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My friends aren't sympathetic when it comes to going low

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Fatima_94

Member
  1. Hi everyone,

    I'm new to this forum! I've been reading the threads and it's nice to have a place where people understand the struggles that come with type 1 diabetes.

    I've been a type 1 diabetic since the age of 12 (I'm now 22), and my friends have always been supportive in general. However, I go low a lot and sometimes it feels like they blame me for not controlling it well. I struggle with diabetes and although my sugars are usually okay, I feel as if I'm walking a tight-rope and that it's difficult to get it exactly right all the time.

    One of my friends, who is a fourth year medic student, told me that she hasn't seen a diabetic go low as much as me and that she'll get angry if i go low again (i go low once a day or once every 2 days) (also- she said it in a more concerned rather than an aggressive way) and another told me that I'm not organised and that its about how organised i can be with it, and even asked how comes her other friend with type 1 is able to control it so well and never goes low.

    I find this upsetting and somewhat infuriating, even though I know they are doing it because they care. No matter how many times I seem to tell them that its not easy, they somehow manage to make it seem like I'm just neglectful/irresponsible with my diabetes, when this isn't the case! I find it deeply frustrating when the people around me don't understand and start blaming me for something which is incredibly difficult to live with. If it was a different kind of disease they would probably have a more sympathetic reaction, despite diabetes being a daily battle.

    Does anyone else experience this? Or am I being overly sensitive?
 
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Hi @Fatima_94 ,

Welcome to the forum.

To be fair. If you keep company more often with your friends than the other diabetics they know. Of course they might see you having more lows...

Sounds like you may need new friends?
 
Hey @Fatima_94 Welcome to the forum

Well sorry to say your friends don't sound very sympathetic at all, firstly they don't live with this condition, so they don't realise that one size does not fit all, type 1 isn't a uniform condition that has exactly the same results for everyone, and coupled with that what works one day doesn't necessarily work the next, it is unique to the physiology of our bodies. Personally when I run low I can be quite sensitive so this compounded with an unsympathetic voice will not doubt cause me to possibly let rip !! I don't think I would even be happy being around someone who cannot be sympathetic as I wouldn't feel happy in their company. Until you have lived with a condition you cannot speak wisely about it, so I would suggest ignoring their comments, having a thick skin definitely helps, also talk to those who do understand, as you'll find we understand where you are coming from completely x
 
@Fatima_94 I would love someone to walk for a day in my shoes. And I'm sure if your friends could walk in yours, they would be able to begin to 'get' just what effects the seesaw, the rollercoaster, the multi-factored headspin that is type 1 diabetes can have on your life.

Have a read of this thread of @himtoo 's - and heck, ask your friends to read it too. There are many ways to explain what it's like to live with type 1, and some of these insights might be very helpful to you and to them.
http://www.diabetes.co.uk/forum/threads/explaining-what-its-really-like-to-live-with-type-1.103794/

Have some hugs from me though to be going on with. Been there.
 
Hi @Fatima_94
I can empathise with you. My boyfriend often comments that I have too many hypos. He is definitely saying it because he cares but it makes me feel guilty. I do try to keep my BG in range but it is tough to do so without living what I would feel to be a boring life. I like to exercise when I feel like it, drink when I feel like, slob when I feel like, eat new and interesting foods, ...
Diabetes does take some organisation but unless you have done it, it is not possible to understand how much this takes its toll and how much you would like a break.
From the sound of it, you may hypo more than recommended. If you have a chance it may be useful to talk to your diabetes team about this and get them to help understand if there are any patterns which could be ironed out through some minor insulin adjustments.
But, in the meantime, don't let your friends get you down - remind yourself they say the things they do because they care about you.
 
helensaramay said:
My boyfriend often comments that I have too many hypos. He is definitely saying it because he cares but it makes me feel guilty.
Click to expand...
What you've said here really strikes a chord with me, @helensaramay !

I've just had a 'waaaaaaah' conversation with Mr S because I've been what he calls 'bouncing along on the bottom' in blood sugar terms all day - and I'm 4.8 right now, having been 5.2 and 4.8 and 4.6 (in random orders) over the last hour - and I'm going through the head***k of 'this is perfect right now, but will I go low? Should I eat something? Or will that make me go high? Shall I turn my pump down a bit? Or leave well alone'. He's worried that I'm about to walk next door for an osteopathy treatment and be low and incoherent - and I really really really don't want to go above 5.8. EVER.

Sadly it's all fuel for the 'I think you're doing far too much exercise, Snapsy' debate......


PS Now 4.0. Okay. Turning pump down........
 
Hey @Fatima_94, I've had T1 over 20yrs, I found friends and even getting family to understand type 1 and low bg is like banging your head against a wall, it's like groundhog day... if they don't have it they will find it hard to relate, having diabetes tends to be a very personal journey. Your 4th year medical student friend sounds as if she has little experience of diabetes and so she is exactly what she still is... a student, even some qualified GPs don't get it. You are not the only one who has had multiple lows in one day, it is not unusual, just ensure you are prepared for them and live a normal a life as possible, good control is a tightrope walk for T1s and to stay within a good range for some of us is easier said than done. You will have to grow some thick skin and treat criticism like water off a ducks back.
 
