I am dealing with C-PTSD and T1 and the clinic I go to wont understand... Do you?

Type 1 and LADA
1

Hi all…

I am new to this site but I hope someone here can help me…

I am 28 yrs old and I have been living with T1 for 17 years. Before I was diagnosed I was an over weight child. I was call names and tormented by all of the students and my teacher was worse. Well my parents sent me away for that summer and when I came back I lost all of the weight unknowingly it was due to diabetes. When I was finally dx my parents thought at age 12 I was old enough to deal with my treatment on my own… not true. I developed an eating disorder by age 13 and by age 14 I had put myself into a coma. I was sent away for treatment and when I came back again my parents thought everything was better. My home was violent, I felt alone and scared so I tuned to drugs and leaned on my “friends”. By senior year I was a fully addicted to hard drugs. AGAIN, I was sent away to deal with my problems.

This life style was not healthy for anyone at such a young age especially for a T1. Years went by and I was put into many, many, many horrible situations. I still don’t feel comfortable talking about it and I have to assume that this is the root of my problems…

Living with C-PTSD had made my life very difficult. I have panic attacks, I forget to eat, sleep, and at some points even breathe but most importantly I forget to test and even take my meds. I feel horrible but then I feel horrible for feeling horrible! I am living in the cycle and I don’t know how to get off!!!

I do not have health insurance so therefore I go to a clinic. I have tried to explain to them that I am dealing with other issues but no one is helping me. I don’t know where to turn… I want to have a family but due to my high A1C the drs believe that its causing infertility. I don’t want to hurt myself but I am so lost and scared…

can anyone else relate?

Thanks
RS

2

I’m sorry to hear that you have had such a rough time. I do welcome you to these forums. I think we all have to deal with various issues. There are certainly people here who have dealt with T1, but also things like eating problems. You’ve done a really good thing by coming here. Often we can live our lives isolated. Nobody in our local neighborhood understands diabetes or the problems we deal with. But here, there are thousands from all across the world and we can often find others who can understand, share and help.

3

Thank you so very much for you kind words… I can see I did find the “right” place for me!

<3 RS

4

Hi Sunny, I am also dealing with PTSD, however I’m a T2 (on multiple daily injections of insulin).

I think it’s very hard for medical professionals to understand PTSD and how it impacts our ability to engage in consistent self-care. I also have erratic sleep patterns, go hours without eating, etc.

I am struggling too, so I can’t offer a lot of advice except that you and I both need to establish a relationship with a skilled therapist who can help us with the PTSD issues (panic attacks, anxiety, lack of trust, erratic schedules, impulsive urge to self-medicate the pain, etc.)

It’s a long-term learning process but there are things we can do each day to move forward. I am trying to establish a more regular sleep schedule (this is a huge challenge for me), meditate at least once per day, test my blood sugar at least four times per day, etc. Just get some sense of routine, of reliability, of caring for myself as I would a dear friend or beloved child.

Sometimes the best thing to do is just pick ONE thing to focus on, and try to get that ONE thing locked in before moving to the next thing. I did this with my diabetes by just making a ritual every morning:

As soon as I get up I do these three things within five minutes:

  1. Take my synthroid with a glass of water
  2. Test my blood glucose
  3. Inject my first Lantus injection of the day

Then I write it all down in my log. If nothing else, my log will have these things in them every, single day.

From this discipline, a whole bunch of other things have evolved, and I’ve moved my A1C down over one point (and dropping).

Getting back on track and STAYING on track starts with baby steps. I know you can do it.

5

I am at work and I cant hide my tears of JOY! I can’t believe you understand too… thank you, thank you, thank you!!! I think the idea of picking 1 thing could work for me. When there are sooooo many things I have to focus on I loose complete focus and just go to sleep to make it all go away. I am going to try when I wake up to test then correct if I need to then write that down. I think I can manage that… I am so scared to fail but I am becoming more afraid of what can happen if I don’t change my life!

