Re-Relapsing… AND Falling Apart.

Photobucket

Well right now I am re-relapsing, never even got over the first one that landed me in the hospital and already I am flaring up again. I can no longer walk as my balance is just horrible, I can’t tell where I am in time and space and I have horrible vertigo. I am growing a tad weak as well so I am back in the wheelchair, YAY… Fine motor skills are gone so once again I am typing with one finger in each hand like a child, wait, children can type faster than this. Losing my vision again as well as sensation in my lower and upper extremities. Sometimes I am numb and sometimes I am in pain, sometimes both. Oh yeah my favorite, I am slurring my speech again. So if you catch me trying to walk and talk you would probably think I was drunk since I can take maybe three steps before falling AND I simply SOUND drunk…

So that is partially why I have not been on top of my game as far as the blog is concerned. Well… That just covers the last few days… I just have not been doing well since the hospital. I’ve had my ups and downs as MS always permits but they have been 1 million times more dramatic. This is probably mostly a result of me not being on my antidepressants and any of my other medications for about a month, not supposed to go cold turkey on that kind of stuff… I can feel how it has messed with me. Starting everything back up and I am hoping it will change my mood immensely. I will have more on that in one of the next few posts.

But I have been majorly depressed for a while now, been experiencing crazy mood swings, contemplating many concepts of life, meaning, purpose, everything, it has ALL been on my mind. It has not been fun, I have not been myself… It’s been getting worse and I’m definitely thinking about therapy just to see how it feels. I cannot function this way… I can’t write, I have no friends, I have no hobbies, no means of income, no job, no sense of accomplishment, no significant other, no health, nothing, I am falling apart. I am hoping this will turn around in the next few weeks but again, I will talk about that in a different post.

For now I just want everyone to know that I am okay but I may be rather slow over the next couple of weeks so bare with me, I am human just the same as anyone else, and this is all very new to me.

I do not know what to do.

So give me time and we will see what happens next… Thanks!

17 thoughts on “Re-Relapsing… AND Falling Apart.

  • May 13, 2012 at 11:50 am
    Permalink

    Hi Matt. Sorry to hear you're going through such a tough time. I'm lucky that my relapses have never been that bad. I do have mood swings though. As a yoga teacher, i try to look for solutions in breathing exercises. Not sure if you would be interested but Nadi Sodhana (alternate breathing) works very well for me to balance my emotions. There are a few videos on youtube… Wishing you strength. Véronique

    Reply
  • May 13, 2012 at 12:02 pm
    Permalink

    I wish I could wave a magic wand and make it all disappear for you. It took incredible spirit, given your MS symptoms and also depression, to write this post. I hope you find solutions soon that make your life better.

    Reply
  • May 13, 2012 at 2:10 pm
    Permalink

    I don`t have MS, but I have been reading your blog for a long time. This makes me really sad to read. I also do yoga and can recommend breathing exercises. And get as much sun as you can.. And D3-vitamine, and therapy! I hope you will do that!
    Lots of love!

    Reply
  • May 13, 2012 at 2:58 pm
    Permalink

    Matt, I dont believe one can cop MS without a support of a doctor, and a pacient-colaboration.You need anti depressants or not? Etc… Find a doctor, follow the Rx and see results. I know things are really bad right now.And you know I think you can be fine, if you want,at that time you should realise that´s not exist the old Matt,the 20 years old Matt.Sorry! Today is Mother´s day, so tell your mother how much thakfull you are.Dóris

    Reply
  • May 13, 2012 at 5:33 pm
    Permalink

    Matt….You are going through so very much right now and the worst this disease has to offer is showing up for you. This is just awful and terribly depressing for you and all of us that care about you.

    I've been on and off anti=depressants for years. Keep thinking I'm doing okay, so I go off them. Before long, I realize they actually do help me quite a bit. With MS, as you know, the depression is there for two reasons…one because MS alone, can cause depression and two because of how you are feeling with all of pain of having MS.
    You NEED and MUST get back onto the highest dose you can and also see if you can take a 2nd antidepressant to augment the one you are on.
    I take Dexetrine for low energy and slow thinking and Prozac for anxiety, depression and agitation and irritability. The two pills together do work for me and I know each of us has to find the right combination and often it takes a long while to figure out what works for each individual.
    Coming off your drugs can certainly cause your head to feel spacey and can add to the dizziness. Mood swings are all connected to what you are going through.
    I know that just ONE of your devasting symptoms can be so terrible.
    When you say…."I don't know what to do" ,I know what you mean to some extent.
    I understand it when you say this is not the real you and you know what….it isn't! The real you is inside and wants to operate as usual, but the disease is making a part of you feel like you are going crazy.
    I tend to isolate myself now, alone is easier sometimes, instead of trying to be normal and keeping up with others. Small talk doesn't interest me for some reason now, hobbies? well, that can be hard too, because I often can't focus on anything like that anymore and although I really want to be productive, it seems very difficult for reasons, I can't explain.
    I had to leave my job, a job I loved, because of the MS and my thinking and cognitive stuff … oh and … incontinence. My brain sends the signal to go….and my body listens instantly to the message …. bowel and bladder. This happens in a split second, no warning, at the oddest times, I keep it a secret, but it sure stops me from doing many things I'd like to do. So, I stay at home quite a bit…..cause it's safer.
    This disease is so entirely unpredictable, no one, not even our doctors know what is in store for us, meaning….you could go into remission again and remain there for years…or out of the blue, go through major relapses that are devasting for months, then somehow the immune system settles down and things improve once again.
    Talk to your immune system and ask it to give you a break, tell it, it is doing the wrong thing in your body, tell it to STOP the attacks!!!!!!!!!!!
    I don't remember if you've tried Tysabri? I haven't, but I know some who have and they have gotten some relief.
    Oh, and you do have friends…..the ones who really understand and would do anything to help you. Yes, I know we can't come over and be with you in the physical body or go out with you and do the things you love, but believe me, we are right beside you all the way.
    No worries about taking care of this blog or facebook for all of us. Just communicate with us, when YOU need to and when you CAN. Rest as much as you can. Contemplate life all you want, cause that helps you to arrive at a new normal where you will find a bit of peace.

