Health Anxiety

[CartaX2]

Hello everyone,

I posted an introduction in the appropriate forum, but I wanted to talk about what brought me here in the first place.

I was diagnosed with Type 1 Diabetes when I was 16, so I have lived with the condition for 15+ plus years. Generally speaking, I believe I am taking care of the things that are within my control. I exercise regularly (25-30 minutes per day on stationary bike and resistance band training), don't smoke and hardly drink, and my weight is within normal parameters for someone my age and height. My cholesterol is normal, and my blood pressure is exactly where it should be.

However, my hemoglobin A1C has always seemed to fluxuate between 6.6 and 7.6. My most recent test was 7.2, and that was about three weeks ago.

I have found that over the past few years, the effects of high blood sugars seem to be much worse than they were before. I get very nauseous and light headed, with headaches. I am now also not feeling low blood sugars as well as I used to. Up until a year or two ago, I would start to sweat, get very hungry, and it was obvious my sugar was dropping. Now, it is completely different. For example, last night I was watching tv, when all of sudden I was hit with sudden nausea and light headedness. I checked my sugar, and low and behold it was 2.1. This was obviously scary.

Unfortunately, I have also begun reading online more and more about long term complications of Type 1 diabetes. Especially as it relates to nerve damage and cardiovascular disease. If I feel off at all, it seems I now automatically assume the worst. I am especially worried about stroke. My mom had carotid artery stroke when she was in her earlier 30s. In my paranoid mind set, I set out to be screened for such things about 2 years ago. I had an MRI done which showed no issues in my brain, and even went as far as to have a Doppler ultrasound on my carotid, which showed normal blood flow. Even after knowing these things, I still get worried when I am having an off day, such as which I am having now (headaches, etc).

I guess the point of this post is to ask if anyone else deals with anxiety around this disease, and ask how you find comfort. I am trying to do what I can to control the factors within my power, but I still struggle with consistent blood sugars. I have lower ones and high ones as well as ones in between and they all seem to average in the 7s when it comes to the H1C test.

I feel the anxiety is starting to control my life, and that is not what I want, or my family wants. I am just not sure what to do. Should I be really concerned about the times I had headaches even after tests were done? What strategies do you use to combat anxiety about your health?

Looking forward to the discussion.

 

[Neoncat]

I wish I could offer you a magic bullet @CartaX2 but all I can do is reassure you that you are not the only one to struggle with this. Personally I find distraction to work the best, when I get worried or upset about something I watch something on YouTube or listen to a podcast or go for a run. It doesn't really deal with the underlying problem but it does help in the moment to get my brain to calm down and focus on something else so the original thoughts can pass by. Hopefully some other people will be along with some more long term solutions!

 

[Neoncat]

Also I found talking to other diabetics really helped as I felt less alone and realised that nobody is achieving perfect blood sugar 100% of the time.

 

[ExtremelyW0rried]

I'm 25 years in and now feel every poor blood sugar result is a personal failure. I'm failing about 35% of the time which is really depressing.
I worry most about hypos are I'm here with my children on my own a lot and the thought of them waking up to find me dead is dreadful. Consequently I don't sleep much anymore and check my bloods every hour or so over night.

I have no advice really but you aren't alone. I find being on a forum etc actually makes me worse, even though I'm here right now! I used to be able to lead a fairly normal life but now diabetes consumes my every thought. It's no life to be honest.

 

[becca59]

The title of this thread is the give away, ‘anxiety!’ This requires expert help. Please seek some. Mental health is as important to deal with as physical health.

 

[therower]

Hi @CartaX2 . Welcome to the forum.
First off let me say that I'm no expert in anxiety.
However I do believe that diabetes finds many ways to infiltrate our lives.
After reading your post I thought " wow" here's someone on the ball with his diabetes management and I still believe that now.
HbA1C 6.6 to 7.6 even after 15 yrs. A lot would give anything for those numbers over that period of time.
Regular exercise, no vices, normal cholesterol, blood pressure and apparently a good BMI.
Possible hereditary family conditions all checked and clear. So far you're doing just fine.

