The TryGuys: I’m Getting Worse (autoimmune update); We Can Relate

I was inspired by this heartfelt TryGuys video and was surprised by how much I could relate to it.

I recently came across this YouTube video by The TryGuys;

(contains some swearing – just in case you’re watching with kids)

If you’re a fan of The TryGuys you will know this video is a little different from their typical style, yet its a very sincere vlog from Zach who is updating us on his auto – immune disease, ankylosing spondylitis.

You make be thinking, ‘ an auto – immune disease and epilepsy are very different things’ but as Zach gives his brave and heart-felt talk about embracing his invisible illness, I believe we will all be able to relate and empathise with his situation, and from a personal level, it appears that we had both dealt with our diagnosis’s in exactly the same way.

Zach explains how initially he always did the right things for his condition, he was feeling better. However, life took over and he admitted he got a little lazy and the perfect health didn’t last.

“…as the weeks went by, a nagging discomfort, then a pain. I was distracted, I was upset. I was back to where I was eight months ago. I was in pain all the time, but still with all that evidence screaming in my face I was…not accepting my own reality…The truth is I started ignoring my disease the second I could. The moment my medicine started working I stopped paying attention to it, I stopped researching it, I didn’t want to know more about my AS because the more I learn the more I would have to accept it that this is now a part of me.”

Those words resonated with me because I had reacted in the same to my epilepsy.

Although I understand how complex epilepsy can be, I began to wonder how many have been in a similar situation?

Experiencing good health resulting in a laid-back attitude to your wellbeing, believing your fine, only to be bitterly upset when you become unwell again? I know I have.

And how many have had trouble accepting your diagnosis, knowing that epilepsy is now a part of your life forever? I know it can take years.

I can remember those early hospital appointments, the new meds,  I was doing all the right things and to the outside world I appeared to openly accept it.

My seizures can be affected by stress and fatigue and I ignored the warnings – for weeks. The late nights happened, I over worked myself and I would wake up in hospital, and it would happen over and over while I continued to ignore the warnings, missing medication, striving to have a ‘normal’ life but I couldn’t, I had epilepsy.

I was also afraid to even talk about epilepsy at one point, that’s how much I didn’t want to accept that it was a part of me.

Obviously we know this changed and I am incredibly glad it did.

I won’t spoil any more of Zach’s video because I think it’s really worth a watch, I hope you enjoy it as much as I did and find comfort in the fact that you’re not alone, there are people everywhere who understand your situation and what you’re going through even if their lives are slightly different, and the most important thing is that there are so many people around who are keen to help you if you are struggling or feeling lost.

I felt lost for too long after my diagnosis, and bottling things up never helps.

Don’t forget, you’re always welcome to send me a message!

Becky 🙂

(The other TryGuy video’s are great too!)

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To My Select Few; I Love You

I’m told I’m selective,

Too choosy with others

To hold close in my life,

I believe I have good reason.

Its hard to open up,

Explain your life to someone

View their silent judgements,

And watch them walk away.

They never knew,

But if I become honest,

It means I value you,

It means I trust you.

So If you stay,

Accept me, and witness my weakness,

Know it’s rare,

Know you are part of my select few,

Know that I love you.

Five Years Free

I recently realised that I’m now over five years seizure free.

Having controlled epilepsy brings conflicting emotions. The majority of the time it’s great, yet life is never perfect, because life never is. 😄

I used to look at the glistening goal of being seizure free, to me, it was the solution to a my problems but I was wrong.

  • My epilepsy hadn’t disappeared. It’s part of me, even if it’s dormant, I’ve accepted that now.
  • People still had problems – friends, colleagues, potential partners etc. Would learn that I had epilepsy and regardless of whether it was controlled or not it was an issue for them. I wasn’t expecting that. (If anyone has an issue, they are not worth your time.)
  • I felt I had more to lose – I now had a record ‘x’ amount of time and I would be doubly disappointed when it would all come crashing down. I then had a car, what if I lost that? I realised whatever happens will happen, just enjoy the good days.

These are also the reasons why I chose to write my blog.

I can remember sitting at my desk in work holding back tears after a painful experience and I thought how crazy it was. My situation shouldn’t have been a problem, then I wondered about every one else with epilepsy, how must they be feeling every day? More awareness is needed, and support is needed for those hard days.

And here we are,

This year has been great, here’s to the next!

Becky 😊

The Key to Happiness

They say:

The happiest of people don’t have the best of things, they make the best of things.

This is true.

Notice the wonderful parts of this world that amaze you.

Each morning, appreciate them, gather them up, your happiness will increase.

