2 tonic-clonic seizures per year at the most. This surprised many people, even my doctors. But I could suffer with auras daily, and as they are warnings for ‘seizures yet to come’, I was constantly worried.

I don’t know how common this is, but I have always had a rough pattern to my auras, the symptoms would initially begin light and build to a terrifying experience. The benefit of this? Observers know whats coming, next.

A description of a strong Aura I have experienced:

  • Starts with a sinking feeling, and then my stomach churns.
  • Déjà vu kicks in and I start staring at a point in the room considering the notion of familiarity during that moment in time, I also have a sense of panic as I don’t like what’s happening.
  • Next, although I don’t hallucinate or physically see anything, I feel as though a dream is replaying in my head really fast (this is something I hate), combined with that feeling of déjà vu.
  • Then, I feel as though I am just watching myself on automatic as I see myself go from one room to the next and I don’t feel as though I’m consciously doing it.
  • I’m usually very sick, so I watch myself run to the bathroom.
  • Witnesses have been afraid that I am no longer myself but I’ve always been fully aware of my surroundings, I’ve been afraid as I know what’s to come. It’s like falling down the rabbit hole (like my reference?*) knowing you can’t return after a certain point.
  • I try to resist the auras and communicate with others about what’s happening. But at this point the aura has become too intense and my speech and communication has begun to suffer, its infuriating as inside the information is clear and no matter what you try to do no one understands you.

 

It would be rare for auras to get that intense, and I would start to panic if  I’d begin feeling sick with them.

I found that looking after myself e.g. getting rest or removing myself from worry was all that I needed to stop the auras.

I once had a job which was extremely stressful. On a few occasions I was aware of my auras building, as I couldn’t remove the stress in work the auras continued to build. On one occasion, some visitors came into my office to find me clutching my bin on my lap as I felt so nauseous and disorientated. I instantly threw the bin on the floor when they entered, but that’s when I realised that my job was affecting my epilepsy too much, it was taking me to the most dangerous part of my auras. I had prioritised my job over my health because that’s what the company wanted me to do. The moment I left, my health  instantly improved.

Auras are a mixed blessing when it comes to epilepsy.  I personally feel they have been the hardest part for me to deal with. I have been known to have a bad aura in the morning and cancel a whole day of plans out of fear of what might happen.  But at the end of the day, although they have been traumatic to experience, whoever knows me can see that a seizure might happen and can look after me purely due to auras.

How do auras affect your epilepsy?  Do they help or hinder?

Feel free to leave a comment!

Thanks for reading!

Becky 🙂

* It’s suggested that Lewis Carroll author of Alice in Wonderland, had epilepsy considering the detailing in the book it is similar to what someone might experience during an aura etc.

 

My Battle with Epilepsy, Searching For a Cause

My Battle with Epilepsy, searching for a cause: many of after we are diagnosed with epilepsy search of a reason as to how it’s entered our life. Here’s my story.

Many of us after we are diagnosed with epilepsy search of a reason as to how it’s entered our life. Here’s my story:

After being diagnosed with epilepsy it wasn’t long until I (and my family) began looking over my past trying to get a possible idea as to why this thing might have appeared so abruptly in my life.

I couldn’t understand how I had been perfectly healthy for so many years and then, one day, I had epilepsy. I felt that there had to be a reason.

I thought that even though I had been given the common ‘unknown cause’ to my diagnosis, at the time I thought that if I could pinpoint where it may have come from, I could work out how to get rid of it.

There was one notion in particular that played on my mind for quite a while and which I thought had caused my epilepsy. When you initially consider a theory like this your are filled with guilt for potentially giving yourself a lifelong condition.

When I was a child I was a tomboy and I loved climbing trees etc. and basically I was accident prone.

I cut my eyebrow open when I was 5, after I ran into a swinging-swing in the park.

I also split the top of my forehead open when I was 8 after sitting on top of some railings and swinging down and hitting my head on the bottom one.

So now I’m left with two scars on my forehead which I usually hide with a fringe.

I went to hospital after both these accidents, but it was only as a teenager that I realised, that the swing incident had briefly knocked me out. One moment I was seeing a swing fly towards me, and the next my friends mum was carrying me home.

