I started a post yesterday to catch up and let everyone know I got my laptop back and tell you all about our holiday and what was new but never finished it. Today, I’m just so frustrated and full of emotions that I have to get it out or I’m going to just either explode or fall apart. This is a fact:
I HATE WHAT CHRONIC FATIGUE SYNDROME, FIBROMYALGIA, DEPRESSION, PANIC DISORDER AND EMETOPHOBIA ARE DOING TO MY LIFE! (and my children’s).
I just want to scream at the top of my freaking lungs and the ironic thing is that I don’t have the energy 
I try to keep these bad times to myself and just focus on the positive, however, at this moment it’s hard to even write this without every other word being a curse word!
I feel like I’m on this rope that is so slippery in a deep, endless dark well and no matter how much I try, how hard I work at it, how much I pray, how many medications I take, I can’t get stop slipping towards the end into the black hole.
I feel like a failure as a mom, a daughter, a woman, a sister and an auntie. My life has never been real easy but whose is right? I’ve always managed to work hard and reach most of my goals, even surpassing them at times. (even if only temporarily). But now I do not have any power over ANYTHING. There is nothing I can do! That is perhaps one of the hardest things I’ve ever had to admit. I like to be in control, always have. That’s why I chose to be a single mom for 39 of my 39+1 years (little inside joke there). With an invisible and misunderstood (mostly to ME) health condition such as the ones I’m living with, there are days when I wonder if I’m just lazy or crazy! I mean how can ANYONE go from the person I once was to what I am now which is an almost empty (much bigger) shell of what I have always been.
It’s so hard to explain what it is like to live like this. It feels like my life force is empty, as if there is no will to live which is not true because I have too many loved ones in my life to just give up but I really feel like my energy has been drained and I’m just weak and flimsy, it’s impossible to put into words. I can handle the pain most of the time, that’s not the biggest problem (for me), I’ve learned I’m actually pretty good with pain, it’s the fatigue I can’t deal with.
Waking up with everything stiff and hurting EVERYWHERE really sucks but if I could just have a little, tiny bit if “get up and go”, just enough to help me get out of bed and take a shower and not go back to bed, I’d be happier. I have been in bed for 8 days straight now, I felt so bad today I couldn’t even make it to my doctor’s appointment! Moving feels like I’m trying to walk in sand. Taking a shower wipes me out so bad that I feel as if I may faint before I can get dried off and get back into bed. What kind of life is this?
Watching what it has done to my family life is the worst. I hate messy, dirty houses. I have a thing about germs, I absolutely DETEST it. My house is always messy, why? Because my kids are lazy and spoiled and because I’m too damn tired to move. I’ve been trying to get used to it or just “live with it” and learn not to feel so guilty but I MISS being the mother I once was! I miss being ME! Where did I go? I’m being suffocated by this stupid INVISIBLE illness (that I am not even sure is real sometimes) and it’s been going on so long now that I’m losing hope. I mean, HOW LONG can this last????
My kids won’t remember all the years that I worked my butt off being the best mom I could be. They won’t remember all the special little things I did to show them how much I loved them or the special times we had, moments that are precious to a single parent family…they will remember these times, me being in bed 24 hours a day, asking them to get me this or that, having to cook for themselves (microwave really), always saying, “Maybe tomorrow will be better and we can do _____” but tomorrow is never better and we never get to do it.
There are so many ways that I’ve failed my children because of these conditions (I don’t know what else to call them), all of my dreams were either crushed or just kind of died along the way to where we are now, even the dreams I had for my kids. If they fail at something, it’s really my failure as a mother not theirs. And that is SO not fair for them and SO not what I wanted for my children.
This is NOT the life I signed up for and I’m sorry if I sound like a whiny, ungrateful brat but dangit, I’m really ANGRY about this!
Doesn’t really matter though does it? I mean, there is nothing I can do about it…
“Maybe tomorrow will be a better day and I can post something more positive but then again, I doubt it.”
