Chronic, unrelenting pain that radiates from one place to the next. Constant fatigue no matter how much or little sleep you get. Debilitating anxiety that won't or rarely lets up. Hyperventilating upon waking. Panic attacks. Tremors. Pins and needles. Breathing difficulties. Nightmares. Hearing problems. Vision problems. Eye twitching. Muscle weakness. Insomnia. Hair loss. Difficulty swallowing. Loss of appetite. Depression. Stomach cramps. Nausea and sometimes vomiting. Sore throat & sinus problems. Severe sensitivity to noise and light. Vertigo & dizziness. Memory loss.
That's how almost everyday is for me. By the time I've taken 12 of my 32 daily pills (and counting) in the morning, I'm ready for bed again.
No cure. No standard treatment. No awareness. No research when compared to other debilitating and incurable diseases. How the hell do you think that makes Fibro patients feel? We all do our very best. We do what we're capable of and most of all we try endlessly to hold on to HOPE. Hope that one day, we'll see a cure. Hope that this condition is NOT genetic so that our children never have to suffer the way we do.
I'm sorry if my disease is an inconvenience for you...oh wait no I'm not :) Believe me, it's harder on me then it is on you. This disease has stolen my life away from me at the age of 27, four months after giving birth to my baby boy. I'm sorry if it seems like I don't care about your problems right now...I do care, I'm just busy fighting my own battles and coming to grips with my new "life".
If I can't make a function, if I can't "do coffee", if I can't have visitors over, if I can't take your phone call, if it takes me a while to respond to a text or email, if I cancel at the last minute, if I say "no" to seeing you for what seems like the 100th time...please know that it has ABSOLUTELY NOTHING TO DO WITH YOU.
It's not me saying "no". It's the pain....or anxiety....or fatigue....or my complete lack of ability to put a sentence together that's saying "no". I don't want to be alone, but sometimes it's necessary.
You miss the old me? Well guess what, I miss her more. I lost her and I'd do anything to get her back.
This is how it is. I simply can't deal, nor will I deal with any pressure - any emotional blackmail or manipulation or any guilt trips from ANYBODY. If I'm not up to doing something, whether it's been planned or not - then it isn't going to happen. If you understood this disease, then you'd understand THAT.
Stress makes Fibromyalgia worse, so this is a warning: If you stress me out because you're too ignorant or too selfish to realise just how seriously ill I am, then feel free to get the hell out of my life.
I'm living on an hour to hour basis right now. Taking one hour at a time. I could be fine this morning, but a cripple by lunchtime. I could come good again in the afternoon, but then barely able to see/hear/do anything by that night.
You're fighting your own battles, I realise that and I do care. But I'm fighting a wheelchair. I'm fighting going to hospital for a very long time. I'm fighting the fact that no treatments, medications or therapy seems to be helping.
I'm fighting for me. I'm fighting for my little boy. I'm fighting for my husband. It takes ALL my energy to give these men the best of me, they deserve the best of me, they NEED the best of me and they get it. This leaves me little or no energy for anybody else though and that's why I pace myself.
Pacing myself means: (example) Seeing a friend on Monday. Tuesday and Wednesday will be spent recovering. I may be up to seeing another friend on Thursday or Friday, but probably not. The next week I'll see another friend on a week day, then spend the next day recovering. Weekends are spent getting as much rest as I can (husband is home weekends) so I can face the week ahead. If I'm up to it, I will see my family every 2nd or 3rd Sunday due to the fact that they're only 10 minutes down the road.
Grocery shopping requires assistance and means needing rest afterward.
Visiting anyone means needing to lie down as soon as I get home and at least 2 days recovery.
Being in the car for longer than 15 minutes requires strong pain relief and muscle relaxants.
Standing for more than 10 minutes can't, and won't happen.
Parties are no longer a possibility due to sensory overload (as are crowded or noisy places).
Any visitors who come over need to realise they can't be here too long (my besties understand this♥).
For now, going out alone just simply isn't a possibility.
For now, long conversations aren't a possibility.
I'm scared. I'm sad. I miss Emily - I'm still in the process of grieving her loss. Yes, I'm still "me" - but in my mind I'm a young 27, carefree, happy and strong, independent woman. In reality, I'm not. I'm reliant on my husband and my doctors. I'm a 27 year old living in an 80 year old's body. Trapped. This bereavement is very real and I've been told by medical professionals that it may take years before I'm "through" the grieving process.
I smile though...and by God do I laugh. My son lights up every single day, even the bad ones. My husband mends my broken heart and is the reason I'm not a complete cold shadow of my former self. These two boys keep me sane, they keep me going. They're my reason to live. They are my light.
If you've read this - as in really read it and not skimmed over it - then maybe you "get it" now. Maybe the next time I can't make some damn commitment, you'll have some compassion instead of contempt.
To all my Fibro Friends - wherever you are - Thank you for giving me the courage to stand up for myself. Thank you for inspiring me to ALLOW myself to feel the way I feel. I love you all.
Em
xoxoxo
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