“Don’t spend time beating on a wall hoping to transform it into a door”- Coco Chanel.
Coco Chanel. The true original fashion designer that turned women into ladies. To this day it makes me wonder how one woman could have so much strength, mind you the more I think about it we all have strength it just depends on whether you put that strength into practice.
Today has been a day where my Epilepsy and I have disliked one another. Epilepsy week is this week and is due to end on 25th May. It’s made me happy to see the awareness being raised and people re-tweeting to educate others.
Waking up every morning to see the educational tweets about my condition makes me proud however when the shakes take hold the stronger half of me wants to eradicate the weaker side and push when it’s not required. Words can’t describe the way I feel about the shakes. They are a force to be reckoned with and one that I wouldn’t wish on my worst nightmare.
Sometimes I get all annoyed because I feel that people think I’m putting it on because one moment I’m joking on about the weather and the next minute my demeanour has changed and I’m sitting on a floor shaking.
My shakes are bearable when my mind is positive however today I woke up feeling lethargic and not with it at all. I looked in the mirror and was drifting off whilst drying my hair. My arms felt sore, my head was sore. That should have been a sign however like true Saz style I didn’t want to accept that the signs were there. I needed to get to work.
My sleeping pattern has regulated since the bird decided to disappear for a couple of nights and I’ve been sleeping better. This morning when I woke up I sent my usual morning tweets before getting ready for work.
This morning like one’s I’ve previously had my concentration was all over the place, I had a piercing headache and no amount of paracetemol was going to prevent what happened later on. As the day progressed the headache started to go however the lack of sensation in the left hand side of my face still remains whilst writing this blog.
The lack of sensation isn’t uncomfortable because I can’t feel my face however it still to this day makes me question why this happens to me. Sometimes questions will remain unanswered and that’s something I’m trying to accept however when they become more frequent that’s why my mind wants answers.
The shakes aren’t an issue with me anymore because I’ve factored them into my thought pattern however these constant feelings can create negativity and make me want to throw the towel in.
After taking a jaunt to the first aid room at work I looked out of the window and burst into tears. Part of me didn’t have a clue what I was crying for because I’ve had experiences like these in the past. The problem being was that I knew a shake was beckoning however didn’t know when it was actually going to hit me fully.
What I find disappointing is that I know my shakes are Epilepsy related however there appears to be this brick wall that my doctors and I keep hitting when we try to find a word to describe my shakes.
Initially we thought it was potential migraines, other times we considered whether it was anxiety related however the more we discuss my shakes the more we realise that medication does play a role. The doctors have recognised this and considered taking me off Keppra entirely however know that by either reducing it drastically or taking me off the drug may not cure the shakes and would result in the seizures returning.
Unfortunately side effects are something we all have to accept when taking tablets daily. It’s like anything you take there’s always that large warning sign in capital letters putting the fear of god into you to cover their own backs. That’s understandable and something the medical profession have brought in to give us the patient an indicator as to what the ingredients are and the effects those have on the human body.
People today have been concerned about my welfare.
With me it’s not just about taking days off on the sick because I have a disability. It’s the impact it has on your daily duties. Having a bad shaky bout can knock you for six and leave you mentally and physically weak resulting in you not wanting to do what you’d planned. That’s the saddest thing about the shakes therefore from now on I have made the promise to myself to go with the flow and not put too much emphasis on getting jobs done right there and then.
I’ve walked around work today adamant that I wouldn’t go home and I would “see how I went” as the day progressed before making any rash decisions. What I should have done is give my head a shake and realise that my eyes were touching the floor and I looked whiter than a sheet of A4. People have referred to me as being bubbly and a lass that couldn’t stop talking if she tried. I agree with them on that one. Shakes or no shakes you can’t stop me talking not for love nor money.
I eventually made the sensible decision mid day to return home at 1.45pm.
In my own head I wanted to prove to myself for whatever reason (that unfortunately I cannot answer) that I had given it my all and I wasn’t asking to go home for no reason. People may question my judgement for making that decision so late on however I wanted to eliminate every eventuality. I wanted to ensure that I had a bite to eat, drank plenty of fluids and even had a bar of chocolate to rule out my blood sugar being low… I know I’m healthy eating! I was gutted but the galaxy did taste nice.
Why is it that our days never go according to plan? I thought I was doing ok this week and then all of a sudden the day comes to a standstill? I understand that that’s just the way life is however it still makes you wonder or it does with me at least.
When I shake the first thing I do when I get home is have a quick snack and then sleep for up to four hours. Today was completely different. I returned home with every intention of sleeping, eating and then feeling better. Oh no! I ate, haven’t slept and still feel like rubbish. The headache has subsided however the numbness is still there and my body cannot rest. It’s like it’s on alert.
This is the thing with Epilepsy. Your body is always on alert wondering what’s going to happen next. For the past four months I have tried to encourage you all to relax.
Usually after persuading myself that relaxation is good for me I eventually have some down time however know that my body and mind aren’t as one. My body wants to chill, it wants to grab a magazine whilst lying in the bath having a soak. My mind however wants to start cleaning windows and tidying my wardrobe. What’s all that about?
I try to sleep and then I start dayreaming for a split second that I’m getting chased by a pig down my street. Can someone explain this to me? Two words to describe that part of my day. Fucking weird.
A couple of questions for you all.
What is it with the mind? Is it our medication that does this to us? Are any of you relate to what I’m questioning?
The shake happened later on this afternoon. I shook for approx 45 minutes. Whilst shaking I tried to keep my attention on the TV. I didn’t have the strength to scroll down the TV menu therefore went for the first thing that came on. And you never guess what it was? Bullseye! You cannot beat a bit of bully.
For those who aren’t familiar with Bullseye it came onto British televisions in the eighties.. probably around the time I was born. It was primetime television. Contestants would answer questions, those translated into points. At the very end you could try and win a variety of prizes. The prizes were horrendous but were the in thing back in the day.
The star prize was usually a speed boat something people very rarely won.
I think the best bit of it has to be when the presenter consoles the contestants for NOT WINNING before saying the line “Well this is what you could have won” Get away! What you really want to say is Sod off let me go home.
Who would ever have thought Bullseye would be my concentration point to prevent me shaking. Nevermind.
The shakes have gone now and I’m feeling rather weak. My mind is active and I’m trying my best to remain calm and try to sleep. Doubt this is going to happen.
As for the remainder of the day nothing much has happened. My husband has made a beautiful spag bol that I demolished within minutes and I’ve caught up with a bit of Jeremy Kyle USA. Now You’ve been framed is on.. Oh dear. I’m trying to contain my laughter… not.
Anyhow to conclude today’s post. Sometimes things don’t go according to plan therefore don’t put kick yourself in the arse if it doesn’t. I try to be an optimist at all times however at times the pessimist in me and question things to the hilt worrying about what hasn’t yet happened. This is one thing I’d urge you not to do. Worrying gets you nowhere, it really doesn’t.
I’ll leave you with a quote that I may have used before however will use again.
“Keep smiling because life is a beautiful thing and there so much to smile about”- Marilyn Monroe.
That’s right. I can’t answer the questions I asked myself earlier because to be brutally honest I don’t know the answers.
Life is a beautiful thing made up of beautiful people who I wish to share my life with. Shaking is hard to accept at times however I’m getting there. I don’t like it but know it’s there. As I’ve said many a time acceptance is what allows you to drive yourself and gives you the power to move forward. Never let anyone hold you back.. not even the shakes.