Anger · Craziness · Family · Fear · Health · HELL · Hope · Love · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings · RANDOM · Silly · Strength

5am… Oh Mr. Sandman!

Nights like these are beginning to piss me off. Mr. Sandman must have lost my freakin’ address. My night has been watching movies and trying to sleep.

I realized after reading yesterdays blog, I really haven’t gotten out of bed for a while now. I’ve been thinking about the ‘why’ I haven’t. If I am truly honest with myself, I know the reason… “What’s the point?” I could get up and sit in my wheel-chariot, but then my ankles become kankles, and I really hate that. I’m no longer able to drive, so I can’t just get up and go out. Unless I have help, I can’t even get out of my bed to get in my chair. So, again, “What’s the point?” I feel safe here. I really hate being out in public. I’m in a body I hate, and frankly I don’t like people. I’m not me anymore.

Some might say I’m feeling sorry for myself. Well DUH! I’m fucking human, of course I do at times. Anyone dealing with a progressive illness is lying if they say they never feel sorry for themselves. It’s human nature. I also feel anger, sadness, emptiness, loneliness, and the list goes on. My body is broken and it’s messing with my head. I try so hard to find the ‘positives’ of life, but when you can’t even sit up in bed without someone pulling you up by your arm, positivity is hard to find. Then the fear sets in. Will tomorrow be the day I wake up and my body no longer moves at all? Every night that thought crosses my mind. I’ve lost 2 dear friends, younger than me, to complications of PPMS. It’s fucking scary. And please don’t anyone say it could be worse! This IS my ‘worse’. Death would be easier. I’m so tired of fighting this all the time. But, I’ve never been a quitter, so death is not an option. But, I’m just so fucking tired!!

I know some of my emotions right now stem from the loss of my mom. But honestly, there’s nothing wrong with telling it like it is… the cold hard truth. So many people with with debilitating illnesses keep their inner thoughts to themselves for fear of what others might think. Yes, I think of death, and how much easier it would be. Will I go there? NO! But, the thought is in my head at times. It’s much healthier to talk about it then keep it bottled up inside. People with disabilities unite!! It’s okay to be sad, it’s okay to feel sorry for ourselves, it’s okay to be angry as hell. We need to vent it out in order to heal our minds. Honestly, if the ‘healthies’ and/or others don’t like it or want to hear it, fuck them! They’re not worthy of us in the first place. You really do find out who your try friends are when illness [serious illness, not a cold 😛 ] strikes.

People tell me all the time to think of the good things; family and my friends who love me. DUH, I know this, but I’d also like a little quality of life. No one but me lives in my body. No one but me feels my emotional and constant physical pain. My body no longer works, I can’t do anything without someone there to help me. My independence is gone. When my kids are in school and hubby is at work and I’m home alone, it’s terrifying. I can’t get out of bed or do anything for fear of falling and hurting myself. It feels like i’m in jail.

There’s a line from one of my favorite movies, Last Holiday, that sums it up. “I would like to be cremated. I spent my whole life in a box. I don’t want to be buried in one.”

I know kind of depressing, but my feelings in a nutshell.

 I’m not getting better. I will keep progressing. Scary part is that progression at this point is heading towards total paralysis. Oh joy!

I am looking in to a new neurologist. After 16 years with the same one I feel he’s getting a bit lax. I’m also looking in to a wheel-chariot that has a reclining and raising option. I’ve been looking for clinical trials for PPMS, but most say the patient needs to be able to walk 20 feet to qualify. Are you fucking kidding me. I even looked in to a trial for incontinence, and didn’t qualify. SERIOUSLY!! I’m the incontinent Queen for fucks sake. If they can help me, they can help anyone! 😉 There’s all kinds of new medications for RRMS. Shit, if they could find a medication for the progressive form, that works, they could control RRMS completely. Get on it you researching fools!!

Well peeps, it’s now after 6am. Think I’ll find another movie to watch. Preferably something boring that will put me to sleep. Where’s my ole economics professor when I need him. lmao

A quick note, I’m reading some cool spell books. Who knows i may be able to cure myself. I believe in the power of nature and balance. Damn, I’ve tried everything else, it can’t hurt to give this a go. I’ll keep you posted.

Ta-Ta for now. Love and Light

6 thoughts on “5am… Oh Mr. Sandman!

  1. I’m sorry to hear that you are feeling so low right now, but at the same time I can empathise. I addition to MS, I also had years of debilitating chronic pain that was thought to be caused by the MS (but was actually a tumor on my spine). The tumour has been dealt with and the pai is now gone, but I had a lot of dark days, thinking death would be so much easier and never leaving my bed. I’ve had 4 pain free years now, but am also facing my MS progressing. I can’t feel my lower half of my body and walk like a drunk (and occasionally fall over). It’s easy to get discouraged, isn’t it? I do fine that I eventually manage to get used to each new reality and cope, but some self pity is normal and part of getting over it for me.


  2. Tracy – it breaks my heart to read your posts. But your honesty is so admirable. I know you don’t want to be admired for this. You want to be back to the old you. The sentence “No one lives in my body” is very powerful for so many reasons. And don’t tell me it could be worse. People just want to be heard. You need to be heard, not comforted as what can one say, they are words, hollow sentiments meant to placate. So I will not offer any. I hear you. I can’t help you. I can just read your words and respond like this.
    You are brave for writing down what is feels like to be in your body. Maybe people will be helped in their own lives by reading your truth.
    I hope you get some sleep. That seems really unfair. You need sleep.


    1. Sometime you just need someone to listen, let you vent with no judgement. It’s almost ‘cleansing’ in a way to get it all out and move on.
      I hope, in some small way, my purging helps others.


  3. It saddens me that a wonderful, beautiful person (YOU) has to be afflicted with this bitch of a disease, while mean, cruel people walk this earth with nothing wrong…it is not fair! I know too well pain also with my chronic condition, as does my sister afflicted with RRMS, it seems as if others just don’t understand how lonely and sad we all feel at times. I guess the Internet has been a good thing where many people can gather and unite and soothe each other and support each other.

    I am always here Tracy, never forget that! xoxo


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