Yesterday I held a pity party for myself, against my own will. I tried to fight it but it wouldn't go away. Coming off of Tysabri and doing the oral steroids, I was hurting, irritable, edgy and unable to get any sleep. I did the steroids for 3 days and decided that the side effects are not worth it. My mouth tasted like I was sucking on an old penny that had been soaked in Robitussin and no matter how many times I brushed my teeth or ate mints, it wouldn't go away. I called my neurologist and told her this, my history of suicidal inclinations was in my favor, I am not going to finish my 5 days of steroids and the plan of having me do steroids for the next 6 months until Copaxone reaches its therapeutic levels has been scrapped. While trying to find a way to get my body comfortable, I spent too much time on Facebook and read all about every one's hot plans for the weekend, which sent my pity party into full swing.
For games I decided against Monopoly and went for Pin The Self Loathing On The Gimp. I fell into the old Why Can't I Be Normal trap and went round and round with that. I didn't want to admit it, but I was jealous of those who can go and do things, especially at night when I am counting down the minutes until I can go to bed. I want to jog again, walk my dog, read half the night, be able to keep up with Princess, shop all day with Sugarbowl. I want to be normal and feel like a 35 year old woman, not a 95 year old woman. I want to join in all the reindeer games and be able to stay up too late and rock it with a lampshade on my head. I do not want to be ME anymore. I hate the fact that MS has all the say over me and if I try to fight it I only hurt myself worse. If I try to push myself too far, I get too tired and my muscles start shaking, that overwhelming fatigue where if you don't rest you run a HUGE risk of hurting yourself.
Ugh! I have to stop this pity party NOW because I am only irritating myself more. Every once in awhile I have to vent this stuff and be with it so it can pass and I can get back to life. I hate feeling this way and I HATE feeling sorry for myself. It makes me even more of a bitchy jackass then usual, and nobody wants that. Luckily, my roomies were not interested in coming to my party and decided to tease and harass me to keep me from taking myself too seriously, so I do feel a little better and even started to laugh at the way they were walking like me and stumbling over everything while forgetting what they was doing 5 minutes ago. When holding a pity party, it is best to invite those who will not join in on the pity. I still wish I could party all night with a lampshade on my head, but at least I can admit that my dancing would look like the tin man in a rain storm and that image amuses me and makes me feel a little better.
For games I decided against Monopoly and went for Pin The Self Loathing On The Gimp. I fell into the old Why Can't I Be Normal trap and went round and round with that. I didn't want to admit it, but I was jealous of those who can go and do things, especially at night when I am counting down the minutes until I can go to bed. I want to jog again, walk my dog, read half the night, be able to keep up with Princess, shop all day with Sugarbowl. I want to be normal and feel like a 35 year old woman, not a 95 year old woman. I want to join in all the reindeer games and be able to stay up too late and rock it with a lampshade on my head. I do not want to be ME anymore. I hate the fact that MS has all the say over me and if I try to fight it I only hurt myself worse. If I try to push myself too far, I get too tired and my muscles start shaking, that overwhelming fatigue where if you don't rest you run a HUGE risk of hurting yourself.
Ugh! I have to stop this pity party NOW because I am only irritating myself more. Every once in awhile I have to vent this stuff and be with it so it can pass and I can get back to life. I hate feeling this way and I HATE feeling sorry for myself. It makes me even more of a bitchy jackass then usual, and nobody wants that. Luckily, my roomies were not interested in coming to my party and decided to tease and harass me to keep me from taking myself too seriously, so I do feel a little better and even started to laugh at the way they were walking like me and stumbling over everything while forgetting what they was doing 5 minutes ago. When holding a pity party, it is best to invite those who will not join in on the pity. I still wish I could party all night with a lampshade on my head, but at least I can admit that my dancing would look like the tin man in a rain storm and that image amuses me and makes me feel a little better.
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I HEART BB....BIG smooch.....I cried a river the other day because my arms and legs were like lead and I wondered how I would EVER get up before noon again (sleeping way too many hours lately from fatigue.) I do a pity party about once every couple of months.
It helps.
I am so sorry to hear about your experience. I completely relate to the pitty party. I can't tell you how many times I've done that. lol
I went off of Tysabri, too. I stopped after 20 doses. I was a little scared to go off Tysabri because I feared I would have another exacerbation. So far so good. I've been off it for seven months and my neurologist put me on low dose naltrexone (LDN). It's a non FDA-approved medication (pill).
