I need some help I am struggling with the relentlessness of having T1. I’ve had it 37 years now. I’ve managed well and rolled with it this entire time. But for the last 6 months I’m a wreck. I’ve been looking for a therapist who specializes in helping people with chronic illnesses. I am considering meds for this.
All it takes is the CGM to not be working and I am in full panic mode. If my BG starts to rise I shake and panic. I am beginning to limit my life to stay near home because I am afraid of the pump or CGM failing. I’m making my family a nervous wreck also. Does anyone know of any zoom support groups? I don’t have a single friend with T1.
I can’t stand myself with this fear and panic.
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hello there @Spooky I am really sorry to hear about your struggle. I have had a lot of luck in therapy dealing with trauma, PTSD, generalized anxiety, and grief. If I take apart my feelings with T1, they (for me) fall into these “compartments”. These are also general enough that there are a lot of therapists I can choose from. You can also look for a JDRF chapter near you so you can meet others with T1 (typically at fundraisers) the link to finding a JDRF chapter is here: https://www.jdrf.org/chapter-finder/
Im working on 45 years with T1 and burnout and fatigue are real for me. its hard enough and it takes a toll when you feel alone and isolated. good luck and please reach out
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@Spooky,
I am sorry to see what you’re going through. It’s so good that you’re posting about how you’re feeling, I can totally relate. It’s been 23 years T1 for me and the realty finally hit me a few months ago. The stress of managing T1 well enough seems so monumental…….it makes me anxious. I can’t provide any answers really, but I will reveal some things I have done that has helped me a great deal, so far. I’m trying some new things too. Everyday, I’m trying to figure it out.
I got more involved with the global online diabetes community. It really helps with support, tips and venting. And, Taking Control Of Your Diabetes (TCOYD) see website. They have seminars, conferences, videos, songs, etc. It’s run by T1 Endos and they never cease to make me laugh. If you have time, check it out. I’m not associated with them in anyway, except I’m a big fan. It’s free too.
I have tried to text or call a friend everyday. I’ve stopped trying to be so positive and say I’m ok. I told my closest friends that I was suffering and they have supported me.
I took a mini vacation with several of my friends. It was so nice, beautiful lake, mountains, river, nature,…….there were 5 of us, all caregivers for our ailing parents who are over 80! I was surprised my BG did really well. It has changed my perspective. I highly recommend it, if you can.
I’m planning to discuss anxiety medication with my doctor. And, even therapy. I’ll do whatever it takes to make me feel good. We deserve to be happy.
I’ll look forward to reading about how things are going with you. Good luck.
Oh, I also feel nervous about my cgm, but i have enough test strips that if my cgm give out, i can finger stick every hour.
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Hi @Spooky, I’m not sure how to dm someone here (have only read a comment about it), however I’d be open to speaking to you and learning more about your situation.
I recently took a vacation with family and was surprised how it relaxed me from work, life, a broken wrist and T1D. A week of low stress did wonders for my BG levels.
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Hi Spooky. I’m not a therapist but have you considered taking a break from your devices? Maybe it would help to have a reminder that being “unplugged” for a while is okay - of course you will need to put a good action plan in place first.
Home BG meters didn’t come out until a few years after I finished college; and I got my first pump when I was in my mid -30s. I didn’t qualify for a CGM for a few years after that.
Maybe getting off your devices and going “old school” - even if just for a few days - will give you the confidence to know you can manage without the fancy gadgets.
All that said, I hope you are able to find a counselor who can help you.
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I am going to ask my doctor about this. I have such anxiety and panic every time I hear the pump or CGM beep it’s defeating the purpose. I am scared though even though I managed many years without a pump. Thank you for this idea
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. I want to thank you for your comment to my post. Just reading that someone understands is actually making me cry. I also have PTSD and panic disorder. It’s just so relentless taking care of myself. The stress is so much to handle. I am going to look into a local chapter. I hope there is one here Thank you for the suggestion
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Thank you for the reply. When you mentioned being a caregiver to aging parents. I think it helped me realize some of the panic I am feeling. I lost my dad in May and now my mom is having health issues. It’s contributing to my anxiety. I am going to check out the website you mentioned. I had joined another one years ago but found that I encountered some mean judgey people and that’s hard for me. This forum has very positive and kind people. I am grateful I found it. I also joined a few Facebook groups but those were problematic also. I took a vacation in May and it wasn’t great. But it was a tough month with losing my dad and I had 5 dexcom fails in a row during the first 2 days of the trip. That’s when I first found this forum.
Thank you for replying. It helps to know I am not alone
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Hi. I think I sent a message to you. I appreciate your offer to reach out. I need to find friends with T1. I’ve been going it alone for too long.
There is also “alert burnout” where you get so tired of hearing the frigging things, you stop paying attention or set them to a level where they’re not likely to go off (hopefully). I’ve found that if I’m getting lots of low bg alerts I need to adjust my basal rate (with Tandem) or my target BG on Omnipod.
Here’s a link to a discussion that may provide some tips for minimizing them, and if you type “alerts” in the search box there are others to check out as well.
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I absolutely have alert burnout.
