It’s been a while

Leila Raven Posted in General

Since I’ve written anything here. Physical and mental resources are scarce these days, I’ve been allocating a lot of them to play World of Warcraft… why all the WOW? It’s been the best pain management I’ve been able to find so far. Keeps me distracted, that’s the ticket these days to sanity, is keep the brain as occupied as it can be so it doesn’t dwell on unpleasantries… like horrible pain, distressing other symptoms, and pondering the meaning behind them.

Despite my best efforts to live in WOW, I still end up with a good portion of my time focused on horrible pain, distressing other symptoms, and pondering the meaning behind them.

It seems that whatever I have, is progressively getting worse. Usually in fibro, this doesn’t happen, things more often go up and down, there isn’t a steady slide into decline. It does happen, but usually it doesn’t involve a lot of the neurological type symptoms I’ve started experiencing. Those symptoms, are getting worse, and rather quickly for comfort.

A long with the pervasive pain and discomfort that is a constant nagging, and likes to throw me new pain experiences regularly on top of the regular daily grinds of pain. I have worsening weakness.  Weakness that means sometimes I have to struggle to lift a full glass of juice to my lips in the morning. Weakness that means sometimes I get stuck with not enough strength to stand easily, struggling to get from sitting to upright. Fun when home alone and on the toilet. Sometimes I’ll get up from the couch and foray into the kitchen for a snack, and my legs feel like they’ve run a marathon, that shakey trembly electrical feeling, like your real legs have been replaced with elastic bands and any moment you’re going to come crashing down. It’s not a feeling I’m fond of. I find the easiest way to avoid it, is not to leave the couch. Clever hmmm?

Exercise is supposed to help fibromyalgia, but there is no way I can walk, or swim, these days, walking the short bits to cars and from cars to dr.’s offices, is challenging enough.

My reflexes are affected too, I fumble more, more typos, drop things, fine motor skills are affected.

My eye sensitivites are worsening, and I have nerve related pain, in my ear/jaw, shooting down a limb…

I also find myself needing to pee more, and the complete and utter state of extreme constipation is only alterable by me drinking a heaping dose of peglyte daily, this allows me to move my bowels, only if everything is totally liquid. It’s been many many months, since I was able to have a non-liquid movement. I know, unpleasant. Trust me, not as unpleasant as being the person dependent on drinking a big cold discusting glass of peglyte and then being a slave to the toilet for a few hours.

It’s hard to do much of anything.

I’m on a new medication trial. The Lyrica did nothing for me. So I’m currently working my way up on increasing dosages of gabapentin to see if I get any therapeutic effect from it. So far all I get is massively hungry. I’ve gained 8 lbs in a couple of weeks of this medication.

The symptoms of weakness, and some of the other symptoms I have, aren’t typical of fibromyalgia. They are typical of MS.

I had an appt. to see my rheumatologist in sept. My family Dr. felt I should be seen earlier, and in my case should not wait, and shared his feelings with my rheumatologist. So I got a call and they’ve made a special appt for me next thursday, the rheumatologist is going to come in an hour or so early, 7:30, to see me. Sometimes it doesn’t feel nice to feel ‘special’. So I’ll be getting up around 5:30 to make it into Vancouver for the appt. and be clean and functional to boot. I’m going to ask about MS, and testing for MS, I’m not sure whether he’ll be able to do it, or whether I’ll have to be referred to a neurologist.

I also had a full body nuclear medicine bone scan a couple of weeks ago, and a copy was sent to him and my family Dr. so I should have some answers back around whether there is anything degenerative going on with my bones.

I thought the worrying I had fibro stage was scary, now that I’m worrying I may have MS, and/or AS, issues that are more degenerative in nature.. the scary factor has gone up again.

It reminds me of the weight gain over the course of much of my adult life… 18, gee, I’m 145lbs, I’m so fat, 20, gee I’m a 165lbs I would kill to be the skinny 145lbs again, 23, gee I’m 175lbs.. it would be so nice to be that slim 165 again.

I keep thinking I’m really sick, or this is the worse pain of my life… then wham, we turn it up a notch. the giant fibroids and the hysterectomy, those were the good old days, hell, I’ll settle for the first diagnosis of Reiter’s syndrome, a little temporary reactive arthritis, no? it’s not? it’s fibro?… okay, I’ll try and live with that. Wait? there’s more? can’t explain all of this away with the fibro.. may have additional issues? Honestly, a little severe fibro is sounding manageable these days.

Pain disorder’s suck, they’re not as fun as they sound… and wait, they don’t sound fun! I always thought, pain? no problem… take a pain pill, the right pills will take away the pain. Reality check… doesn’t always work that way, much of the worse pains we are capable of feeling, they don’t have effective medications for.

I’m kind of relieved in a way, well, torn, can’t decide if I’m happy opiates don’t work on my pain, or unhappy. It would be great to be pain free, and sometimes I think no cost is too high for that, on the other hand I don’t have to worry about side effects or addiction issues around taking narcotics.

So stuck on my couch, not wanting to get up on my feet, because I won’t fall down when I’m already laying down. Distracting myself by gaming in a world where the pain is all pretend, and if you die, you can just ressurect and keep on going, nothing can really ‘get’ you. It’s a fun place to be, and it keeps my mind from darker places.

So if I’m not around, you’ll know why, and sometimes I don’t respond, because my mind’s just not up to translating what’s going on in my head into words. Or my hands are sore, and I don’t want to type. Or I just don’t have anything ‘good’ to say, and so I don’t want to say anything at all. People write and ask how you are… and you think, do they really want to know? or do they just want to hear I’m fine.

I’m not fine, and the fine details suck, and there are a lot of fine details, I just share a small sample with the world. The amount of stuff not working with my body, all the types of pain and discomfort, are so many that it actually becomes both horribly upsetting and somehow completely comical to me, and not something I really want to dwell on. I can’t imagine anyone else really wanting to dwell on it either. Doesn’t leave me much left to talk about.  Not much else to my life right now.

Just trying to keep it all together.

Live in love

and cherish what you have.