The Build

Hi everyone, long time no speak! I hope you are all well. Life is a little bit crazy at the moment which is why there has been some serious lacking of posts but hopefully I can start to pick it back up again over the next few weeks!

I'm currently having an extension built on my house, oh em gee! It started on the 20th of June, and it's going to be an extension on the downstairs to extend the kitchen diner, as well as building a downstairs bedroom and bathroom for me because those stairs are starting to get the better of me now. We're currently boxing up our kitchen, dining room and living room and I'm preparing to leave to go to my Dad's tomorrow for about 3 weeks while they do the knock through and complete the build.

It's not been as stressful as I though it would be, and we're very lucky with our builders. They're all so lovely and we get on really well. Don't ask why but I really enjoy making them cups of tea haha, maybe it's therapeutic I don't know but never the less I enjoy it. We're always having a laugh and when it comes to the end of the day I don't actually want them to go home, and now I'm packing up for my Dad's I won't see them anymore which I'm a bit gutted about!

Apart from the build, not much has really happened! We hosted a quiz night last night in the aid of the Rainbow Trust which went really well and I had such an amazing night; so keep an eye out for a post on last night which will be coming later this week.

And then for the next few weeks I've got quite a few things going on which is exciting.

This week my Grandma and Grandad are finally moving down from Brighton and we get the keys on Monday, so most of this week will be helping them out with decor and moving in. But I'm also off to Bristol this week with some friends from work for a good old shopping spree, then at the weekend I'm going to a wildlife park as well as the usual which is meeting up with friends for a coffee and catch up; definitely one of my favourite things to do!

So a really full week coming but I can't wait! It also means that time will fly by because I can't wait for my birthday which is in 28 days!!!!!!!!!!!!! Flipping heck, it only feels like yesterday I was saying that it was 160 days! Oh how exciting.

Speak soon

Love, Erika

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/