I thought that the yearly Fibromyalgia Awareness Day 2014 may be a great time to reflect on my previous year’s experience living with fibromyalgia. Then write about things I want to do or see happening in the current year. Here’s last year’s post.
Living with Fibromyalgia 2013
Personal Updates for 2013
2013 was kind of a lousy year for me for many reasons.Our finances took another hit, we still don’t have a family doctor, and my health has gotten worse. I’ve been pretty much a shut-in and haven’t left the house since I had to go to the walk-in clinic in February to get prescription refills. Worse, the doctor I saw last time *refused* to refill my Nucynta, simply because he could and that I have no regular family physician. Yes, I was (and still am) furious to say the least.
I’m currently existing on way too much Naproxen instead of an actual pain medication. OTC Tylenol 1 isn’t enough, gives me nasty constipation and makes me feel like a zombie. While I *know* I’ve got to find a new doctor, the past 2 years of looking has been nothing but a terrible, nightmarish experience. I’m resigned with the expectation of more rejection and misery. The building that the walk-in clinic is in has 4 doctors that are taking in new patients,
but it’s a long process ok, I’m procrastinating. See the previous sentence.
Like many with FM, a simple outing is extremely exhausting and can lay me out for 2-3 days after the fact. Plus I have to walk to the walk-in clinic. It’s uphill, not too far, but far enough there has to be a really good reason to go before I’d actually do it. Having to pick a day where I feel the least fatigued but yet with enough focus. And what I mean by that is – on a day where I am capable of more than staring at the wall. Due to FM symptoms, my medications and the whim of Mother Nature and the Universe (aka The Powers That Be).
There were several months where I seriously considered going to Emergency. I didn’t do it because it’s at least a 6 hour wait sitting on very uncomfortable seats while enduring noise I cannot avoid (I wear ear plugs 24/7) until you see a doctor who 1. Doesn’t believe in FM or that your pain is “real” or 2. Tells you to go see your family physician (which doesn’t exist). So one suffers in silence, trying not to cry because that makes it all so much worse (pain wise).
Two weeks of the month bless me with guaranteed pain flares. Extreme pain (nerve, joint, muscle, you name it) and swelling 3-5 days before my monthly menses. This usually involves several days of painsomnia. Followed by a week of sleep debt and recuperation – all I do is sleep. The sleep part is almost worse than the pain. So exhausted that I cannot stay awake or asleep more than a few hours at a time. Which makes me completely useless, frustrated and annoyed.
So my usual pain cycle continues. I have noticed that the lack of Nucynta has left me with far more nerve pain than I ever noticed before. Which then makes me wonder if Lyrica is helping me at all. *sigh* No point stressing over it without a doctor to discuss it with.
However, things are not as dark and dreary as it may seem. I’m keeping a far better record of my medication (when I am taking it or due to take it), symptoms, sleep (or lack thereof) and a journal of how I’m feeling. It has really helped me out! Especially when Fibro Fog has me feeling #confuseless, staring at walls.
In 2013 I started using FibroMapp, an Android application for smart phones and tablets. I highly suggest you use FibroMapp! You can keep track of all your pain symptoms, what kind of pain you are in, how bad that pain is and how it effects your day-to-day life and activities. It keeps track of medication, your sleep and will show you how much sleep debt you have. There is a journal and a big Flare button to declare when you are having pain flares. You can comment on all of it, but best of all, you can generate a printable (or send via email) report for you and your doctor to go over. Definitely worth your while.
The Slip and Fall Incident
In Feb 2013, my husband slipped on some ice at work and suffered a nasty hairline fracture in his right ankle. Unfortunately, the tissue damage from that fall was far worse than the fracture itself. Over a year later he’s still suffering a lot of pain and still limping. He is still on Worker’s Compensation and won’t be returning to work any time soon. Of course, he’s making less money on Worker’s Comp and that makes things even more difficult than before, financially.
There is a good outcome of his breaking his ankle. Worker’s Comp is putting him through a 2 year course of his choosing. Currently it looks like he’ll be going to a local Trios college (within walking distance) for computer programming, network administration, or computer repair. He’s leaning toward programming, which is a Big Deal to me because it would help me so much in my online work as a freelance SEO consultant, and blogger (which we could hardly live off currently lol). I’d personally love to learn programming! It’s something I tried and chickened out of in the late 90’s and something I regret not following through with to this day. So, I could help him and learn with him. Exciting, but still in air what he will decide on.
So, two years from now he’ll be working in a field he loves and will be making more money than he did before. Things are looking up for us, finally.
As for me, I’m taking a few online courses that will enhance my knowledge in SEO, php and web design for WordPress. I find being busy is a great way to be distracted from one’s chronic pain. Unfortunately, my “focus time” is limited (see The Spoon Theory). I can find approximately 2-3 hours a day where I have enough energy and focus to apply to the things I really want or need to do. There simply aren’t enough hours in the day as it is, let alone finding “focus time” to do it!
Such is life. Regardless of the negative things that have happened in this past year, I remain with a positive outlook on life and the future. I’m still a half-glass-full kinda gal who retains her sense of humor, even on the #verybadpaindays.
On the To-Do List for 2014
- Find a family physician
- Consider getting off Lyrica, maybe Cymbalta too
- Lose weight (Thanks Lyrica!)
- Find some kind of exercise I can actually do on a regular basis
- Get help to manage my time so I can do more, work more
- Make more money online
Light and Love to you <3
Share your 2013-2014 journey while living with Fibromyalgia. What are your current challenges?
Also see Canadian Events for Fibromyalgia Awareness Day – there’s some great graphics you can use to share too.