at last! someone like me??!

[stilltrying]

but why have you got those results now when it was OK last week? and I suppose I question what good is all the testing (not you, but me) when it goes wrong again so quickly. I currently live on the most massive range of results daily which I just don't seem to be able to control. You had an SD of around 1.9 only a few weeks ago

sorry this sounds very discouraging, its not meant to be, only to try to understand how to get such good control....

Hi. Was wondering if i've at last found someone who, like me can be 22 or worse then an hour later 2 or worse (on a daily basis) - and who has tried everything for the last 13 yrs to get more stable readings, bar 100% focus on my blood sugar 24hrs a day (who can do that or wants to do that!) I have a no. of other medical conditions that i'm continually juggling too, as well the usual things we all need to do everyday, which i guess doesnt help. I've avoided joining any groups like this so far because i've found it so discouraging & depressing reading even the stories in Balance about so-called 'normal' Type 1 diabetics - who "occasionally get a reading above 10" or who "had a hypo a few months ago". But i'm now in such a bad state of depression etc that i thought it may help to join a group. And guess what - the first post i read was from someone who is upset (??) about readings i'd be absolutely THRILLED with!!! (still spiking, grrr!) And the second was a reply from someone whose HbA1c is 5.8!!!! I did have a short period of results of 7.5 - 8 (when i was very ill with M.E. funnily enough) But for the last 5 years or so i've not managed to get below 8 (my last was 8.4). This all makes me worry a lot about the complications that are coming - so far only some neuropathy and some mild retinopathy. Luckily i then read your post - not that i would wish this on anyone else, but is there ANYONE out there at all who is REALLY a daily 'spiker' and who actually DOES have SEVERE problems with their blood sugar control CONSTANTLY. Maybe its u, but if it isnt then is there anyone else???? Sorry "still spiking, grrr!" and "HbA1c 5.8" - really dont mean to sound snotty, and well done on such fantastic control - i know this doesnt come effortlessly for anyone, but maybe you should pat yourself on the back a bit more "still spiking, grrr!" and not worry quite as much. And by the way i have a fantastic consultant, its not his fault - he's been trying to get me a Dafne place for the last 3 years and cannot refer me for a pump until after that. Thanks for listening + any help would be v.gratefully received x

 

[margie]

Welcome to the forum, I hope you don't mind that I have split your post into its own thread.

I can hear your frustration and you've clearly had a hard time.

You say you have had a long wait for Daphne, does that mean that you have not had any information on Carb counting. If you haven't then there is an online course (free) which may help.
http://www.bdec-e-learning.com/

If they haven't already suggested it then ask your team about a CGM - it can sometimes give them clues as to where your meds may need changing.

There is an organisation called Input (I think) have a search of the forums - who have helped quite a few people on this forum to get a pump.

There are a few people who have large swings in their blood sugars and I hope one of them will come along and post.

 

[smile4loubie]

shiv - a member of this forum might be able to help as i think shes whats known as an input expert regarding a pump x

 

[Ellie Jones]

Sadly you won't be the only diabetic suffering these types of control issues... Sometimes there is a underlying cause to the problems...

Such as gastroparesis (sp) where the stomach doesn't empyt probably causing all sorts of mayhem with control..

There's addisons which can have similar symptoms..

Then you get the not getting on with Human Insulins which this can be one of the symptons, as well as suffering symptons similar to ME! A change back to the older animals insulins can for some make a world of difference if it's the case of a reaction to human insulins...

Concerning pump therapy, I would ask your consultant where in the guide lines does it say 'patient must have attended DAFNE (or another carb counting training course)' His/her answear should be pretty interesting, as it doesn't mention a need to attend any carb counting cause!

You can start pump therapy and learn carb counting at the same time, but it does make the learning curve of pump therapy and fine tuning a lot easier if you are already carb counting etc...

Which you can actually teach yourself, Bournmouth diabetic clinic actually do an on line course, then DAFNE itself now has its own forum that you could join..