From reading your post it sounded like you had an exacerbation while on Tysabri. How long were you on it?
I also hate the IV steroids. I've had at least five rounds of it already, and I don't care to ever have them again. I haven't had a flare (knock on wood) since '07.
I enjoyed reading your blog post!
Sherri
Your blog reminds me of the phrase, "you can't polish a turd." The Mythbusters proved this untrue but I prefer to think of turds as un-polish-able, but with the hope that after enough time, turds turn to fertilizers and inspire new growth. Just try not to choke on the stench until your flower blooms again. :)
Oh bearded one - your writing brings the feelings you were experiencing to life so clearly. As the caregiver to the person with MS, thanks for giving me insight into what you're going through.
Glad you have people who won't let you keep that sh*t up, though! :-)
Oral steroids suck - that's my story and I'm sticking to it. Having MS sucks even more - can we get a group amen? Having roommates to harass and tease can be uplifting - odd but true. Having friends who understand, I hope is a blessing. Hang in there Sweetie, I heart BB too.
I hope you do not mind BB; the next time I have a pity party I want to borrow this post. You eloquently explained my pity party without the roommates. I have to admit I am glad no one joins me when I throw a pity party.
You are totally allowed a pity party. Sometimes you just need one. Don't forget that the steroids are messing with your head. "It's not you, it's the steroids". It really isn't 'you'.
Your post was also hilarious, and you are a skilled writer, so you got that going for you. I can't believe I don't have your blog on my RSS feed. I do now.
My neurologists took me off Tysabri two months ago (after two years) and they proposed steroids/Copaxone. I thought about it and said no. Copax never worked for me in the first place (along with Rebif and Novantrone), which is why I went to Ty. I have a history on my own blog of writing about how steroids mess up my head.
I asked them (again) about LDN and was told "stop reading things on the internet" and "people who do well on LDN don't really have MS". Dude, please.
With the encouragement of a few MS'ers, I went to my "other" neurologist, and she gave me a scrip for LDN.
I've been on LDN for a few weeks now. I had already been doing the MS diet for a year. I'm pretty happy (what?? me, happy??) with how it's going at this point. But what really matters is how it's going 6 - 12 months from now. We'll see. I am hoping for the best, although normally with MS I through hope right out the window in favor of depression.
I'm wishing you the best in your post-Tysabri trek. You are not alone.
Ah yes.. the lovely pity party. I have been clubbing it up at one weekly .
PROS: don't have to dress up/ drinks are free
CONS: There usually aren't any men there/tears in your drinks suck! --In the words of MJ..you are not alone.
"An old penny that had been soaked in Robitussin"...HAHAHA! I love that description and it fits perfectly!!!
Steroids make everyone loopey and miserable, especially the crash afterwards. My boyfriend just did a taper for a few weeks and now his PMS is worse than mine. I told him to call me once his sanity returns (LOL). Seriously though, steroids make me feel awful and crazy all at once. Hopefully you will be over the low soon.
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I thought I was the only one that felt that way. I'm 36 I have two children I was just diagnosed in June 2016. I haven't seen any symptom relief. So I just sit here crying to God just help me, help me cope with this. See I want my life back or I just want people to be empathetic. I want to know that when I'm upset and when or sad they're not going to just walk away. I don't want anyone to feel sorry for me but I would like for them to be empathetic. I'd like for them to try and understand what I'm going through to be compassionate enough, loving enough to just hold my hand. I had a rough day my supervisor doesn't understand and is not willing to empathize. Do I have to give up work with everything else that have given up? I've disappointed myself and I'm trying to hold on to my dignity. I feel crazy. I don't want to be alone I just want to be understood. I don't want to be in a sad place. Work is an issue... I feel like I'm trying so hard to be good, be recognized and excel but... I begin to think, this is my issue. My supervisor says we don't communicate well I'm from New York and she's from Florida. That doesn't mean a thing to me we still speak the same language. I still have goals and desire to accomplish. I think that's what's so foreign to her. I'm educated, I'm Direct and my vocabulary is greater than the 200 or so sight words we learned in Kindergarten. This past weekend I earn my masters degree and at the same time I realized that this might be the furthest I go. I don't want to give up on myself but people make it hard for you. I think I'm making it harder on myself by just trying to do more and not limit myself. I guess this is my pity party and I should remove myself because it's lonely here. I spend too much time here. I'll be happy when they stop hiding the cure. Until then, I'll go in and out of consciousness.
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