The RA Passenger: Time to Raise Awareness. {poetry}
{source}
After nursing and losing my mother nearly seven years ago, I was diagnosed with rheumatoid arthritis.
The saying ‘you cannot tend to others until you fix your own mask’ as one does on a flight when oxygen is needed is most certainly true. Since then I went part-time, navigated my way through various treatments, and found a better me. This disease is part of me, it is my reminder to fit that mask. It is key to be an expert in your own disease.
The pathway for folks with rheumatoid arthritis is full of challenges. From feeling desolation to feeling in control, wellness can still flourish regardless. Remember, no doctor understands you like you. Be prepared to gently challenge the ones making decisions about your body. It is your life.
***
It catches you out, not an obvious guest.
As much as you try, it’s harder to rest,
from the pain, the swelling, the insomnia, the heat,
attacking the joints from your head to your feet.
The pain. It’s like slamming a door on a limb or a joint.
Constant, incessant, deforming… what’s the point…
… in living? What is the future? Unable to function
and feeling like you have no compunction.
Depression hits.
Time to act and time to fix.
Hot mouth, fuzzy head,
feeling you can’t get out of bed.
Sore, itchy skin.
Feeling organs inflamed within.
This disease is not as people think,
it’s systemic, it’s serious, it makes your heart sink.
You have tried turmeric, herbs and oils,
yoga, physio, hours of toils.
Meditation, exclusion and fasting
yet nothing for relief, just pain that’s lasting.
All day, all night, the feeling of defeat.
Splints and pillows, ice and heat.
Then you meet a clinician who gives you a goal.
You get started on treatment to begin feeling whole.
You lost time, yet it takes time to find the Holy Grail.
Yet during a flare-up or infection, even that will fail.
A boost with a steroid, temporary relief.
Anything to damp down this soul-robbing thief.
Fear looms dark, threatens to get in the way.
Keep going, take the drugs, feel the fear and do it anyway.
Medicines for RA are hardcore, so demand some respect.
We are hopeful one or two will have full effect.
The monitoring occurs to keep an eye.
Sometimes you’re fine, but when you’re not you, just sigh.
It’s a ballet, of benefit vs risk on the edge of a knife,
yet a dance you perform to escape this tired life.
Success! Great news! You hit a winner, so inject on time.
No matter the side effects, can we turn back time?
Time now to practice the hobbies you love,
though you may find new ones more hand-in-glove
with this passenger called rheumatoid arthritis.
When feeling better, you read up on DAS and guidelines.
Stops you from feeling on the sidelines.
Becoming an expert in your own disease,
whilst tolerating folks who often will tease.
This is your life, your body, your future, your health
You understand that remission equals true wealth.
So you study, you analyze, you seek a solution
For your work, your home, your family resolution.
Because it impacts everything and everyone you love,
For a time it seems almost a test sent from above.
The reality is, you need control of this thing.
To feel alive is the motivation you bring.
It starts with a passion to drive this trip well,
with you behind the wheel, the disease tied and fell.
Now it’s in the trunk of the wagon, with you up front.
Throw everything at it, get used to being blunt.
Go for it, shout about your condition,
go challenge and assert to get to remission.
Understand what that means and how to get there,
make sure you help others, so pass on and share.
When you feel well, enjoy the family and you,
spend time with friends who have supported you through,
through bad times that felt bleak when the dark days pervade,
and repel those who threaten your peace and invade.
The ones who judge you for not drinking or laugh to your face,
just smile, move on, they’ve not evolved to change at your pace.
We are warriors, we are determined, we are so brave.
We refuse to let this disease attempt to enslave.
Turn away from suffering, or pain, any self-doubt.
It is time to raise awareness, to really come out.
The lessons you possess show the person you’ve become.
Make it one you are proud of — you’re the sum of all parts, not just some.
***
During COVID-19, Alison Arrowsmith chose to retire and truly get herself as fit as she possibly could, after a career spanning 40 years as a nurse/account manager and therapist.
***
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