So what's going wrong?
Blood sugar sometimes high sometimes low but always average about 7 . Keeping bs levels absolutely flat line is extremely difficult, we all peak and drop. What is your insulin regime? If it's MDI have you considered checking basal and bolus requirements? It's such an easy fix and something we all need to do on a regular basis but all to often let it slip us by.
Hypo unawareness. All to often this comes with running bs levels consistently low over a period of time. Have you tried letting your bs levels run slightly high for a few weeks to help regain hypo awareness?
As for the 2.1. We all get caught out occasionally, especially with those hypos that come on gradually, even more so when we are just chilling out watching TV. Lost count the times I've been caught out like that.
Biggest concern I feel is what you are reading online. It's the most dangerous thing you can do to self diagnosis online. An headache online can be caused by a 101 different problems and by human nature we focus on worse case scenario.
When was the last time you checked online the symptoms of feeling great, having a great day and feeling in total control? Probably never.
As I said earlier I'm no expert ( T1 27 yrs ) in anxiety BUT I feel your diabetes has found your soft underbelly, the chink in your armour. It knows it can't beat you with your overall control so it's found a way of hitting you with negative and dark thoughts.
You need to drag it out into the light, kick it's **** and let it know you have every intention of enjoying life with your wonderful family. You may need help doing this either from people on this forum or people trained in anxiety management but you can and will do it. The fact you are here now proves you want to beat this.
Good luck and stay with us.

 

[Juicyj]

Hello @CartaX2 i think it's natural for anyone with a health condition such as type 1 to have anxious thoughts about their health, and to some degree it's also OK to think this way as we need to be mindful of the possible complications if we don't manage to keep good control. It's when it starts to become an obsession or consumes your life and affects those around you that it needs help and support. My personal view is to manage the day to day as best as I can and if I'm doing that then I hope to avoid any complications, so more of living in the present and not worrying about the future.

 

[PenguinMum]

To @CartaX2 and @ExtremelyW0rried . I am T2 and I dont know much about T1 except it seems more complicated. However I hate to think of you being so anxious and I think @ExtremelyW0rried should have had counselling long before now. There are wonderful people on this forum who really do understand how hard it can be. They might be restrained in being able to offer what you need but Diabetes is no joke and everybody wants to support you in any way they can. Go get counselling and in the meantime talk to us if it helps.

 

[CartaX2]

Hello everyone,

Thank you for the kind words and support. This disease never really bothered me at all until I had children. Then, of course, taking care of myself became not only about me, but for my children as well.

I am in the process of speaking with professionals about it, and have been on medication for anxiety on and off again over the past few years. I think my biggest worry, rightly or wrongly, is stroke. Mostly because of the hereditary nature of it and due to having type 1. Every little bit of pain that I do not classify as normal I automatically assume the worst. If my sugar is running high, which brings it's own pain, I keep thinking of the damage being done cumulatively to my body. As I mentioned before, I have had tests to determine if anything was going on about 2 years ago. I want to think that nothing severe could happen to my body in the two years hence, and I do my best to take care of the factors I can control. The biggest thing I am having issues with is consistently good blood sugars. Most days I usually run at least high or low, although not extremes.

I am glad I found a place like this. Although in Newfoundland there is a very large population of people with Type II Diabetes, I don't know of a single adult personally who lives with Type I. I rely on my family for support, and they are awesome, but I don't think they can appreciate exactly what it is like to live with the disease every day.

Looking forward to my time here.

 

[NoKindOfSusie]

There almost isn't a way to discuss this without being told you're being too negative but this is basically my situation too.

They tell you to learn as much as you can, but if you read about diabetes all you find is more and more lists of things that can go wrong with you because of it. From what I have read, it is basically impossible for anyone to have such good management that you can possibly avoid all of the things that can go wrong and the only conclusion I can come to is that it is going to get me one way or the other, it's just a matter of how and when.

Personally I do not want to live for decades of painful disability because of this, I would much rather it killed me quickly. Unfortunately I have found that a lot of people prefer to ignore this reality and instead concentrate on constantly "being positive" which actually makes it worse because not only do you have all the problems to worry about, you also have the fact that everyone seems to hate you for it.

I don't really know that there's a nice way to end this but if it helps, I am right there with you.

 

[SueJB]

Hi @CartaX2

Hug
I agree with @therower bring it into the light and kick it. I know I've been told to take "ownership" of my diabetes, which I think is a very silly thing to say. I do think we need to know the possible consequences and what you read can be overpowering. We are all aware of the possibilities and I don't think that anyone with T1 is perpetually upbeat but there is a saying that goes:
Smile and the world smiles with you,
Break wind and you stand alone.
You are doing grand.

