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!!


  1. I will validate you. YES, that IS a flare. YES, SCLERO exhausts you. It doesn't just make you tired. It knocks you on your @$$.

    NO, you don't have to have any skin involvement to have Sclero. My first years with it had no skin involvement. Then I had skin issues for about 2 ears. Now, my current battles have no skin involvement. Count your blessings. The screaming pain from your joints, sucks BIG TIME. It is the worst pain I have ever felt .. IN ... MY ... LIFE ... but I'll take joint pain over skin involvement ANY day.

    Maybe you need to see a new doctor? Mine tells me that I can expect to feel like crap, but he also tells me that we'll work very hard to make it better. And we do. He does.

    I think something's in the air right now. I am flaring as well. So is another person I know with RA. And we all live states away from each other.

    Rest. Rest. Rest. Be well. Email me if you'd like to vent more.

  2. Bless Your heart Lo Jo!!

    You are beautiful and I love ya for the validation!!

    Thank you!! And yes I will shoot you an email, and please, you do the same if you're ever in Funky Town. I am always here for you too!!

  3. Stacie, it does get better Iam 9 years with the big S most days are good.Give yourself a brake your not lazy,people don't understand the diff between being tried and having to fight a disease 24/7,Just rest you'll be back in fighting form soon.Thank you for your Funky town post, I was just there after finding out I may now have Menier's desease on top of the SCLERO.It's nice to know Iam not alone,Thanks again. Robin

  4. When Scleroderma was kicking my butt, it took every once of energy to get up in the morning, get to work, and get back home to collapse and do absolutely nothing. Beyond going to work I was useless. That lasted about 12 months from when it started until I improved after being on cellcept.

    What you describe is very understandable to me and not abnormal.