Naturally I battled with the idea that this and the other knock to my head may have caused my epilepsy for a long time believing that it had definitely caused my epilepsy. But other relatives were also coming up with their own suggestions, from TB jabs to what I had eaten an hour before being admitted to hospital. I obviously dismissed these, and I know my family were coming from a good place but as you can imagine, sometimes this irritated me or even embarrassed me.

I have a particular memory of being in hospital and a doctor chatting to me and looking at my notes; he looked confused as he said to me:

‘It says on here you, ate some…cheese?’ I then had to explain to him that it must have been my dad’s crazy suggestion as he’s allergic to penicillin. He replied with, ‘I see’ and frantically scribbled it out.

For a very long time I truly believed that I had brought my epilepsy on myself even though the doctors could find no cause, and every test and brain scan has comeback clear – thankfully.

6/10 people living with epilepsy will never know what causes it for them, and I believe that is human to try to find a reason or cause when something alters in our health or life.

After I accepted my epilepsy I also accepted the fact that my epilepsy has no cause. When I consider the evidence, a 9 year delay for epilepsy from concussion is a bit unheard of. I think if my epilepsy was caused by my minor head injuries it would have entered my life much sooner.

The most important thing I’ve accepted is that even if I knew my epilepsy was caused by a particular thing from my past it doesn’t matter as it’s now in the past, the most important thing is the present and future, making sure that I don’t worry about things that I cannot change, and looking after my health.

Thanks for reading,

Becky 🙂

Medication and Body Image

How medication altered my view on body image.

If you have epilepsy you will be on medication, and we all know that medications come with side effects.

I have tried quite a few different medications over the years to try to help control my epilepsy, and many of them had side effects such as nausea, headaches, mood changes. Etc. but not many people tell you that they can also cause you to gain weight.

When I began taking anti-epileptic drugs I was 14yrs old. I was tall and slight in my build. The moment I began taking the medication, my weight increased and my face plumped out, and when your 14yrs old this is the last thing that you want to happen to you.  I couldn’t do anything to slim down and it wasn’t for what I was eating. I found myself skipping meals to try to help lose weight, which obviously didn’t work. As a teenager I didn’t realised to danger I was potentially putting myself at, as skipping meals could have triggered seizures.

Even though medications altered for a few years, my weight either stayed the same or it increased. I never returned to my original size I was before.

I used to hate being around my friends sometimes, especially during summer or if we went swimming, as they seemed so perfect and slim. I realised how self-conscious I was becoming.

When I was 20 I was offered to change medications. This one did have a warning of weight loss. Thankfully it has worked for my epilepsy, and it certainly worked for the weight loss as well.

Within 3 months of using the medication I had dropped from a (UK) dress size 16 to a size 6 (btw I’m 5’10 tall).

Before I took this medication, I assumed everyone would be praising me for looking better like you always see with other people who have lost weight. But they didn’t. Everyone thought I was ill. Some people approached me and bluntly asked me if I was unwell.

My family were beside themselves and my Dad was constantly trying to give me fried foods.

I thought that I would be viewed differently be people. I thought men would find me more attractive and that I would be more socially accepted by friends and other people. It’s not the case at all. Apart from the people who thought I was dying, every other social encounter remained the same, and I never had a new meeting with anyone which was different from before. People accepted me the same, because I was the same person.

I think we have been far too conditioned by media to believe that looking a certain way is attractive. With attraction, the same amount of men noticed me, whether I was slim or not. When I actually consider the men I like. It’s not the type; it’s the personality that’s the most important. If I think about my perfect guy, I don’t instantly think about a man in a magazine, and that was something I didn’t appreciate when I was 20. I guess I thought that all men wanted women who looked a certain way. But it’s not true.

If you were in the consultant’s room with me when I decided to choose my current medication then, yes, you would know that the weight loss played a part in my decision-making. Since taking this medication it has been a tough road, where I have had terrible nausea, been unable to eat and worried many people, but I am pleased to say those side effects have passed and that my weight has now plateaued to a healthy size 10.

This is just one area of which medication can have an effect on your life and I would like to explore others in the future. But as I grew up with epilepsy as teenager to a young adult I consider body image to be high on the agenda for many people.

My body image had certainly affected me, but on reflection, the people in my life have always supported me and only had my best interests at heart, what I look like has never mattered to them, and that’s true for everyone we care about. We just love them and want them to be OK.

Thanks for reading!

Becky 🙂