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The blog that is.
Lately weve been revising things in our personal life too, throwing out, sorting, packing into boxes.
Maybe Im grasping at straws, mistaking the sense that if Im in possession of an organised pantry, wardrobe or linen cupboard, that somehow Im in control of diabetes. Having the salt besides the pepper, and the quinoa with the polenta matters - and soothes. Its strokes me and holds me after treating a 1.9 that leaves me shaken and agitated. It somehow makes up for the 24.8 that registers on the meter...and therefore nullifies my inadequacy as a pancreas. Matching shoes lined up take the sting out of the thought of future diabetic complications. You get the gist. And you also know its bullcrap and artificial.
Maybe the idea that if I plaster on some make up everything is ok with me? If I just get enough concealer on my eyes it wont show that I havent slept in 17months since diagnosis. If only I sacrifice enough for my kids, I can somehow win back the normal healthy child that I mourn.
Its a pretty heavy load to carry.
My husband is my best helper and yet, he doesnt manage Reubens pancreas like it was his own. Lets just say, Reubs is Chief Executive Officer, Im Regional Manager, and hubby is Assistant to the Regional Manager (Thankyou Dwight Schrute). He can drop off for an arvo snooze without as much as a moments thought because why wouldnt he... he knows someone else is ALWAYS awake caring for Reuben. (That would be me). Me, I cant nap knowing Reubens got active climbing insulin on board, maybe didnt eat the right type and quantitiy of carbs, heck I cant even sleep if Ive treated a low or dosed for a high, until I see it through. Every night I make sure to stay awake long enough so that theres only 4 hours between my bedtime and hubbys morning alarm.
My fuse is short. Not going to pretend on that one, the anger is definately there still. The most sensible thing I can do is stay out of situations that make me want to rip someones head off.
I cancelled one of my daughters activities in a moment of fury. Honestly, I dont need to pay someone to yell at my kids. As well as anger, Im overwhelmed. Mostly its all just too much. Like stuffing a bag full of items, and knowing full well there isnt enough room, the bag stretches and splits and its innards spill out. Thats me, and my bloody emotional entrails. I dont like it, but there it is. Im an honest person.
I dont have the fortitude to listen to someone tell me I gave my son diabetes because of gestational diabetes (which I did not have, thankyou very much).There isnt actually any link between gestational and type 1 anyway - so shut your ignorant ass up. I hate it when people tell us dont worry, my son will get better as he gets older. That he can take tablets one day, that he will grow out of it. That perhaps the doctors are wrong. Okay okay. Chia seeds, honey and cinnamon may help, but they wont CURE F*CKING DIABETES.
I hope my sister doesnt mind me sharing, but this was written to me this week after my most recent 'episode' an hour and a half sobbing to her sympathetic ear...
"...least I can try to be there for you emotionally. Dont let that f*cker D kick your ass. You are too good and as you learn to be a better pancreas for Reubs it wont have as much power over you. You are phenomenal and your strength really does inspire me!. Love you lots x."
She said another profound thing to me, that I put so much pressure on myself. Perhaps its an illusion that everyone else has got it all together and manages fabulous control and I beat myself with it. I definately dont like the feeling of not being good at stuff and Diabetes is so changeable and a beast to learn to manage and add to that the nature of the toddler.
Undoubtedly this is THE most challenging and testing thing Ive ever had to do. Will I ever feel like I'm coping?
Great news, my Mummy is here to stay awhile, and we are going to the craft show together. Apparently arm knitting and crochet and recycled fashion sewing is popular this year (thank goodness, I dont think I could enjoy another year of buttons and paper tole!)
It will get easier. Mostly because after you wake up at 7am after four hours sleep, you can send him off to school and take a two or three hour nap until his lunch time:) You will need to be alert three hours after breakfast, just in case you are needed at school, but there is an extra three hour window you can usually nap. But at his age, it must be incredibly challenging. Is there any way you could get someone to help babysit who can take blood sugar and wake you up in an emergency so you can schedule some sleep for yourself? Or if hubby comes home, you go to bed for a three hour nap? It's important. After a while, your body will take the sleep you need at times that may be dangerous... i.e., you won't wake up for those two alarms. You may have to school hubby more so you can rest up, because you are in this for the long haul. You are doing a fabulous job and son and bichon (we have one) are adorable.
ReplyDeleteLove the new blog look. And, after 3 years of D with a toddler, I feel like I am coping and D is not number 1 in my life. Although, that could be because of all the issues with The Princess that have taken over my life.