Dear Fatima,
I guess your medical student friend still has a lot to learn, AND, most important, is not a full-trained endocrinologist (endo), ie a medical doctor who specialised in the care for people with diabetes, especially T1. Your frequent hypos may depend on your having a very high insulin sensitivity. This means that your body uses insulin 'too efficiently': more efficiently, in fact, than most people do. And this leads to frequent hypos. I dont't know if this is the case, but ask your doctor. Explain you are having a difficult time with all these hypos, and ask for his or her help. You might need a lower amount of insulin, and/or to make smaller correction doses.
I have had the same problem for many years and it surely makes T1 diabetes more difficult to manage. It took me a lot of time and effort and help from my endo to come to terms with my high insulin sensitivity, yet I still have more hypos than most T1 people happen to experience. And I was diagnosed 30 years ago… So, you see, it is really not your fault. I am sure you are not doing anything wrong. A big hug to you and best wishes.
 

By Jove, Spencer67, you wrote something really awesome: 'even getting family to understand type 1'… Please tell me, how did you do? I have had T1 for some 30 years now and only last month I discovered my family was persuaded I was T2 all the while, and doesn't care a bit about knowing the difference… I tried to explain, but to no avail. Actually, they are mostly still unable of (and uninterested in) telling T1 from a hole in the ground, and I am at my wits' end, really. What did you do to work your wonder? Master.
 
A couple of questions. When you say low, what does that mean? Does it mean that you are dropping to 3.5 to 4, or does it mean you are dropping below 3 and it is incapacitating you?

There's quite a big difference between the two, and it's not clear from your post @Fatima_94 which you are talking about.

Being frank, if it's the latter, and you are dropping below 3 daily or more than daily, then I think you probably need some help as you are heading into significant risk of losing hypo awareness (which you don't really want, as @catapillar will tell you).

You also haven't mentioned whether you've participated in the various training courses that are available to help T1s better manage their condition, getting various levels set correctly and understanding carb counting and ratios. If you haven't that's something else that may well make life easier for you.
 
Hi. You are going low fairly often so it's worth trying to understand why? I assume you are on Basal/Bolus regime? Are you confident that your Basal is reasonably balanced? I also assume you carb-count for your Bolus to adjust the insulin to the carbs in the meal? Do you keep the carbs you eat sensibly low as this also keeps BS swings lower? A few questions there but just checking.
 
I agree with @tim2000s. There's low where you know, check, and correct (or just correct). And there's gork out low when you need assistance. I get the former maybe daily. But I don't get the latter maybe a couple times a year now. It's happened 3 times in 7 years at work, not in the past 2. It's happened at night maybe yearly, but not since I quit drinking wine (poor judgement). If you get gorky low you could use some management adjustment IMO. At one time my motto was "food is my enemy and insulin is my friend". Not good advice.
 

Big whoop. A medical student. I would estimate she had maybe spent 60 minutes with type 1 patients, not treating their diabetes. That's it. It can be very helpful having friends who are doctors to get their views on things. It doesn't mean their view on things is correct. When I sought advice from a couple of my doctor friends on transplant risks (both are SpRs, so senior Junior Doctors, well beyond 4th year student) they both told me they didn't know enough about it. They have also both told me "I didn't know that" on several occasions when I've mentioned various things about the managing of my diabetes.

If a friend thinks threatening anger is a constructive way of offering support or caring they may need to rethink their approach.

However, I would warn you against, perhaps, incorrectly implying judgment in your friends' expressions of concern. It does sound to me like they might honestly just be worried about you. If they aren't expressing it very well, just bear in mind that worry can be a difficult thing to express.

You should also remember that it really isn't very nice to see someone have a hypo, it's upsetting/concerning/distressing. Much as people on this forum can say they don't know what it's like to have type 1, we don't really know what it's like for "them" to see their friend going so low they need help. You can't really know what you are like when you are hypo because your brain can't make memories when you are low, so you might not realise how distressing it might be for your friends to see you like that.

Fatima_94 said:
I go low a lot and sometimes it feels like they blame me for not controlling it well. ... (i go low once a day or once every 2 days)
Click to expand...

That is a lot.

How low is low? Do you mean under 4, under 3.5?

You are putting yourself at risk of losing hypo awareness. More than 3 hypos a week really puts your hypo awareness at risk.

No hypo awareness means no driving licence.

How are you controlling your diabetes and what are you doing to address the frequent lows? Have you done any analysis to see if the lows are related to your meal time boluses (ie are they happening within 4 hours of a bolus)? Is there any pattern to the timing of the low, do they happen during/following exercise or stress or your period? Have you basal tested to check you aren't taking too much basal?

Have you sought advice from your DSN on how to alter your management to avoid the lows?
 
