Friday, May 19, 2017

Facing Forward: Ava

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!
Name: Ava
Location: Charlotte, North Carolina
Diagnoses: Lupus, fibromyalgia, early onset osteoarthritis
Age at Diagnoses: 26 / 25 / 24 – I’ve received one diagnosis a year for the past three years

How are you currently treating your conditions?
I’ve recently started taking an immunosuppressant for my lupus.  I’ve been taking a muscle relaxer for my fibromyalgia over the past year, which helps me to sleep and seems to “reset” my muscle tension overnight.   I also take a beta blocker because my chronic pain has significantly increased my anxiety levels and blood pressure.

I have a few different techniques for managing my joint and muscle pain.  I take NSAIDS (nonsteroidal anti-inflammatory drugs) as infrequently as possible, which usually means once or twice a week.  I like to use Icy Hot pain relieving liquid (especially the no mess roll-on applicator) and warming HOE muscle rub from The Fay Farm (which is very calming) occasionally for my neck pain.  I liberally use heating pads and ice packs and I typically take Epsom salt baths every day.  I’ve also found that brief physical activity can help with brain fog.

Perhaps the most important part of my treatment plan, however, is resting often and not being too hard on myself.  Additionally, I spend a lot of time with my pet budgie, who is very loving and makes me laugh a lot – which goes a long way in helping me to feel better.

What are the biggest challenges you have faced since your diagnosis?
The hardest thing about my chronic illnesses is that I never get a break from them.  I never have a week or even an afternoon off from my pain.  The constant weight of my pain and fatigue makes it extremely difficult to remain positive and hopeful at times.  Thankfully, my spouse, family, and friends are always there to encourage me when things are at their worst.

Furthermore, being sick all has taken away some of my greatest joys in life.  I can no longer work full time, sleep in on a Saturday, or finish simple physical tasks by myself.  It’s been a huge learning curve for me to accept my limitations, especially because I love to travel and see new things.  Being happy when I’m often confined to my home is something I’ve yet to master entirely.  It is hard to find contentment in a drastically different lifestyle that you never wanted or expected.

What are your favorite tips and tricks for managing everyday tasks?
My number one strategy is making a plan and giving myself a lot of time to complete it.  It might take me a few days to prepare for a trip or outing, since I accomplish most things in very small increments.  For example, it might take me an entire day to do the dishes.  I’ll unload the first half of the dishwasher in the morning, the second half in the afternoon, and perhaps in the evening I’ll finally manage to wash the dirty dishes and load them.  Nothing happens quickly for me anymore.

I’ve automated and optimized my cleaning routine as much as possible and I’m always looking for new ways to improve it.  This can be anything from using self-cleaning products, such as toilet pod or a Roomba, to stashing cleaning supplies throughout my home (so that I don’t have to expend energy retrieving them).  I also make an effort to clean things as I go because it usually is more work to clean up a mess after it has been sitting for a while.

How do you manage to keep facing forward every day?
Having a personal blog has been life changing for me because I’m able to connect with like-minded travelers and fellow chronic illness sufferers.  It is my main motivation for getting out of bed each morning.  I love receiving feedback that someone enjoyed my post or that they understand what I’m going through.  The online community I’ve found is incredibly supportive and inspiring.

I also try to focus on the positive things in my life as much as I can.  I create lists of things I’m thankful for often, such as four good things that have come from my chronic illnesses.  I started doing this after reading what Jodi Ettenberg had to say about practicing gratitude daily in her post Learning to cope with chronic pain.

Lastly, receiving plenty of emotional support from my friends, family, and pet bird really helps me get through each day.  My bird, Koopa, is with me all day – playing, singing, cuddling and keeping me entertained when I’m feeling down.  For me, having a pet is vital to staying positive with chronic illness.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
When I was diagnosed with early onset osteoarthritis, I would have told myself to calm down because I’d need my strength further down the line.

When I was diagnosed with fibromyalgia, I would have told myself to find another doctor.  I was living in Germany at the time and I was afraid to afraid to seek out another doctor.  But the one I was seeing wasn’t helping me and resulted in unnecessary pain and suffering. 

When I was diagnosed with lupus, I would have told myself to focus on the bright side.  This diagnosis would bring me into the lupus community - I wouldn’t be as alone in my fight against chronic illness.  I’d get the correct treatment and things could finally start to get better.

Do you have a blog you would like to share?
Yes, I blog about travel, expat life, and chronic illness over at My Meena Life.  You can find all my chronic illness posts here.

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1 comment:

Rick Phillips said...

Lupus is such a difficult condition. Thank you for the inspirational introduction via the internet of course.