“If you ever think about giving up, remember why you held on for so long”- Hayley Williams.
Why is it every time we have an episode we have to make the ultimate decision as to whether to allow the episode to do it’s thing or whether we should fight on the off chance it’ll disappear?
This question just so happens to be the focal point of today’s post because lately although the shaking episodes have diminished somewhat they did make an appearance on Thursday much to my dismay. This shaking episode was a one that didn’t make me disappointed in myself it just made me have that off taste in my mouth until yesterday.
Wednesday just so happens to be my day off. I’ve been fortunate lately to be given the opportunity to trial a new working pattern to see if by having a rest day mid week will allow me to see whether this reduces my current shaking pattern benefiting me long term. So far so good however Thursday I wasn’t so lucky.
The quote chosen today pinpoints how an eventful Wednesday spent exercising, spending time with the family and regenerating my batteries can unfortunately take a different turn the day after. So how come?
Wednesday night was a mixed bag of emotions I’d had a lovely day however the evening was completely the opposite. I was ratty, I was tired and all I wanted to do was be left alone because my head was pounding. I didn’t think nothing of it I put it down to a bad headache end of.
Trying my utmost to shake off (pardon the pun) these headaches with regular intervals of paracetemol I decided to turn my frown upside down and crack on as usual.
After having an early night on Wednesday evening my shakes were to hit me quite hard early Thursday morning and to be honest it threw it me off guard.
With no warning signs I was woken by my shakes and couldn’t sleep.
After being assisted by my husband I sat on the sofa focusing on the TV screen to regain some form of control, my mind went blank and my hands started trembling uncontrollably. My husband as supportive as he is made breakfast took my breakfast bowl out of my hands as the shake developed fully.
Trying to put on a brave face I was adamant I would get up because I didn’t want to be sitting down. Stepping up my husband caught me as my legs went from underneath me and put me to bed to try and sleep it off.
An additional two episodes were to follow over the course of the day totalling seven hours of shaking and hoping that they would subside sooner rather than later.
Fortunately in this scenario I was awake when all of this is happening, responsive but babbling at times I tend to gravitate towards a bear of mine called Geoff that I’ve had since childhood.
Many may question why a 28 year old woman would still grab a bear who in times of need has been a comfort blanket to clutch when the other side of Saz comes out.
Feeling weak, not sleeping afterwards and wanting to raid the contents of my refrigerator tends to be the first thoughts that enter my mind shortly after. My body is exhausted and my mind is ready to drift off however when the shaking episodes reach their peak it’s safe to say that no element of me is in control.
What I’ve explained there is only half of what these shaky bouts contain.
To this day my neurologists and I have queried the what’s, where’s and why’s to this aspect of Epilepsy and whether the shaky bouts are picking up where the seizures left off. Personally speaking the close network around me have drawn similar conclusions with each and every one of us hoping that they will eventually find a word to explain what I have.
Numerous words have been used throughout my ten year struggle with these shaky bouts. Words such as medication, anxiety, worry, and stress are four to name a few to describe what could potentially trigger these episodes.
As you are all aware so far I’ve been to see therapists, councillors, travelled to support meetings and written down my own personal view of my perception towards my shakes.
What I do know is this. When I’ve worried in the past I’ve sat down and thought to myself why do I allow myself to let this get to me? That’s simple because I have no control when they do happen.
This then prompts me to ask the next question? Is there anything I can do about these shakes? And the answer is no.
Self belief is something that over the years has taken a significant amount of time for me to accept and giving up has on many occasion been a possibility. When we use the word giving up it’s like saying “we’ve quit” at something and no-one wants to be labelled a quitter.
What I have come to realise though is that when you’re shaking or when you’re fully aware of a seizure hitting you it’s perfectly fine to allow nature to take it’s course, it’s not “giving up” because you have no control of this happening.
It’s fabulous to be known as a fighter because you refuse to be beaten however my personal opinion is that it takes more of a person to allow your body to do what it must at that particular time then try to act as though nothing’s happening. Trust me I know because I’ve done this myself and it’s only made matter’s worse.
After looking back at my own experiences with Epilepsy I’ve noticed that I’m not a machine. This machine I longed to be growing up can be oiled up and gleaming perfectly however what am I trying to prove? I have a condition. Yep. I have to take time out from time to time. Yep. And is there anything wrong with that? Nope.
What I’ve said there is not about giving up it’s about differentiating right from wrong when you’re health is involved. It’s like asking yourself if you’ve being burnt once by putting your hand in the fire is your immediate reaction to go back and do it all again? I’d like to think not. In my eyes the same rules apply.
As for the rest of the week…
Food wise my mother made my appearance at mine on Thursday to check up on me after work. Bringing my a large saveloy dip and a galaxy chocolate bar made definitely made me smile. In fact it was safe to say that it was gone in all of 30 seconds I was that hungry.
Exercise on the other hand has been going extremely well. I’ve stuck to my routine and completed my exercise plan at least four times per week. I know perseverance is key on this one so fingers crossed I stick it out.
Family well.. Many days out are scheduled with the family over the upcoming months. Presents to be bought and bank balances dwindling however as long as I get a couple of yankee candles in there for myself to appreciate then I’m not complaining.
To conclude today’s post. The quote pretty much says it all. Why give up when you’ve held on for so long? Why have we held on?
I think we all have different answers to that question however would like to think the reason why we do this is because by giving up can be portrayed is showing weakness and under no circumstance do we ever feel like we want to be defeated. There’s a fine line between quitting and giving up. Some may think it’s exactly the same thing however when it comes to Epilepsy I may have to disagree on that one.
What do you think?