Acceptance and Home Health Care
We last left off talking about how vulnerable we feel when we become acutely and seriously ill, very quickly. It’s unfair to us when we’re so used to taking care of people and filling other's cups. That's my love language - but I always forget myself.. to fill up my own cup first so that I can take care of others AND myself.
Accepting that work is not an option
I think so many of us who have taken care of others for a living expect that we can/will continue. But in reality, for some, it can't continue. There are just some circumstances that don't allow us to go back to work.
It’s been a hard lesson to learn. Living with IBD, aren't all lessons hard ones, though? But this time, it wasn't just IBD, it was IBD + POTS. Both of which do not get along with each other when your body is in a nutrition/calorie crisis, dehydration crisis, and severe onset of another illness to pull back out from your medical files.
The lesson of humility
There weren’t just two or three or even ten very hard falls that should have taught me the lesson of humility, but there have been more episodes of syncope than I would like to put in writing, with dangerously low blood pressures. My medical team is on top of things, but it’s all been very hard to swallow.
I'm so used to being independent. I've been incredibly independent all my life. I think IBD has a way of showing us how life can make us independent through losing friends and acknowledging the loss of abilities that others still have that have been taken away from us.
Wanting to take care of myself
For the last 16 years, all I have wanted to do is prove to myself, mainly, is that I can take care of myself. Me and me only, a lot of times.
I have really good days, and then my whole day is ruined by a catastrophic fall. I cannot tell you the number of head injuries I could have experienced with all of this malnutrition, vomiting, syncope, and dehydration. Something is/has been looking out for me.
It's certainly taught me to be humble, and definitely to be patient and not rush things. That's not an option, it's a must now.
Missing out and being under supervision
I know I have to give things time, but I won’t lie. It sucks. It sucks to have to be under supervision and to not be able to even attempt to go up and down the stairs. I know this unbearable Crohn's stomach pain, excess gas, distention and a blip in my health will pass, but I just can’t help but feel how much I’m missing.
I mean, I had just recently (maybe 2 months ago) been cleared to go back to work - serving others in the ways I love most and feel most capable of showing love to others whose cups aren’t full.
If you haven't been able to tell, it's been a rough go. Independence being taken from me has probably been the ultimate sacrifice for me, besides work. But the hardest thing at the moment is not knowing when things will return to "normal", if there will now be a "normal" for me, if that's a completely "new normal", and how it will impact everything around me.
Adjusting to the changes
I guess that's a really teachable lesson when you live with an immune-mediated illness - you just never really know. I'm a person built on structure.
If that structure is somewhat altered, especially in significant ways, I have a very hard time adjusting to what may be the result of those changes.
If there's anything Crohn's has taught me, it's that things don't happen overnight, that I need to put my patience pants on, and that I need to face reality as soon as possible, or adjusting to things and acceptance will be much harder.
Does exercising regularly help in the management of your symptoms?