In a chronic disease, there are also phases when, fortunately, things get better, when the disease is hardly felt at all, or at least not too much. After several months or even years of ups and downs, the disease finally stabilizes at a satisfactory level. Although the symptoms have not disappeared completely, they remain contained and manageable. At last, you feel more in control of the situation and can make plans that will not be changed or cancelled at the last moment because of the disease. And that feels good!
Getting better (finally)
Getting better when you have a chronic disease does not necessarily mean being cured or even being in remission, without symptoms. “Better” is a relative concept. One feels better in comparison to one’s previous state, which may not have been great, but which may also have been okay. Getting better, however, often implies having gone through a phase where things were not so good, really not so good. Otherwise, it is difficult to say that things are ‘better’. You can’t really appreciate it…
For me, getting better means having more energy and more stamina, being able to do more activities while not needing as much rest. And that feels really good. It’s very nice to get better, to feel good, not too tired, in shape actually. When the phase during which you were less fit lasted (too) long, you almost forgot what it meant to get better. The phases when you feel better are thus filled with a constant wonder of what you can do, and you are filled with joy and pride of what is possible. Being able to walk to the shops again without a wheelchair always gives me great pleasure, and I enjoy it all the more because I know that it was not always possible and probably will not be possible all the time.
Savoring this phase
These moments when you feel better need to be lived fully, to be in the present moment to savor them without the thought of the moment when it will be worse haunting your mind. Indeed, these moments when you are doing better can easily be tarnished by the prospect of those when you will be worse off. Conversely, it is also the prospect of those better moments that illuminates those when you are not doing so well.
When you are better, there is always this worry, this doubt: When will it come back? Because, probably, it will come back, this phase when things are not going so well, and each effort will require much more energy. You know it, even if You don’t hope for it. There is this doubt, this fear of disappointment, and at the same time, this hope that maybe, this time, it’s the right one, this time, it will really get better, and it will last! Hope is life, as they say!
Over time, I have learned that living with a chronic illness also means learning to savor periods of improvement fully and completely. Because they are also a full and complete part of the disease. I learned to enjoy what I could do and to adapt my plans and desires to my shape of the moment.
When I finally got better after several really difficult years, I really enjoyed it, but probably not as much as I should have because it was worse again a few years later. Since then, I’ve learned to enjoy the moments when it gets better, without taking them for granted because I never know what the disease will bring, even if it’s now quite stabilized than when it started. And you, what have you learned from the moments when you are in a better shape?