Two books (don't need to buy both) Using Insulin by John Walsh and Think Like A Pancreas by Gary (not sure of the surname) will give you information, how do's etc for effectively using MDI regieme..

And there's us lot on here, all full of good information, help and tips which work for us that you may find usefull, just fire a question, and remember no question if every silly if you don't know the answer

 

[AJLang]

Hi I have gastroparesis and whatever I do the sugars are very erratic. They can bounce around between 2.2 to 29.2 and that is with me sometimes injecting up to 8 times a day and doing about 10 finger prick blood tests a day. I have to do my best to eat very small meals but that can cause low sugars. If I have a "normal" meal it can mean that I have to inject two or three times during the night e.g. last night was a "small" meal - went to bed 9.8, 12.30am BG was 12.6 so 3 units of Humalog - 6.30 am still 12.4 so the humalog had not had any effect on my BG and for me this was a GOOD night even though I'm still feeling nauseous this morning . Another night it can be 29.2 and 12 units of humalog will only bring it down to 12.3 whilst another morning I'm dealing with hypos at 3am. There is nothing else that I can do about it as there is no pattern as to when my food will empty into my stomach and this varies on an day by day (and sometimes hour by hour basis). I have to inject after meals and take 98 tablets a week just for the gastroparesis. Like you I also have other conditions including poor eyesight in one eye due to a retinal vein occlusion causing a persistent macula odema and glaucoma which is proving extremely difficult to control (Next week I will be having my fourth lot of surgery in six months). I'm not saying all of this to feel sorry for myself but to highlight that yes there are a lot of people with different problems in relation to diabetes. It's not easy but it's also about making the most of life whenver you can (which may not be as often as you would like). I try to have as normal a life as possible including a very rewarding job (albeit part-time), slowly working through an OU course and walking my dog (even though the tiredness caused by my latest eye medication means that I have to sit down half way through the walk🙄). The people on this site as extremely supportive and have helped me to get through sometime very difficult whatever the challenges with diabetes. I'm sure that they will be able to help you as well. Welcome to the site!

 

[Northerner]

...Sorry "still spiking, grrr!" and "HbA1c 5.8" - really dont mean to sound snotty, and well done on such fantastic control - i know this doesnt come effortlessly for anyone, but maybe you should pat yourself on the back a bit more "still spiking, grrr!" and not worry quite as much. And by the way i have a fantastic consultant, its not his fault - he's been trying to get me a Dafne place for the last 3 years and cannot refer me for a pump until after that. Thanks for listening + any help would be v.gratefully received x

Hi stilltrying, welcome to the forum 🙂 You don't sound snotty at all, I'm very aware that I have things very easy compared to most people and I'm often loathe to write about my own little niggles when there are many people who would be very happy to have them instead of having to deal with huge unpredictable swings.

As I have said, we do have a lot of people here who can share your experience and have either found ways to improve their situation or are gradually learning from others experiences how they might be able to. It's terrible that you have had to wait so long to get a DAFNE place, given your problems. What insulin regime are you on, and what sort of fasting levels do you get? If you can tell us more about yourself then hopefully there will be people here who will be able to make suggestions based on their own experiences. Please ask any questions you may have - I can assure you we are not all 'perfect' diabetics! 🙂 I look forward to hearing more from you.

 

[Pumper_Sue]

And by the way i have a fantastic consultant, its not his fault - he's been trying to get me a Dafne place for the last 3 years and cannot refer me for a pump until after that. Thanks for listening + any help would be v.gratefully received x

Hiya and welcome to the forum,
I used to swing like that on certain insulin's it was due to an allergy against them.

But back to the pump.
There is no where in the NICE guidelines that say you must have been on a carb counting course.
If you can carb count and demonstrate that you can do so, then there is no reason not to have a pump.
As to waiting 3 years to go on DAFNE that is 😱 I would say you consultant isn't trying hard enough to find other options IE, 1 - 1 with a dietition.