Thank you!
RS

6

Just SHOW DIABETES WHOSE BOSS! Sorry to say I can kinda relate here. Those wild teens huh? I’m sorry for all you had to go through. Just keep beliving in yourself (although I know when you have times like you discribed it can be hard) I lived through some…ugh…trobulesome times but am now a mother of 2 girls 22 & 21 and the g-mother of 3 small g-kids. YOU CAN DO IT! Don’t let anyone tell you you can’t!

7

HI Sunny,

Welcome to the forums :slight_smile:

I have been dealing with anxiety issues my entire life - long before D. I know its not exactly the same as what you have been going though, but its similar and I wanted to respond to your comment of being scared to fail. I’m not a prophet or anything, but you should never be scared to fail. Failing is ok, its what you do after you fail that defines you - are you going to get up and continue to try, or wallow in the failure.

Anyways, I like Jean’s idea of picking one thing. If you focus on putting a journal together, and thats the one thing, it will help you in your daily routine. You could even make a little something on the computer that you could print out and bind in to a journal, something that you need to check off to show that you have did a specific activity for the day: took you morning insulin, etc

Take Care,
Jason

8

Jason,
Thanks for another great idea! I am going to create my own journal/check list. This way I can also remember what I did because memory lapses are a norm for me too. Sometimes I take double insulin bc I forgot I already did. Ugg… I just wanna cry. I will let everyone know how I did…

thanks
RS

9

Thanks for the PEP talk! I feel like I should carry you around in my back pocket to cheer me on when I start feeling blue!!

You are too sweet!
RS

10

RS-

Welcome to the site. I am kind of new on here too. It is a great place for advice or to just vent. Keep up the good work. There are a few groups on here for PWD’s & eating disorders, so you should check that out. My advice to you is to not try and be perfect all at once. Take baby steps, make small changes little by little and you will get there. YOU CAN DO IT!

Katie

11

Your welcome (blushing here) I just want ppl to know if they try harder enough they can do some of the things I done to get here. Rember what I said!

12

Welcome to the site. Never be afraid to say anything here. I would try to give you some advice, but everyone before me has already given you some great tips! Be strong, never quit trying and take back the control you’ve been struggling with. The hardest part of my diagnosis was loss of control over being able to be who I was. There have been a lot of bad days, but the good ones are far outweighing the bad at this point. You’re not perfect, nor am I, nor is anyone. So the best we can do is see the past for what it is, the past and step forward into the light of a new day. I live my life by one phrase now, it’s simple and 2 words long. “No Excuses.” Your life is your own and you can move forward.

The thing that I see most in that post isn’t your past, or your worries, or your A1C… it’s that you have goal for the future. You want to have a family. Make it happen, you know how. Test, log, calculate, inject, eat, drink, talk to your friends, have fun with life, repeat.

SuFu

13

I can relate to the forgetting part. I was a similar age when dx. My parents acted the same way that at 12 I should be able to make all the correct choices about dealing with. The forgetting part had haunted me since then. I found I have to develop patterns so I remember a lot of the things I need to do. My endo 10 years ago one of the issues with developing T1 at that age is terrible short term memory. I don’t know if it is a side effect or a complication, but I do know if I change my routines during the week I will forget to do something.

14

I don’t really have any advice this time around as I see you’ve already gotten some great examples. But just wanted to let you know that I can relate. I was a chubby kid and then the first in my bloodline to get Type 1. I was diagnosed at age 14 and took ownership of it myself. Then I was anorexic, then bulimic. I went over 2 months without taking ANY insulin at all, nor checking my BG at all. I don’t know how I survived. I was a cutter too, and didn’t have a very healthy home life either. I was never “sent away” to deal, but I did enlist a few different psychiatrists- who ended up telling me “wow. You sure do have a heavy pile of rocks you carry around with you.” They wanted to medicate me, but I HATE medications. I was in Dka 6 or 7 times in a few short years.

When I finally did start taking control of my life, I had already turned close to 21. I was in insulin shock comas left and right while learning to adjust my meds. Plus a few stints with no health insurance didn’t help any.

I’ve been doing well for the past… 5 years? I have gotten my A1c down to 6.5% and am 7 months pregnant with our first child. Things are looking up.

