Hello everyone out there! I just joined this site, actually, I just found out about the DOC from my new friend and coworker 2 days ago. I think it was fate that he and I met. He has opened my world to the DOC, and though I am tentative and shy, I see that if I do not participate, I am the one who will lose out, no one else. So here I go...
I am 37, was diagnosed with Type 1 diabetes back in 1994... and keep thinking it was just yesterday. Someone reminded me the other day that is has almost been 20 years... that thought scares me, based on what I have to write here today.
The day I was placed on insulin, in fact almost every aspect of my appointment with that Endo back on the Tuesday before Thanksgiving of 1994, I can remember. Perhaps because it was such a bad memory, perhaps because of the words that flash into and out of my mind like scenes from a movie, or perhaps because almost 20 years later, I am still in denial, still mad, and not ready at all to laugh at this, deal with this, or figure out how to handle it. Mind you I need to say, there were times that I was in control, and I have spoken to others in clinic who ask me, what was different then than now. Different, nothing, except that it was new and seemed easier... it was my honeymoon. I had not had so many negative interactions, negative experiences with people, and never felt so mad about this disease as I feel today.
For some background: I had a 2 year honeymoon period, that was interesting. I have been on 3 separate pumps to date. I have used several different meters, injection sets, sites on my body, tape, test strips, you name it. Here is something that makes me extra special... most anything that could go wrong with these things, it happens to me.. I am a magnet for "issues" - tape issues, skin prep issues, reaction to plastic under my skin from the injection set, injection sets popping out of my skin, large red squares or circles from tape (those are quite attractive), liquid adhesives, regular adhesives, band aids, non-latex tape, latex tape, alcohol, ... think of it, I have tried it and either have a reaction directly on my skin or underneath (pain). In the last few months I have encountered a very unique category... those with Lip-atrophy... I am imploding, literally (ever wanted a tummy tuck, diabetes created one for me on the upper side of my belly button) - it is quite attractive. Oh, and another is starting.. Perhaps I should not look at the negative here... maybe if I put inserts on my ass, it would shrink it? I really could be on to something here. The new wave of plastic surgery for the future.... NOT
So, here I am a mess, physically, and quite honestly mentally (because knowing I am failing, is just as bad if not worse than failing and seeing it on the meter screen - that high number - or the hole in and I my stomach everyday. I simply cannot get myself to test regularly, to even remember sometimes to take a bolus, (despite the reminders I have on the pump, despite the connection my pump has as a meter remote - how much easier can that be, despite the fact that I will measure food and put it in a plastic bag and write the CHO's directly on the bag and calculate the number for that portion size... i just eat what is in the bag... it's like i never noticed the writing or if i did it must have been just an advertisement! Once I wore a watch with 7 alarms on it... I am great at dismissing alarms. I now have an iphone with that atomic bomb noise set for my reminders... dismiss, plus my boss jokingly threatened my job if I did not change that sound yesterday!!!
I have asked for help from my diabetes team, i truly don't get any. "oh, send me your numbers, email or fax them" I have even tried follow up calls, emails, and dropping by... NOTHING. They get lost, or "Oh, I was so busy, I must have missed it." Why do I make the effort to track, if you aren't going to help me and read them? You tell me to track that this info will help you... USE IT THEN Jerk-face.
So, I ask of anyone out there... I need a jump-start, I am lost... cannot get the engines running and I need help. I don't know where to start, how to start, when to start (oh, because if I don't start at the beginning of the week, somehow I am a failure in my mind). I have read the books, I know I am in burnout... I don't care, labels never helped me in the past, I need action steps. I just want to get help.
Help me, Help me, please.
First, welcome to the Diabetes Online Community! I've been in that situation myself, where I've felt so lost and like anything I do doesn't do anything. Been type 1 for most of my life since I was a kid, and now it's been almost three decades. The best thing in my world has been connecting with so many incredibly inspiring people in the online community, through blogs, Twitter, Facebook, communities such as TuD. Just talking and having those friendships has helped keep me accountable in times that I didn't feel very good about myself. We are here and have got your back. Drop a line no matter what you need, and I'm sure someone will be there in an instant with a helping hand (even if it is only virtual)! Thanks for sharing your story here.
Thank you for your words of support, I will be sure to stay connected. I think you are right, I have found a home. :)
This may not be helpful at ALL, but here we go... by your words, you are not only in denial but angry at your diabetes and in your mind you are a "failure". You need help but need to help yourself first, don't have the energy or the motivation for that kick start, don't have the right support or dedicated team. If you haven't seek therapy maybe you should consider that first, get to know yourself and what is preventing you from taking care of your body, from prioritizing your health, what is making you "hate" yourself (maybe a strong word), you need to let it out, grieve, learn how to replace negative thoughts and patterns with positive ones.
