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.....

Friday, April 12, 2013

{suddenly this feels like AA}

On Wednesday I finally got to see a neurologist and finally got some of the answers I have been looking for. So now I have a firm diagnosis, something to define what is happening in my life. I'm not stumbling in the dark or wondering about the what ifs. It is something that can't be cured but it can be "managed". For now I am thankful that it wasn't something else, something degenerative. But it is still hard to come to terms with. Life, as I knew it, will never be that way again. And I think this is the part I am finding the hardest to deal with. It isn't just a broken bone that is going to heal, or an infection that is going to clear. I have a chronic disorder {is that even what they labelled it?} called fibromyalgia

I do a pretty good job at keeping it together, or at least making it look like it. But the truth is I don't have it all together and I'm not coping. My house would be the first tell tale sign for anyone who knows me well. Lately it has been strewn with dirty clothes and dishes, toys all over the floor, clutter all over the benches. Don't even ask me when I last time I moped my floors or scrubed my bathroom.

Yes this is me. Queen of clean and everything in it's place.
No I haven't gone to some intense therapy or finally given into the "it'll wait", "don't stress too much", "everything can't always be perfect" slogans.
My life has literally gone beyond my breaking point.

I can't tell you the last time I read my kids a bedtime story or didn't get angry and yell at them for asking me to tuck them in bed. I haven't met my kids teachers and we just broke for term one holidays today - I have had eleven weeks! serious soaking in the guilt of bad mothering.
Everyday I feel I fail them more.
I don't know how to react when I see their behaviour because I'm not well again or I haven't made it to something for school - yet again.
I don't know what to say when they yell and cry at me for always being sick and never taking them to do things anymore or having their friends over to play.
It breaks my heart to know I am not the Mummy I was.

So what has stopped me from all these things?
Have I suddenly done a reverse flip and learned to be the opposite of everything I ever was?
Because some days that's exactly how it feels.
 I don't know what happened to the woman who enjoyed life, looked forward to doing things with her kids, was proud of her house, spent every spare minute baking, sewing, crocheting or some other craft. What happened to the lady to looked forward to seeing her friends, couldn't wait to pick up a new book to read or see a movie? Where is the drive that taught me to write with both hands just to retain study information or my passion for music?
{yes I have pretending to try and still do all these things over the last few months to keep up appearances but it just ends in tears with me feeling exhausted and inadequate}

Instead I have been swapped for someone I don't even recognise. Someone in unbearable pain - constant headaches and migraines, burning and aching muscles, tingling and numb limbs, chronic fatigue, irritable bowel, a dairy intolerance, disrupted sleep, multiple chemical sensitivity. And those are just some the physical symptoms.

Then there is the days I can't think straight, or decipher words spoken to me. When I can't get words out because I stutter or jumble them up or can't find the word at all. When I can't concentrate to read, drive, have a conversation or even watch tv. Or when I am so emotional, angry, grumpy, sad, anxious, and the most common of my symptoms vacant.
Brain fog they like to call most of this except unlike fog it isn't just there for an hour or so in the morning before it clears {It can last hours, to days, to weeks - jumping between various symptoms or stuck on one}.

I'm sure there are only two people who see me at my worst. I know I have sometimes let friends in on a little but I never fully let my guard down. But for most people they wouldn't know any of this existed.
When I go out I suck it up and I pull it together the best I can. I hide behind dark glasses and sarcastic comments, when all else fails. When life is even to unbearable to pretend for those few hour I hide.
I stay home and I hibernate.
I shut myself out and I avoid at all costs.
Never letting anyone see the reality of this world I am in.

But the reality is it is getting too big for me to expect just one or two people to carry the load of. I see the worry and the wear on their faces and know I need more help. So this is just step one. Admitting I have a problem and I need some help and I am not okay anymore  - even though tomorrow I will still smile and still pretend to be. This is now my life not able to be cured but somehow needing to be managed.
{(without caffeine) which when you already feel extremely tired and crap and it has been the only thing to get you through the last few months it is a hard thing to hear}