Just wanted you to know things can turn around. You just have to … make up your mind? That’s what ended up doing it for me. I had to make up my mind that T1 was what I was going to focus on for a while. For a while T1 was ALL i thought about. But, now, it’s just habit. Like the 10+ BG checks I do a day. And the 20 injections I do a day. I’m a healthy weight now, no food abuse that I’m aware of, and no withholding of insulin.

I hope you can get on the right track. I started coming to TuD about 3 years ago and it was the BEST thing I ever did to really help my diabetes life. Good luck.

15

I forget too. So I have to schedule my shots at certain times of the day. I forget to eat some days too, but my husband reminds me. Wonder if it really is a side effect.

16

Thanks for your post, Marps. It gives me great hope that I can look back some day with pride at how far I’ve come.

I’ll get there…one baby step at a time.

17

I have to write everything down. I also have to make sure that I actually DO it, not just write it down and then get distracted and not do it. It’s a kind of mental discipline that is hard when I’m feeling anxious, overwhelmed and easily distracted (jumpy). I think of these things as rituals, which help ground me and keep my focused, e.g.:

  1. I got a pill case with one slot for each day. As soon as I take my synthroid, I log it AND I leave the slot for today only open (the others I keep closed) so I know I actually took it. By having two confirmations (log and open, empty case slot for today) I am more likely to remember and feel confident that I did it.

  2. I know some people lay our their syringes or pen needles for the day – in a case or a zip-loc bag. That way they know they took, for example both of their injections of Lantus or at least five injections of Novolog or whatever. I have a double log – a page for each day where I put everything in date-time order as it happens (injections, BG tests, food eaten w/ calories and carbs, etc.), and then a single page that holds everything in short-hand in rows and columns, a kind of My Week of Diabetes Self-Care At A Glance. If I miss one log I usually hit the other. It may seem funny to people with a better memory, but this logging really helps me stay on track.

  3. I use my computer calendar to remind me of things, like going to the pharmacy to refill prescriptions, when it’s time to schedule follow-up appointments with my doctors (eye checks, mammograms, etc.) as these might need to be scheduled a few weeks in advance. I also put my upcoming appointments in there, with reminders set.

  4. Setting up a desk with “a place for everything and everything in its place”: Lantus pen above the keyboard, Novolog pen to the left of the keyboard, pen needles to the right of the keyboard, log on top of the printer, pill cases just under the monitor, OneTouch case on top of the shredder to my left, etc. I find that the less I move things around, the better I do. Once I establish a place, it becomes second-nature to go there for that item. If I move things around? Watch out.

The thing is, despite being a fairly smart lady (blush) I can still show up to work with my pants on inside out (funny story! never put on black leggings in a dark bedroom on a pre-dawn winter day!) or not remember at 8:30 if I took my medication at 8:00. It’s the endless, repetitive tasks that do us in. This is hard for anyone, but if you’re already feeling scattered, anxious and overwhelmed, it’s triple-hard. That’s where my rituals seem to help me stay on track.

18

I occurs to me that at least a part your forgetfulness may be due to high blood sugar. I know that I was in a perpetual fog pre diagnosis.

It seems you came to the right place at the right time, lots of great advice and peoples stories of conquering similar problems. Sometimes the best therapy is just talking things out with people who know exactly where you are coming from.

19

Sunny, I’m sorry that you endured so much. You need to give yourself a lot of credit for making it through so much. It is a testament to your courage and strength. I’m glad that you posted here for help and I am thrilled to see that you are listening to the ideas that are coming your way in response to your post. You have the right attitude – ask for the help you need and take in everything you can to help yourself. The fact that you are doing that so eagerly says to me that you are ultimately going to be just fine. Keep active here and keep posting. This community can and will eagerly help.

20

Hugs, sweetie. In addition to everything you endured, also being sent away several times must have been awfully hard on you.

Glad you’ve found us. You’re not alone.

Certainly not the mutiple issues you’re dealing with, but I’ve given up looking for understanding from healthcare professionals. Beating my head against a brick wall was too exasperating. Once I accepted that it was all up to me & I didn’t need their approval, it was liberating. Scary at first, but liberating.