But you don't look sick?

"Have you ever seen someone park in a disabled spot and look perfectly healthy as they step out of the car? You wonder, "They're not disabled, they can walk just fine! They must have that disabled badge illegally." What most don't stop to think is that perhaps this individual may have an invisible disease. A disease that causes a brief walk across the parking lot to feel like the equivalent of running the length of a football field five times over while every single joint screams in pain."

I'm very aware of the fact I don't look poorly and I look rather normal for someone who has such a life threatening disease. But I can assure you that if you could see my insides, they would tell a very different story.

Anyone that knows me well will know I'm very stubborn and I refuse to give up. Work is hard, much harder than it should be and it's getting harder; but I won't give in. It may take me more time, and I made need to take five minutes but I will not give up. When I see my friends, you may see me laughing, talking and walking. But what you don't see is me asking them to slow down, or me telling them that I'll talk in a minute because I can't walk and talk. You don't see me stopping to catch my breath and gathering myself because I feel 'funny' (faint/light headed), to you, I'm looking in a shop or checking my phone.

People assume that I can breathe better because I'm out and about and doing things, unfortunately no I can't breathe better at all, it's worse when I'm out and about. But I refuse to sit here and not do anything; it might take me longer, I might have a funny 5 minutes, but I'll do it, no matter how hard it may be.

Sometimes I do give in and say yes to the use of a wheelchair, but only if I'm not in Swindon. I don't know why but I'm not ready to see people I know in a wheelchair out and about. Even though some days when I'm out I could really benefit with being in one, I refuse to use it. I'd rather struggle than be seen by people I know in a wheelchair.

And even though I'm in my wheelchair, I still don't look sick, and my illness isn't actually that visible. I just look like a young girl, in a wheelchair, with no obvious reason as to why I'm in a wheelchair.

I'm still learning how to not be embarrassed when asking for help and for people to slow down. And this is something else I'll have to learn to accept. I've already come so far in just a year with my wheelchair, but I think it'll be a while till I'm ready to accept it fully.

"All too often judgments are made that the patient cannot be ill, because they do not look sick".

Love, Erika

http://www.mollysfund.org/2013/04/invisible-illness-but-you-look-so-good/

One Day

If you had one day to live, how would you spend it?

Many people say they would want to live it normally, as they would any other day. But if you knew that you only had today then would you really? I know I wouldn't.

I'd make a special effort to wake up at 8/9am so I really could make the most of my day. I'd ring absolutely everyone, all my close friends and family so I could spend it with them. And I think I'd like to get the train to Weston-Super-Mare.

A lot of my childhood memories are at Weston with my family; mainly my Mums side. I have so many fond memories of donkey rides, sea world, the pier and Ben building us sand sculpture cars. It's definitely one of my 'happy places'. I spent my 17th birthday there with my family last year, and to some of you that may sound far from exciting but I honestly had the best day. They have the most amazing milkshake shop just outside the centre which we always go to, and the pier is always a good shout.

Anyway, I would definitely go to Weston-Super-Mare and I would definitely grab a milkshake and I'd also go to the pier. Ahhhh so much fun. And I think I'd just get some chips and gravy, and eat on the sea front wall with everyone.

If I had one day to live that's how I would spend it, not too complicated, but spent with the most important people in my happy place.

As for having one day left to live, that won't be anytime soon and if it ever does come around, I'd like to think I'd be at a decent age, so I probably wouldn't be able to do all that in reality. So actually if I did have one day to live, I'd like to be at home, in bed surrounded by my family and friends, and theres nothing more I'd want! (Although a a pizza definitely wouldn't go a miss. (I hope that's the right term).

I believe that you should live every day as if it's your last. You leave behind the history of yesterday, and determine how you will use todays energy; because all you have is now, and you have to live for today and make it so beautiful that it's worth remembering. Today will never come again so make good use of it. You will only regret it if you don't.

Life is beautiful; count your blessings, not your problems.

Love, Erika