Soon you’ll be a truly content person who sees good in all things.

Becky

😊

Epilepsy is Like The Waves at Sea

You may want to fight epilepsy but you can’t,

like waves at sea they come when they come.

However, like the moon controls the waves,

you can control your seizures.

Target triggers, and make your health your priority,

but if a wave hits don’t blame yourself or fight,

slowly embrace it as you will soon be on the other side.

Every storm completes with calm and serenity,

you can get through today, tomorrow and each day to find your calm.

Have faith and know it’s waiting simply moments away.

Becky

😊

The Continuing Heatwave: Anxiety

I know that my last blog was: Tips for Staying Safe in Heatwaves and I follow the tips strictly, but when I wrote the blog I wasn’t expecting the heat wave to last so long, and with each passing day of this warmth, I find myself building with tension and anxiety fearing that I may become unwell if the temperature doesn’t soon begin to cool.

I don’t want to complain about the nice weather, it brings us together and people of all ages are appearing to have a wonderful time in sun.
Have you ever noticed how the heat in the UK always seems different to abroad? I have been to places like the Mediterranean and Australia and as I have exited the plane the warmth embraces you. At home it seems so much more stifling, and as a country we don’t seem to be equipped for the heat either – or any extreme weathers we are used to receiving such a mixed bag. I think this may be part of the reason why I find heatwaves here so difficult.

I have been seizure free for over five years and naturally I’d like it to remain that way. My triggers are normally from sleep deprivation and stress and the fact that I haven’t slept properly since the heat wave began is starting to make me just a little bit anxious.

I know that I am not the only person who is currently feeling this way and I know what I have to do. I have to take it easy, keep doing the good things; i.e. drink plenty, get rest whenever I can, keep as cool as possible, and hardest but most important thing, is to try to take my mind off things remind myself that everything will be fine and that this is Britain, the heat wave will be gone soon – hopefully.

My heart also goes out to everyone who has been unwell with epilepsy during this weather, I have been there, I know how horrible it is, and I think you’re doing great.

If anyone else is feeling anxious you’re welcome to send me a message,
Thanks for reading,
Becky 🙂

Tips For Staying Safe In Heatwaves

FullSizeRender(5)I can’t be the only one that has a love hate relationship when it comes to summer and hot weather.  You want to be outside enjoying yourself, but you overheat too quickly. You spend most of the day walking around like a zombie after been awake all night, and your are either coping with auras and seizures or worried that due to the heat something is bound to appear soon. Then you worry about worrying – that awful cycle.

I used to always dread summer, and it would be a time where my health would decline. Thankfully, the last few summers have been good and here are 5 tips that I follow.

I hope these help, even now I am learning more things to help me stay protected from the heat.

  1. Stay hydrated

This is a really important tip. The moment you feel thirsty grab a cold drink. Avoid teas and coffees and energy drinks as the high caffeine content may dehydrate you.

I have bought myself a glass drinking bottle, and it is always in the fridge with lovely cold water waiting for me, and if I’m going out I can take it with me.

 

  1. Apply plenty of sun cream

You may think this sounds obvious, but it’s surprising how many people don’t bother.  I will also share this tip I recently learnt. When buying sun cream check the UVA & UVB star rating as well as the SPF. As we know, UVA & UVB protection blocks the harmful rays from the sun, so if your sun creams UVA & UVB rating is low it’s not protecting you from the harmful rays. If you’re worried that good sun cream will be expensive, it won’t. I bought a SPF50 sun cream with a UVA star rating of 5 (the best) for £1.50.

Suncream
This suncream gives 5* UVA protection and medium SPF protection

It’s also useful to renew sun creams every year, to make sure they are working their best.

 

  1. Head for shade

When out and about be mindful of how long you are staying in the sun, especially during the middle of the day. Don’t push yourself if you start to feeling hot or tired and take a break and relax in the shade.

 

  1. Invest in a fan

It’s never a good thing when your sleep gets interrupted because of humid nights. It’s important that we get our rest! Fans can be an excellent solution to this problem.  Tower fans are usually good as they are not pushing hot air around, and they are not too expensive.

  1. Relax

Last but not least, relax! One of the worse things that you can do in hot weather is exhaust yourself. Its only natural that you are going to have busy schedules, and that combined with hot weather can be a dangerous mix, especially if sleep has been disturbed during the night. The most important thing you can do is recognise when you are feeling a little depleted and take a break, head for shade and have a drink.

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I hope these few tips have been helpful,

Hope you all enjoy the sun, stay safe.

Thanks for reading,

Becky 🙂