How I Go About My Day with a Long-term Chronic UTI (thought to be Interstitial Cystitis)
this blog, you can read about what happened at My Story). While I'm managing my pain symptoms, getting random anxiety attacks, and recovering slowly under the natural treatments, I get asked often, "How do you go about living your day?"
Is Homebound Living Boring?
Yes and no.
Each day is very routine because with a constant feeling of a UTI, I'm physically too drained
and mentally too exhausted to go anywhere. If you've read my old posts, I pretty much was
confined to a wheelchair since June-ish from severe bladder pain and Dr. Michael Hsieh, a US urologist in Washington DC, found Quinolone-antibiotic-resistant in my bladder, which you can
read at my DNA Next Generation Urine Testing posts. The bladder pain has improved drastically from Traditional Chinese Medicine, which I wrote on my old post Traditional Chinese Medicine for UTI Pain). Today, I'm able to do short walks around in my home, but I mostly stay sitting indoors. I do a few gentle exercises like stretching and deep belly breathing that I learned from
my pelvic physiotherapist in my home. I'm thinking I should eventually hire a Yoga practitioner
into my home for gentle Yoga private lessons, or do gentle exercises in my home gym or
swimming pool/jacuzzi. But because of this whole UTI saga, I am now too scared to immerse
myself into a
using old photos from last year when I was healthy, I don't want to scare you with gross photos
of how I look like now in a swimsuit, I'm at 85 lbs because of the restrictive IC/Candida/Alkaline
diet and look like a walking skeleton -- my bony photos are on my Instagram).
only for medical appointments like pelvic physio, massages, or doctors. I'm unable to shop for groceries so my family members do that for me with a list of my IC diet foods. I haven't bought
any clothes or make-up because I don't have the physical energy yet to walk around a big shopping mall. Being homebound isn't as bad as it sounds. I have everything I need at home - video games, chat apps, a private swimming pool and jacuzzi, a private gym, TV with cinema sound set-up,
books, my blog and video/photo editing software, board games, a music sound system, art
supplies, and lots of cooking ware.... so it's not as depressing as it sounds when I say "I never
leave my home." I actually like it better than going out. I'll have classical music on while I'm sketching, and a friend talking to me through WeChat or Skype.
Do you keep a bladder diary?
Yes, everyday since March 2018. This is how I track my progress of urinary frequency and bladder pain. I write down what foods I eat, what liquids I drink, what supplements I take, and my
symptoms daily. Then I fine-tune my liquid and food intake if I notice that there are days that
hurt more due to a supplement, food or liquid.
How do you see friends?
At first, I was very isolated and lonely when I got this forever-UTI back in February. I talk about
how my life completely went upside-down on 8 Ways My Life Has Changed. I didn't go out to
see friends and RSVPed no to all parties and events because of my pain and frequency. But when
I started opening up about my disease to some of my friends last month, it wasn't as challenging
as I thought! For the past 5 months, I told everyone I was "just very sick" and people stopped
calling and talking to me because I was, in fact, the one who shut people out! Once I came out
about the truth on my UTI/IC thing on Facebook, my friends have been a mountain of support. My closer friends wanted to visit and chat often, and offered to shop and cook for me. I have visitors
over 1x - 2x a week, and the bonus is that we all save money by hanging out in my home.
I wake up around 11am or noon everyday. I check my emails and social media -- on my personal account, and on my separate Vancouver UTI account. I play with my 2 chihuahuas, and then fill
the day with blogging, drawing, or chatting on WeChat, WhatsApp, Facebook, Instagram. I look
for movies to download so I can play them on my TV -- I have this weird TV called a SmartTV which can go on the internet and play/stream movies and play online games, it's kind of like having
a giant smartphone. I didn't buy it, I got it for free from my mom's friend. About 2 - 3x a week, I research as much as I can about Interstitial Cystitis, Chronic UTI and Recurring UTIs and bookmark the blogs, articles and websites so I can save them for future reading. I do my supplement and
healthy foods shopping online through Well.ca and Amazon.ca. I also shop on eBay for pretty
home décor pieces and electronic accessories that are super cheap from China. I also spend a lot
of time subscribing to contests, I won a little over $2000 in products from contests because I excessively enter them. I also hop onto SoundCloud to listen and discover songs; I spend a lot of time creating song playslists on there. This is so that when visitors come over, there will be soft
jazz or classical music playing softly in the background. I also borrow library e-books to read. I prefer to read physical books, but I don't have the energy to walk to a library, so I have to borrow online. Sometimes I give myself a facial, by ordering a new scrub or mask online to try. If I start
to run out of things to do, I'm planning on learning a new language online and starting up a
Pintrest. Every evening, like clockwork, I watch a movie or anime from 8pm - 10pm, then I hop
onto an online video game with my gamer friends from 11pm - 2am.
Mentally:
It's not always rainbows and roses, there are days where I feel utterly depressed that I'm not at
normal health. I suffer anxiety attacks of always wondering if or when I will recover. When there
are days the frequency or bladder pain is worse, I feel terrified and can't move my body because
of the physical and psychological trauma. There are days where I feel better, and then there are
days where I feel like my condition has gone backwards, either from something wrong I ate in
the diet or mental stress. I don't take any anti-depressants or anxiety pills because I don't want pharmaceuticals to mess up my brain, so I mentally calm myself down by listening to music or reading. There are some mornings where I wake up and sigh "This again", and other mornings
where I wake up and burst into tears. I haven't been "truly" happy since this happened, so I just
take each day as it goes... and hope for the best.