...and I NEED to feel in control.

I hate it when things become unpredictable, or when people see through the pretend and are nice to me. Somehow its harder to deal with genuine nice than it is to deal with being ignored. I have to pretend so much that I'm not really sure what the real me is or even if there is a real me, I got asked when I made time for 'me'...I hide in my room and there I can be me, you see the real me, the people I reach out to get glimpses of the real me (and then I feel guilty) but I try not to do it too much.

Several things have happened this week:

I got listened to by health professionals, like for real, on several occasions...
I got told to "take care of myself", and when I replied with "I'm not very good at that" she said "that's why I told you"...
I found out that my 'mask' is pretty good, even on half an hours sleep
I admitted that maybe, just maybe I have a few demons locked away that need sorting
I found out how easily I get freaked out when someone takes away my control of a situation
I made a whole room go instantly quiet (I fell off a plinth right on my SI joint but I'm sure its fine)

Its going to be a hard road ahead, one I don't want to take but I know I have to. I am seeing how my reaction to certain situations screams out how I don't feel worthy of others help, I want to help people, but I don't feel like I deserve any help myself. I cant even take compliments and that is so sad, I feel like I am wasting their time or being a bother. I also got told (once again) that I am far too hard on myself, another thing I am trying to work on but its becoming all too clear that I cant do this on my own (my immediate thought on this is how pathetic and weak and crazy that makes me-things I've been told I am not) so help here I come but just treat me gently, I'm fragile underneath all this pretend.

CRPS I hate you.

7 comments:

RSDsux said...

Oh Felicia hun, I am SO sorry that you are having to deal with all of this ((hugs))! I am so glad though that you have realised that you finally need to help and are willing to accpet it - I KNOW it is a scary prospect, trust me I do BUT if it can help you and make your life somewhat easier, then you must take it!! I hated the thought of my mum having to help me at 12 years old but I honestly don't know what I would have done without it! It took me ages to accept help and I still cant ask for help now but it has made life somewhat easier in some respects!!

I just wanted to let you know that I DO understand some of what you are going through!! Like you, I always put on the mask and tell my friends and family that I am OK because I dont want them worrying about me all the time or to think that I am always complaining. My mum always tells me that I can tell her exactly how I feel and I do sometimes but other times, for some reason, I don't as I don't want her to panic too much.

Please know that if you ever need anything, I am here for you and don't you ever be afraid to accept help ... you need it and it doesnt make you weaker then anyone else - if anything, it is making you stronger for accepting you cant do some things - always remember that!!

Love you and am here for you always! Take care of yourself and please keep blogging and letting things out!!

Anonymous said...

To My Candy Coated Friend~

You are what I used to feel about myself...a hard shelled M&M whose shell truly isn't all that thick (although we will try hard to make out like it is to others) and all it takes is a simple crack for the soft, meltable inside to come flowing out. We try to build it up though, layer by layer, hoping that the more control we have over our bearing, our feelings, our situations and life that we can "be okay". But truly we are doing ourselves a disservice. Without helping ourselves, without watching out for ourselves, without taking care of ourselves we can NOT take care of others...physically, emotionally, or in any other capacity.

We can try, we can pretend, we can put on a good show...but behind closed doors, as we investigate our cracks in private, we see how truly breakable we are and we do all we can to put things back in place, a patchwork job of sorts...instead of focussing on prevention.

You are young. With time, situations, life experiences, and good 'ol triumphs and tribulations God hands to us you will become a much stronger person...inside and out. And, it will be for real...no acting involved. You will grow into peace internally and with your surroundings...YOU WILL.

Yet, at times you will feel that it is all coming apart at the seams...but you will know that it isn't really, it is just for a moment and you know that with all you've already gone through THIS time it will be easier...easier to pull yourself up by the boot straps, take a long glimpse in the mirror, and say all the wonderful things to yourself that you DO appreciate about yourself and all those silver linings and beautiful parts of all the things that used to feel so negative...those burdens. You will learn that you are strong, capable, and deserving.

You need to listen:
http://www.youtube.com/watch?v=LTlDVPL1fIQ

Lisa Moon said...

