Givingup the Ghost

Do you ever stop whatever you are doing and pause to tell yourself you are just freaking sick of the whole thing? This is not to be confused with playing the victim card. That is very different. I am talking about reacting to the endless sameness of the struggle, day-in, and day-out.

For me, it only takes the morning tedium of showering, shaving, brushing teeth and struggling to dress. Then come tie shoes. It is wrestling with the footwear that usually pushes me over the edge. Have I already whined about petty frustrations. I think so. They can define a life.

But focusing on life’s little tasks seems safer than facing the deeper hurt that comes from being less than we wanted because of the assault from a disease and disability that block us and wear us down.   Sometimes I think of what I cannot do because of arms and hands, fingers and toes that no longer serve me. I consider what legal blindness has taken from me.

Frustrated? Blame the MS.

Though I cannot handle a baseball bat, I want to swing for the fences. Those who feel sorry for themselves do not step up to the plate and fight the good fight. That contest can be whatever challenge we choose. It does not have to be epic or of interest to anybody else. If a reasonable goal is to feel good about ourselves, that can happen. It is easy and unfortunate to get psyched out and give up the ghost.



9 Responses to Givingup the Ghost

  1. Rita October 4, 2017 at 7:21 pm #

    This post is a reflection of exactly what I am dealing with right now. I visited my Neuro so he can sign my bi-annual disability paperwork. Yada, yada, yada and at the end he ask if I feel depressed as my disease marches forward with no relief on the horizon. He pushes the “latest ” drug I say no that’s when he pushes depression drugs as an alternative. That’s when I get up thank him for his signature and say I am not depressed. I am disappointed with the medical and research communities for giving up on us. The EVERYDAY life with MS is exhausting so we silently scream with each bottle opened, utensil held and dropped, attempt at tying or buttoning anything, walking, sitting, moving about of any kind. Our faces rarely tell the story of our struggles. Today, you hit the nail on the head for me with this post. Glad I stopped by.

  2. Jan October 4, 2017 at 9:02 pm #

    I truly and sadly get all of that. Things seem to be getting harder by the year, month, week, and day. I still press on but admit that it is not easy.

    I still swim, but it took an unbelievably long time for my feet to even get into my pool flip-flops…I realize that I somewhat kid myself that I am more normal than I am because this is anything but that.

    Still, I do not give up.

  3. Christopher October 5, 2017 at 3:59 pm #

    I am not giving up either… but I also don’t want to live like this any longer. I keep getting these damned UTIs that cause major relapse after major relapse, and my disability progression has jumped ahead with terrifying speed compared to how it’s limped along for years. I’m in a nursing facility again after two UTIs in a month (the second one was caused by the steroids lowering my immunity). I’m really scared, and beyond depressed now. I’ve been away from work for 5 months, I’m only receiving money from the state (53% of what I normally make, which is paltry), and my insurance ended a week ago and converted to COBRA (which I can’t afford). My family doesn’t really know the whole picture, and they couldn’t help anyway–all local relatives are septuagenarians, and my brothers live 1100 miles away and have their own health issues (all three of us way too young for this). I fear I am close to losing everything, literally, if my situation doesn’t start to change for the better. I’m not giving up, but it’s extremely difficult to find the energy to keep pushing forward.

    It also doesn’t help that the rest of the world seems to be falling apart and suffering from a massive dissociative fugue. I will still always have time for anyone who needs me though. That will never change.

    • Rita October 5, 2017 at 6:07 pm #

      Well Christopher you’ve always got the BEST research so this group will always need you. I have MS brain fog. I can’t read and absorb shit loads of information like I use to so your truncated answers always help me sift through everything. Thanks for choosing to continue to fight even as the battles get harder. You inspire my fight.

    • Dee October 12, 2017 at 11:12 pm #

      So many thoughts and prayers going out to you Christopher.
      This damn disease sucks!
      Just know you’re not alone in this struggle and unfortunately we all “get it”.

  4. Jan October 5, 2017 at 4:25 pm #

    Christopher, I feel the need to reply. I am so sorry for all that you are enduring. Truly very sorry.

    Something of note is your last sentence: the value you provide to many others—please hold onto that thought.

  5. Louisa October 5, 2017 at 4:37 pm #

    Hi Christopher,
    I really do not know what the hell to say, but I do not want to say nothing. I really hope that things improve for you soon.

  6. Jane October 7, 2017 at 10:04 am #

    Everyone who contributes to this blog helps me beyond my ability to express. Let’s keep pushing forward. We are in good company.

  7. Ken October 24, 2017 at 3:19 pm #