 

[KK123]

This is a difficult one. I think that sometimes some comments contribute to those feelings of 'anxiety', such as when people get praised profusely for low numbers especially at the Doctors or clinic, you get lots of 'well done', that's fantastic' and so on which makes you feel good when you have worked hard to achieve it and that's great.
On the downside those people who have worked equally hard but not achieved the 'perfect' numbers are left thinking they have done something wrong or have failed miserably. I personally am not the type to become overly anxious if my morning levels are above 6 or give much of a t*ss if a Nurse frowns at me, but I can understand why so many individuals become anxious when they see others lauded for their numbers when they themselves simply cannot compete.

 

[SueJB]

This is a difficult one. I think that sometimes some comments contribute to those feelings of 'anxiety', such as when people get praised profusely for low numbers especially at the Doctors or clinic, you get lots of 'well done', that's fantastic' and so on which makes you feel good when you have worked hard to achieve it and that's great.
On the downside those people who have worked equally hard but not achieved the 'perfect' numbers are left thinking they have done something wrong or have failed miserably. I personally am not the type to become overly anxious if my morning levels are above 6 or give much of a t*ss if a Nurse frowns at me, but I can understand why so many individuals become anxious when they see others lauded for their numbers when they themselves simply cannot compete.

I sort of agree but I don't see it as a competition, just good to share and know people understand

 

[Scott-C]

@CartaX2 , I recall shortly after I was dx'd in 1988, I read an article by a 25 yr old (I was 21 at the time) about how she had been told she was going to be blind within a year.

As a newbie, that scared the sh*t out of me, but, in a strange way, it actually motivated me to look after myself. I said to myself that's not going to happen to me. So, I've spent the time since doing my reasonable best to stay in range, but not get too upset if I miss target from time to time, because it happens.

The author finished her article by saying that she tightened up her control and came out unscathed.

I know there are no guarantees with complications, but I don't dwell on them. I have a healthy respect for them, and know that provided I put in some effort to staying in range most of the time, I'm massively improving my chances.

I know statistics are just statistics, but it's sometimes worthwhile looking at some numbers to keep things in perspective.

No idea how Newfoundland/Canada tracks these things, but, just for example, Scotland, where I am, publishes an annual survey, link below.

The most recent is for 2016. There's about 30,000 T1s in Scotland.

Page 84, the number of T1s ever recorded as having a stroke is 651. That's not per year, that's ever recorded. I don't know how long the period of recording is, probably in the report somewhere, the survey has been been running since 2002. Given that there's currently 30,000 of us, along with all the others who will have come and gone since recording started, I reckon 651 is a fairly small number.

Of course, that's not much reassurance for the 651 who had the strokes, and others might say 651 is a high number, but that's up to them. I happen to think it's a small number.

Page 93, a grand total of 17 T1s recorded as being blind. Again, not per year, in total. Out of 30,000.

Figures for other complications are also reassuringly small, we're taking 1% for amputations and 2% for foot complications.

I'm not inclined to trawl through the statistics, but my gut feel is that many of the people who have suffered complications are from the older generation who haven't had the advantages of more modern treatment and screening methods and the people who have, lets be honest here, just not bothered taking care of themselves and think it's ok to run around in their 20s for weeks on end. It doesn't sound to me that you fall into either of those categories.

Like I say, there's no guarantees with this, but the odds seem to be in our favour.

http://www.diabetesinscotland.org.uk/Publications.aspx?catId=3

I don't know what there is in the way of structured education in Canada - hopefully a fair bit, seeing as you guys discovered insulin! - but if there's any equivalent of DAFNE I'd recommend getting signed up on that. It can teach still teach old dogs new tricks.

Pre-bolusing works wonders - don't know if you do it.

Shame the libre didn't work out for you. Some sensors can be sketchy but not all. It's possible to calibrate them with apps like glimp, or the set up I use, a blucon transmitter and xdrip+ which turns it into cgm.

It's worth persevering with - cgm and pre-bolusing are the two things which have made the biggest difference to my control in the last few years. Instead of watching a big spike up to 12 or 13, I now try to pre-bolus, wait for the trace to start inflecting downwards, so sometimes, I'll get a downward spike, or a modest 8 spike. That would be impossible without prebolusing.


Couple of books worth looking at if you-ve not already: Think Like a Pancreas, Gary Scheiner, and Sugar Surfing, Stephen Ponder.

I think there are grounds for optimism - you're complication free after 15 yrs and that stands you in good stead for the future.

