I am fed up of living in fear - help would be appreciated

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BettyB

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Type 1
Hi,
I am new to this forum, although not to diabetes. I am type 1 and was diagnosed approx 10 years ago at the age of 21.

I have other health problems which mean I am currently housebound and have been for many years, so I am hoping that there might be some people who are willing to offer advice and support via this forum.
I have tried to talk to my specialist nurse about this, but nice as she is, she is only concerned with the physical side and the numbers achieved etc.

Without going into a lot of detail as I don't want to bore people if they are kind enough to take a look at this - I live in fear for a pretty large proportion of each day and I really don't want to. I am quite embarrassed about saying this as I am aware that lots of people with type 1 handle the emotional side of it well, but if I am going to find a way to overcome the fear I figure that I need to get some advice, and who better that other people with diabetes.

The fear and anxiety focuses around hypos and changes in blood sugar in a downward direction that I cannot explain rationally - I know from experience that there is much about diabetes that cannot be explained rationally, but there you go.
The fear started after a particularly fast dropping hypo that frightened the living daylights out of me. It seemed to plant in my mind several things that had not been there previously chiefly that if I got my insulin wrong I could accidently kill myself. I am not sure why this happened and I definately didn't get my insulin wrong - it was just one of those things which come with the territory, but once the thought was there the fear was too.
I now get someone to check my pens prior to injecting - not the decisions I've made on what I need, but more that they say the amount and the type of insulin that I want to inject. I know that realistically this is not necessary as I am very careful, but I cannot do my injections without this back up at present due to the overwhelming panic that I feel if I try. Also if I then do have a hypo I somewhat less afraid that it will carry on going down and not turn if I can refer to someone else.

I do realise that this makes me sound a little bit on the nutty side - which I really am not. In fact in most things I am a rational and reasonably intelligent and logical person, but with insulin, low bloods etc that side of me disappears and I really don't like that, hence I am asking for some support or advice from anyone who is willing to help.

This has turned out to be much longer that I intended it being and I still don't feel I've explained myself as well as I would have liked to, but to anyone who has bothered to read it I thank you very much.
 
Hi Betty

This sounds much more like an anxiety problem than a problem with your Dibetes management. I would suggest that you go and have a chat with your GP about anxiety counselling or therapy.

Fear of a hypo is a very common fear and a completely justified one if you have suffered one recently.

I suffered from anxiety before I was diagnosed and still get the odd panic now so I know a little of what you feel

I'm sure more folks on here will be able to offer more advice soon

You are very brave in finding yourself some support on here. Joining has been the best thing I have ever done.

Keep your chin up xx
 
Hi Betty, welcome to the forum 🙂 Very sorry to hear about the problems you are experiencing, it must make life very difficult for you :( You are certainly not alone in fearing hypos, I know that this can be a big and debilitating factor for many people.

What insulin regime are you on, and what is your control like generally? Are you generally able to dose appropriately for your meals? I have had a few hypos that have been very scary, but I am encouraged by the fact that, even with the worst ones I experienced, I have been able to treat them successfully - very important as I live alone. Do you have mild hypos at all, or are you tending to keep your levels raised in order to avoid them? I sometimes think that having some very mild hypos helps you realise that the vast majority can be treated quickly and easily, so they become less of a worry. I'm certainly not belittling your fear - severe hypos are very scary, not least because they trigger all the hormones that cause feelings of fear and panic :(

It sounds like, for you, this has developed into a full-blown phobia - not an irrational fear, because it is founded in a real physical possibility, but you do need to come to terms with the likelihood it is very rare if you have a good understanding of your diabetes. Have you sought a referral to a psychiatrist?

I do hope that you can find the strength to overcome this, it is clearly having a profound effect on your quality of life :(
 
Hi Betty, welcome to the forum. 🙂 I agree with what Megan said...I'm currently doing a course of cognitive behavioural therapy which I think is helping me with my anxiety & depression issues. It's all about trying to challenge unhelpful thought patterns using a number of techniques, including using a kind of 'law court scenario' to challenge the unhelpful thoughts. I wasn't sure if it would help me, but forcing me to rationalise my fears & provide 'evidence' for the other side of the question (eg in your case that could be that you've always managed to deal with hypos to date, the knowledge that you are careful with your doses etc so a drastic error is unlikely etc) had really started to help. It might be worth a chat with your gp to see if anything like that is available in your area. It's not easy being diabetic & we all need a hand sometimes. Xx
 
Hiya

I agree wholeheartedly. CBT-based counselling solved* a lot of issues I had, and some of them were issues I didn't realise I even had when I started the course! Which was originally in my mind, to try and help me cope with stress at work and the resultant panic attacks.

I understand myself a lot lot better now. And I always thought I understood myself before that anyway ..... LOL

* it's not like an instant solution, not 'just do this and it will stop'. It sort of subtly changed the way I tend to approach things ... the thought processes .... hard to explain.

But the important thing is - it worked.
 
Scary.

Hi Betty, I know just how you are feeling, do you see your diabetic nurse regularly, mine is sooooo lovely, and I can tell her everything I am feeling, often it seems silly to you, but the nurse will certainly have heard everything before, and will not think it silly, at all.

Keep me posted on how you are doing, I am a type 2 but we can support each other if you like. I have just found out today, so I am still in shock about it all. I came home with a carrier bag full of meds and a couple of leaflets!!!!!!!!!!!!!!!!!!! Got stuff to read, now. Take care. 😛
 
Hi Betty

Good to have you hear, and as others have said - you are not alone. Most of us struggle with one or other fear bias (though you seem to have it more profoundly than many). Either you fear highs/long term damage and tend to run a bit on the low side, or you fear lows and tend to run a bit on the high side.

