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Location: Minneapolis, Minnesota, United States

Diagnosed with Type 1 diabetes in April of 1980. I recognize the incredible mental struggle of living with diabetes. I hope to share my struggles, my successes, and everything in between.

Friday, June 02, 2006

But they are two different things...

My mind is such a tangled place sometimes.

I usually think of myself as a pretty normal guy (don't we all?). It's the rest of you that are crazy...

Sorry, I couldn't resist.

I'm trying to really pay some attention to what goes on upstairs. I feel that the past year or so has been just the start of a very interesting, very rewarding, very challenging, very long (life long?) and sometimes very difficult journey of understanding myself.

As many of you know, I've acknowledged that I need to change my behaviour and habits around my eating. In many ways I feel that this is one of the major reasons my A1C's are high. If I can reign in my eating habits and choices, my blood sugars will be much better (notice I didn't say great or perfect), and I'll see some rewarding A1C results. Hopefully also meaning I won't see much in terms of major complications or other bad eating caused troubles.

This (eating better) is much harder than you may think. At least for me.

I'm finding that my poor eating habits and choices may be the manifestation of some other deep seeded issues, such as denial and grief.

I was diagnosed at 5 years old. Can't remember much about it back then, but heck, I can't remember two days ago either. But my point is that I've always just done most of what I had to do - and that being just enough to avoid disaster or any other immediate pain. I've just made it through each day, then moving on to the next. Never really taking time to look at or deal with the mental aspect of dealing with a chronic condition.

So here we start to look at things I want to do, and things I need to do.

Two very different things when it comes to changing my eating habits. I know I need to do it. But I don't want to do it.

This realization hit me a couple weeks ago during an appointment with my therapist. We were talking about things I can do around my eating, specifically planning and packing food to bring from home. I am feeling a ton of resistance to even planning!! My therapist started to do something that many therapists do, and that was to dissect that a bit. What is it about planning and packing food that I don't like? The time? The energy? What?

I talked about how I can let some really stupid thing throw me off course. For example, if I discovered that we were out of Ziploc baggies, I would just say screw it and quit packing lunch. All the while standing next to a stack of Tupperware taller than the average house dog.

Then a thought hit me - I pack and plan a bunch of crap to play basketball a couple times a week during lunch. We're talking shorts, t-shirt, 2 pairs of socks, fresh underwear, small towel to wipe sweat during, large towel for showering after, shoes, ankle braces, preparing 32oz of Gatorade (made from the big tub of powder), making sure my pump strap is in there, checking stock of test strips and glucose tablets, and packing it all into my gym bag which I place in an obvious spot to grab on the way out the door the next morning.

Compare that to planning and packing a simple lunch.

Yes. I know.

So I mentioned that to my therapist, and talked about how much I enjoy basketball, and because I enjoy it so much that I don't even give the planning and preparation a second thought. I just do it.

It came down to the fact that I did not want to change how I eat. I recognize that I need to, but I don't want to.

She said "that is part of denial".

It seems so foreign to me, being diabetic for 26+ years, to realize that I may have never really dealt with that side of things. Acceptance & full responsibility for the choices I make on a daily basis.

I posted a while back about talking the talk. I got a lot of very valuable and helpful feedback (as usual!). One in particular really hit me though - it was from "Zazzy" over at Zazen in the Moonlight. In particular the fact that doing things we don't want to do that are good for us is really hard. It's not a trivial thing. It really is hard. And to "seek the solution instead of beating yourself up for having the problem". Very powerful statement. (thank you Zaz!!).

So how do you deal with denial? My therapist suggests certain sections and aspects of the AA "Big Book" - adapting the language and wording to my situation. I've also found another book that I'm getting some value from. I'm also very interested in any feedback or information that has helped any of you, or others you know of. Dealing with this, like diabetes, is a very individual thing - and what works well for some may not apply to others. But I think the more information and resources available the better off I'll be.

