Chronically Something

Can’t say it better. Had a day like this today too. Would have been angry at myself if i had the energy. Made it out to my appointment by sheer force and apparent willingness to risk mine and others lives driving there because I’d cancelled last week and the week before so I had to go today. I survived getting there and upon arrival my counselor looked at me and said “Wow. you really look like shit.” Thanks. I’m glad I have a therapist to remind me of these things… you know… since my MS screws up my short term memory too. heh. 

bunnyears:

Today was one of those days. I am so tired. Cannot stay awake, cannot function. 

My legs feel so weak, my arms heavy as lead, and the exhaustion explainable. 

This is not a lazy day, or being tired, this is a life draining, I-cannot-function-in- anyway, kind of fatigue. 

Today, as I lay here crying, wondering why I am so lazy, so useless, so unable to do things I want… It dawns on me. I have MS. 

Yes, most of you already know that, I know that. Yet I tend to try and deny it. But sometimes my body simply will not let me deny. 

My new bedroom furniture came today. All set up in my new bedroom and I could not even muster the energy to drive the 2 minutes to the house to look at it. I did not have the energy to even get on the computer much. Even typing this is exhausting. 

I hate days like these. 

Oh man do I know this feeling far too well. *hugs and cupcakes*.

I met with a prof while on high dose of prednisone. He called me into his office and I sat down in the chair while eating a luna bar and proclaimed “I’m on steroids so if I burst into tears several times during this meeting don’t take it personally”. I think he was afraid.

cydneycakes:

also,

Things have gotten pretty bad around here both health wise and financially. I put in my preliminary SSI application and received the followup questionnaire this past week. The form came already 10 days past the date on the form while demanding I get it back to them in ten days. It’s getting to me today. After 5 days of working on it on and off, wanting to provide the most accurate details of my condition and ability to function, I’m exhausted and kind of depressed.

I appreciate that they want details about how my disease has changed my life. I think its important that they hear these things when deciding if I’ll get any help getting on with my life or not. I want them to really understand what things are like for me now. What I think is forgotten (on top of the massive number of questions and intense time and energy it takes to fill this thing out) is that you are asking me to sit down and write pages and pages about every thing that I can no longer do. They want me to describe every part of my life that sucks and exactly how much more it sucks due to the illness than it ever sucked before. I’m to detail every ache and pain, every anxiety attack, all the new found embarrassing moment, everything I’ve had to quit because of this illness and how people around me have reacted and how many people have left my life because of it. Please tell us how your hopes and dreams have been crushed by this. Tell us why you’re failing at functioning and need help from the state because you can’t do things by yourself. Tell us how much pain you’re in and how long it lasts and if you can just drug yourself to get over it or if that doesn’t help. Tell us all this, in detail, in 6 different ways, and let us decide then if you are disabled or just lazy. Don’t worry we’ll get back to you by December.

As a younger person my fear of this application is intense. Representatives say I’m not old enough, don’t appear broken enough, have had too much education I couldn’t finish, to need help. Never mind that I’ve never been able to ask for help in my life. I’ve always the helper, fixer, therapist for those around me… that people have started resenting me for not being able to do that anymore. Never mind that I worked for years on a PhD that I will likely never finish because my ability to read and process has declined so much I can’t remember what I read when reading the abstract of an article. Oh and not to mention that the people I helped are graduating and I can’t lift the boxes of articles I intended to use. Now I think about being able to get to the grocery store since I’m alone and if I get stressed I can’t see, now I think about if I can keep smiling so as to not bring down my friends and family. I don’t know.

I think this post is really just my needing to say, nothing feels like taking a hot bath in salt water after having your skin ripped off like sitting down for 5 days and detailing everything thats gone wrong with your mind body and social life since you were giving a diagnosis thats precursor was also decline. It hurts. I can only do so much at once… and I’m worried I’ll miss a deadline (the one they already missed for me)

I know I’m whining here. Please don’t get me wrong. I am grateful that resources exist that I might even maybe be able to take advantage to help me try and get my life back on track. I know this is nothing in comparison to so much else happening in the world, to people every second of the day, that this is just a hurdle I need to jump through. That I was so lucky to begin with that I should be glad I had this far to fall.  I know these things. I believe them. I really do. I’m angry at myself for letting this get to me so much. Sometimes, though, even when we know we are lucky it doesn’t stop the emotional exhaustion that it causes. Because the food stamps I was just able to get are a miracle but they don’t pay the rent. I just found a neurologist that could actually run the proper tests and will take my insurance and I still haven’t found a treatment plan that works for me.

This is not a unique story!  Mine is mild to say the least. This is the story of so many people suffering from chronic illness, whose children or parents are suffering from chronic illness. Contemplating treatment options with high risks, getting tests run every other day, all while wondering if you’ll be able to pay the bills this month is painful, literally and figuratively. I’m sure you all understand that with chronic illness exhaustion doesn’t just stay in your head… we are the mind body connection personified.

Blerg. So I suppose I’m giving up on finishing this paper work for tonight. I slacked on it today. I should have finished this faster. I just can’t do it anymore today. I hope this doesn’t end up screwing things up more than they are now.  I’m just so damn tired.

I would like to offer a reward to anyone that can invent a switch. Its awful.. but they say it makes us more intuitive. heh. when we aren’t busy panicking about something that was done or said 3 years ago and the 8000 ways it can be interpreted.. heh. hang in there.

sickandstrong:

Why can’t I stop over analyzing this?

What I wouldn’t give to have an off switch for my brain…

This is awful.