First glastonbury post diagnosis

Lolly985

Member
Messages
6
Type of diabetes
Type 1
Treatment type
Insulin
Hi everyone,

I've been reading the forum for ages but have never posted! To introduce myself, I'm 30 years old and was diagnosed as T1 about a year ago which I understand is quite late in life for a t1. I muddle along, last hba1c was 6.7. I'm on 20units levemir at night (interested to see a lot of you seem to split your dose) and novorapid with meals. I was initially told to inject a set amount with meals (was later told this is terrible advice!) but I was feeling lousy, levels were all over the place so after a bit of googling and trial and error i now carb count and have worked out that 1 unit per about 15g seems to work for me. I'm waiting to go on dafne though to make sure I'm doing this correctly! Sorry to babble on but I hope that gives enough information.

To come to my current issue. This year il be going to my first glastonbury since the diabetes diagnosis. I don't want my diabetes to stop me having a great time but equally I know I should probably take a few steps to stay healthy.

Basically I don't want to be hypo-ing OR going into dka in the middle of a field! My general plan was to err on the side of running my levels a bit high while I'm there. But how high is too high? Should I reduce my levemir or take less novorapid with my meals? I'll be with a good group of people who are aware im diabetic (one of them has a diabetic sister so is very clued up) - but I dont really talk about my condition a lot and I definitely don't want to get into a situation where I need looking after! In all likelihood il be drinking a lot, it's probably going to be hot, walking more than usual, plus the element of sods law - it's like the perfect storm for a hypo!

Would love to hear from anyone who has any advice, or experience of attending festivals with diabetes! Also can I just say how much iv learned from reading this forum. Il try to contribute more now that iv made my introductions!
 

Spiker

Well-Known Member
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4,685
Type of diabetes
Type 1
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I think you should discuss your concerns and plans with your friends ahead of time so they are aware and able to support you. This will prevent difficulties and mistakes or misunderstandings on the day. Doing education now when things are calm is much better than trying to educate in a crisis when all of you may be off par.

If you are going to be active or do anything that raises your metabolism then lower your Levemir and your bolus ratios slightly, maybe by one third to be safe, depending how hard you will be going at it. There is no reason not to have enough hypo supplies with you to last the whole time. Be aware that you might miss hypo symptoms in the intense environment. Train friends to help recognise symptoms and train yourself to do what they say without arguing during the festival. It is not worth the risk of becoming a casualty. This will ruin the festival not just for you but for everyone you are with.

No need to comment on whether you will take any drugs but if you do, be even more cautious to reduce your insulin, maybe as much as half. Set alarms to test every 4 to 6 hours and definitely at bed time. Remind friends this is important. Alcohol in excess can be the worst drug for a T1 in my opinion so be conscious of the effects and avoid excess if possible. The effects of club drugs are simpler to deal with but still not ideal. Hypo symptoms can be missed and stimulants (almost all are stimulants) can cause unexpected lows longer term and highs short term especially if dancing heavily. Be very cautious in correcting highs particularly at bedtime if you have been up late dancing. Even a spliff can play with your blood sugar in unexpected ways and mask hypo symptoms. I would not use any drug at a festival that you are not experienced using since you became diabetic. Obviously that means don't take anything you are not 100% sure of. In practice that means only things brought by you or a friend. Do not partake of anything bought on site.

Apologies if your festival experience is drug free. Again no need to answer yes or no.

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hels

Well-Known Member
Messages
311
Type of diabetes
Type 1
Treatment type
Insulin
Some good advice from Spiker. Make sure you wear a clearly visible medical alert wristband as a hypo could easily be presumed to be due to too much indulgence. And test regularly. You'll probably be on a different time zone to usual so maybe set alarms to remind you to test, inject, eat.

And have fun!


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Lolly985

Member
Messages
6
Type of diabetes
Type 1
Treatment type
Insulin
Hi Spiker,

Thank you so much for your post - it's really helpful. I find it really difficult to talk to my friends about my diabetes but your advice to bring it up before we go is sound as I don't want to have to be explaining things mid hypo. The last thing I want is to ruin things for everyone by not taking proper care of myself.
I generally have very good hypo awareness but at a gig recently in the midst of all the excitement, dancing etc I didn't realise I was going low until I was further gone than I would usually allow. If my friend who I was with hadn't looked at me and told me "lolly you're looking a bit....weird", I'm not sure when I would have caught it!
I think it's something about the loud music, it seems to mask that shaky feeling for me!

Il definitely make sure I have hypo treatments with me at all times. Thanks also for the advice about reducing insulin - I knew I'd have to reduce something but couldn't work out which one.