As difficult as this journey may be, I have found it, so far, to be intensely rewarding. Scraping off layers of mental avoidance strategies on some life long problem areas. Working my way through the mental diversions and trying to uncover the root causes where possible.

What I want to do vs. what I need to do.

8 Comments:

Blogger J said...

Wow Scott! I have said this before and I will say this again I swear we share the same brain.. when I started reading this post and got to where you want or need and talking to your therapist about it I almost lost my cookies .. this is EXACTLY what myself and my therapist have been talking about this week and last week. She will say to me I hear you say you NEED to do all of this but how about just owning the fact that you just don't Want to do this ,., you dont wan too eat right.. and I come back with but I Have too I don't want to die.. but she wants me to own and undertand the difference and accept that I don't want too and then once I own it she thinks I will be able to move on to accepting and turning it into a NEEd .. but she feels I will not be able to do this unless I own it .. it is her theory she usues the gaustalt(sp) method of therapy. This causes much confusion in my brain.. We also discussed about how most of the way I talk about having to eat right, exercise, she says she does not hear me talking just what out side people IE Mom, Doctors have told me but what do I, Julie realy want? and believe? this has cause al ot of havoc in my brain too to figure out what I thought I always believed actually a lot is my mother voice.. anyway , I so relate to this topic and as of late it has been a big stuggle with acceptance thank you for this I don't feel so alone on my line of thinking.

12:48 PM  
Blogger George said...

Scott,

I wish I had some words of wisdom to share but I do not.

I personally have the same problem. I seem to come up with an excuse every time I do not do what I know I need to.

I am going to pay attention to your comments so I can hopefully get some ideas too.

I guess the cool thing is that both J and I can tell you that you are not alone!

3:25 PM  
Blogger Vivian said...

I absolutely love your posts. You are so real and honest. Thank you for allowing us into your world. Oh by the way, that last post about your fingers...Dude, those are serious bear fingers and they need to hibernate for a while.

When you say that maybe you never dealt with the feelings about having a chronic illness, it makes me stop and think. My husband has never really dealt with his either and I wonder if there is something I should be doing for Daniel to help him now deal with it so that he does not have these issues later. I really admire your strength to push through and keep searching for the answers.

8:26 PM  
Anonymous Chrissie in Belgium said...

I really like you blog! Yeah want and need are not the same - and of course not until YOU WANT something will you go for it. I capitalized the two words YOU and WANT because both words must be stressed. Often important people around you, people whose opinions you really do value, give you advice that you know is correct. You quickly think yeah I want that too. But you have to make it YOUR OWN idea, desire or wish. You have to really, really want it for your self. It has to be YOUR GOAL. I do not know if I am just repeating a bunch of similar words or if I am getting my point through????? When you want something you will strive for it. Even if it is hard. Nobody can convince another to quit smoking or loose weight. It is only when you want to do it yourself do you suceed. All my life I have been chubby - until a little less than 10 years ago. Then I moved to Belgium with my husband b/c of job opportunities. This was done after my encouraging my husband that it was a good idea, although I was really happy after quitting my job and was currently trying to renovate our newly purchased house in the country in Sweden. I was following my dream and felt my husband need now to follow his dreams..... But I wasn't really HAPPY about moving. I was also having a hard time letting my kids leave home. This is neither so simple for kids or parents. I will not go into that here....., but moving out of the country, so far away? Sorry this is so long but you have to understand the situation to get my point here. Anyway living in Belgium, in an appartment (no birds, lakes, walks to speak of), chubby me decided I had to learn French. I tried and tried! I set high goals (which isn't so good). And of course my diabetes was not that well controlled - I didn't eat candy or stuff, but I never got it RIGHT! So in my mind I failed in 1. fatness 2. French and 3. diabetes. I hated myself and missed my kids although adults in their 20s...... I decided I had to suceed with something to like myself again. Diabetes was hopeless, French I just wasn't that talented at and I was going to school every day, studying like hell, what more could I do? So I decided to loose weight. It had to suceed with something really hard, otherwise I would just be kidding myself. I wouldn't be proud of my self. But this was now MY goal. I really wanted to like myself again. After about 2 years I lost about 10kgs and I got back my self confidence. I liked myself because I had suceeded with a hard battle. I was proud of myself. (Later when I got the pump, kgs just FELL off of me without my even trying so I think that poorly balanced diabetes leads to overweight.) My point here is YOU have to decide you want to do something..... You have to figure out what is important for you. The truth is that each person has to make their own choices. We are all different. The first step is realizing there is an isuue to be thought through - I decided I needed to set a goal. Secondly when I had my goeal I then fought to suceed. I am not going to pretend that it was easy to loose those 10 some kgs. I ate very little, basicly veg and meat. I got no medical help. The diets my doctors had always suggested, always failed. I just ate less and moved, and what I ate was healthy stuff. I tell you it was HARD.