Kat,
First welcome back! you have been missed truly! second, it is okay to vent, that is why women live longer, we know when to let it out. I dont have all the personal health issues that you do to deal with, but i can somewhat relate. I am here and listening and praying for you. you will get through it and until then, it is okay to have very off days. just remember… there is always someone who will be here to help support you in the spiritual sense. GOD bless and know I am praying for you.
A friend of mine has Fibermyalgia and she just started Tai-chi, said it is helping so far, just a thought, keep your head up!
Oh Kat it makes my heart hurt to hear you talk this way, but having been there before I want to say that you are NOT alone!!! I know how completely isolated you must feel and how frustrating it is when you are minus a gazillion percent less of the person you used to be… BUT… if your kids are anything like mine they WILL remember how hard you tried AND THEY DO LOVE YOU NO MATTER WHAT!!! Sorry for yelling and I soooooo wish I could fly right over there and help you or at least give you an oh, so gentle hug (I KNOW it hurts!) You know what girl? You are doing the absolutely BEST thing possible right now by SPEWING out all your feelings and frustrations. I don't know about you, but just screaming outloud, REALLY loud and long, takes away just a tinsy winsy bit of that frustration and stress. There is no magic pill for this series of diseases, unless of course you count unconditional love which is the best cure for anything. Please know that even as a person who has never met you in person I still care and want to see you come through this. {{{{{{{HUGS}}}}}}}}}
Sharon
Dearest Kat,
I only have a small inkling of the suffering you are going through (I have depression, fibromyalgia, and am rapidly getting to the point where I don't want to leave my home).
Are you in a support group for any of these issues? I know webmd.com has a support group for all kinds of things and at one time I was involved with their online group for fibromyalgia.
Also, do you have a doctor who has complete understanding of all these issues? Or maybe you need a doctor that understands alternative medicine since regular meds don't seem to be doing the job.
I'll be praying for you!
Gentle hugs,
Linda Grinnell
My dear dear freind…. thank you for being you, thank you for having the courage to share so honestly…why do I thank you…because it helps me and I know it helps other and because I know you personally and how special you are in your heart and mind and spirit and how hard you have and will soon again, give your best to your kids. You are a great Mom. Everyone is praying for you and you deserve it@
Fran
I just want to thank you all for your supportive comments. It means the world to me that I'm not alone and that others understand (that means I'm not just lazy or crazy! LOL) Today is a much better day, probably because of your prayers so thank you and KEEP 'EM COMING!
Love to you all!
Kat
Kat,
you go girl. Let it out. I don't suffer from the illness you do but at times I feel the same way. So know that out in Ohio there is a woman praying for you and hoping you all the best. Your kids will remember you and all you've done for them so don't fret. just let it out when you need and know we will all be there for you.
Hi Kat, I have CFSID and Fibro but the fatigue is what kills me too. I also worry about my kids and right now my husband is in Afghanistan so I am basically a single mom right now. I have had the fatigue monster back for the last couple of weeks and it is really getting to me. I want to scrapbook so bad and play with my cricut but I can't because of the fatigue…so I am stuck in my chair watching no-good tv (I'm not into soaps so that doesn't help). It is so boring and depressing. What do you when you are so tired you can barely move your tongue to speak? Just curious how you deal with it…maybe it will give some good ideas to try!
Hi Kat, I have CFSID and Fibro but the fatigue is what kills me too. I also worry about my kids and right now my husband is in Afghanistan so I am basically a single mom right now. I have had the fatigue monster back for the last couple of weeks and it is really getting to me. I want to scrapbook so bad and play with my cricut but I can't because of the fatigue…so I am stuck in my chair watching no-good tv (I'm not into soaps so that doesn't help). It is so boring and depressing. What do you when you are so tired you can barely move your tongue to speak? Just curious how you deal with it…maybe it will give some good ideas to try!
Thank you so much Photoscraper! I'll take all the prayers I can get! And Sheri, I emailed you directly okay? Hang in there! I'll share anything I can that may help you, although if I had anything good, I probably wouldn't be whining on my blog LOL Luv to you all!