True Devastation

This will be short, sweet and littered with typos.

Last week I had an MS relapse. I can’t see. I can’t do anything. I can barely type and it hurts to look at anything. You guys I am in such a bad place. I feel like I’m just over the edge. I can’t do anything that I love…I cant go outside, drive, blog, text…I mean I have literally spent the last week on my couch with my eyes closed.

They are post poning my surgery probably. I cant see. I can’t think. I can’t process amything anymore, and its really hard to see what I’m still fighting for. I’m fighting so hard to “get my life back” but what does that even mean anymore? What life.

No job, no hobbies, no money, no anything. I don’t even have things I can get back to.

I have never been this low. I don’t know what I’m fighting for or why. It feels like its never going to end. The problems, the complications, everything. I’m just destined…for a lifetime of shit. I don’t want to live this life anymore. I often feel like I don’t want to live anymore. Its dramatic…but if living means feeling this way…every single day. I don’t want it.I just feel like im stuck in this hole…and no matter what I do…I sink. I never come out on top. I do everything they tell me, everything the right way and im still failing. My body is still failing. I don’t want to wake up anymore. I dont even want a better life anymore, what I want is to give up.

Im tired of fighting. Im just tired.

Please leave a comment

  1. DaveMurr Says:

    Wow. Word fail. I didn’t know things had gotten this bad. If there is ANYTHING I can do, please let me know. I will send all the positive energy I can to you. Just please remember that there are people here who care and love you, and who would do anything to take your pain away.

    All the best,
    David

  2. Patricia Wood Says:

    sorry your not doing so good right now. It would be a very tough time. I will pray for u and have my prayer circle pray for u also. Keep us all posted.

  3. super pooper girl Says:

    I’m so sorry, man! You have my full sympathy! For the last seven months, I’ve also relied on my financially stressed parents to pay for everything –for the first time in 15 years, and let me tell you, it feels like shit! And I’ve also been struggling with my health, which is like nothing I’ve ever been faced with before. I’m not very good with words (especially with words of encouragement), but know that I’m cheering for you and my fingers (and toes) are crossed for luck that you are going to feel better soon!

  4. Amy Says:

    Girlfriend – I know how you feel. Just take it one day at a time. hang in there and get better; if they reschedule the surgery then it’s for a reason; everything happens for a reason. I had my colon and rectum removed last January and I didn’t have that ‘oh, I feel so much better’ feeling so many people have said they had. I also have spondylitis (arthritis) and even though the colon pain is gone I still have pain. then last week my left eye started hurting; looking toward the sun is the worst; it’s something called uveitis… great. can’t seem to get away from all the ‘itis’ problems. really makes you think ‘wtf’… HANG IN THERE LITTLE CAMPER!

    amy

  5. Eve Says:

    omg…. WTF??? I feel so bad for you. Just know that there is a whole population of ass-challenged people rooting for you to have your surgery and for everything to be ok. If you need anything please let me know.

  6. Patricia Wood Says:

    Ok now I have a question, with MS I have problems with my bowels. Colonitis? is that the same thing. You said u were in pain and had to have surgery. so is this something else I need to worry bout and talk to my Dr. bout? she knows I have problems with it but hasn’t said anything. I hope u get to doing better

  7. Jackie Says:

    Patricia, it depends on the problems you’re having. MS can cause the brain to fail at sending signals…and cause problems with your pooper. However, with UC of Crohns its totally different.

    I’m not sure about colonitis, ive never heard of it. I had UC which was going to the bathroom 15-20 times a day, lots of blood, abdominal pain, fatigue, nausea, ect. If you have anything like it, it might be worth just making an app with a GI. UC totally debilitates your life, from what I know, MS bowel symptoms, are just a pain but they don’t cause accidents or anything.

    I had my colon removed because my UC was so bad. Statistically speaking, you are probably not as bad as I am/was. I’m not make assumptions, it just is that most people are not this bad off.

  8. AnneP Says:

    At the risk of sounding condescending, how much of your mood can be blamed on the fucking Prednisone? That shit is EVIL.

  9. Patricia Wood Says:

    Jackie, thanks. No my problems aren’t that bad. Mine are just that with the MS it varies. Sometimes I’m constipated and don’t go and other days I’m fine. But there are times when I need to wear depends! those days when I have to go I better run and have a bathroom near by. which always may not work that way. I’ve decided when I’m going to be gone for a few hours I need to start wearing those depends. I hope u feel better.