ReplyDeleteD will become second and not so much on the forefront. It just takes time. Sometimes lots of time. And that is ok.
I am right there with you, and my 2 year old was just diagnosed this October 6th! I'm just waiting to wake up one day and this all be a horrible nightmare.... But I know that day will never come. :( We tried leaving our son overnight with our mother in law and picked him up 3hours after breakfast to find she had forgotten to give him both morning shots! I will never be able to trust anyone with him now. After bringing him home his blood sugar was 21! She had let him not eat breakfast and we basically overdosed him because of her. :/ I'm here if you ever need to talk. I know I'm new to this but at least I have a sense of what is going on. Be strong and don't beat yourself up. (Look whose talking! I do the exact same thing!) *hugs*
ReplyDeleteMy neck hurts from shaking my head in agreement so much while reading this post Jules. I hear you. I get you. I feel those same feelings and fight those same battles. I have no words of wisdom that you haven't already heard....I just want to say that I think you are doing a fantastic job and I wish I lived closer so I could give ya a hug and come watch that adorable little Reubs for a while so you can nap freely and without a single worried thought in your head. HUGS to you my friend!! Hang in there!!
ReplyDeleteI also wanted to add that I just created a blog too ... http://wedohardthings.blogspot.com
ReplyDeleteThis post hit home for me. I think it's definitely an illusion that most people have it all together. I think the majority of us D mamas struggle with D, if not daily or frequently then occassionally. This D life is tough!
ReplyDeleteIt kills me when someone says, "at least it's manageable." Sure, it's manageable, but what it takes to manage is intense!
Know that you're not alone, my friend!
Enjoy your mum's company!
I like the new blog design!
That all sounds like our first year, if that makes you feel any better - it does get easier ("WHEN?" I'd think anytime someone said that - still do). My husband and I joke about having a medical job share between us. Do you ge get the weekends off? I take night watch during the week (though we both work), because I am semi-functional on broken sleep. My fellow pancreant, not so much. But he does take night watch on the weekends - amazing how good two nights in a row can feel. Hang in there - you're saying everything we all struggle with (pancreants of really young ones with T1)! Right there with you.
ReplyDeleteCouple of points:
ReplyDeleteYou have it hard! D in a toddler is a bugger to control. They have no understanding of the disease, they can't tell you when they're high or low, and they're so damn small, small amounts of insulin or carbs can make huge differences. Large swings in BGL are part and parcel of toddlers with D. You may not be a perfect pancreas but for a substitute pancreas you're pretty damn good.
The other thing is that we aren't as bad as we think we are. The A1c's often quoted by the DOC are really good. These are often the parents who are the most proactive about D, hence why they write blogs. Once at clinic when I was a bit frustrated by a higher than expected A1c someone took me aside and showed me the numbers for all the kids in the clinic that day. It was an eye-opener. We are doing a good job. Never doubt it!
Oh Jules. I love you and your raw honesty. It is why I adore you. I believe if I could go back to Joe's first year and a half or so with "D" I would change a few things...one of them being ... to go "easier" on my pancreatic self. Diabetes is a fickle fuck and it is not one to be controlled. Love to you and the fam...and love your "new look" over here.
ReplyDeleteWell said Jules, it's so good to let out your feelings. I hope it gets easier as Reubs gets older and is able to take some of the reigns. You are an AMAZING mother and pancreas, just continue to do the best you can and you cannot go wrong. I loved your "Dwight" reference by the way...Lol. :)
ReplyDeleteYou are definitely not alone in these thoughts and feelings. I too struggle with them but when I look back to where we started I can see the change and how far we have come with "D". Know that you and your family are being thought of today and everyday. And the new blog look makes me smile!
ReplyDeleteHugging you tight right now.
ReplyDeleteThis post is awesome. I love the transparent raw honesty...and I hope, one day, you can read it again to see just how far you've come.
Enjoy your mom. Love your sister.
And be kind to yourself.
Dwight Shrute..makes us laugh!! Don't you wonder if Angela's new baby is HIS really? We'll find out in the end. ; )
ReplyDeleteLove your colorful new look, and love your honesty. I promise none of us has it under control. We just take it day by day, promise. Sending you hugs (and naps!) ; )
I hear you, sister.
ReplyDeleteAnd I sense how lucky you are to have a real sister who hears you and speaks the truth to you.