I know I'm jabbering a lot, but I'm doing so cause I feel you, I was there, and not too long ago! Only that my sugars were never, ever under control, let's say I never had a honeymoon. I tried different therapist and went from depressed, to angry, to despair, to feeling cold about the whole dying young (who wants to be old and wrinkly anyway?), until I finally found the one to give me hope, a Therapist who was also a T1DM. I believe with all my heart that, if not one that suffers from the disease, somebody that is trained thoroughly about it should help us cope, because they will never treat you like yeah, yeah, you got diabetes, get over it, start taking care of yourself and stop whining.
We are not failures, it is not our fault that we have diabetes, it is not easy keeping the balance, it is very easy to get jaded. Step1: love yourself Step2: everything else
You are right, I am in denial, angry, frustrated, annoyed... name it all, I am in that state. I want out, and I have been to therapists who specialize in treating those with diabetes and therapists who are more general. I know I am on the right road, I just have not found the exact stop. Thank you for your words of support.
Awesome! Yes you are on the right road :)
Maybe blogging here would be helpful? Sharing your goals and steps with the Tu ppl? Having a record of your accomplishments, however small, can make you look at the process a lil more positively. And maybe that way ppl can chime in and let you know if you are trying to take on too much for starters, have ideas and experiences they can share with you. Maybe I'll take some of my own advice and start blogging too lol
As other ppl below have said, we have all made our share of errors, until recently I would constantly forget to inject or to even bring my insulin along, diabetes was not a priority for me. You are not a bad diabetic, you have been making efforts, you are after all injecting, taking the time to set reminders, writing down the carbs in advance!!
Welcome!! Glad you found this site.
The good and the bad about living with T1 is that it is largely a disease of self-management. Some days, I find this a horrible thing, because it requires all the actions in my part to take care of it (and even then sometimes those actions don't work and I'm just stuck).
But I try to change my frame of mind and see this as a good thing. Because it's completely under my control, I don't have to rely on others to tell me what to do. I KNOW what to do to manage it and the tools I need to manage it are relatively easy to get. This is not to say that it's easy, because some days it is incredibly difficult mentally to do everything right. It's like this disease consumes me at times, sucks every freaking bit of energy I have. But then I come here and I see all sorts of other folks who are also T1 and dealing with the same load of poop that I am and it makes me feel better. I don't know...I read your post and I just feel...better. Because I've been there. I've had issues with infusion sets, I've had highs, I've forgotten to bolus.
We have all been there and at least I don't feel so incredibly isolated anymore.
I have always thought that it would be cool to live in a "diabetes island," where insulin was plentiful and everyone had pumps and every morsel of food was correctly labeled with the exact amounts of carbs. This is not exactly what the DOC is, but it's pretty darn close :-)
Thank you for saying that you have had issues wit infusion sets, highs and forgotten to bolus... no one has ever said that too. I am not the only one. Thank goodness. Thank you for reminding me that there are others out there, just like me. Maybe I am not so "bad" and I can start to love myself and not punish myself so harshly, as I was reminded to do above. Thank you for your words and support.
There was also the time when I woke at 2 AM with a blinding headache and a high of 400+. So I had to correct, chug 3-4 full glasses of water and then try to fall back asleep.
I'd disconnected my insulin pump to make out with my wife and then forgot to reconnect. A night to remember for several things. ;-)
If a T1 doesn't admit to doing these things, he/she is lying. We are human. We forget sometimes, and sometimes our body just doesn't cooperate. It is not our fault. The fault is with the condition that caused our pancrei to stop working.
Look at people around you and see how they live. They don't count the carbs in their food and then take a shot or bolus beforehand, right? They just eat, without thinking about it.
We have to remember how lucky we are - we have insulin, pumps, test strips, things that weren't available just 20 or 30 years ago. Heck, if we had all been born 90 years ago, we'd be dead! But these tools are not cures - they are treatments. We use them as best they can, but no technology is as perfect as what our bodies are naturally supposed to do.
Love yourself and remember that while you have some really excellent tools, it's never going to be perfect. You do as good as you can and spend the rest of your energy on things that truly matter.
Felidia: I don't want to offer suggestions that you may have already tried. Here's what I think:
It really sounds like you're overwhelmed, so take it one small step at a time. First step: give yourself a round of applause for getting this far.
Um, BTW my current BG is 240+. I couldn't resist a slice of apple pie in the kitchen at work. Guess I'll run up and down in the stair wells for a few minuts and see if I can fix it.
It does suck. But, thanks for reminding me that I am not a failure. I am still trying to adjust to that statement you made that I am a success in making it 20 years... yes, I am alive, but am I well (complications wise)? We think alot alike... :)
Small steps are an excellent idea. You have empowered me to start here... to begin reaching out. For that I am grateful and will never forget for the rest of my life.
I am sure the apple pie was worth it... have fun running!!!