The most invaluable 'trick' to dealing with any chronic illness is the ability to adapt.
The hard truth is that you are going to continually deal with changing circumstances - that you have no control over.
Some people deal with illnesses that progressively get worse, without the relief of any up-spurts. Others are truly on a rollercoaster ride with periods of worsening symptoms mixed in with periods of reduced symptoms or, even, remission. No matter what your situation, any of the above will require you to constantly adapt to the changes that come about.
Any interests, passions, or hobbies will either have to be modified, changed, or abandoned (in certain ways).
This is when you will hear people tell you: "But at least you can do ______", or explain that there are other ways to still enjoy those interests, you can still enjoy being a spectator rather than an active participant - and they are right. They are absolutely correct. It is always important to keep perspective and count your blessings.
Absolutely.
BUT - what they won't tell you, what no one can fully explain, is how these adaptations will make you feel.
On one hand, you will likely feel incredibly blessed to still enjoy the life luxuries you love. On the other hand, you may experience some sadness, disappointment, even resentment and anger. It is that strange combination of being happy for what you can do while also missing what you could do.
Some common examples are athletic injuries. If you have a close call and nearly die from some stunt on a snowboard, but only break your leg instead. Even though you are incredibly happy that the accident wasn't worse, it still feels kinda crappy when you head out to the mountains with a group of friends and have to just sit back and watch them boarding all day.
Or when you can't have kids, but your best friend has a beautiful baby. You can feel 100% thrilled for your bestie, and you will love that child to no end, but you still can't help feeling sad for your own sake.
Well, tonight we got to attend a really beautiful wedding.
I love weddings. LOVE them. I was always that girl who was the first on the dance floor (once the guests were invited to dance) and one of the last to leave. Dancing is one of my big interests. I had some dance training for about 8 or 9 years (ballet, tap, hip hop, breakdancing), I took courses in Uni, and spent most of my single days in places I could dance - two-stepping, swing dancing, salsa dancing, jive - I loved it all.
Unfortunately, like volleyball, like softball, even half of the poses in yoga, running, hiking, like various other athletic activities, I have had to adapt. Since 2012, when I first experienced the symptoms of arthritis, my body has prevented me from continuing all of these passions. It isn't just a small ache or some muscle weakness, it is intense and sharp and can be debilitating. And it is in my hips and SI joints, shoulder blades, spine, and ribs (plus a little in my knees and wrists). Sometimes an activity is worth a week (or more) of this sharp pain, sometimes it is not.
So I focus on being a spectator. I watch others play sports. I watch other people dance. I tone down and modify all of my activities. I have found a way to enjoy an activity without it causing detrimental effects on my body.
So tonight, I danced in my seat. I sang to every song and swayed to the beat and even played air piano during some keyboard riffs. I was sad... Undeniably sad... that I could not bear the pain if I got up and danced the night away... But I also never stopped smiling.
How can I explain how much I truly enjoyed myself... even though it killed me to sit on the sidelines?
I guess what I am trying to say is that you are ALWAYS going to miss something. You are always going to feel like you lose bits and pieces of yourself, of your identity, when you have to give up, or modify the way you do, something you love. There will always be a part of you that HATES what has been taken away... A part of you that misses who you used to be... and that is okay!! It is very normal! But it is also vitally important to figure out a new way to enjoy those passions without actively engaging in them.
It takes time.
It takes practice.
It takes creative thinking and encourages versatility and flexibility.
It is possible.
It is possible to have that stupid smile on your face, the one that's plastered to your expression when you are having the time of your life, while being silently tormented at what you have lost.