Thank you everyone for responding so quickly when I was in such a bad place last night. Im going to spend the morning looking into your suggestions. I am also thinking of trying a DBT group for the panic.
https://www.goodrx.com/conditions/diabetes/diabetes-distress
Found this and it certainly sounds like me. Did you know there is such a thing as the Diabetes Distress Scale? And this is a recognized issue for which there doesn’t seem to be specific experts to help. Basically it gets covered by anxiety and depression but those of us with it know it’s so much more than that.
@Spooky I haven’t been in your shoes as a long-timer, I’m in this for 2.5 years now, dx’d at 66 or so (had to think about that, so maybe it’s progress). I had real temper tantrums and feelings of why bother for the first year +, I’m a type A personality and the thought I can’t control myself is just not in the cards. I think we must all go thru it at some point…early on or later depending on on our lives and outlook. The thing is: Know there are many of us that have or will have the same feelings as you, we’re here to help and offer sources that have helped us. Talking about here or other similar groups has been a life saver for me, as well as places like TCOYD, Waltzing the Dragon, FUD, etc. Don’t hold it in, let it out to us or others, laymen or professional… But know you’re not alone!
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My pleasure. I understand deep breathing can help with feelings of anxiousness - I find it helps to close my eyes while I do it. I don’t know if it helps with medical anxiety but might be worth looking into. Please keep us posted on how you’re doing!
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@Spooky,
Regarding aging parents….caregiver fatigue is very real and can put you in quite a state. I also run my own business, so it’s extremely stressful. Try to get others to help when you can. Often things fall upon one adult child.
Is your pump/cgm being too fussy? I went through that with mine for several years. It took a toll. With the help of my Endo and CDE I got back on track and it’s giving me peace now. Are you satisfied it’s serving you well?
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I think it’s doing a wonderful job helping me manage my A1c. When it works it’s fantastic. My doctor is really happy with how I’m doing. I think that too many things have piled up and with menopause in full swing I’ve been sent over the edge.
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Thank you Tom. I have found this particular forum to have such helpful and kind members. I was a member for awhile of another one. Years ago and found it to be too weirdly competitive. Lots of posting photos of straight lines of 100 of pumps and “suck it up and deal with it” kinds of comments. That’s not for me. I’m going to check out the ones you mentioned. Someone else mentioned one that you mention also. I’ve been searching for support groups that do zoom or local meetings and don’t see any. Looks like there’s a real need out there for something like that. I appreciate your replying and kind words.
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Hi Spooky, I agree it would be nice to have more of a local community of people who understand what it’s like, and I’m glad that forums like this exist so that anybody almost anywhere can have at least some kind of community. In case you or anybody reading this happen to be in my area, I live somewhat close to Sacramento, CA.
Managing diabetes is annoying at best, but what you’re describing sounds more like an anxiety disorder/panic disorder limiting your life, your anxiety just happens to be related to managing your diabetes, but other people with anxiety may have other reasons with or without other chronic health conditions. Anxiety disorders are very, very common, especially compared to type 1 diabetes. You should talk to a doctor about managing your anxiety better, as it sounds like it’s limiting your life. Maybe that would involve medication, maybe not.
If anxiety is in check, having your blood glucose go high is more a moment of. “Oh why did this happen, how can I address it, what can I do better next time” rather than getting really nervous and avoiding activities. Anxiety isn’t often useful, but it’s especially detrimental when it’s happening frequently without a true emergency. Diabetes control does not have to be perfect for you to live a long and full life. That said, feelings happen and it’s not always possible/easy to talk yourself out of it. So that’s where a doctor/psychologist may be able to help. Good luck and hope to hear more from you!
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Thank you for this wonderful reply. I already had panic disorder and PTSD but was managing it well with mediation and DBT (therapy) when my father died in May I just went over the edge and an unexpected eye bleed two weeks ago when I thought that was behind me, well it’s really brutal now. I have been trying to find someone who specializes in anxiety and panic and chronic illness. I just got off the phone with someone who is perfect but they only treat in NY and I am next door in CT. I could maybe drive in but thats an entirely new thing to be anxious about! I am going to type out what you wrote about high blood sugars and tape it to my meter. Its so surprising to me as I have been managing this for 37 years now and doing well. My anxiety was never related to diabetes until the last few years. Thank you again!
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Hi @Spooky, I don’t know any professional to recommend, but I do have a thought.
I’ve had some periods of frustration with the burdon of this relentless condition during 66 years of diabetes life. What has worked for me, is to just reset - that is, think back to basics and what I did, or have done, to get this far - apparently with success. What struck me was your “complaint” with pump and CGM - notably you fear that one or both of those devices may fail unexpectedly. Thirty-seven years ago, you did not have a CGM and very probably you didn’t have a pump - you had a syringe, a needle, and two vials of insulin, and a BG Meter that wasn’t very accurate; okay, you may have had a pen or two instead of the vials. And guess what, you didn’t have “this technology” torture.
Try giving yourself a needed break from technology and return to the easier, less worrisome “olden days” when life was more simple - diabetes-wise.
Just a thought …
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