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August 13, 2011

I feel like shit physically but I feel so damn good mentally right now.

I’m wondering how long these symptoms are going to last. If it was just a hormonal thing, it’d be over already. I got a really nice, deep 8 hours of sleep last night but it was hard to get out of bed this morning. It took me over 2 hours to eat a small breakfast. Lots of squeezing that came and went today both in my abdomen and chest, as well as my arms. Lots of pain in my legs, along with spasms, twitching, and numbness. Deep, intense pins and needles. Periods of cog fog. All I wanted to do was go back to bed, I was just so drained. Then I got talking to a friend.

I ended up having friends over for dinner (my baby toe did a little dance for them), then we decided to walk to a store and do some shopping. My legs were in agony by the time we got there. But I kept going. I didn’t want to cave so I resisted leaning on the shopping cart for a while, but eventually I gave in to it. By the time we left the store I had to sit down on the curb, I just couldn’t stand up anymore because the pain and spasms were too much.

So I’m sitting there resting up, trying to get the energy to get across the parking lot to a coffee shop. Then it hit. A fucking trigeminal neuralgia attack. It was just an aura but it was painful. It didn’t start the way it normally does, it started by making it feel like my teeth were vibrating, then went into the pressure in my cheekbone. Once the shocks started to come I immediately popped 200 mg of tegretol. It was really noisy where we were so I wanted to get away from the sound, so we headed to the coffee shop.

We got in and sat down, and I immediately had to go back outside. The slight breeze of the air conditioning was too much, it made the shocks much more intense and come much faster. So I waited outside (my friends came with me, of course) until the meds kicked in, then we went back inside. My legs were still killing me and I started thinking about how I was going to get home. I didn’t have cash left for a cab (few cabs in this city take debit cards), did I have enough change left to take the bus? I was about to look in my purse to check and what did I see when I looked down? This:

That made me stop and think. Do I really want to give in to this? Do I really want to change what I would normally do? Fuck no. Fuck you, stupid legs, I don’t care if you’re hurting, you’re going to do some damn work. Why? Because I fucking say so, that’s why.

So I did it. I pushed through, and I walked home on my own with no cane. It hurt like hell, and by the time I got home my foot was going through major spasms. But if I had to do it again, I would. Because I won.

I will not be robbed any more. I will not let the pain win. I will not give up doing things I enjoy because of this illness. If my stupid nervous system doesn’t like that, then tough shit, it’ll just have to go find someone else to pick on.

TN update:

The 200mg of tegretol didn’t completely tame the attack, but it made it tolerable. After about 4 hours the pain started to intensify so I took another 100mg. It’s not doing too much, but it’s still in the tolerable range. I’m calling Dr. Fabulous tomorrow to set up any appointment. I’m concerned about what this stuff may be doing to my liver, so she’ll most likely order some blood work. I also want to talk to her about the possibility of switching up to the next level of medication (gabapentin), but I’m not hitting the maximum daily dosage of tegretol yet so switching up will most likely be held off until I see Dr. Kickass again and she’ll probably just increase the dose in my prescription. Either way, I’m pretty tired now and need to get some sleep so I know the attack will fade out as I fall asleep. Still feeling victorious šŸ™‚


From → Journal

  1. Good for you. I wish I could power through….when my legs give out, they just don’t work. They turn to jello and feel like the weigh 200lbs each. And where did you get that bracelet? I need one. Sometimes I feel like my MS is winning…..I’m getting better at saying ‘fuck you MS’ and going about my life but sometimes its overwhelming so I just stay home. Only have a couple friends I would want to be around if I wasn’t feeling mostly normal and none live near me. Luckily I didn’t go out much before the MS so its not a huge change but there’s still anxiety about going to new places or events like concerts or sporting events (mostly because my bladder is so unreliable).
    Kudos to you for being strong!

    • Thanks hun. Some things are impossible to power through so I’m just glad I actually tried this time. I used to love concerts but now not so much (only if its a band I love and its not a festival, and is within 1 hour driving distance). I’m slowly learning to cut down on my daily to do lists so I’m not so disappointed in myself when I don’t get everything done. Thankfully my friends are really understanding so it doesn’t matter how twitchy or limpy I am, they won’t judge or get all weird and uncomfortable around me.
      As for the bracelet, I got it as part of a bundle to raise money for the ms society scholarship fund. I have two shirts with FUMS on them too :p ill dig out the link for you when I get home šŸ™‚

  2. Here’s the link for the FUMS merchandise:
    Hopefully they’ll start selling just the bracelets soon.
    A note on the bladder thing: I’ve been trying to train mine. At certain points in the day I’ll drink a LOT of water, just so I can kind of time when I will need to go. Still have a few spills here and there, but it’s making it easier to manage.

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