Living With Seizures

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Hi. Ok, so you know this isn’t a usual recipe blog? I felt it was time for a honest update on me. Please don’t think this is some ego-crazed post. I just want to be honest with you all about what goes on, behind the scenes, recipes and photos.

In today’s shiny, perfect, Instagram world it’s very easy to portray yourself online, in an unreal way. That isn’t who I am. Not for a moment.

As some of you may know I have regular, disabling migraines. In addition I also have chronic  lower back and neck pain, oh and I’ve recently been diagnosed with Fibromyalgia. So yep quite a bit to deal with, until……..

Just before Easter, when I started having seizures (fits). This resulted in me spending two and a half weeks in hospital over the Easter holidays. We have three children, that is NOT where I wanted to be!!

Living With Seizures www.feastingisfun.com
Living With Seizures www.feastingisfun.com

The seizures have continued since April and I can have anywhere between 2 – 15 seizures in a day, each lasting between 10 minutes to an hour and a half. I do not have Epilepsy. Today I was diagnosed as having Disassociative Non Epileptic Seizures.

I have been Living With Seizures for the past 6 months and yet I’ve still managed to post recipes on this blog. How???

Determination. A deep sense of not allowing the seizures to rob me of my life and loves. There are certain things I cannot do, for example driving. I could let myself become despondent about not being able to drive, but I haven’t. Instead I have been more thankful than ever for online grocery shopping, in fact, online shopping for everything!

I love to bake. In spite of the physical pain I experience standing for more than a few minutes, I can’t give it up. Even though I am Living With Seizures, I still, somehow manage to create new recipes and make them and post them on this blog.

I’m pretty darn proud of that! Yes migraines may slam me for a few days, where I am unable to leave my bed, but in my first year of blogging I wrote over 100 posts! Yep I’m proud of that too.

On a practical level Living With Seizures has limited certain activities, for example I haven’t made any jam or preserves as I simply don’t know if I will be ‘fitting’ just at the point of the jam setting!! Larger cakes are baked when someone else is home so that they don’t burn away merrily in the oven whilst I am mid-fit. Recipes are broken down into small sections, weighing out, combining, baking, icing. All do-able just not necessarily in one smooth sequence. Occasionally one of our daughters will complete the ‘photo shoot’ – usually so they can then tuck into whatever I’ve baked!!

Having frequent seizures is also exhausting. So baking is carried out over the morning. If I start to edge to far into the afternoon, it becomes more challenging and sometimes impossible to complete what I’ve started. For me that is sooo frustrating. I hate leaving a job unfinished – yet sometimes that’s the only option.

Writing up posts, editing photos etc. all takes place when I am resting. I spend a significant amount of time in bed. Having ‘something meaningful’ to do gives me a sense of purpose and accomplishment. Very important for my mental well being. Anyone who lives with a chronic condition knows that keeping positive is a daily challenge.

Everyone needs a purpose for getting up (not literally on some days) in the morning, don’t they?

Living With Seizures who do you place your hope in?
Living With Seizures who do you place your hope in?

My Faith in Jesus is the Rock upon which my life is built. If I get down and I do sometimes, He lifts me up. Being given the full diagnosis today and being referred to a Neuro-Psychiatrist is scary. Very scary. I will get through it because He is holding my hand. Crumbs, most days Jesus is literally carrying me in His arms. In Him I have hope. Where, who or what do you place your hope in?

I know I have a long difficult journey ahead of me. I am determined to make it to the finish line. I will not be like this forever.

I have found that when I open myself up, here, on the internet, I connect with people’s hearts. As I have said in The Pain Payoff,   pain is not comparable between people. In fact John Green put it so beautifully in his book A Fault In Our Stars – “Pain deserves to be felt.”

That doesn’t mean I think it is healthy to wallow for days on end, when dealing with a disabling medical condition, rather, that denying ourselves the time to come to terms with what you are faced with, is, detrimental to our wellbeing.

