disability · Personal

Still Struggling, Medically and Mentally

I’m not looking for sympathy here; I’m just putting this out there, seeking kindred spirits and maybe some advice. Maybe I don’t want advice, but instead just want someone to read this and understand, or at least try to.

I was diagnosed with fibromyalgia in February, but I’ve been battling its symptoms for much longer than that.

When I wake up every morning, it’s common to lose 1-3 hours face-planting at my desk. These narcoleptic episodes are absolute time thieves. It’s incredibly difficult to achieve anything when I’m so fatigued, tired, exhausted, and just a blink (literally) away from falling asleep. I’ll blink, close my eyes, and wake up half an hour later.

I have multiple conditions that cause me a lot of pain, and the amplification caused by fibro is sometimes more than I can bear. The rheumatologist (who told me she can’t really help me) informed me that people with central nervous sensitivities (like fibromyalgia) shouldn’t be on narcotics like hydrocodone, but I need to take at least one almost every single day for my back. I don’t know if she was informed about my “legitimate” pain-inducing conditions but I often don’t know if I can function without them. At least I’ve recently made it without, sporadically, for a few days.

I’ve been exercising using DDPY (Diamond Dallas Page’s unique brand of yoga) and I think it has the potential to really benefit me, but it’s really slow-going right now. I have noticed some increases in flexibility, but as I’m limited to the ‘Chair Force’ series right now, I can’t burn very many calories. Also to thank for that is my beta blocker, which is limiting my pulse and preventing me from entering the “fat burning zone”. I’ve maxed out at around 84 bpm so far while exercising, which isn’t anywhere near the target of 115. I do feel out of breath by the end of the session, but I don’t know if that feeling is sufficient to induce weight loss. I do know that the numbers on the scale haven’t changed at all yet. We bought an annual subscription to the DDPY app and highly recommend it. It’s pricey but so far it has definitely been worth it. It’s the only kind of exercise I’ve been able to tolerate and, for the first time in my life, I encourage our daily exercise sessions.

I need to create more and I can definitely feel the lack of creativity in my life. I’ve been spending most of my conscious hours playing video games (Elder Scrolls Online, Guild Wars 2, and Overwatch) and, before you tell me how bad that is, please note that it’s one of few activities that engage me and keep me awake, that guide my time spent rather than being a blank page that becomes dizzying the longer I stare at it. It’s really hard to focus without some kind of guideline or obtainable goal, and I am really bad at managing my time. Add to that the fact that both of the MMOs are in social settings, enabling me to talk to people ranging from friends to strangers, without feeling alienated or anxious. I don’t often seek conversation outside of games, and often go far too long without talking to my friends (which I always regret but struggle to rectify), but for some reason the ability to talk to people in text, semi-anonymously, in guilds that encourage good behavior, allows me to open up.

I’m honestly shocked that I can keep writing this. It’s [obviously and sadly] been far too long since I’ve updated my blog and I woke up less than an hour and a half ago, so it’s rather miraculous that I can do this at all. Forgive me the momentary indulgence I’m allowing myself by sharing perhaps-too-much about myself. I think it’s the only way I can write at all right now.

I hate to sound ableist, but I feel like I’ve become so “stupid”. I feel like I have to wade through dense, muddy waters just to have coherent thoughts, and expressing them is even more difficult. The ‘doldrums of depression’ image fills my mind again. I know this is part of fibromyalgia, often referred to as ‘brain fog’, but that doesn’t make it any easier to cope. I often can’t figure out where the fibro ends and the depression begins. Are they just welded together now and indistinguishable from one another? I know fibromyalgia amplifies depression, but mine has been so bad for so long that it’s really hard to tell what’s what and which way is up.

To top all that off, yesterday I was so violently ill that I threw up for ten consecutive minutes, due to an unknown cause but possibly my new expensive beta blocker. I called my doctor and he said to discontinue it, at least temporarily, and it made me mad that we had just filled it because it’s the maximum copay my insurance will charge me for a prescription. Our medical insurance is about to take a major turn for the worse and it’s going to cost us so much additional money. I feel like I really need to figure out this disability thing and get in touch with another disability lawyer (this time one who won’t refuse to help). Maybe the extra money would help us keep our heads above water, even if it just amounts to help with medical costs.

It’s so hard, but I promise to keep fighting. I’ll keep trying harder every day; I’ll try to actually get into my workspace and do something, anything, that I think is worth a damn.

Thanks for reading.
Take care of yourself and practice gratitude, and I’ll try to, too.

baldur face

I’m grateful for this little guy and for my Mama who bought me that book (which I admit I need to utilize more).

Also, this guy:

best shadow pic ever

And this gal:

lyra side face

and my memories of my baby:

NicolePiar_Isistogether again isis pendant amethyst

and also my Mama:

mama and me kid swinging in arms

and of course my hubby, who never lets me photograph him.


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