 

[bex123]

Hi. Was wondering if i've at last found someone who, like me can be 22 or worse then an hour later 2 or worse (on a daily basis) - and who has tried everything for the last 13 yrs to get more stable readings, bar 100% focus on my blood sugar 24hrs a day (who can do that or wants to do that!) I have a no. of other medical conditions that i'm continually juggling too, as well the usual things we all need to do everyday, which i guess doesnt help. I've avoided joining any groups like this so far because i've found it so discouraging & depressing reading even the stories in Balance about so-called 'normal' Type 1 diabetics - who "occasionally get a reading above 10" or who "had a hypo a few months ago". But i'm now in such a bad state of depression etc that i thought it may help to join a group. And guess what - the first post i read was from someone who is upset (??) about readings i'd be absolutely THRILLED with!!! (still spiking, grrr!) And the second was a reply from someone whose HbA1c is 5.8!!!! I did have a short period of results of 7.5 - 8 (when i was very ill with M.E. funnily enough) But for the last 5 years or so i've not managed to get below 8 (my last was 8.4). This all makes me worry a lot about the complications that are coming - so far only some neuropathy and some mild retinopathy. Luckily i then read your post - not that i would wish this on anyone else, but is there ANYONE out there at all who is REALLY a daily 'spiker' and who actually DOES have SEVERE problems with their blood sugar control CONSTANTLY. Maybe its u, but if it isnt then is there anyone else???? Sorry "still spiking, grrr!" and "HbA1c 5.8" - really dont mean to sound snotty, and well done on such fantastic control - i know this doesnt come effortlessly for anyone, but maybe you should pat yourself on the back a bit more "still spiking, grrr!" and not worry quite as much. And by the way i have a fantastic consultant, its not his fault - he's been trying to get me a Dafne place for the last 3 years and cannot refer me for a pump until after that. Thanks for listening + any help would be v.gratefully received x

hi , i dont usually post here any more , people know why... but i just wanted to say hi , i also have M.E/CFS and horrendus spikes and lows very quickley i am on the pump and it has helped but i still struggle to control it.... just wanted to *wave* at a fellow M.E and diabeties sufferer *waves*

 

[Liz!]

Hello! I swing too, and have all my life, but I am MUCH beter since ging on to animal insulin (some people go up and down with 'human' or analogue insulins as teir action is too quick for their bodies. You have to get used to going your injections half an hour before meals (and so eating roughly the same amount every time) but it does help, and also it cleared up several other things I had - overwhelming tiredneess, feeling of unreality sometimes, pains in my muscles and joints, Dupuytren's contracture - all gone within weeks of using it.

And then I have the pump, which also helps. I had a terrible hypo in 2009 October, where i was out for 2 hours, and i now realise that scared me to the point I was scared to be low, and have been rnning way too high and swinging much more than normal lately, so I am currently getting things better. Funnily enough, like you, if I do not much my levels improve - I have been ill for 8 days and my control has ben brilliant!

I also count carbs and that helps.

 

[novorapidboi26]

Welcome to the forum stilltrying, I was also were you are now but fortunately got the education that put me in the best position to investigate my control and understand almost completely..........there are days that just cant be explained but thats the pain we all have to live with........

Really push for the DAFNE course, I know your consultant is on the case so I don't know what else you can do............I managed to get on one that wasn't actually at my clinic, it was a good drive away, you could maybe look into that...

Make yourself at home and let of some steam, ask questions......

 

[everydayupsanddowns]

Hi Stilltrying

Welcome to the forum.

Sorry to hear how hard D it hitting on you at the moment. It can feel relentless, unfair and utterly illogical at times.

I know that many here will share your frustrations with uncontrollable swings on the gluco-coaster, and it's clear that no two people's diabetes are the same. Some just have a tougher time of it.