My hope is that each post I publish connects with you. Whether through your heart and emotions, your rumbling tummy with one of my recipes, or both. I appreciate each and everyone of you who stop to read my little corner of the blogosphere. Your comments encourage me to keep going.

I want to encourage you, in whatever you are dealing with right now or facing in the future. Lean on Jesus, your Friend and Saviour. He loves you more than you could ever, ever know. From personal experience I know that any battle fought is easier with Him by your side.

You may find this helpful

Important Stuff

Are you struggling at the moment?

I will happily answer any questions to the best of my ability.

Sammie x

All photographs from Pinterest.

 

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The Pain Pay Off

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Hello, lovely people, thank you for stopping by to read my blog. I have a question for all of you who suffer with chronic pain, migraines, fibromyalgia, seizures etc. Do you experience The Pain Pay Off? What I mean by this is, whilst most of you will be in pain pretty much all of the time, if you’re feeling a bit better and you attempt to do something, do you know there will be consequences later??

FF The Pain Pay Off
The Pain Pay Off – will what I do today impact on me tomorrow?

 

You see that’s pretty much my life. I am in pain constantly and sometimes there is nothing more that I can do other than curl up, in bed, in a darkened room, waiting for the acute pain to settle into something more manageable. When that’s not the case I try to pace myself through the day, carrying out small tasks with rests in between bouts of activity.

 

The problem is there is no way of knowing if there while be a price to pay later – The Pain Pay Off. No matter how hard I try to pace myself and ‘not overdo things’ sometimes my body says “enough” and just starts to shut down. This can be in the form of a migraine, back spasm, pain or more recently a seizure. It is sooo frustrating!!! I have a million and one things I’d love to do in my head and in reality I’m fortunate if I get the ‘and one’ thing done.

The Pain Pay Off - medication and bed rest!
The Pain Pay Off – medication and bed rest!

The Pain Pay Off can also be really random. What I can do on one day doesn’t mean I can do the same thing on any other day and ‘get away with it’. This makes planning virtually impossible.

FF Woman in the dark in pain.
The Pain Pay Off – some days are about getting through each hour at a time.

So how do I deal with it? To be honest sometimes I don’t deal with it very well. I cry and feel like life is very unfair and get cross at my body for letting me down. Come on, I used to be able to run 10 miles – where did that girl go??

FF Woman behind rainy window
The Pain Pay Off – running may be over but determination remains.

Othertimes I just have to accept that this has become the new ‘normal’ for me. Focus on all the positives in my life; my hubby, our 3 gorgeous children, my amazing family and friends. And then there’s God. It’s not always easy holding onto your Faith when you’re hurting. But I know He understands. He loves and accepts me just as I am – that really helps.

Practically, unless I have a migraine, I use distraction techniques; playing Solitaire on my phone, watching a film, reading through my Bloglovin’ feed. It can be hard to concentrate though if the pain is bad.

As for the seizures, well they kinda mess everything up. My body acts on it’s own, it jerks and contorts and I just have to try and concentrate on my breathing, until the seizure has passed. I know I will hurt afterwards. The Pain Pay Off is still there, it’s just a result of my body jarring itself, rather than because I’ve chosen to do something. That’s so not fair, but it is real and it is my life at the moment.

Do you have to deal with pain?

Is there a Pain Pay Off that you know to expect should you chose to undertake an activity?

How do you deal with The Pain Pay Off?

Sammie x

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Adapting My Life To A New Normal

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Hi, it’s taken me ages to write this post and come up with a title that accurately describes where I’m at : Adapting My Life To A New Normal. What I am going to share with you, is my journey, over the last few weeks. Honestly. But maybe a bit back to front!!!

My life was about to take on a whole new direction.
My life was about to take on a whole new direction.

About 3 weeks ago I came home from a 2 week stay in hospital. My stay was unplanned, difficult and was preceded by one of the most frightening periods of my life.

At the end of March my husband called the Paramedics, as I was having, what we now know are Seizures. Failing a series of, quite brutal tests, designed to get a response out of me (trust me – if I could have responded I would have – having various pressure points pinched, poked and twisted was painful. Very painful!!), it was decided I needed to be take to our local A & E via Ambulance.

