Monday, August 29, 2011

Chicago - My Kinda Town




Well I am back from my trip to Funky Town... feeling a tad better emotionally and getting there physically. 

I am just not a good tired person, and this fatigue really does kick your a**. No Joke. I mean its an obviously "Soul" crushing fatigue (as you can gather from my last post) that can emotionally devastate you - and if you are not in the right place emotionally when it hits - Well, then you go to Funky Town for a while. It' like walking through pudding during severe cloud cover. You just want it to thin out and the clouds to lift so you can feel human again. It's not fun and I think my body was just plain beat!!

I had gone to Chi Town - my old childhood stomping grounds - with my sister and mom for a week preceding my trip to Funky Town and I think perhaps that was the last straw before I made my left turn. 

We did a lot of walking around, which was amazing. It is a very pedestrian city - which I love!! And the energy there - forgettaboutit! The city itself is a living organism full of life, so how can you not have energy when you are there!! 

Sure I limped and did my infamous "Gangsta walk" as my husband calls it when my feet and ankles call it quits and I kind of half walk, shuffle and drag myself around. But that was physical and I knew I would pay the price for walking and it was worth the price of admission. I had a great time. 

What I didn't realize is the residual fatigue that crept in like a slow fog until it was right there and enveloped me. I think my body was just tired from the trip and when I finally had the "down time" to sit and rest, my body called it quits for a while. I guess I didn't realize what the trip had taken out of me, because it didn't happen during the trip. But I think at some point your body raises the flag and then it's over. 

I am less mad at my body now, and I must admit I am actually really proud of it. Like a general of an army - my soldiers marched on during battle - and when they finally made it back to camp, they collapsed. So thank you body for allowing me an amazing trip to Chicago!! Thank you for letting me smell the smells, and walk the walk and feel the vibe and energy of the city. I loved every minute of it. 

Your white flag went up and you surrendered last week, and that's is okay. I understand and know you will be back in action and ready for battle soon. At least I do now that I am out of Funky Town and a tad more rational now - lol. 

Ah - this up and down stuff is the worst. I think it's the emotional battle we fight that is harder. Never knowing what each day will bring and then having to adjust and accept at the opening of your eyelids. But it's okay - Because life is good, even on a bad day.. and even when you are in Funky Town.

I uploaded some pics of Chicago. Love that city. Hope you enjoy!!

 THANK YOU!!! 











Wednesday, August 24, 2011

Funky Town



I dunno friends.... I'm in a funk. I feel like I'm heading toward a funk of depression. I feel so out of sorts, so tired and confused. It's been two years since I received my diagnosis and I still can't get my head around some of it. What's real? Am I really this tired or am I just lazy. Am I really this sore after activity or just out of shape. Do my joints really hurt this badly or am I hyper focused because I have a "diagnosis".... Am I really sick because I don't look it. Is it really Sclero because I have no skin hardening. Would I have even fathomed two years ago that I would need to take rest stops to clean my house.


I was a vibrant full of life young woman and lately I feel like I'm just existing. I know that's the depression, but I remember when I had energy, strived to look pretty and keep myself looking good, now I just feel tired. I used to make sure my hair was colored, get a facial now and then, work on looking my best and now I slap make up on and go thru the motions cuz I'm tired. Hell i couldn't afford a facial now anyway.... I kinda feel Like the light went out behind my eyes. Am I still in mourning for the old me and how long does it last? Is two years enough time to get over the loss of...well, yourself? 


Logically -  I'm sure my recent move isn't helping matters, nor is our financial situation (moving depleted our savings) but I thought I was handling it okay. I'm a grain of salt half full kinda girl and tend to try and see the humor in most things - so on a conscious level I don't feel it's the money that's making me blue, but betrayal? From my own body maybe? From my "energy zone" if there is such a thing - cuz mine done went on strike!

I know consciously moving and money are the two biggest stressors, blah blah blah - but I truly feel this is about the Big S and my body, which is why I am being really candid and sharing.  I feel I lost my biggest ally. Me. I sometimes don't know who this girl is. I'm sure the fact I think I'm in the middle of a flare isn't helping... So I feel guilty for being lazy - but then I question, "Is it a flare - cuz I don't know what one really is?" Is it enough to be "Flaring" if I'm so tired I could cry, my ankle joints hurt so badly I have to wear a brace to walk, all my joints ache and I feel dizzy - or is that just part of being 40? Again - Today totally admit I am having a rational conversation with an irrational self.... I just wish we were having this conversation over Starbucks while shopping for a new purse, but this girl is tired!



 No one ever talks to you about this part. They give you lab numbers, meds and charge their copayment - but no one validates the fatigue or how you'll really feel ( I know all of us spoonies and sclero's l feel different, blah) but it would be nice if the medical community would focus on our humanity a little more. Our being. Reassure us and say; "You have this disease, your world is gonna change, your going to feel so tired you want to cry some days and it's part of the disease. You are okay. You are not lazy. Your immune system is fighting a battle 24hrs a day and sometimes those soldiers get tired and need to rest, be kind to yourself and let them"


 Instead I am left with doubt, guilt, blame and wonder. I don't do well as a tired person. I have said this before... I was type A all the way, Over acheiver and on the GO! So being tired and feeling lazy is a complete mind screw for me and I must say it is a struggle for my psych. So today I admit, I feel myself slipping into depression. Even as I type my wrists hurt but is that cause I think their supposed to. Is it my convenient excuse to not do as much cuz I'm tired.... Am I just tired cuz I'm depressed? Is any of this real? Is this all in my head?   I want to FEEL alive again...I know I will, but today I am having a pity party for myself and need to just work through it, so I thought I would write about it. 


I have said this before too... Chronic disease, Scleroderma - Is a confusing and lonely place to live sometimes. There are days you feel these doubts and sadness, and I think I would like to say it is part of the disease - just like any other symptom and therefore you must accept it and move on. 


Today I took a left turn into "Funky Town". I don't plan to stay long. This is just a short visit. A pit stop in my personal journey living with this disease.  I won't say it was a "wrong" turn because I don't think there is any wrong way to "Feel". I think feeling and being present in how you feel is a good thing. So today I had a Big Dark Scleroderma cloud over my head, but tomorrow's forecast? Sunshine!!