But take heart. You are here. You are concerned for your current and future health. You clearly want to improve your control within some semblance of a 'normal' life (whatever that means).

By swapping notes with other diabetics for the first time after almost 20 years I've learned a huge amount in the last 12 months or so.

If you can spot one specific issue to tackle at a time (eg what level you wake up at, what happens after you eat breakfast, getting your lunchtime dose working properly. whatever...) it might make it feel easier to make some progress. Trying to do everything at once is just too overwhelming.

Hope to see you around asking questions and offering your own valuable insights over the coming months.

M

 

[chrismbee]

Hi stilltrying and welcome from me too 🙂

It can be daunting to read of others' "struggles" with control that you wish you could only get close to. I found myself, in the past, frustrated at reading about "spikes up to 10", when I am regularly in the teens 1 hr after a meal, even if I did have a fantastic BG of 5, before.
However, I came to realise that we are all different, not to mention the totally different reactions across the different diabetes types and other medical factors. The power of this forum is that it has such a wide cross-section of members some of whom, as you have already seen, may have similar experiences to yourself.
Every success or struggle deserves to be heard, however it relates to our own circumstances. I'm sure that nobody intends to upset others by broadcasting their own issues with diabetes, nor should we ever discourage them from doing so.
The important thing is that you are not alone - by joining this forum, you have access to a great bunch of friendly and supportive people who genuinely would like to help in any way they can.
Good luck with making sense of it all.
Cheers, Chris.

 

[AlisonM]

Hi Stilltrying,

Sounds like you're where I've been. I also have a number of competing medical conditions and have been having enormous fun trying to control my Diabetes while not making the other problems worse. For a while there I was veering between the high teens/low twenties and the low threes. As a result of some constructive whinging and ear bending I now have all my consultants getting together sometime next month to look at drug interactions and possible treatments that will minimise these while giving me some decent quality of life. Of course, I'm not quite a Type 1 which adds another dimension to the problem.

I know first hand how disheartening it can get trying to cope with it all and I can understand how reading other people's battles can also bring you down. But this place is far more than that. There are folk here from the whole spectrum of diabetics and their carers, there's folk with all kinds of other issues to deal with as well and the one thing they can count on in here is endless support and encouragement. I couldn't cope without this place. You are not alone.

 

[shiv]

Hi,

As others have said, going on DAFNE is NOT a requirement to go on a pump. It is 100% necessary for you to be able to carb count and adjust insulin, as that is how pumps function - but DAFNE is not the only way to learn to carb count. Ask to be referred to the dietitian on your team. 3 years is a shocking wait, and totally unnecessary - sounds like he might be 'putting off' getting you on a pump to be perfectly honest (but can only say that from what I'm hearing - I obviously don't know him). Or maybe he just doesn't know that DAFNE isn't a requirement - who knows!

 

[Liz!]

how about learning and then telling him you know, so don't need Dafne?

 

[heasandford]

I hope you take heart from this support stiilltrying, I am the cause of your initial post and yes, still getting massive differences in results over a day. But there are lots of ideas where to start things here, and questions to ask your team. I thought I knew what to ask before I came on here, and thought I couln't do anything about some things but now I'm prepared to try some things again. Get pushing for that DAFNE course again and a pump - you can do it with support!

 

[Steff]

How do a warm welcome to the forum

 

[stilltrying]

thank u all...i feel better already!

