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The Not So Wordless Wednesday

May 9, 2012 — Scott

Last week I posted about it kinda being a big deal that I took pictures on my trip. It was kind of a big deal because I never take pictures on trips, unless the kids were there and then it is pictures of them. It’s amazing how few pictures of me there actually are. I had tossed the camera in my bag and was taking pics before I even realized what I was doing. I hadn’t even really thought about taking pictures, let alone the implications.

Those pictures imply a lot of things. Most importantly for me was that they implied that I wanted to remember things. At least I thought that was the most important thing.

Then I visited Morpheus.

I sometimes think Morpheus takes an unnatural pleasure in showing me that what I think is a big deal is setting right on top of a really big deal. In this case the future.

She asked me why I thought it was a big deal. I said I want to remember things. Then she busted it all out reminding me that when I do, it will be in the future. Captain Obvious, right? Pretty much until you add in the fact that I believed for so long I was already supposed to be dead. That part makes thinking, and maybe accepting, that I will have a future a pretty big deal.

Long ago, I used to take a lot of photographs. Back in the days of real film and darkrooms. Developing my own film. Using a 35mm camera that had exactly zero automatic settings, doing it all manually. It took me a while to get the hang of electronic cameras, I have to be patient enough to let them do their job. I was used to point, focus, click… seeing the photo you wanted before it happened. If you saw it, you missed it. Now it’s point, hold the button until the camera decides it’s ready and hope it auto-focused on the right thing. I suppose it would be better if I used an actual DSLR… maybe someday. I still have my Canon lenses and camera bodies from 30 years ago stored in my old camera bag.

On this trip, most of the pictures are what I would call somewhat “sterile”. Not a lot of people in them, mostly just building shots of the old missions in San Antonio. ** As an aside. I was honestly much more impressed with the missions than I was with the Alamo. There’s not much left of the Alamo and they wouldn’t even let you take pictures inside, unlike the missions. I did have a little fun trying to play with the lighting to get a decent pic of some of the chapels.

But enough dodging the topic at hand. The future. Back in the day, I never thought I’d have one… that was a lot of days ago and here I am. So maybe I’ve started accepting that part of the equation, that I did survive. That acceptance allows me to see another piece of the puzzle. The future.

I’m not thinking of the future as the thing that we diabetics seem to think about: complications. It’s more of tenuous grasp on actually participating in my future instead of just coasting along. Being more a part of the lives of my kids, family, friends, Romans, countrymen… opps wrong list

Then Morpheus said that she was more impressed with the photo I had chosen to post last week, that one of myself. The fact that I had even taken it, let alone shared it was a little more profound than I had really even thought about. I took it on a whim & kinda liked it and didn’t place much importance in it except as a profile pic.

The profound part was that it was a photo of me in the world. A world that I have started to accept that I will have a future in.

PS: Morpheus also said she was curious who was going to get to see the pictures… well the answer to that is YOU! Check out the Flickr stream!

Posted in Advocacy, challenges, dblog diabetes support, depression, Mental Health, mhsm, support. Tags: advocacy, Depression, diabetes, mental health, self worth, type 1. 7 Comments »

Mostly Wordless Wednesday

May 2, 2012 — Scott

I never take pictures when I travel, but this time I am. That’s kind of a big deal…

Posted in dblog diabetes support. 3 Comments »

On Death and… Living?

April 23, 2012 — Scott

I haven’t written lately about my sessions with Morpheus because these last few weeks have been pretty rough for me. I’ve gone from having an understanding of how my Why Bother attitude had developed to understanding that I wasn’t feeling guilt because I had survived all these years and on thru admitting that I didn’t like being alone and then how admitting that had given me a sense of loss.

That was my last update and I was really feeling very vulnerable after writing it, so I took a break. Even a break from really working on therapy and trying to make progress, still going, but not doing much otherwise. The reason for this was that I was pushing back awfully hard on one of the things I needed to work on, to do. That I needed to start working on not being so isolated.

At my last session, I actually argued with Morpheus, something I really hadn’t done before. I kept pushing back harder and harder. I was sitting there for a while debating with myself whether I would be back or not. It went to the point where I pulled my “e-patient” card and said “That’s enough for tonight”.

I have been feeling really stagnated at therapy lately. This isolation thing has been my way for most of my life. I just couldn’t seem to make myself be social, be it real world social or simply on-line social. It seems that Why Bother had kicked Will Bother in junk and locked him in the basement. Why just kept saying “Dude, this is scary. I mean you’re supposed to be dead anyway. Jeebus, why bother?”