  10. A fan Says:

    Please hang in there. I have been faithfully reading your blog since I found it, and can see that you are a smart, funny wonderful person that people care about – that I care about. I am having some similar surgeries as you, for different reasons, and I understand many of your emotions. I also lost a dear family member to the kinds of feelings that you have expressed in this post. Please know how much your loved ones need you to persevere. When you don’t have the energy to fight, don’t — just *be* until you do. Concentrate on just the next day, the next hour, the next breath, and at some point you will look up and see how far you have come. Know that it is important for you to get through this, because you matter!!!

  11. Casey Says:

    Good Lord. Just when I get the tad bit envious of your J-Pouch you throw this out there. ;) Things I am tired of:
    1.) People saying, “I just don’t know how you do it.”
    2.) “God is doing this for a reason.” (like what, exactly?)
    3.) The question, “How are you feeling?” (my response always being, “great!” when I’m thinking, “how do you think asshole?”)
    4.) Relying on my PARENTS to pay for everything. Seriously? I’m 31.
    5.) Having days when it physically, and emotionally, hurts to get out of bed. (this past weekend was spent in bed with a heating pad BECAUSE OF CORN I ate on Friday. WTF?)
    6.) Wondering if it is really bad enough to go to the hospital, because not only do I not want to, I can’t afford it, and it is always be at the time when the PICC line Gods are NOT there and I definitely don’t have any more veins to start an iv.
    7.) It will get better. (no it won’t. and I don’t need you telling me it will- it is only making you feel better.)

    Peace Out. ~Case

  12. Janelle Says:

    Jackie,
    im lost for words, but honestly i feel word for word the same exact way! i dont have ms but my loop stoma did tear in half ripped completely apart because the rod pulled through. Im worried about it leaking inside me and making me sick or die. the dr doesnt want to re-open me so we are just hoping it doesnt move til i can get the hook up. I cant wait the 3 months but the dr insists.
    i think this particular type of surgery makes all us ostomates depressed. Please try to talk to someone. Its just 3 more months for both of us, we can do this!
    ps take advantage of pain and depression meds.

  13. Jackie Says:

    Casey, you have no idea how much I loved this comment.
    Every fucking point you made…ESPECIALLY about the god damned PICC lines. I have not gone to the hospital because it was a weekend specifically because of this. Thank you for your comments now and in the past. I know we’re not normal…but at least I’m not the only one.

  14. heidi Says:

    yeah, dude. no shit. sucks….

  15. Blood, Poop and Tears – Supporting the Colitis, Crohn's, Ostomy, and J-pouch community one butt joke at a time. » Blog Archive » SHOTS SHOTS SHOTS SHOTS SHOTS SHOTS SHOTS ERRRRYBODY Says:

    [...] I will do it, but I try really hard to talk myself out of it. The reality is that I had a pretty bad relapse last year, (remember that whole “I want to die” thing), and that scared the shit out of me [...]

  16. Debbi DeChellis Says:

    Hi Jackie…. I just read your post about SHOTS! Then I read the post about your depression and pain. I live with Crohns, 21 yrs now. I ended up with blood clots in my legs, arteries & veins. It is soooo f-ing painful and debilitating. They scream every day… every hour! They put me on a TON of pain meds that made me soooo damn loopy that I had no idea what the hell I was doing half the time. I couldnt drive, walk or even focus. I just slept 5 yrs of my life away. I finaly decided ENOUGH IS ENOUGH! I took myself off of ALL pain meds. That was one HELL of a ride! Took me 3 months. Taper then stop. I found a pain specialist that has helped me find a mild pain drug that doesnt have the effects as the heavy ones. I also found a councelor to talk to and she put me on an anti-deppresant. I still have really bad days, but I try to get the most out of my good days. I have to live on coumadin for the rest of my life. It sucks to have to go in every 2 to 3 weeks and get my levels checked. I also had a perm port put in as the f-ing prednisone caused my veins to collapse. So my life consists of PILLS, SHOTS (cimzia), PRO-TIMES (coumadin), PORT FLUSHES, now they need to pull ALL my teeth, due to 21 yrs of prednisone use off/on. Then they want to do a proceedure, vein stripping in both legs to get blood flow to them. My insurance is giving us crap because they feel it is an elective surgery. WTF I just want to WALK! WOW….. I guess I needed to get this off my chest! Lol…. See, we need you to stay strong! I really enjoy your posts. They are REAL, HONEST and always FUNNY! Please know you are in my thoughts. Please dig deep and JUST DO IT!! As they say! And YOU CAN DO IT! Hang in there and THANKS for letting me get this SHIT off my chest! Much support, Debbi :)

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