Forever changing plans!

For those of you who read my last blog post you know that the plan was to have surgery the next day, unfortunately this didn't happen! I know very annoying and lots of people will be thinking, why say I was having surgery and then not? well some things are out off my control, believe me I would have had surgery if it was my choice but because there are lots of complications going on and because it "specialist surgery" getting the right people all in the same place at the same time is proving very difficult! especially because we want the best consultants all too be available.

So at the minute I'm at home!!!! I'm going back to the hospital tomorrow morning with a plan for surgery Friday, but all of that could change. That's the thing when living with a complicated condition, things don't always go to plan.

Now I don't like to moan but, when people don't live with a complicated condition they don't understand how quickly things can change. I can go from been fine to been in agony and feeling so unwell in the space of 5 minutes, now this means I'm forever cancelling plans and saying I cant meet up with friends, or I continue to try and be a normal teenager but feel so rubbish that I'm no fun and really aren't myself and I use all my energy in one day and pay for it the next. Now most of my close friends know that I push myself to do everything I possibly can as I hate missing out. My friends are FOREVER telling me to slow down, have a rest or saying "Evie are you sure you should be doing that", its like another battle my head and my body forever fighting!!

Now to someone that isn't unwell trying to explain my lack off energy is really hard. But regardless of everything else going on, imagine how weak, faint and rubbish you feel when you haven't eaten (also when you've lost 16kg of weight, must of which is muscle), times by 10 and also add a bit of flu and a sickness bug in the mix, you can imagine how tired you would feel. Also thrown in to the mix is side effects from medications and lack of sleep!!

Now I'm not telling you this so you can pitty me because that's not what I want, I just want people to know that when plans get cancelled or I'm not myself, its not me, well it is me but its not, its my "poorly" me taking over, which believe me I don't like happening very often, but honestly I hate cancelling plans and not been myself as that's when my illness is taking over which I hate, but sometimes I have to listen to my body.

There are also plenty of other people out there that have there own battles and sometimes people need to think that when someone is constantly changing and cancelling plans its not always there choice cause no one wants to always be left out because they're simply unable to participate.

There isn't just me battling a complicated condition, theres plenty of others and unfortunately our plans can change very quickly, not just a health point of view but also doctors, to put it bluntly doctors and our bodies rule our lives. Doctors are forever promising things, surgery dates, test results and new medictions and then they get forgot about what they've promised and we are the ones left looking silly and also feeling upset having to wait even longer for the important things they "forget" about. Also doctors are the ones that restrict what we do, telling us we are too weak to do the things we have always loved! I know they're only doing this because they care about us and are doing everything they can to make us better, which I'm forever grateful for, but this makes things hard cause it can sometimes feel like they are just doing it for the fun of it.

I'm gonna shut up rambling now but I just want people to understand that I wish plans could go ahead and that what I say is going to happen actually would happen. To the people that are close to me when I'm cancelling and changing plans or I'm not quite my self, its not because I want to, its my body and health which aren't allowing me to push my body any more, I push my body more than I should on a daily basis, because if the doctors had their choice I wouldn't leave the house and what a boring life that would be. I maybe shouldn't always push my body but when all you want is to be normal sometimes its necessary.

Anyway I hope people get the idea, I'm gonna shut up rambling till next time, lets just hope surgery happens this week so I can quite the moaning and get my life back on track just in time for Christmas!!

Evie x