I keep just seeing more ways to fail. More ways to be ashamed. More ways to prove to myself that “No, you’re not worth it”.

I asked Morpheus why I was still coming to these sessions. Why was it so hard for me to be social and just live like everyone else.

She said that I was still coming because I had basically chosen to change. I didn’t like who I was and I still don’t seem to.

She said something down toward the end of the session that made me think. She said that I had been living with death as companion for so long that I was much more comfortable living with the isolation of death and just existing than I was having relationships and actually living. Death doesn’t scare me but living does.

After my session with Morpheus, I was very serious when I left. Not angry, not sad just serious. Serious enough that I actually went out Saturday nite and had a couple of beers with an old friend. Surprisingly, I actually enjoyed my visit even though I kept my “seriousness” on top, not letting enjoyment through, still clinging to the thought that I am not supposed to enjoy things. I faced one of my fears and went out only to have Why rear up to quash it.

This is so goddamn frustrating. I even feel like I’m failing at therapy. I have plenty of excuses (a couple of them even valid) not to go back this week. My stress level is pretty much off the charts and even thinking about going this week makes it worse. I hate this shit. Seriously.

Posted in Advocacy, challenges, dblog diabetes support, depression, isolation, mhsm. Tags: advocacy, Depression, dsma, mhsm, Social media. 14 Comments »

Angry Loss

March 27, 2012 — Scott

I’ve actually been experiencing quite a feeling of loss since I wrote Truth and Missing Pieces Not Included. It is like I have been grieving for the loss of being safe in my loneliness. Once again (have I mentioned how hard therapy is? If not, it is an effin’ lot of work), I am forced to look at something about myself that isn’t necessarily easy to discuss or change. Yet here I am discussing it.

BTW, to those who commented on Missing Pieces Not Included, I apologize for not replying as I have been doing for most of these posts. That was a hard post to write and still feels pretty raw, for lack of a better word. Why do I have the feeling I’m about to pour salt in?

Before I found the DOC, I was completely isolated in my diabetes. I didn’t even realize that I needed support until I found out it existed. That is how self-reliant I was forced to become. Well, the past few months of posts should show how well that worked out for me.

Interacting and forming relationships in the online community has been relatively easy for me, tho I still tend to be pretty reserved about myself. Those of you that have met me in real life, you have also gotten a pretty guarded view of me. I often have this “public” face of that kid that smiles whenever diabetes is mentioned that I wrote about in One For The Parents. The recent posts here have opened up a lot of things that are going on in my head, but I don’t think that these things are going part of my daily conversations with people.

I am now at a point where I need to step out of my isolation, but I’m scared to do it. I don’t know how, I don’t think I ever learned. Or maybe cared enough to learn would be a better way to put it. It’s very stressful for me, I am so anxious writing this that my chest physically hurts and there is a surge of adrenaline coursing through my body.

Besides all this, other circumstances in my life make things even more difficult at times. I can’t remember the last time I had a good nights sleep. Even though I am bemoaning that I don’t like being alone, there is no way that I can just have a nice quiet relaxing day at home alone. It’s tiring, exhausting at times and I’m sure that it is playing into my current emotional state of sadness/anger/depression (yes, sadness and depression are different things and feel differently, at least to me). At the same time, I’m grateful that I am able to do this other thing. Conflicted, you think?

I suppose I knew there would be points like this. Ones where I feel worse than I did when I started. I’ve really great friends online try to engage me, but I just haven’t felt very engaging lately. I’m not even sure why I am writing this, the more I write the angrier I get. Guess I’ve found another thing to be angry at myself for. Yet, I know it’s really not my fault, it’s just the result of circumstances. Circumstances that are beyond my control.

But I think I should be able to control my response to those circumstances. I have been, but it has been in a very isolated fashion. I’m trying to learn new, healthier coping strategies. The old ones aren’t going down without a fight though. I’m so tired now I wonder if I can see this thing through. I swear if anyone posts “You can do it!”, I will kick a puppy. This is exhausting and I am just about worn smooth.

Posted in Advocacy, challenges, dblog diabetes support, depression, HCSM, isolation. Tags: advocacy, Depression, diabetes, mental health, Social media, type 1. 16 Comments »

Changes

March 9, 2012 — Scott

Wednesday nights at 9pm Eastern is the weekly Diabetes Social Media Advocacy twitter chat (#dsma). This week’s (3/7/2012) topic was about laughter and diabetes, and honestly it was a pretty damn funny chat!

