Alright everyone - let's face it - we have ALL said something along these lines:
"I can't do that right now. But when I feel better, I will..."
Or
"Once I start this new treatment, I can get back to _________ when I feel better..."
Or
"I'll do that when I feel better..."
For the most part, there is absolutely nothing wrong with this particular phrase. Sure, if you are stuck with your head halfway in the toilet vomiting from food poisoning or the flu, this phrase is perfectly understandable.
Hell, if you are in any kind of excruciating pain, it's understandable. But here's the thing. Hearing or seeing that phrase always reminds me of lyrics from Sarah Maclachlan's "Angel". It goes: "spend all your time waiting for that second chance, for the break that will make it okay. There's always some reason to feel not good enough, and it's hard, at the end of the day".
There is a balance between doing what we are capable, pushing too hard, making excuses for not doing enough, being cautious, being responsible, and yet living life to the fullest. We all struggle with this balance - every single day.
The problem with this phrase is the "when". I mean, in reality we never truly know what comes next, but at least there is a little bit of justifiable expectation when someone is healthy. However, when you are diagnosed with a chronic illness, when can become an if very quickly.
It is easy to fall into the habit of believing that once you try a new treatment, once you try a new diet, once you have that big appointment or that big surgery, that you WILL feel better and be able to do things you could not do before.
But when you have a chronic illness especially, there are never any guarantees. So how do you find the balance between always relying on HOPE, but also reminding yourself that feeling better is not necessarily the be all and end all? I always HOPE that a new treatment or new dosage or new diet will help settle things down and help me feel better, but I also believe that it is a mistake to put off everything for that "when" that may never arrive.
For instance - let's say I wanted to go camping. Let's imagine that in a month, there is a beautiful July weekend open, with nothing but sun in the forecast and no plans.
But right now, in this scenario, my Crohn's is being a biatch. Nothing I eat is going well, I am down to just drinking two Boost each day, and I can barely lift my covers off of my bed I am so weak. Let's imagine I have had to go to the ER for extra fluids, and that they have prescribed a brand new medication to try.
Now, while I hope this medication works and I hope to feel better - I don't want to set my expectations too high.
So what do I do??
I plan that camping trip....I plan for two scenarios.
The first scenario is that, by then, the treatment is working and I feel better and I am utterly unstoppable. That I am back to a full diet and I am fully hydrated and energetic and feel little to no pain.
The second scenario is that I have now experienced a full month of this awful flare-up. So what do I do? I plan to take extra Boost along with me. I plan to get hydrated the day before we go camping to ensure hydration for a couple of days. I pack 8 extra rolls of toilet paper and maybe some additional medication to help the pain so that I can enjoy my surroundings. I am confident that while I may not feel better, per se, after a month of this new routine (this 'new normal'), I will know how to cope and what exactly I would need to prepare in order to still enjoy myself.
My biggest piece of advice - don't put things off for "when [you] feel better". Rather, hope for the best, plan for the worst.
Obviously there are activities that simply cannot be accomplished when ill. There are, however, ways to adapt. If you are constantly expecting to feel better when you have a chronic illness, you may spend the majority of your life waiting on the sidelines for that elusive "when". It is possible that you can have one bad bout and then never again suffer symptoms, but if you have a chronic illness, chances are that your health will now be a rollercoaster. Best to appreciate the highs and prepare for the lows.
My most precious motto is that if doing something is not going to make my disease worse, but will have a substantially positive effect on my well-being, quality of life, emotional or spiritual wellness, then it is worth it. Even with longer recovery periods.
It is important to have a goal - and a cure is the best goal. But (in my opinion) constantly chasing that goal and making it an expectation rather than a hopeful goal may set you up for years of disappointment. By all means I still attend fundraisers and I still raise money for charities that are constantly searching for cures, and many people in similar medical situations often get into medical research as a career, but I am also not expecting to be cured right away. If I was always expecting a cure coming down the line, I may have decided to 'wait until I feel better' to do some things in life that I have, gladly, already done.
Hope for the best. Work towards the best. Try all avenues.
Prepare for the worst. Plan on how to enjoy yourself even if you never feel better.