Have you been able to take part in some structured education/carb counting course? eg DAFNE/BERTIE etc... One of those might give you a few more strategies/techniques for dealing with control day-to-day, and the supportive group environment can be very helpful in making attendees feel less isolated.

Look forward to hearing more from you over the coming months
 
Thanks to all of you who have taken the time to reply to me - it is much appreciated and makes me feel less isolated too.

A lot of the advice is relating to going to see someone about the fear or going on a dafne course etc, but as I am housebound due to health issues (not diabetes-related) these are not options for me. I have tried speaking to someone on the phone about this stuff - cbt(ish) stuff, and I made some small shifts in approach etc, but I have not found a way to overcome the fear enough to actually change anything that would really make a difference yet.
I have spoken to my diabetes nurse too although I don't get to see her very often at all because my control is fairly good inspite of the difficulties I have which means she says 'well it's o.k then', but it's not, because as some of you have said this is having a huge impact on quality of life etc and making diabetes feel like all there is to life, rather than being a part of life - which is not good.
Anyway thanks again for your messages and any further advice/support more than welcome. Betty
 
Hi Betty, I wonder if an online CBT course would help? There's one available at http://www.llttf.com/ (recommended by NHS Scotland and written by a Glasgow doctor).

Do you know anyone else with diabetes? Perhaps your DSN could put you in touch with someone in your area? It's often much easier when you can talk face to face, and who can relate to your difficulties, I know.
 
Betty, I wonder if your GP might be the more appropriate person to talk to about counselling help. They are more likely to know what resources are available in your area than the DSN. I do know there are some counsellors who are insured to make home visits so there is a chance someone would be able to come to you. I agree with the others that counselling, including CBT might be a great benefit to you. I hope you will be able to find the support you need and reclaim your life.
 
Hi Betty

It seems to me when you say:
but as I am housebound due to health issues (not diabetes-related) these are not options for me. I have tried speaking to someone on the phone about this stuff - cbt(ish) stuff, and I made some small shifts in approach etc, but I have not found a way to overcome the fear enough to actually change anything that would really make a difference yet.
Click to expand...
That your issues are not so much diabetes related as other health related issues. Can you (could you) share these issues with us? It might help us to talk to you and understand you better. It definitely might help with suggestions as to how you could cope🙂
 
Thanks for taking the time to reply.

However, just to clarify, the health issues to which you refer are a completely separate condition to the diabetes. I only mentioned it because it means I am unfortunately currently housebound which therefore rules out going on a DAFNE course or attending cbt/counselling etc-which is what many people suggested.

The anxiety issues I have are very much related to my diabetes, therefore any suggestions that people reading this might have regarding gaining some confidence with injecting myself without panicking I've got it wrong or advice regarding the huge fears I have about low blood sugars would be very much appreciated.

Kind regards
Betty
 
Think maybe what Patti was getting at might be somewhat like this.

Things that only bother us a bit can become insurmountable problems once we have other 'stuff' happen to us. It's not that unusual. If you can talk about ALL yer probs, large or small, then it does actually help. Even though the fact you have broken your leg and are in plaster and therefore housebound, has nowt whatsoever to do with diabetes !

GP -can you ring the surgery and ask for your doc to ring you about a problem (that you prefer not to discuss with the receptionist, thank you) and have a consultation over the phone and say that several people have suggested counselling but being housebound (which I presume he knows about anyway) blah blah.

Diabetes - are you treated at the hospital, do you have a proper DSN there, who you could ring up and talk to about your fears?

The other health thing - who do you see about that? Could you elicit their help? Esp if it's anything that needs to heal be it a broken bone or an operation scar or injury site - good blood sugar control is an essential element of healing so it is all connected. It's not in eg a surgeon's interest to have a patient struggling cos the black mark about lack of healing is on his record and his conscience, not the Diabetes team. (This does happen by the way, it's happened to me - consultant surgeon called the D consultant after an op. He came with his boots blacked the very next day. Followed a week later by my DSN. To my house!)

Psychological help - just a thought - there must be other housebound people who need psych help. (if one in 4 people suffer from MH probelms at some time or another, it stands to reason there must be doesn't it?) What about ringing MIND - explaining that you think you need counselling and why, and ask if there's anyone you could contact or get help from whilst you are housebound? There are only two possible answers.
 
I understood why patti said what she did and I agree that health conditions do impact on each other to some degree regardless of their differing natures.

However the reason I wanted to clarify things is because this anxiety is very much connected to the diabetes.

The online cbt course that someone kindly recommended earlier on is something that I will look into as a possible way to get past the phobia-like fear that I have at present around injecting and hypos etc.
 
Hi there

I was also thinking in terms that sometimes medication for completely unrelated medical matters impacts on your Diabetes treatment either giving you lows or highs. Sometimes the Drs who prescribe these meds are unaware of their knock on effects, as the patients taking them can also be unaware. Or for example I know of someone on another forum who is on a med for her BP and that med is causing her quite considerable anxiety problems which she often directs at her D. Just a thought.
 
Hi Betty

I wonder if part of your anxiety may stem from not feeling entirely in control of your diabetes. Since you are unable to leave the house to attend training/support etc (apologies I missed that detail in your OP) maybe some additional background reading, in addition to the BDEC/online BERTIE course might give you a better understanding of D management, feel more in control of it and less anxious about dose adjustment etc. The Ragnar Hanas book 'Type 1 in children, adolescents and young people' is well regarded on the forum, as are 'Think like a pancreas' (Gary Scheiner) and 'Using Insulin' (John Walsh)

The idea of contacting MIND about mobile counselling sounded a good one too.
 
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