Tag Archives: enjoy

Pushing boundaries

It was amazing to see my friends from Australia yesterday. I really enjoyed the catching up we did and it was lovely to see them well and hear all about their travels. However I am paying for having a good fun day yesterday. I didn’t go mad yesterday, I was really very slow in what I did as my head was still in quite alot of pain as were my joints. However I pushed a little and made it to talk and have a cuppa coffee. 
Despite this and being careful and mum doing the preparations and still taking my medication today I am in agony. The pain in my head is much worse, i ache from head to toe and Ive already had 2 seizures today and I think its pain induced. The cluster attacks are more than yesterday and the day before. Im really struggling. Im tired too as last night I was woken many times in pain. After taking my pain meds the sleep is not what I call real – its forced and drug induced and i can still feel the odd stabbing of pain despite being asleep. Its hard to describe.

However was it worth it? Yes. I cannot stay locked away in a darkened room all my life. If i have to live the next however many years of my life like this then Id rather push the boundaries every now and then to do something great than not.

Fun in my life seems to have a price. No matter if  it be having a seizure at the titanic ball or being in more pain than usual because I did more walking or more of whatever. The price is normally paid by mum moaning about how I shouldn’t have done (fill in the blank here) and me saying I would rather live my life and push the limits and pay the price than not have the life or experiences at all.

I think mum can see both sides of the story – or I hope she can. I hope she knows that I don’t do any of these things to annoy her or cause her trouble and Just because I do something she doesn’t agree with it doesn’t mean I think any less of her or do not love her. its not. It because i want to try to be “normal” (whatever that is). I want to live life rather than spend it locked away. 

I love mum dearly. 

You only get one chance at life though and I plan to live it to the fullest I can, and yes I will push the boundaries the next time I want to experience life. 

Don’t loose out on life, you only get one chance and it’s too short for if’s, but’s and maybe’s. 
go enjoy what life has to offer. 

Stop and smell the roses !

Stop & Smell the roses, It’s Not a Competition
Throughout our childhood, there is a strong focus on being the best at everything. mostley this comes from our parents ans peers who although they only mean to encourage, they create this thing where a person feels they need to be the best in sports – being picked first and being picked for the school teams. The best in class – getting the best grades; the best report card; the best places at the best universities. The best phone; iPod; clothes. The most popular. The most likely to succeed. I could go on… My point is, there is a distinct emphasis on where you were/are placed  in a imaginary or physical league table of your peers.
As we grow up into ‘mature’ adults…  And leave the world of compulsory education, we unfortunately continue this obsession of how we are comparing to another.
For those of us with disability or chronic illness, comparing ourselves to our able-bodied friends can be seriously detrimental, making us depressed and feel worse. 
So-and-so from high school just bought his first house.
Whatshername from university has just been awarded her PhD.
The guy down the road, he’s making 60K a year.
John and Jane from college are married, two kids, and are going on holiday to Australia.
Need I go on? I’m certain if your reading this as someone with a chronic illness you’ve said similar to yourself.
I’m certain you have replies to all of those sayings too. You haven’t been on holiday in years. Living in rented accommodation or with your parents! . You barely making ends meet, or living on benefits.
But listen to me…. life is NOT a competition.
The people we relentlessly compare our ‘failing’ lives to don’t have to live with these life-changing/ life limiting illnesses. You are a SURVIVOR, and have lived through experiences they couldn’t even dream of in their worst nightmare!.  You have the ability to help and support others in similar situations – no amount of education, or money, or fancy plasma TV screens can mimic that. You have knowledge of the health system, of treatments and hospitals, doctors and health professionals. All of your experiences are USEFUL, and while we may wish we didn’t have that pleasure, we can turn around the negative and use it for positive.
While you may see better things in their world than your own, jealousy is an ugly and unhelpful thing. Instead, why not use these  feelings to try and improve your own situation – IF you are well enough. So you can’t do this and that but we live in a world of computers and social media ! If someone told me 5 years ago that I would be a world wide advocate for epilepsy awareness I would have told you ,your mad. Yet here I am less than a year on from when I started speaking out about epilepsy, My epilepsy, sharing my life with you all. Before this I was scared, tired, upset and felt worthless. I resented epilepsy for taking everything away from me. Now although I’m still not happy (I mean who would be) about my situation but I have my own blog. YouTube channel, Instagram and all the other social media things. I’ve abseiled, started a lantern ceremony, celebrated purple day, raised over £720 in 4 months, been in the newspaper and am about to get published in a worldwide magazine… All in this short time. You have the power to show people life shouldn’t be taken for granted- the more people realise this the more people will enjoy the simple things in life like we do… Like I do. 
I appreciate being able to get up and out of bed, I appreciate every part of life when I’m conscious and able to see it, I appreciate being able to have a bath, I appreciate when I don’t have to take all my pain killers, or don’t have to be on oxygen, that all to me is freedom. There are so many things I appreciate that I know everyone else takes for granted and I tell you something, I feel I am more empowered to go forward in life: no matter how far I get in life. 
Living your life thinking you are failing in comparison to others around you, will ONLY set you up to fail. CHANGE your way of thinking. Challenge instead of competition – challenge yourself to improve what you have, but ultimately you need to love the life you live.
A good friend of mine told me that life is different for everyone and i was given this life by god because he knew i have the strength to cope with it.  Coping with illness and pain takes a lot of daily effort. Just as much – if not more than being in full time work or being a mum or anything anyone else is doing. It’s just a different strength. 
Life is not a competition or a race. Life is for enjoying, exploring and experiencing. The more you compete – the more of life you will miss. Go slower stop and smell the roses and enjoy the small things.