This is a wonderful thing to realise: that one does need help... and as RSDsux said, it doesn't make you weak; in fact, it indicates the strength you don't realise you possess.

You have a lot on your plate and it's a tough thing to be in school, let alone dealing with this nasty beastly disease we live with... plus the other assorted life challenges we all must work through at various times - much to our chagrin!

Taking some of that burden off yourself can ease your load in many ways, my friend. You are brave and will be brave in trying to share that load with someone else. I just know you can do it!

It's terrifying to feel out of control and RSD/CRPS is another of those things we can't control and it just kills us, right? Well, figuratively, perhaps, but it need not literally!

You DESERVE to be helped
You DESERVE to be listened to
You DESERVE to have real friends who care
You DESERVE to take time to care for yourself - when you find just what that means!
You DESERVE to get a good night's sleep!

And most of all I wish to tell you, borrowing SHCs M&M analogy: when your shell is cracked and all the soft parts are exposed and risk seeping out... you will find that you CAN survive this - and that by looking into the dark corners, they lose their hold of fear.

I know, because I have done this. It feels MUCH better to hold a candle up to those scary corners and say proudly "Nasty monster! You no longer have any power over me!" and have it be true!

It takes time, work and a caring partner to help walk you through it... but you CAN do it!

You have people here to reach out to when you need a hand to hold, a hug, a reassuring word as you move forward.

I'm so proud of you!

Much love and friendship, brave sister!

<3 Lisa

Noveling Neurotic said...

My love-

I love this post because it's so real. I proud that you can admit to living pretend. I do too, I admit it. Needing help is scary and I do many of the same things you do. Letting go of control is something I just can't face. It's an issue, I've come to learn. I wish you the BEST BEST BEST.

HUGS HUGS HUGS. ♥

Alessea said...

Thank you each and everyone of you for reaching out to me the way you have. I still lie to myself that I am fine and I feel like I have gone through enough to be able to just cope with everything. I got brought up in a way that meant I never said if I was hurt or sick, I was still required to pull my weight and get on with everything. So it feels like I am showing such weakness admitting I need help or that I don't feel so good. Its hard to break away from that model I grew up in. And I'm not blaming anyone for how it was, because obviously that was the way in which we were able to survive, its just made things difficult for me to change now. But I'm working on it, slowly and surely and I also know that a lot of my experience is letting me empathise with others...only yesterday my clinical educator said that I handled situations very well, that was due to me being able to forget myself and just help someone else in a similar situation.

Thank you again my special raw friends (as in you see the raw me not the dressed up). You are the reason I am wanting change, you have shown me how important it is.

Tough Cookie said...

Oh darling, so I ever know the feeling... These days are tough. Graduate school is sooo difficult. It's such an elite institution, and they work you so hard for that reason. The best of the best... Always remember that if it will keep you healthier, it may be worth it to talk to your instructors, get in with the disability office, and lighten your load. I truly believe I am saving myself a lot of progression of this illness by cutting back.

You have all of my love, always, always, always...

<3 Maria

Caf said...

Oh I'm sorry things have been sucking so badly lately!! You DO deserve compliments...everything you put into that mask is a part of you, the faces we show different people aren't fake, they aren't make up beings...they are faces of us. Everyone, pain suffering or not shows different faces to different people in their lives. YOU are the person inside, YOU are the core being, the morals, the voice that says 'yes I like this' or 'no I don't'...the voice before any of that is influenced by outside opinion...that is you. Don't feel guilty for the face you show others in order to get by, it makes it easier to stave off depression when you aren't going around expressing it all day...does that make sense? I'm trying to say, see the mask as a freedom, not a prison...why shouldn't you create a way to escape constantly discussing your pain because that is what other's see and ask about? I see 'acting' to in order to have a distraction from the pain and also from feeling afflicted as a handy coping tool. I agree with the fact that you are strong, my friend, you are here and fighting and this is such a huge monster...sometimes a little time to ourselves just to sit and be alone behind closed doors is so necessary, it's hard for other's to understand, I don't think there's any shame in using alone time as an outlet and a space to recharge :)

I wouldn't mind a little control around here also ;) xoxoxo