If you follow me on social media, you would have seen that this
week has been quite a challenging one for me - especially with regards to my
Crohn’s and how I’m maybe not handling it in the best way this time. It’s an
emotionally draining disease: the rollercoaster of feelings you can have in
such a short space of time is quite overwhelming and this particular flare up
seems different. I don’t know why, it just does. In all likelihood it could be
down to the fact that I currently have no ‘normality’ yet; I’m still in a
settling in period. My mundane routines are shot to hell what with the
relocation from London, being a newlywed, going back to work after Maternity Leave
and the mum-guilt associated with that. My support network is still there, oh
for sure. But my personal go-to coping mechanisms aren’t necessarily.
I guess I just don’t feel like I have that guarantee this time,
where my mind doesn’t need to flap so much (I have zero reason to think things
won’t be ok and I am more than aware at the irrationality *eye rolls at self*) But
for instance, these are the things I worry about…how I haven’t been back at
work long enough to feel like I can prove myself, e.g. when my insides go
mental don’t worry guys! Because when I’m
healthy, oh I’m grand. Or to know how to function as a Mummy when really poorly.
Or worrying about WHAT IS THE ACTUAL PLAN WITH MY CROHN’S. And when you’re
sitting in a hospital bed on your lonesome in the middle of the night, you can’t
help but let your mind wander.
There just seems so much uncertainty and for a woman who likes a
plan…this one’s tough.
I spoke with my IBD nurses at the hospital and they recommended
reaching out to the psychologists here. I’ve always been very vocal how for me
counselling has been a great help – I’ve tried a variety over the years from
one-to-one youth counselling, to a more general CBT approach and also group sessions
for people with other chronic conditions. And now I feel that I need another
outlet. For who I am as a person now. As a mother. As a wife. As a new West
Country bumpkin. Where do I fit in and how do I learn how to manage with my
Crohn’s for the current set up? Excuse the wanky term, but that’s a ‘journey’
that I’m going to have to go on and hopefully find out some of those answers.
I need to learn that only I put pressure on myself to be worrying
for everyone one else in the world. But hey, once a worrier! But also that it’s key to
know it’s all right that there’ll be things out of my control and everything
will be just fine whether I’m in hospital or not. Whether I sit in this bed for
another two weeks or I’m allowed home tomorrow. And that I’m also no use to
anyone if I don’t allow myself time to get better: do as I’m told. Do as the
doctors say. Rest when told. Let my body do its thing. Because my Crohn’s alone
looks to be laden with many more hurdles and challenges over the coming months
and I need to be ready for that. And it’s something I’ll be sharing with you all
for sure.
From a more general standpoint as it stands with regards to my
care, we are yet to manage a full meal. However we have had the camera up the
ass today – wonderful Friday morning activity – and also had another x-ray to
see what the bloody hell is happening inside me. There is a pesky 30cm section
of small intestine that was found back in Summer 2015 and it was something we
were ‘keeping an eye on’. Well the eyes have been subsequently peeled and
nothing has changed so… but herein lies the problem. 30cm is a sizable chunk of
small intestine. We don’t just whip that out willy nilly now guys. When
discussing the large intestine, there are slightly more options surgically
speaking – in that you can actually take it out completely if needs be. But when
it comes to the unusually named small intestine (bearing in mind you have
around 6m), you can’t live without that. And the more you chip away at it with
resections, the more you leave yourself susceptible to future complications. Nutritional
issues, feeding through tubes, being open to more serious diseases. Lovely
stuff. So we’re tackling this from a medical point of view first. We’re mixing
up the meds. We’re changing the doses. We’re hoping that I haven’t indirectly
been overdosing on azathioprine as my weight has dropped. To quote the surgeon,
is the resection off the table? No, not particularly. Is it something that
requires urgent intervention this week? Also no.
So it’s time to get my game face on. It’s time to get my headspace
sorted. Take those 3 minutes a day to meditate and zone out. To plan whatever
is within my remit to prepare for.
And know that the rest will sort itself out.
X