The 2.1 you had without noticing it just really means that you're autonomic response system, which usually gets adrenalin and glucagon to tell the liver to release glucose, has become blunted due to past hypos. Many have kick-started it again by deliberately running around 7 or 8 or 9 for a few weeks, not normally adviseable, but the lesser of two evils for the longer term good.

 

[Broomthebeast]

There almost isn't a way to discuss this without being told you're being too negative but this is basically my situation too.

They tell you to learn as much as you can, but if you read about diabetes all you find is more and more lists of things that can go wrong with you because of it. From what I have read, it is basically impossible for anyone to have such good management that you can possibly avoid all of the things that can go wrong and the only conclusion I can come to is that it is going to get me one way or the other, it's just a matter of how and when.

Personally I do not want to live for decades of painful disability because of this, I would much rather it killed me quickly. Unfortunately I have found that a lot of people prefer to ignore this reality and instead concentrate on constantly "being positive" which actually makes it worse because not only do you have all the problems to worry about, you also have the fact that everyone seems to hate you for it.

I don't really know that there's a nice way to end this but if it helps, I am right there with you.

But even if you're aiming for a short life, don't you want to live this short life in a way that you feel well in your body and capable of doing things? If I die tomorrow I'd rather have a good day today where I can do what I want to do without being obstructed by feeling physically/ mentally/ emotionally like ****?

 

[KK123]

I sort of agree but I don't see it as a competition, just good to share and know people understand

Hi Sue, I don't either but I was thinking more about those who are prone to see the numbers of others and then get anxious when theirs don't 'match up'. I almost think that people with such anxiety should be very careful about scouring websites as sometimes they are quite scary.

 

[CartaX2]

@CartaX2 , I recall shortly after I was dx'd in 1988, I read an article by a 25 yr old (I was 21 at the time) about how she had been told she was going to be blind within a year.

As a newbie, that scared the sh*t out of me, but, in a strange way, it actually motivated me to look after myself. I said to myself that's not going to happen to me. So, I've spent the time since doing my reasonable best to stay in range, but not get too upset if I miss target from time to time, because it happens.

The author finished her article by saying that she tightened up her control and came out unscathed.

I know there are no guarantees with complications, but I don't dwell on them. I have a healthy respect for them, and know that provided I put in some effort to staying in range most of the time, I'm massively improving my chances.

I know statistics are just statistics, but it's sometimes worthwhile looking at some numbers to keep things in perspective.

No idea how Newfoundland/Canada tracks these things, but, just for example, Scotland, where I am, publishes an annual survey, link below.

The most recent is for 2016. There's about 30,000 T1s in Scotland.

Page 84, the number of T1s ever recorded as having a stroke is 651. That's not per year, that's ever recorded. I don't know how long the period of recording is, probably in the report somewhere, the survey has been been running since 2002. Given that there's currently 30,000 of us, along with all the others who will have come and gone since recording started, I reckon 651 is a fairly small number.

Of course, that's not much reassurance for the 651 who had the strokes, and others might say 651 is a high number, but that's up to them. I happen to think it's a small number.

Page 93, a grand total of 17 T1s recorded as being blind. Again, not per year, in total. Out of 30,000.

Figures for other complications are also reassuringly small, we're taking 1% for amputations and 2% for foot complications.

I'm not inclined to trawl through the statistics, but my gut feel is that many of the people who have suffered complications are from the older generation who haven't had the advantages of more modern treatment and screening methods and the people who have, lets be honest here, just not bothered taking care of themselves and think it's ok to run around in their 20s for weeks on end. It doesn't sound to me that you fall into either of those categories.

Like I say, there's no guarantees with this, but the odds seem to be in our favour.

http://www.diabetesinscotland.org.uk/Publications.aspx?catId=3

I don't know what there is in the way of structured education in Canada - hopefully a fair bit, seeing as you guys discovered insulin! - but if there's any equivalent of DAFNE I'd recommend getting signed up on that. It can teach still teach old dogs new tricks.

Pre-bolusing works wonders - don't know if you do it.

Shame the libre didn't work out for you. Some sensors can be sketchy but not all. It's possible to calibrate them with apps like glimp, or the set up I use, a blucon transmitter and xdrip+ which turns it into cgm.

It's worth persevering with - cgm and pre-bolusing are the two things which have made the biggest difference to my control in the last few years. Instead of watching a big spike up to 12 or 13, I now try to pre-bolus, wait for the trace to start inflecting downwards, so sometimes, I'll get a downward spike, or a modest 8 spike. That would be impossible without prebolusing.


