This is NOT my life… where is my real life? If you find it, please reply here with the location.

I realized that I have not been out of my home for over 3 weeks. I just have no desire, no oomph to do anything. I know it’s not about the Ampyra as I’ve only been on that 2.5 weeks. It’s been so hot here and heat is no longer my friend. When I say out of my home, I mean that literally. I look outside, but have not even gone outside. I have no desire, or care much right now to do anything.

All my kids are back in school, hubby working, so I’m alone all day. I do not drive, can’t work, and sometimes I really feel like what’s the point. I have no energy, my fatigue is off the charts. [even with the anti-fatigue meds]

And please, please do NOT say, “It could be worse.” or “You’re only given what you can handle!” BULLSHIT! This is my ‘worse’. I need help to get dressed, to shower, sometimes to eat when I can barely hold the utensils. I wear my pj’s most days all day as by the time I get up everyone is gone, and it takes too much energy to get pants on by myself. Luckily, I love my pj’s and have many sets. I guess unless you ‘roll a mile in my chair’ you’ll never understand. The helplessness, the loneliness, the depression that sets in. Maybe it’s a ‘healthy’ thing. Usually it’s the healthy ones that makes the above statements. Their biggest issue is what to wear, having a busy day, what to cook for dinner, ‘oh damn’ have to drive the kids around, etc. etc. etc!! PLEASE!! I know this to be true as I was once there and took soooo much for granted. Like ….. walking for instance.

my legs...

I’m tired of always feeling like I have to be shiny happy all the time. My life SUCKS!!! I know, I know, I have a gr8 husband and kids and family and friends…I get that. But, I have no purpose. Without a purpose what’s left. Feeling useless is the most depressing feeling of all. I have not felt like nor have had the energy to make anything for my shop in weeks. My hands cannot hold the tools very well right now. SHIT, SHIT, SHIT!! Who really cares anyways.

EXACTLY!

Blessings and Hope! [still waiting]

Comments
  1. coachmombabe says:

    Wish I lived close enough to come see you. Give you a hug, make us some coffee, cry, chat, laugh. Wish wishing could make it better. (((<3)))

    Like

  2. Vicki Day says:

    well we care honey and wish I could come over and take you out in a dark windowed limo so we could drive round and scare the natives and be naughty and no one would see your PJ’s and you could laugh.

    Hey your allowed to bitch – so bitch and we will send hugs from across the pond………

    Like

  3. Ruby Cantu says:

    Well you know I know all those feelings of uselessness…totally sucktastic. You don’t have to be shiny with me, I’ll take you just the way you are.

    Like

  4. Kathy says:

    I feel you…wishing for brighter days for you.

    Speaking of which, when we start our trek back up north (we’re moving sometime in Sept. or Oct.) is there any chance I can get you out of the house for lunch? Or just stop by to say hi (you know, face time? Something us people with chronic illness who live online don’t get much of?) It would be nice, but I get it if it’s not possible. Totally!

    Like

  5. Mimi says:

    I’m so sad for you because I’m sad for me. You are right about attitudes and how they change with the varying degrees of disability.

    But, then you stated, “But, I have no purpose. Without a purpose what’s left. Feeling useless is the most depressing feeling of all.” It’s so frustrating at times—so much of the time. Would it help to talk to someone other than those who love you? I find I don’t turn to my husband and kids because I don’t want to burden them with my angst. My friends? What I tend to hear from them is, “I’m tired too,” or “I don’t get around like I used to when I was younger either.” I want to shake them.

    So here we are, fellow MS-er, looking for our purpose. Maybe what we are going to discover is that our purpose at the time is supporting each other.

    Keep up the writing. It’s therapeutic for me because I am corresponding with someone who can relate. And when I respond, I’m sorting through my own thoughts and feelings.

    Thanks.

    Like

  6. Hazel Quinn says:

    {GIANT GENTLE HUG} I DO know what it’s like, Tracy, spent years on and off like that. You’re right to be damned fed-up, angry and eroded. WE CARE! You’re an amazing. special person, in your PJs or not. Without you the world would be a lot darker place… ♥ ♥ ♥ ♥ xxxxxxxxxxx

    Like

  7. Frannie says:

    As cute as they make PJ’s now a days, who cares If you wear them all day =) throw on some cute shoes, maybe Uggs and have a good comfy day.

    (((Hugz))) ❤

    Like

  8. Frannie says:

    Hey I left a comment and didn’t show up ..pooh!

    Like

  9. Deb Darby says:

    I’m here today thinking of you.

    Yeah, it’s stinkin’ HOT!

    xOOoXoOO

    Deb

    Like

  10. R. G. Maines says:

    I think you know I ‘get it’. I’ve been having such ups and downs with emotions lately. The downs are devastating! Not having my wheels has been an unbelievable set back. The manual loaner chair they gave me gives me wheels under my ass again, but not being able to ‘power’ it, as the disease is in my shoulders too, has been a kind of a slap on top of everything else.

    We’re all allowed to have ‘down days’, to feel bad about life… ya just got to hang in there.

    (((Hugs))) oxoxox

    Like

  11. Mary says:

    If you only knew how much I wish that I lived closer to you..this on-line talking does not take the place of a real shoulder to cry on or holding a hand..it hurts me when my friend hurts..I am here for you, please remember that!

    xoxoxo

    Like

  12. neicy says:

    Hey there my friend, I can only imagine what hell you must be living in atthis present time. I know you don’t want to hear this but the statement is true; “THIS TOO SHALL PASS” it just has to take it’s course, but thank God for each new day you do get to see and you have your wonderful children there with you. As someone else has said “I too wish I lived close enough to come and be there to help assist you with your daily activities.” Mz T. I know its hard to bare this trial your in all of the pain and discomfort, but it will pass in time just hold on my friend, hold on.

    I do know something about trials, and they don’t feel good, and they don’t last either lol. But just know that you do have not only Jesus on your side but a whole sh** load of Fab40 sistah’s holding you up in spirit, Love ya!

    Like

    • Tracy says:

      TY Neicy!!

      I don’t even expect it to pass, but at least get a bit better. For 13 years it just keeps getting harder every day.
      You know me though, I’ll hold on until my hands cannot grip anymore! 🙂
      Thankfully I am a fighter, just every now and then it gets overwhelming!!
      loves ya back!!

      Like

  13. Shady says:

    Being brave does not mean you never have doubt or pain, it means you rise above it. We see that in your words every day. And to get to the inspiration, we also listen to the bad stuff and worry and grieve right along with you. But we don’t let it beat us, and I don’t think you will ever do that permanently either.

    You don’t need us to tell you what you mean to your family, and I bet they’d surely disagree in that you have a purpose to them. Your reach goes way past your family now, thanks to the internet.
    Thank you for sharing with us.

    Melissa

    Like

    • Tracy says:

      Hi Melissa!! I just hate my ‘pity party’ blogs. But sometimes it get to be too much and I have to get it out. Better here than at my family! 😉

      I am blessed having such awesome people in my life to support me…like you!!
      Thanks so much!
      xx

      Like

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