Chronic pain brain took over my head as I began brainstorming how I would use the prompts from A Chronic Voice this month. With a heatwave beginning, a super moon on the way, and my abdomen under attack, I gave up writing a themed piece and am going to blurt out whatever comes to mind!
Sheryl’s prompts for the month of May A Chronic Voice linkup are foreseeing, panicking, upbringing, accessing, and soothing. With that said, let’s get this party started!
My Chronic Pain Brain is Foreseeing…
Unless the weather stabilizes, I foresee additional pain this month. This week is the second heatwave to hit this spring that has forced me to treat my spine with PEMF treatments all day long. In the years before using this pain relief device, the swelling I experienced along my spine would render my body and mind completely useless. I experience this type of flare from the pressure that pushes and holds the heat in.
I foresee more #pain! #chroniclife #supermoon #heatwave
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If fighting that battle wasn’t enough, there’s a super moon on May 7th!! I began tracking cosmic events a few years ago, after being knocked out for the entire day during a solar eclipse. What I have noticed is that super moons and solar/lunar eclipse trigger severe swelling around my spine near the base of my neck. So yes, unless the weather returns to our average temperatures I foresee a lot more pain.
Something else I foresee is a lot of posts about fibromyalgia and psoriatic arthritis on my blog! May 12th is Fibromyalgia Awareness Day and it is National Arthritis Awareness Month. I was diagnosed with both in the fall of 2003 and will do my best to bring awareness to both this month.
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What I am Panicking About
It may surprise you that I am not worried or panicked about the virus. With abdominal adhesions strangling my bowels and an HMO that says nothing can be done to fix or stop it, I have already received my death warrant. For me, waking up every day is a gift. Good days are for living life, not hiding at home.
I #panic about losing my #independence 🥶 #mobility
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I panic about losing my independence. With an additional intestinal blockage caused by adhesions and how a band of them pulls at my spine, the distance I can walk has decreased significantly.
Having to be pushed in a wheelchair when pain prevents me from walking is something I accepted when my body would experience reprieves for weeks or months at a time. But not having a reprieve now for six months and the pain only getting worse when I try to do things the way I did just last year, I am panicked that this is my new normal. I hate being dependent on others.
The problem with using a manual wheelchair is that I am not able to get around in it myself. It’s time for a powered wheelchair, which has prompted more panic over how long I will have to wait until my husband and I can afford to purchase one.
How My Upbringing Prepared Me for the Lockdown
I credit my upbringing for not feeling panicked about the pandemic. To be honest, having to stay home and wear a mask in public is nothing compared to the mask I wore to hide the physical and emotional abuse I endured from my father from a young age and until I removed him from my life as an adult. That was hell, this is not.
Wearing a #mask in public is nothing compared to the mask I wore to hide the physical and emotional #abuse I endured from my father
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What I Want to Continue Accessing
If you follow me on social media, you probably have seen my posts in the past month about my food delivery curse. Whether it be groceries, fast food, or restaurants, my orders are never correct. Something I am enjoying having access to during the lockdown is that in addition to deliveries, many restaurants, stores, and fast food establishments are offering curbside orders. This I love because if they get it wrong, I can have it fixed and addressed right there and then. So my hope is that curbside delivery will continue at places that didn’t offer that service before the lockdown began.
My Pain Brain is Soothing….
Believe it or not, but there are times when experiencing brain pain is soothing. I should probably clarify my definition of pain brain to this post. It is not my brain that is in pain, but that my body is in so much pain that it interferes with how my brain works. Instead of being extremely focused and able to mentally attack one project after another, I, for lack of a better way of explaining it, just don’t really give a $h!t. There is no panic, anxiousness, or worry. Just a strange calmness that can only be described as feeling like time has stopped and I am waiting for life to begin again.
#Time stopped – I am #waiting for #life to #restart.🤔 #chronicpain
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Well, there you have it, ramblings from my chronic pain brain! I hope it wasn’t too painful!
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Hello again Cynthia,
Cingratulations on writing such a briliant post, it is one that I was able to deeply resonate with, as someone living with chronic illness, and pain. This month, has been one that I too have been foreseeing pain, with every morning being met by pain first thing upon waking. Losing what independence I do have, is also something I find I worry about, as much as I look foward to being able to go out again, it’s also met with some trepidation as I don’t know how my mobility will be loke after being stuck in for several weeks.
Hope you are doing as well as can be today!
Take care, Rhiann x
Thank you Rhiann! I am worried about my stamina once able to go out again too. I am definitely noticing a lack of it. Here’s to hoping next month is better! Cheers!
Hi Cynthia,
I really loved this part of your article: “For me, waking up every day is a gift. Good days are for living life, not hiding at home.” This really resonated with me. It really is a gift waking up every day, pain or no pain. Although I honestly can’t remember waking up in no pain in the last decade, but that’s another story.
Like you, I also worry greatly about my loss of independence. I started using a wheelchair in 2009 whenever we left Taiwan to see other parts of Asia, but it has been very hard. International flights leave me at the mercy of my ‘pusher’. It has grown unbearable for me to travel internationally now. It’s a huge ordeal and it feels like I am just dragging my broken body from Asia to Canada each time to be sick in a different place.
I also have major issues with a manual wheelchair. I can barely pick up my cat because of loss of upper body strength. It’s impossible for me to push myself, so I have to rely on my husband. I’m still working up the courage to let a friend do this for me, but it’s SO HARD. I don’t want them to have to do that or see me like that. I’m glad that someone else wrote about it and mentioned it. When I see other advocates out and about in their chairs with their super cool wheelchair grip gloves and they’re all smiling and seem to be getting around a lot easier than I am, I often wonder why I never see the folks who are like me – the people who can’t do that! So grateful to read your entry today! Sending gentle hugs from Taiwan!
You bring up another assumption that I too struggle with. People assuming that everyone who uses a manual wheelchair can maneuver it themselves. I too am reliant upon my pushers. I’m thankful for them and appreciate what they do for me, but I want my independence. Hugs from California!!
I’m with you on foreseeing pain. My migraines have been going nuts, every morning severe pain. And the fibro has been worse because the vertigo makes me laid out… and fibro doesn’t like you being in one position for long periods of time. It is has just been a crapton of pain. But this is something I know well and I have the resiliency to cope with it. I don’t Like it. I have limitations with it but I can deal. We all endure, eh?
Ugh, sorry that you’re foreseeing pain too. Fibro is such a nasty beast. It wants you to rest then punishes you when you do. We’ll get through it, even if it hurts like heck.
I’m sorry you had to endure such a tough childhood. Losing your independence is difficult. I’m four years in and still find it hard to accept that I’m a wheelchair user, particularly as my disability occurred rapidly. I was told it would take 8 weeks for me to learn to walk again, I thought that sounded like a lifetime, but it turned out to be the rest of my lifetime. It’s hard but not impossible. I hope the weather doesn’t make you feel too bad and that the sun will be bringing more peaceful and less painful days again soon x
Thank you! I really hoped to not reach this point so soon.