One tweet caught my eye though during the closing remarks. I remembered reading it on my drive into work the next morning and it went something along the lines of

we shouldn’t allow diabetes to change us

While I can certainly understand the sentiment, I’m not sure that is a realistic, let alone fair, request for the vast majority of us.

** I’m speaking here as a Type 1 diabetic who has been changed by having diabetes, so my view may be a bit jaded, tho still humbly correct.

With the constant demands placed upon us by this disease, we must change in order to adapt to the incredible stresses placed upon us. Those around us will be changed as well and I think this change should be taken as part of the package. In fact, this would apply to any chronic condition.

If we don’t acknowledge the changes that are forced upon us, how will be we able to truly accept what diabetes is in relation to our life? I wonder if those of us struggling with the turmoil that a life long chronic condition brings would view that statement as being in the same vein as “complications, eh? guess you didn’t take good enough care, now did you?”

I’m sure it wasn’t meant that way but, as someone who has been at this for decades (and granted I have issues, lol), I see that statement as very naive in a fashion. “Just have a great attitude and it will be ok!”

Unfortunately, life doesn’t work that way, it’s not that clean cut. We will change because of the constant physical and mental stress that is placed upon us. We’re human. The financial and emotional stresses that accompany diabetes will take their toll. We’re human. As we go through different phases of our lives, there will be additional changes. We’re human.

As I’ve been exploring things with Morpheus, I’ve become convinced that not only are changes inevitable, they are normal and to be expected. As advocates our words can, and do, reach people that we don’t even know. I often wonder if the length of time a person has had their condition affects not only the perception of encouraging statements but also changes the statements we might make to more accurately reflect what we perceive as important and/or encouraging. So instead of the above phrasing, I think I might say

Diabetes will cause you to change. The trick is to accept those changes. Acknowledge them so you can roll them into the new you instead of those changes becoming the new you

Posted in Advocacy, challenges, dblog diabetes support, family, HCSM, support. Tags: advocacy, Depression, diabetes, mental health, Social media. 12 Comments »

The Only “Thing” That Can Empower You is You

March 6, 2012 — Scott

It seems that every day we read a new announcement about some new health app or service that will empower you.

What a load of crap.

The only “thing” that can empower you is you.

You have to do all the work, accept all the responsibility, manage all the other participants (doctors, insurance companies, caregivers, etc) in your health care arena. I use the word arena because sometimes I spend more time managing all those others than I do managing my own condition. To tell the rather absurd truth, I’d really, really like to be in a cage fight with them all sometimes. You could recognize me because I’d be the guy with the chainsaw.

Do you know what a pencil, a hammer, a telephone, a car key and all these apps, social networking sites, devices, and services have in common?

They are all tools.

Simply tools, which by definition help us perform some task with, hopefully, less effort. But of course you need to use the right tool for the right task. I mean trying to use a hammer to drive a screw into a piece of wood is just going to get you hurt.

If people don’t benefit in some tangible way from using these apps or services, then they won’t be used. It needs to be rewarding. One of the most difficult things about managing a chronic condition such as diabetes and many others, is that if you do it right nothing will happen.

Nothing will happen.

That’s a fantastic motivation to keep doing things isn’t it? It might be, however it provides you with exactly zero feedback (positive or negative) which makes staying motivated extremely difficult. In the era before social media, we relied on our doctors to help with motivation. Hopefully, they encouraged you and didn’t just try to scare you into compliance.

This is where power of social media and social apps come to light. You can get immediate feedback. Be it from someone online going “Attaboy” to getting a few points or perhaps a new badge (WOOT!), these all provide an immediate reward and that makes behaviors easier to change and then to maintain.

Since these new pieces of software and hardware are regarded as computer technology instead of “people technology”, they are often sold using the same sales process that I have heard for my 25 years in IT. “This will handle the problem and make it all better”.

Well, that is a half-truth at best. People will handle the problem. The real question is “Will this technology make my life easier on a day to day basis and how will it work for me?” Often people buying get sucked into the “it’s a fantastic silver bullet” spiel and once it is deployed… well, lets just say things unexpected can happen.

Remember, people handle problems. People solve problems.

Apps, devices, systems make handling problems easier (hopefully!)

You are a person. Given the right tools, you can empower yourself.

But you have to do it.