Couple of books worth looking at if you-ve not already: Think Like a Pancreas, Gary Scheiner, and Sugar Surfing, Stephen Ponder.

I think there are grounds for optimism - you're complication free after 15 yrs and that stands you in good stead for the future.

The 2.1 you had without noticing it just really means that you're autonomic response system, which usually gets adrenalin and glucagon to tell the liver to release glucose, has become blunted due to past hypos. Many have kick-started it again by deliberately running around 7 or 8 or 9 for a few weeks, not normally adviseable, but the lesser of two evils for the longer term good.

Hi Scott,

Thanks for the reply, and for the information.

I am starting to try the pre-bolusing thing. It is a relatively new concept to me but I am definitely going to give it more time. I remember a time that I purposely lowered the amount of carbs I ate for a 1-2 month period in an effort to improve my A1C. When I was tested, my A1C went from mid 7 down to 6.6. I was so happy with this. However, my nurse essentially scolded me for not giving my body enough carbs to actually run. She indicated that the brain needs carbs in effort to function properly, and that my body will start taking energy from fat stores. So essentially, by improving my A1C I actually hurting myself in other ways. I find with eating alot of carbs, I am always high an hour or two after. These are things that concern me most over the long term.

I also want to add, that I have a 9 year old daughter who was diagnosed with Type 1 at age 5. Thankfully, I knew what to expect for the most part, but I was not prepared for the effect that the growing body has on insulin requirements. It is a constant struggles with her sugars, but we are trying. We are both using the insulin pump.

The disease is just really getting to me lately. I don't feel as "healthy" as I used to, which is concerning. Like I mentioned as well, I have had every test that could be conceived to look for any clogged arteries etc. I've had an MRI, ultrasound, you name it and I have had it. I guess the family history thing is what is always nagging me. I have two risk factors....my type 1 and family history, but I do my best to control the other factors. It is just such as struggle sometimes.

 

[Cathysbd]

I’ve been type 1 for 45 years (I wasn’t well controlled in my teens &20’s). I’m doing a bit better now but still not brilliant, current hba1c is 9. I’m on a pump (2 Years) and am trying to do low carb.
I have a deep fear of heart attack/stroke, it keeps me worrying such a lot.
I’m in my mid 50’s and I know I need to change to a much healthier lifestyle (exercise, lose 50 lbs, improve blood sugars). I totally understand the worry, anxiety. X

 

[SKB_9]

I'm so sorry to hear this. It sounds to me like you are experiencing health anxiety (a diagnosable anxiety condition, different to 'anxiety about health'. This problem is fairly common and can often be triggered by losing a close friend or family member suddenly to a physical health problem, or experiencing a physical health problem yourself. Anxiety about your health is totally understandable when you have t1, but as you say the anxiety is taking over your life, I would encourage you to see someone about this. Health anxiety can be very treatable with a therapy called CBT. It's not for everyone but there's no reason it wouldn't be for you, and there's not much to lose by giving it a go. You can also find free CBT self help guides online if this therapy is financially unrealistic for you. When you research online, I recommend sticking to reputable sites such as the NHS or Mind (or a local equivalent). Best of luck

 

[benjdavis]

Hi
You're not alone.
I went from experiencing regular crippling attacks of anxiety to only feeling off every now and then.
My brain would confuse the sensation of being excited ( rush of adrenaline, euphoria) with the feeling of a hypo , so much so that I would actively avoid participating in enjoyable everyday Pursuits .
This left me feeling sad and compounded my anxious feelings.
We are not in control when in the grip of anxiety but when it comes one must try to remember that it it passes quite quickly.
Before and during an attack of anxiety it can feel as if a hurricane is coming and you will surely be swept away but afterwards, but you soon realise the hurricane was just a strong breeze and notice no damage has been caused, all the trees are in tact and you are unharmed just feeling a little sweaty.
This is the cycle for me on repeat but i have learnt to recognise the approaching signs of my mind going into overdrive. By reminding myself that this terrible feeling was a product of my mind and not my body, and frankly I wasnt going to die ( at least not at this very moment !) I find it easier to disassociate with anxious mind and step into the position of Observer. This makes me feel peaceful and puts me back in control .
I accept that I have a long-term condition I also accept that it's not going to get better.
It's devastating but as there is nothing I can do about it, I'll be damned if I'll allow anxiety to take over my mind the way diabetes has.

You will get through this and you are not alone.