Hi and thank u (very much!) to everyone who replied to my post. I feel much better already...so much understanding & support and so much useful info too. Its a lot to digest and it'll take me a few days to read thru all the advice & reply properly to everyone. But i feel now that there are maybe things i can do after all...and if not then at least there are people who understand. Speak 2u again soon xx
PS A few of u asked what insulin, medication i'm on + suggested a few medical conditions i may have etc - just for the record, i'm a Type 1 on Lantus glargine (17 units at present) and Humalog (40-60 units daily, before meals + extra doses as necessary most days). I test 6+ times on a normal day, more as necessary. I had severe M.E. for 7+ years but am now recovering (still on amitrytiline for this as chronic sleep problems + mad body clock). I also have asthma (much worse last few years + on high level of inhaled steroids which have affected my cortisol levels). I've also got a no. of other 'less serious' medical conditions etc which add to the load as it were + have been pushing me over my coping limits recently - "severe" acid indigestion (omeprasole 40mg daily but ?do i have gastroparesis too); sinusitis/rhinitis/hayfever (which make asthma worse; daily sinus washing + was put on steroid nasal spray for a year tho now on kinder one); chronic back problems + v.painful periods with vomiting + menopausal problems (tramadol, cyclizine etc for these); IBS; rosacea (bit of a pain + antibiotic gel 2 or 3 times a day); mild hypothyroid (thyroxine 25mcg); have surgery coming to remove ovaries,womb etc because i have a strong family history of breast/ovarian cancer (tho not BRCA positive thank goodness)...phew!! Sorry if this has bored anyone but maybe it'll help shed some light on what's going on with my diabetes?? And re Dafne delays - think its because my consultant is not in my area anymore (i'm now in wales) + there were problems with my last GP re refering me/with funding + i've moved around quite a bit. But will investigate carb counting in the meantime - thanks for the tip.
Bye 4 now

 

[everydayupsanddowns]

Hi Stilltrying

good to see you again.

If you've not been introduced to it before, carb counting is absolutely the best place to start. MDI/pumping is all but impossible without it.

The next 'biggie' is basal testing. Systematically looking at the action of your Lantus through the day without meal boluses clouding the issue to check that the level (and profile of the insulin) are working well for your system.

 

[stilltrying]

thanks everyone 4 all the info - have lots of questions now!

Hi again - to everyone thats taken the time to give me encouragement & info re dealing with my blood sugar swings. Thank u all so much again - cant tell u how much difference this has made + i'm realising now how in the dark i've been. Its taken me a few days to sift thru all this new info + i have loads of questions now - if anyone is able to answer any of them that'd be great. (Info re my insulin regime + other meds/illnesses in last post - wont bore u again with all these!!) :-

. It does seem that carb counting is the best place to start - thanks for the tip and for all the info on how to learn this w/o Dafne - its been one of my biggest bugbears, how to get the right insulin dose for different meals so sure this will help. Thanks for all the input re Dafne/pump requirements too - if u'll excuse the pun! Will check out the pump info sources uv suggested too.

. I was also wondering what MDI is - is it adjusting insulin doses?? Also sounds v.useful place to start if it is.

. How do i do basal testing too - think my blood sugars would be in the 30's if i ate normally w/o humalog - is that what u have to do?? Havent ever had a fasting level done by the way - b/c so often hypo in the mornings + until now i've lived on my own (noone to drive me in for test if levels going down).

. I was also wondering about animal insulin - a few people mentioned how human/analogue insulins can cause BS swings + M.E-like symptoms too. Pretty sure i did have M.E. - it was very severe + i'm still nowhere near 100% tho i am much better. But definitely something to investigate. (Hi bex123 by the way - understand that u wont have the energy to reply but just wanted to wave back to u xx)

. Dont think i have Addisons as my consultant has i think checked for this. We talked about it at my last appt but dont really understand - except that all the steroids i've had to take have depressed my cortisol levels (details in my last post so wont repeat). A few people mentioned interactions between medications too + consultants meetings re same - is this what a CGM is?

. But was wondering if i have gastroparesis. Thank u too ajlang for taking the time to give me some support despite all your own problems by the way + all the best for your eye surgery next week. I guess u wont have time to go thru this with me right now but is there a good website i could get some more info from. I do have long-standing acid indigestion which has become very severe the last few years + i've also had nausea/vomiting the last 6 years but this has usually been associated with my periods.

Thanks everyone anyway! Hope i can help u back at some point - u never know, i may learn a few things now! xx