The Rules Of The Road

There's so many rules to follow when living with a chronic health condition, there are the rules your doctors tell you, the rules you painfully figure out and the rules your friends and family tell you as advise and you kindly follow (or pretend to) to make them feel a bit better about watching you live with this. They are as follows:

• Don't eat the wrong thing

• Don't do too much

• Make sure you have plenty of rest

• Stay hydrated

• Take your meds at the exact time everyday

• Don't stay up too late

• Go for a walk

• Talk to someone

• Stay strong

• Ride it out

• Try something new (like yoga or meditation)

• etc etc you get the gist!

There's more but these are the first ones that came into my head. I try to follow the rules and for the most part, I do, but there comes a point where you just have to live and enjoy yourself! So i've had a very busy weekend this weekend, this consisted of a bbq party that involved 1. Day drinking 2. Food and 3. Preparation. To most people this kind of event is simple, you dress up, you show up, you have fun and you go to sleep with maybe a little hangover in the morning but for people with a chronic illness it's a whole lot more! It calls for lots of rest after AND before in order to have enough energy to enjoy ourselves, it means thinking ahead on what to eat and when to eat because there may be something 'safe' to eat at the event but there's no certainty and always a risk of cross contamination so id rather not take the risk and make myself ill, for example I had to plan breakfast and lunch around resting and getting ready and I had to make sure it was enough to keep me going until I got home, sometimes is means packing snacks or your own food depending on how long you're going to be there. Then it means having enough time to rest and recover after which isn't always easy. Please remember when you're with someone who has a health issue that although we look fine, having a drink and were having fun that doesn't mean it comes easy. I had a really lovely time socialising with friends, some I haven't seen for a while but today although I feel well, I'm tired, irritable and want to sleep all day. However! I had planned to go to the movies with some family, I was tired and grumpy but not wanting to let anyone down I got myself dressed and sorted and headed there with them, again, don't get me wrong, I had a lovely time but what I really needed to do was spend the whole day resting and I am going to pay for that tomorrow when I am back at work! So no, I don't always follow the rules and I shouldn't because the bottom line is, I've had a great weekend, but It comes with consequences and I have to be willing to cope with them when I choose to stray.

We have to live our lives the best way we can, so please, if someone cancels plans, or hasn't been able to see you for a while, or all they want to do all day is lay in bed, please remember we have a limited amount of energy that we try to reserve but when we can't we are not being lazy, were doing what our body tells us to.