Trying to acclimate myself to a higher dose of Neurotin is kicking my butt. I spend 90% of the day sleeping and the other 10% trying to get something -- anything -- done. That 10% is spent scratching my itchy spots, which there are many right now, grabbing the funnel and crunching up Pringles and cake donuts to funnel down my throat before the Neurotin kicks in and I go back to being comatose. Yesterday I was snarfing Pringles and sunflower seeds when I fell asleep. I woke up with crumbs all over my shirt and even a few sunflower seed shells stuck to me. How revolting! I was irritated that the dogs didn't clean me up while I was knocked out. When I'm awake and eating they won't leave me alone. I fall asleep with a feast on my shirt and they can't be bothered. But they sure found the time to rip apart their water bucket and the garbage. There were plastic pieces all over and chewed up paper towels scattered all over the floor. It took me a few hours to come out of my haze to clean it up, after I cleaned myself up first, of course.
These itchy spots are going to drive me crazy... well, crazier. My palms itch like mad, especially my right one, this attack (don't care what the neurologists say, I know my body) is killing my face/ear, making my right leg spasm and clench up, which is very painful and making my muscles very sore, and these itchy spots! My head itches so I have to dig in my hair like a flea ridden dog. I told my little sister I thought I had lice and she ran off before I could tell her I was kidding. She would believe that because I love to go to thrift stores and try on the hats, which she is convinced are crawling with lice, but I haven't gotten lice yet and even if I did it is worth it to try on those great hats. My right arm and leg crawl constantly to where I have dug up the skin in places. But the relief of a good scratch is worth a scabby body. Again, my little sister says I look like a person with a skin disease, I am so scratched and scabbed up. Maybe I should consider clipping my nails short, but it feels too good to scratch for me to care.
I am feeling so negative about myself and this disease right now, I am not fit for human consumption. I would suggest throwing my carcass to the hogs, but I know there are ignorant people out there who would not eat the pork because it might have gotten tainted by the MS, so I may have to reconsider that idea. I haven't been taking my vitamins or other supplements that I'm supposed to take because I don't care about myself right now. That may not sound like a big deal but I take them religiously so my not taking them says a lot about how I am feeling. I'm so tired of being a piece of crap and having all these problems that make life a burden, but I can't tell anyone around me that because they would worry about me. I know I'm in a down pocket right now, but I also know it is situational. Once I start to feel better I will take an interest in the things that usually amuse me. Right now I am putting on a happy face when everyone is around and pretend I'm getting along okay, even though I'm MAD MAD MAD. Somewhere along the lines everything got messed up. I never wanted to be a crippled gimp who is very limited in what I can do. I wanted to do so much more with my life than struggle to be somewhat normal. I was going to school when I was diagnosed, I was doing foster care and looking to adopt. I wanted to do more volunteer work, not less. Now I don't know what I'm doing or why I'm still here. I can't seem to find my way, or any purpose for this life. It frustrates me to be unable to do the things I want to do. It infuriates me that I am dictated to by my disease and when I try to override it, it always gets the last laugh -- I fall or get clumsy and hurt myself or the fatigue wipes me out too soon. I'm sick of being called "sick" because I don't think of MS as an active sickness. I can't go to bed for awhile and drink lots of fluids and be better after enough time. I'm not "sick" in the sense that I think of sick. There are no pills to cure me. No surgery to make me all better and my body is healthy, it is just my messed up immune system that wants to attack my (tiny) brain and spine.
Sorry to go off like that. I get so frustrated and angry sometimes I just have to let it out. I seem to orbit around the "anger stage" more than anything else. And nothing makes me angrier than an attack and neurologists who try to tell me otherwise. The good news is, I go to see the shrink in a few days so maybe a tweaking of my psych meds will help even me out and help me find a new path for this life.
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6 comments:
Even though our MS courses are different, there are many similarities in what we're feeling. I was just discussing--- well, really fighting-- about this with Bill last night. I was having the "I'm so boring. My life is so boring. I don't know what to do with myself. I need some sort of focus, but what can I commit to with this damned MS?" discussion AGAIN. I vent about this every couple of months. And mid-relapse my focus on my purpose becomes more intense and I really question what the point of it all is.
I'm trying to achieve small dreams of my own. I want to go back to school. I want to adopt a young child. There has to be a focus and a source or sources of accomplishment, and I don't think non-MSers understand this because they are usually stressed out and trying to simplify their lives. I hate the untapped potential and trying to find ways to shine amidst all of the MS crap.
I'm so sorry that you're having such problems with TN. I had one really bad time with it at the end of a relapse. Heating pads and ice packs didn't work. Neurontin made me so loopy, so I know.
And the anger is completely understandable. You'd be inhuman if you didn't have it. Good luck with the shrink.
Effing disease and inadequate meds...vent it all, girl. Neurontin mad me battier than a dark cave...drooling batty. There ARE other meds you could try for the TN pain (like Amitriptyline, Trileptal, Lyrica for starters) and "possibly" a round of steroids would do you some instant relief. There ARE also ways to treat your "steroid crazies" and keep you OUT of the loony bin if anyone cared to work with you and do so!!
Seriously...for once I wish I lived in Nebraska again. We'd work you through some steroids and you'd not be fearing "crazy" again. And besides, I HAVE my own set of leather restraints if needed. :-)
Linda D. in Seattle
BE ANGRY!!! This damned disease sucks! Does sound like a little bit of steroid magic would do you some good, but unfortunately I don't have the power to write that script for ya.
Sorry that neurontin is being a lousy friend. It works great for me and I'm taking 1800mg daily. Don't know if it's to blame for the obsessive sleepiness cause about 3-4 of my drugs all claim drowsiness as a lovely side effect.
What I can share is that I'll be joining those of us MSers who are doubling up on the antidepressants. Had a talk with my neuro nurse and admitted to the underlying dark current which has brewing for 3-4 months. Hopefully this will work.
Please vent all you need to and maybe Linda will indeed come out to Nebraska to strap you up.
My husband is annoyingly optimistic when I'm feeling crappy about life and pissed at this disease for taking my opportunities away. He wants to to help me have a better attitude and I want to punch him in the face. Even though I know it wouldn't be much of a hit because I am a southpaw and that's the arm that's weak right now, plus I love him intensely and wouldn't want to risk screwing up his dimples.
I guess what I'm getting at is that it's not fair dammit! (Imagine full grown woman mid-tantrum on the floor.) I wanna be pissed when I'm pissed and not care about worrying my family, but I can't do it either. If you come up with some secret form of anger management that you can hide from your family, do me a favor, and share with the group.
I'm pounding my feet with punkrockfairy, too.....and I echo the sentiments of Linda and Lisa (as usual actually, 'cause they're right).
Hmmm...leather restraints....sorry, off track for a moment.
oh yeah...get mad if you want to.
S.
Feeling powerless is maddening. I know I can be more positive when I feel better but feeling sick makes us feel like a vicitim and that's hard to get past. I hope going to the psych helps you out. Your purpose will still reveal itself, I have to trust that for you and for myself.
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