Whilst there, the eye twitching/mouth contorting, developed into full body jerking. Arms shaking, legs moving, my whole body rocking and rolling and I was completely unable to stop or control any of the movements. I was very scared. Nothing like this had ever happened to me before.

The road ahead is going to be a very bumpy one.
The road ahead is going to be a very bumpy one.

Ok so I live with Chronic Pain and Frequent Migraines, so I’m used to my body not behaving as I’d like. But this, this was a whole different thing,

During each Seizure I remain completely conscious and aware of my surroundings and what people are saying – although during the longer Seizures (15 minutes plus) all I can focus on is trying to keep my breathing as steady as possible and getting through it!

After various tests I was admitted to a ward, where I spent the next 2 1/2 weeks. Easter was spent in hospital, not at home planning egg hunts with my hubby for our children – that was hard. I missed them so badly. Even though they visited on some days, we spoke or text everyday. Whilst I was still stuck in hospital, having upto 15 Seizures a day – our eldest daughter, Star was revising for her GCSE’s at home. Not that anytime would be ideal for what was happening to me, but to say the timing sucked would be a massive understatement.

It became clear, as more tests were carried out on me, that my future would mean Adapting My Life To A New Normal. Daunting to say the least!

What does the future hold? Which direction will it take me?
What does the future hold? Which direction will it take me?

Gradually, over the 2 weeks the Seizures reduced to 5-10 a day, with a couple of rare days where they were absent altogether. I kept a record of the Seizures, time, length, previous activity etc. There was a lovely lady diagonally opposite me, she would note the time a Seizure started and then I would raise my hand, once it was over, she’d say “OK Sam, I’ve seen your hand” and then let me know how long it had lasted once I’d recovered.

Having a Seizure, for me, feels like I am strapped to a Bucking Bronco, unable to get off. My body is bucking and doing a full workout, whilst inside everything is spinning and dropping and it’s a very exhausting, frightening experience. During a Seizure I lose ALL control of my muscles. I can no more make a muscle move, at will, than stop it. I get through each episode by singing, in my head – this helps to give me something to regulate my breathing and to hold onto the one person that is immovable and constant, Jesus.

Without my Faith and the amazing love and support of my husband, I do not know how I would have got through the last month. Jesus is ALWAYS there, in the middle of a Seizure, during the long lonely days and nights. He truely never left me or gave up on me.

The cross. A reminder of my Rock and Anchor, Jesus.
The cross. A reminder of my Rock and Anchor, Jesus.

The good news is that I don’t have Epilepsy, or a brain tumour (that was a bit of a shock when it was mentioned as I hadn’t eveen considered it!!). I am now home awaiting an appointment at a London Neurology Hospital. I get to see my hubby and children EVERY DAY.  Oh and I haven’t had a Seizure since last Sunday – 5 days clear!!!! The flip side is, as I start to feel better, stronger and less ‘spacey’ I’ve realised I can’t drive and won’t be allowed to for at least a year. That’s going to be hard, very hard. All the time I was having regular Seizures I didn’t even want to drive, but as I get further away from my last Seizure I know I can’t. I’m Adapting My Life To A New Normal.

I will make it, we are adjusting as a family. True the timing is horrid given that Star has started her GCSE’s. Would the timing ever be right though? We have a strong Faith in Jesus, who has brought us through adversity before and we will get through this together, with Christ at the helm, steering our ship through choppy waters.

So I’d like to pass on a word of encouragement to all those of you who are going through difficult times and sailing in troubled waters, place your trust in Him who loves you with such a powerful, unyielding Love. Jesus loves you with a Passion and He will hold your hand, if you reach out to Him and guide you through the unchartered waters ahead.

Please feel free to share your experiences in the comments section.

Have your circumstances changed? Are you saying I’m Adapting My Life To A New Normal?

Who do you place your hope in?

Sammie x

 

 

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