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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Migraine Not Always Sunshine And Roses

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Hello there eveyone. How you doing?  No really – How – Are – You?  I really want to know. I thought I’d veer off my normal recipe/uplifting thought inspiring post for today and be honest.  It’s not that I’m dishonest on my blog, but I fully understand that whenever you portray yourself via a blog, or on social media, you get to choose which parts of you the world sees. Which is why I’m addressing why Migraine Not Always Sunshine And Roses.

Now I love Sunshine and I adore Roses, but in my real, everyday life sometimes the Sunshine hurts and the Roses are thorny and those thorns can dig in and take a while to come out – I’ll explain:

Actually, this is really hard to put into words.

Migraine
Migraine

I struggle.  I’ve just been up (I literally mean out of bed and dressed) for 2 days.  The previous 4 days were spent laying in my bed, blackout curtains drawn, burying my head into piles of pillows trying to stop the pain. I had a Migraine and yes it lasted 4 whole days.

The slightest sniff of even the blandest food can set off nausea and vomiting. A shard of sunlight, streaming through a gap in the curtains, feel like a dagger to my eye.  My head literally feels like it is going to explode; like someone is blowing a balloon up inside my head and the pressure keeps building and building.

A Migraine is not a headache, although blinding pain in your head can be part of  the Migraine.  My head throbs with every beat of my heart, the pressure increasing with every beat until eventually I vomit and the pressure is temporarily released, only to build again as the cycle repeats itself.

At the onset of a Migraine I begin to lose the sight in my left eye (a relatively new development), my sense of smell goes into overdrive, I crave fresh, cold air, yawn incessantly. My one and only desire is to head straight to bed, briefly halted by the need to get Indomethacin in me ASAP – there’s no dignity in having a Migraine, it’s a suppository.

Once cocooned in my blacked out room I have to decide whether to use my Triptan injection. You’d think it’d be a straightforward decision, but hang on – my ability to think, let alone think clearly goes right out of the much needed open window as soon as a Migraine begins.  Firstly the injection hurts – a lot!  I also have Migraines so frequently (it’s not uncommon for me to spend more than half of the week in bed) that I have to limit how much Triptan I use.

Sumitriptan is one of a group of drugs, called Triptans, that can halt, or shorten the length of a Migraine.  However, in me, overuse can lead to tolerance and  so the injection has little or no effect.  Long term overuse can also lead to ‘Medication Misuse’ triggered Migraines and/or headaches.

Writing this blog is upsetting because it forces me to focus on the reality of the world and body I live in.  A natural optimist, I always focus on the good rather than the bad.  And that sucks.  I hate that I am in pain. Also, I hate that my back and neck go into spasm and my body aches like I’ve got the Flu. Being sick is something else I hate, except for the few minutes after vomiting, when the pressure in my head is relieved.  I hate that the Migraine plays tricks on my body, I feel a bit better, move and the throbbing in my head comes back with a vengeance.  I hate having my words come out all jumbled up, when I try to speak.

But mostly I hate the impact it has on my hubby and our 3 children. Is there a mother out there who delights in being cared for, dependant on their children??? I don’t. I’m their mum, I should be doing the looking after. The added stress to my amazing hubby, who I forever wonder why he choose me?

On a practical side, me being ‘out of action’ is a nightmare, that is soothed only by help from the BEST family (both of ours), friends I don’t deserve and my Faith (see ‘Important Stuff’).

To all of you I say Thank you from the bottom of my heart – I love you.

I have always had Migraines, even when I was a toddler. Then I was involved in a car accident 25 years ago and the Migraines changed. Before they would build during the day, culminating in a vicious cycle of intense pain, vomiting, sleep, pain building etc. I learned what foods to avoid and overtime narrowed down some of my other triggers; such as tiredness, excitement, not eating regularly.

Since the car accident I wake in the early hours of the morning (between 3-5am) with a full blown, excruciatingly painful Migraine. Dr’s don’t know why – I suspect it could be due to the neck/back injury I sustained in the accident. Who knows?? It is what it is and it sucks.

The waste of being unable to ‘do’ anything, just stuck in bed. Praying hard that this Migraine will pass quickly. All I’ve ever wanted to be is normal. To blend in (hard I’m 6 foot tall). While giving our children a great childhood and being the best wife I can be. And to help others. So frustrating and disappointing. My belief in and love for Jesus gets me through, always, even when I think I can’t face another day He carries me through.

I’m not looking for sympathy, just a little understanding. Finally, I started this blog so that I could not only share my recipes but have something positive to do when I’m recovering from a Migraine?

If this post Migraine Not Always Sunshine And Roses has helped you, these posts may be of interest to:

The Pain Pay Off

FF Migraine Not Always Sunshine And Roses
The Pain Pay Off

Living With Seizures 

FF Migraine Not Always Sunshine And Roses
Living With Seizures

Adapting My Life To A New Normal 

FF Migraine Not Always Sunshine And Roses
Adapting My Life To A New Normal

Do you get Migraines? How do you get through those days?

Sammie xx

 

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