    Mary-Ellen

    Reply
  • May 13, 2012 at 8:27 pm
    Permalink

    I have dealt with depression since my early teens and have been on antidepressants ever since. I did stop for a while and realized that THAT was a big mistake but I changed medications at that time and am so glad I did because now that I am on Celexa my depression has not been as bad but since I was diagnosed with MS it has been a little bit harder to control.

    I do try to work on my vitamin D with both supplements and direct sunlight but am not sure if that is doing anything for me. It's one of those "wonder how bad this would be without this medication" kind of things….

    Lots of people recommend yogo and I did work on breathing exercises in rehab, was hooked to a computer and everything haha! Did not help me much… 🙁

    Reply
  • May 13, 2012 at 11:07 pm
    Permalink

    Matt , why does your neurologist keep you on the same medication (Copaxone) when clearly, it is not working, you need to switch your medication!!!!!

    Reply
  • May 13, 2012 at 11:29 pm
    Permalink

    Matt,

    Responding to "I do not know what to do." Knowing what to do is beyond us, and especially beyond you right now. I know this is going to sound very lame to you, but pray and ask God to show you what to do. Ask him to bring you into a situation (or to a doctor) who can lead you to the right steps to help.

    I know this sounds lame, but if you ask him, he will answer — not the day after tomorrow and not always as you would like to be shown — but he will answer!

    Reply
  • May 14, 2012 at 12:31 am
    Permalink

    I told my new neuro the same thing when she said copaxone. "Copaxone doesn't work for me, was on it a year, need Rebif and Prednisone"
    "no no nio you just need copaxone"
    "Your wrong, its notr going to do a thing."

    2 months later as I am getting worse guess what she's thinking?

    "Well Copaxone clearly isn't working for you so I think we should try Rebif and put you on a high dose od Predbisone"
    "Gee…. Thanks………"

    Reply
  • May 14, 2012 at 1:37 am
    Permalink

    Matt i think i speak for everyone here in saying your scaring the crap outta us with this on & off meds thing. seriously dude whats going on? sounds like you need someone to manage your drugs. on a lighter note, im making a $donation$ & i invite others too also. cold hard cash always makes me feel better, gives me just enough energy to give MS the finger. whos with me?! FUCK YOU MS, leave my friend alone!

    Reply
  • May 14, 2012 at 3:03 am
    Permalink

    Hey Matt! I'm a loyal follower of your blog and I know you have been struggling. Add a relapse on top of the way you were feeling and it will definitly throw you for a loop. I've always found that my emotions get pretty screwed up prior to a flare as well so I don't know if that is also contributing to the way your feeling. Hang in there, it will eventually get better! In the meantime, you need some REAL meds. Have you considered a more aggressive MS therapy? The ABC drugs are all fine and dandy but are only 30% effective in reducing flares. You shpuld consider Gilenya (50% effective) or Tysabri (70% effective). I started Tysabri 3 months ago and it has helped.take care of yourself and remember that we are all rooting for you!
    Lisa

    Reply
  • May 14, 2012 at 3:14 am
    Permalink

    I was ready to send you an email when I saw this post. I have been worried about you and wish this MS would ease up. Hang in there Buddy. Wishing you a quick recovery from this relapse.

    Melinda

    Reply
  • May 14, 2012 at 3:45 am
    Permalink

    Haha that's what's funny with the on and off thing, its all my doctors fault not mine, they take like a month to order my refills…. UGH! I want stem cells, I have Zero faith in ABC drugs…..

    And hey, all donations are appreciated maybe I can start saving up for new dragon voice recognition software and write more! Not going top even tart on a BOOK with hands like this,,,

    Reply
  • May 14, 2012 at 6:19 am
    Permalink

    sorry Matt. I have had back to back re lapses several times and they suck my doc at one time put me on 6 months of IV steroids along with my shots and it helped so much. I hope they get you on something for your relapse soon. Hope this ends soon for you

    Reply

Leave a Reply