** I’m going to put a slight caveat in here. Not everyone is going to need or want to be an empowered patient. It takes a lot of work, honestly, so it is up to every individual to decide what is proper for them in their own situation. It is not proper for anyone to say you MUST do something in this regard, it is an extremely personal decision.

Posted in Advocacy, dblog diabetes support, HCSM, support. Tags: advocacy, Depression, diabetes, Social media, type 1. 8 Comments »

The One Where I May Say Too Much

February 27, 2012 — Scott

I’ve really been struggling with how to write this post about my last meetup with Morpheus. I’m finding it hard to figure out how to say things without sounding arrogant (who me?) or condescending to you all.

Giving myself a compliment started the whole thing. It’s been a long time since I’ve really done that, usually I’m indulging in self-debasing humor. Making fun of myself.

Morpheus has been reading my blog and comments from everyone and she thought that my replies had always been very compassionate even protective. Why could I be that way with so many others, but not myself?

Well, the answer came to mind almost immediately, but it took me a few seconds to actually decide to say it. (** I felt sad when I said it, not sure why) Once I did, I literally went “did I just compliment myself?”. It was how I phrased it that makes me hesitant to share it here. So let me try to put it in perspective…

A few years ago, my son was suspended from school for a day for getting in a fight. It was just a playground scrap and I was actually glad to see him standing up for himself. After the obligatory “You shouldn’t get into fights” talk, he asked me if it was ever ok to fight. I told him it was sometimes, especially when protecting those not as strong as you.

This is where it sounds bad, but I answered that the compassion came because I was supposed to protect those who weren’t as strong as I. That may sound condescending, I know, but I really didn’t mean it like that.

I believe that you are all stronger than you realize.

Sometimes we all go through things where we are just not as strong as those around us.

I have been weak so many times and this thing we call the DOC has shouldered part of my load. Helped hold me steady in the moments that were the hardest to bear. All of us will have moments when we need the strength of someone else to carry us through.

If you reach out to me, to the whole DOC in a comment on my blog, I will always do my best to support you.

There will be a day when your strength will help someone else. And it will strengthen that person who will then be stronger for one of theirs.

That is community.

That is the DOC.

Posted in dblog diabetes support. 13 Comments »

Why They Scare Me

February 17, 2012 — Scott

My last post was a very brief one about “Regrets” being an upcoming topic with Morpheus and how that scared me.

I thought I’d try to explain why. **By the way, writing this is making me very anxious which probably means I need to talk about it

I’ve mentioned before that I never really allowed my self to form distinct memories of significant events in my life, I mean seriously, why bother? However, I’m beginning to think it is more likely that those memories are there; lurking, hidden, just waiting to cut into me.

I think I will be ashamed of the way I treated friends and loved ones, of how I wouldn’t let myself enjoy the moment. Angry with myself for that.

And I worry that I will be able to control these feelings and emotions as these memories surface. I have no idea how or when they will and my reaction is completely unpredictable to me.

That is very scary to me.

Posted in dblog diabetes support, depression. Tags: advocacy, Depression, diabetes, mental health. 3 Comments »

Regrets

February 15, 2012 — Scott

Regrets

This topic is coming soon in my discussions with Morpheus.

It scares me… Alot

Posted in dblog diabetes support. 4 Comments »

Guilt or Shame?

February 9, 2012 — Scott

One of the topics that Morpheus and I touch on quite a bit is guilt and its stepbrother, shame. I tend to think the difference is a matter of severity, i.e. shame is “worse” than guilt. I am guilty about all the things I am ashamed of but I’m not ashamed of all the things I’m guilty of.

When we talked a bit more about it, she was trying to show me that they are two separate things. I didn’t really understand what she meant until I read The Difference Between Guilt and Shame by Joseph Burgo, PhD. Shame is much more about “self”, I am ashamed of something that I did that reflects, at least to me, a personal shortcoming. Guilt is much more about how something I did affects other people, did I do something to make others feel bad?

I’ve written before about how I’ve felt guilty that I survived when so many others haven’t. Others that seemed to be working so much harder at survival that I was.

After reading that article, I don’t think that I’m guilty at all.

I think I am ashamed.

Since I was supposed to die before I got through college, it was a failure on my part that I didn’t. I am ashamed at how my survival, with such little effort, has hurt others. Made them angry and ask “why him?”. Hurting others is something I don’t want to do and it is definitely a personal shortcoming for me if it happens because I “failed” to do something.

Fucking red pill…