Tuesday, April 16, 2013

Processing Me

Today I don't feel like doing anything. I just want to lay in my bed - if only these were the words from a pop song titled the Lazy song. It describes my life down to a tee right now.

There is so much going on in my head. I am slowly chipping away at all the information I am finding about Fibromyalgia. I am trying to come to terms with a "label" and find how it can help me.

I have found some really good support groups on Facebook:
Fibromyalgia Support Australia
Fibromyalgia Network {which is a world wide support network}
Hunter Region Fibromyalgia Support Network {NSW Australia}
Hunter Fibromyalgia Support Group {A closed group so that what you share here isn't shared with the rest of your facebook network. Giving you some privacy}

 These networks have proved invaluable over the last few days.  It has given me a place to ask questions, to vent, to listen, to provide others with support and mostly to not feel alone. The biggest thing in the last twelve months is I have felt like I have suffered with a silent and invisible illness. At times I have felt like I am losing my mind because the doctors couldn't find anything on tests, yet I just could not get better. I tried to get over it, I tried to get out more, to be happier, to run at life BUT all I got was sicker. I got good at hiding it from everyone but slowly I have disappeared more and more.

I know I have a great bunch of friends and family who are ever understanding and willing to help but it is hard to "get" what is going on. I'm sure there are days when they have all thought can't she just get over it and get on with it already! I myself have been one of those people thinking it. Unless you see the daily ups and downs of this disease and the how it smashes you around it really is hard to understand. I am good at putting on a brave face when I have to leave the comfort of my fort {our house} but within these four walls lately I have built a place where I fall apart and crumble. A place where I am no longer strong and the one with the answers. A place where I don't know who I am??

It is a relief to discover other people going through similar circumstances. There is nothing like reading someone else's story and thinking 'that is me' and suddenly not feeling so alien. Or hearing someone else share their story of hardship and thinking 'you know what? Today I had a pretty good day, I should be thankful.' It really helps to put things in perspective. [Which is something I haven't had a lot of lately.]

I have realised lately I have become really selfish and self centred  and I really dislike it a lot. It usually isn't until I leave somewhere and realise that I didn't help clean up, or I didn't do anything but talk about myself. I miss out on finding out how my friends are because I am so centred on me. I really really DISLIKE it. I do it with my friends, my kids and my husband..... I was not this person! Where have I gone??

I have also found great resources which validate all the things I am feeling and symptoms I have. Like this Ridiculously Long List of Fibro Symptoms - Take a look it might give you some idea about the "invisible and unrecognised" disease I now have the pleasure of knowing.

So for today - Today I swear I'm not doing anything, nothing at all.....

1 comment:

  1. Hey Jess,

    I am firstly so glad you finally have a label for it all. I know a little bit about how it feels to finally have a reason for feeling so shit. I have Ank Spond and it's not as bad as Fibromyalgia but it has its moments.

    Cut yourself some slack and know that the people who matter will be there with you even if you are being "selfish". Which I don't think you are. It takes a long time to accept a chronic condition - especially one that causes you pain and fatigue. It's taken me 12 years to get used to having mine.

    I hope you know that if you need a shoulder to cry on or to vent at - I'm here!

    You are going to be ok, and you will learn to cope a little better but having a place where you don't have to be strong is a gift!

    Love you!


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