When it comes down to it, I am ‘too sick’ for a lot of things – most things in fact. Some of these things are made totally impossible by my symptoms but others are just made extremely difficult. I’ve been struggling with the ‘extremely difficult’ things lately; do I risk my body totally failing and resulting in immense pain/fatigue or do I play it safe and stay in bed?
Believe it or not, this is a question I ask myself before a trip to the grocery store. Extremely difficult for me is anything that involves standing more than a few minutes. It’s hard to keep on ‘doing life’ when even the most basic of activities are a total struggle. I am now finding it hard to balance looking after myself while still living life to some extent.
At the beginning of this year, I travelled to Bali against the orders of my doctors. They knew I was too sick, I knew I was too sick, but I did it anyway. Did it make me even sicker? Yes. Was it worth the month of bed rest that followed? Yes. Sometimes I must put my health second to prevent myself from going insane. After all, I am just like any other 22-year-old who wants to explore and have fun but unfortunately, I just have smaller limits than everyone else.
The question I have is how much of my health can I sacrifice for the sake of living? Where do I draw the line? I know I still have a decent quality of life, so am I being greedy by wanting to push that little bit more? It’s definitely very difficult and I don’t think there is a right answer to any of these questions.
It all comes down to the price I’m willing to pay – am I only ok with small outings every so often that only take a few hours or a day to recover or am I willing to branch out and do more but have a recovery time of a week or more?
Being sick for almost a year, I have learned my limits and what I can and shouldn’t do. In all honesty, if I take it super easy for a week – doing nothing more than resting, I feel relatively ok. However, the second I start to take advantage of this by going out or attempting some housework I am quickly reminded of my limits and why I need to rest as much as I do. It’s a very cruel tease, feeling well but knowing the minute you do something you will automatically regret it.
Life has become a battle between listening to my body and trying to maintain some quality of life. I have had to give up so many of my dreams and goals due to this illness but it doesn’t end at that. There are so many things I would have otherwise considered insignificant that I now must put my health on the line to do. The thought of a shopping day used to excite me but it now terrifies me. A simple trip to the zoo was an occasional treat that is now something that would put me in bed for a week. A walk on the beach used to be a relaxing and peaceful time but it is now extremely difficult and painful.
There are so many other examples of things I took for granted and never thought I’d miss this much. Realistically these are things I still can do but I pay a serious price for doing them. It’s almost like buying a loaf of bread for $100 – bread isn’t the most exciting food, but most of us eat it and enjoy it. Would we pay all that extra money for it or just go without? Sometimes we’d be tempted to pay the price but most of the time we’d agree that spending that amount on something so basic is not worth it. That’s how I feel about using my limited energy.
I am definitely not alone in this struggle so I wanted to share how I go about strenuous activities. It all comes down to three P’s – price, priorities, and planning. First, you must work out price your body will pay for the activity. Estimate a recovery time and work out whether the price you pay is actually worth the activity. Then work out what else you have going on during your estimated recovery time, will you be able to manage these things? If not then you need to prioritise which is more important. Once you’ve sorted out that, you need to plan. What’s the best time of day for you, what the weather will be like and how that will affect you, can you bring anything along to make things easier? Plan every detail from your comfy shoes to where you can rest nearby if needed. By doing these three things, you’ll feel much less stressed about the day.
Being chronically ill is very limiting in so many ways but every now and again I do need to put my health second and do a little bit of living. However, in saying that, just because I am capable of certain things, doesn’t mean I should do them. It’s a constant battle between my health and trying to keep on doing life but that’s okay. At the end of the day, it means each of my experiences will be that extra bit special because they require more effort.