It's so frustrating having something to think about all the time. Generally I take it in my stride and I'm really proud of how i manage things day to day - it's just these out of the ordinary situations where I'm not 100% confident, particularly where I could ruin other people's enjoyment if I'm taken ill

Thanks again I really appreciate it
 
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Spiker

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Yeah we often manage normal times well, but it can be the special times that are tricky. A little preparation and communication goes a long way. Wishing you a great and safe time. :)

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hels

Well-Known Member
Messages
311
Type of diabetes
Type 1
Treatment type
Insulin
Another thought....take spares of everything - testing kit, insulin, needles and maybe leave them with the Campsite crew that are in each field.

If it's a sunny year it can get really hot in the tent so I'd take a Frio wallet to keep your insulin cool.


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Lolly985

Member
Messages
6
Type of diabetes
Type 1
Treatment type
Insulin
Hi again, just a quick question about frio wallets. I don't have one and am just about to buy one but I just wondered - is it literally just a pouch or are there little...I don't know how to put it...compartments I guess...inside it? Not that it really matters I guess - I'm just one of those people who likes everything to be neatly organised! I also have a few other meds for other conditions that need to be kept cool and wondered if everything was going to be rattling around in there and getting all mixed up.
Would it make sense to keep my glucagon injection in the frio or would this be too cold for it?
 

phil55494

Active Member
Messages
38
Type of diabetes
Type 1
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Pump
Hi,
It is probably a good idea to know where the medical and welfare tents are around the site.
I have used both as a place I can sit down and test and sort out insulin (changing cartridges etc). They're out of the weather (both wet and muddy as well dry and sunny) and slightly away from the hectic bustle of festival life so can be a good calm space to sort yourself out when needed. If you explain what you need to do there is normally no problem at all.
I also agree with the letting the group of mates you're with know about it and what to look for be it hypo or hyper.

Most of all don't let it get you down and enjoy yourself

Phil

(Bearded Theory & Beautiful Days festivals this year)
 

SamJB

Well-Known Member
Messages
1,857
Type of diabetes
Type 1
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Excellent advice from Spiker, I concur with everything he has said!

Personally, I would run my levels high and always carry some dextro tablets (or whatever you use for hypo treatment). I'd personally aim for the 10-12 range. For things like this, it's not possible to know how soon you can get to a source of glucose if you were to have an emergency. Being high for a couple of days won't do you any harm.
 

Spiker

Well-Known Member
Messages
4,685
Type of diabetes
Type 1
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Hi again, just a quick question about frio wallets. I don't have one and am just about to buy one but I just wondered - is it literally just a pouch or are there little...I don't know how to put it...compartments I guess...inside it? Not that it really matters I guess - I'm just one of those people who likes everything to be neatly organised! I also have a few other meds for other conditions that need to be kept cool and wondered if everything was going to be rattling around in there and getting all mixed up.
Would it make sense to keep my glucagon injection in the frio or would this be too cold for it?
Have you ever done a glucagon injection on yourself while having a hypo? Have you ever gotten a friend to do one on you in the middle of a muddy field while they are freaking out and probably at least partly intoxicated?

Do you see where I'm going with this?

Unless you have a second compartment containing a trained paramedic, I wouldn't bother with the glucagon kit. Take carbs and hypostop.

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Lolly985

Member
Messages
6
Type of diabetes
Type 1
Treatment type
Insulin
That's a really good point! This is all still really new to me so what's obvious to most isn't always to me! Looks like hypostop is the best option.

Il report back after the festival and let you know how I get on!
 

iHs

Well-Known Member
Messages
4,595
Lolly, Hypostop also known as Glucogel is available in small tubes which is handy for the pocket but for third party help, the bottle with the long thin twist up nozzle is what you want as the nozzle can just be inserted into the mouth where the lips are and gum line and very small amounts massaged so that the gel gets absorbed through the buccal lining. Takes about 10mins anc then small amounts of lucozade will do the rest.

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Lolly985

Member
Messages
6
Type of diabetes
Type 1
Treatment type
Insulin
Hi everyone,

Just thought id give you all an update! I had the time of my life!

I found I had to cut my basal and bolus quite a lot because of all the walking and DANCING! It really was an amazing time and it confirmed in my mind that there really isn't anything I can't do just because I'm diabetic. It took more logistical planning than it would for the average person but it was so worth it! It really increased my confidence.

The food was incredible too! One lady at one of the food stalls overheard me mentioning to a friend that I was trying to work out the carb count for my meal -

"are you diabetic? so am I! what you've got on your plate is 23g carbs"

It was such a surprise to find someone in the middle of a (very) muddy field who understood!

I had a couple of mild lows and one definitely-not-mild 1.6-er - yuck. But they didn't ruin things for me and I can't wait to go next year!

Thank you all for your advice and support
 
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dawnmc

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2,431
Type of diabetes
Type 2
Treatment type
Non-insulin injectable medication (incretin mimetics)
Glad you had a good time. And you looked after yourself.