@Fatima_94
i cannot give better support than given by @catapillar
she is so wise beyond her years -- has lived through it and blesses us with her continued support.

please read her replies with the goal of gaining much knowledge.

all the best !!!!!!
 


They hate seeing me go low and are often worried. I'm the same when low- especially sensitive hah, thank you for understanding, I especially liked what you said about one size not fitting all due to physiology!





a seesaw, rollercoaster and multi-factored head-spin would be a perfect way to describe it! thank you for the link and for the hugs <3 so kind





I can definitely relate to wanting to eat new and interesting foods! I'm often looking for the next new thing to try hehe. Thank you for the advice! I do agree





yess that's exactly how it feels! I also found this with my previous GP too (luckily I've moved GPs and no longer have this issue) I guess it goes to show that not all doctors are fully aware.





I hadn't thought of this! but I definitely think I may have this. Will certainly be discussing it with my doctor, thank you for this and for the support
 


usually around 3.6-3.9, I've tried to get onto the course that helps with carbohydrate counting (even though I do usually do this regardless I'm sure I'd still benefit from it) but have been fobbed off by my previous GP many times. However, I will be asking to be referred to the course when I see my doctor next




This is a difficult one for me to answer because, well.. I used to have my long-acting insulin figured out perfectly. But around a year ago, things started changing. My body started reacting very differently to the long-acting insulin in the mornings depending on how much I ate during the day (this system has carried on since then) so if i've only eaten low-carb meals or eaten lightly during the day I wake up dangerously low in the mornings. Or if I've eaten a normal amount during the day and only put 17 long-acting, I go very high in the mornings. If I've eaten a moderate amount during the day I put 23, if I've eaten quite a lot then 27 (otherwise my sugars go sky-high in the morning). I may create a new thread for this as it still boggles me why my body changed like this when for years before, I had a pretty stable dose every day and what I ate never seemed to affect how much I should put for the long-acting insulin. My dose only used to change when I either put on or lost a significant amount of weight, so now that it is changing on a daily basis it's quite haphazard.




Refreshing to hear your experiences with your friends who are doctors.


You're right, my friends are definitely only doing it out of love and concern and I guess I should have been a less hot-headed when writing this post as I've painted a bad picture. Thank you for your honesty.


3.6-3.9, the thing I could say is that the frequency definitely increases with stress, but other than that I haven't noticed any particular pattern. It is usually around 2 hours after injecting insulin (and also sometimes in the mornings).



himtoo said:
@Fatima_94

i cannot give better support than given by @catapillar

she is so wise beyond her years -- has lived through it and blesses us with her continued support.

all the best !!!!!!
Click to expand...


thank you!
 
Hi @Fatima_94 - thanks for your answers.

When your basal insulin starts to go out of kilter, it's usually a good idea to have a go at redressing this. The best way to do it is via basal test, as described here: https://mysugr.com/basal-rate-testing/ This really does help to get everything back on track.

If your GP/Clinic is not helpful in getting you on a DAFNE course, keep at it. They are supposed to support you in doing that. In the meantime (and if someone fobs you off, remind them that an offer of structured education is part of the NICE guideline for Type 1 Diabetes), take a look at http://www.bertieonline.org.uk which gives you very similar information as a web course. It should walk you through everything you need to know.

Fatima_94 said:
I may create a new thread for this as it still boggles me why my body changed like this when for years before, I had a pretty stable dose every day and what I ate never seemed to affect how much I should put for the long-acting insulin.
Click to expand...
This relates to all sorts of things. The biggest one being that if your basal gets out of line, then all the ratios you used to use tend to go out of the window and while you don't realise it, you're compensating for one insulin with the other type. That's why the earlier testing and course I mentioned should help you.

Good luck!
 
@Fatima_94 what basal are you using? Levemir is flexible enough to deal with dose changes day by day. But most other basals need 2-3 days for dose changes to settle in, so they aren't very flexible. If you are having to change your basal dose based upon what you are eating that does suggest you don't understand how to use your basal. The job of your basal is to keep you flat-ish when you aren't eating or bolusing, it isn't to deal with food.

If you are going low 2 hours after a bolus dose on a daily basis that suggests you are taking too much insulin for the meal. Your insulin to carb ratio may be too high, or you may be eating meals where the carbs are released too slowly.

If you are waking up low, and the low itself hasn't woken you up, that does raise concerns about hypo awareness as you could have been hypo all night long, meaning your body gets used to being low and won't give you hypo warning symptoms. Nocturnal hypos are the priority to be be avoided in diabetic management - they are the things that can kill you immediately. If that means you wake up a bit higher while you are figuring out your basal dose, that's fine because that won't kill you.

Structured education for type 1 diabetics isn't a choice for your doctor. It isn't a case that your doctor can choose not to refer you to the course. All type 1s should be offered courses according to the NICE guidelines. If you aren't being offered a course by your GP then your GP doesn't understand how to manage type 1s and you should seek a referral to a hospital diabetic clinic, who will put you on the course. To be honest you could probably do with a bit more input from a hospital clinic if you are having 1-2 hypos a day.
 
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