So my long winded point is do wome soul searching and figure out what you really want. I wish I could help more. With the pump I have noticed that I am hungry when my bg is low, high and falling rapidly. I KNOW NOW that I must balance my diabetes very carefully so I feel good. I NOW LOVE FEELIN GOOD, MENTALLY AND PHYSICALLY! That is why I keep tight control now and the pump makes it possible. I couldn't suceed befor. The pump has made it possible. I LOVE the pump. But it isn't easy....don't get me wrong! If you only knew how fragile my diabetes is! It is terrible and a big battle every day, hour and minute. But I do it because it makes me feel good. I want to do it....

11:55 PM  
Blogger Violet said...

Scott, this is such an honest post, thank you. It's no easy thing to look so closely at oneself.

Want/need splits for me are all around nutrition and exercise. When you talk about having fun playing basketball, I try to imagine what that must be like. I have never taken naturally to any kind of exercise or physical activity--at least, not since I was a little kid and it was actually fun to ride my bike :) It's such a struggle for me to get my butt out there. I can't say I've exercised in a consistent or meaningful way for a year, and before that it was only for a few months. Chrissie is right, you have to want it, and I don't.

So my next question: how do you start wanting something that's good for you but feels undesirable?

7:38 AM  
Anonymous soso said...

Hi Scott,
I have been reading and enjoying your blog, you are an excellent writer!

Reading you has helped me put some of my own feelings about D in perspective...On the surface people think I am doing so well and yes, I do have near perfect control. But that's just the bit of the iceberg that is showing above the water level... it is the grinding day in day out vigilence that is so wearing, or should that be hour in hour out.... I make it look a bit too easy, always getting comments that I am 'not that bad' or 'obsessed'..
My docs don't even agree with which type I am! my own doc thinks slow onset T1 and the fact that I am trying so hard is keeping me in the honeymoon period...I am not a typical T2 as I am thin and was running 5 times a week at dx.
Anyway, I looked at your records pages (which were an impressive undertaking in their own right) and wondered if you had ever read anything by Dr Richard Bernstein? I mention it because I am a member of the forum there and there are a few T1's who are pretty serious athletes over there. Might be worth a look to you..I follow his idea's if not to the letter and it seems to be working for me, for the last 2 yrs.
Keep up the writing please..(big grin)
soso

9:15 AM  
Blogger Scott K. Johnson said...

Hi soso!

Thanks for stopping by - it's always nice to get feedback that your words are reaching folks out there.

I have read one of Dr. Bernstein's books - I think it was "The Diabetes Solution" or something along those lines.

What a learning experience - and to come from someone who has "walked the walk" so to say.

I think I was very scared off by the extremely low carb diet - I was not (or am not) in a place (mentally) where I think I can adhere to something like that.

Though it's not even worth arguing his results, and I've talked with people that are following the plan, and their results also speak for themselves.

At some point I will probably revisit the book, and see if I can apply some of the techniques to my life.

How has it been for you? To follow such a diet?

I'll have to check out some of those forums you mentioned - anytime I can get some additional information on the exercise and how it manipulates the metabolic process is well worth reading.

Thanks again!

1:23 AM  
Anonymous Anonymous said...

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2:14 AM  

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