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I'm struggling.

justlauren

justlauren

Newbie
Messages
4
Location
Bristol, United Kingdom
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
stress
Hey guys,

I have had diabetes since I was 7. So its coming up 20 years now. I have had a bit of a tough time with it. Let me tell you about it. When I left home at 18 to go off to uni my life and control of diabetes went straight out the window. I was in and out of hospital pretty much once a month with DKAs, This lead to me being in an intensive care unit with a 40% chance of survival.... not what my mom needed. I met my ex boyfriend at 22 and things got a lot better. It helped that he was type 1 as well. - pure chance i assure you. Anyway since 22 I have been in hospital twice, which I know is a marked improvement. However I get so stressed out about my control.
I am trying to gain some control and I can go for weeks of checking my blood and making sure its on track... then out of nowhere that motivation disappears as does the checking of blood. Although at least now I inject myself regularly. - I do have the occasional missed injection - but that's very occasional.
I have recently moved to Bristol, from Scotland and I am trying to get my life, my head and my diabetes on track as I am so stressed out I have done serious damage to my body and will loose my sight or my feet in a few years!
I spoke to a diabetic nurse who has helped me get into carb counting classes, I am looking into joining up with the diabetes bristol support groups. So I do know I am trying.... its just so difficult to stay positive. I feel so upset and am welling up just typing this. I am not looking for sympathy here, I am looking for help... and even then I dont know what help I am looking for.
When I talk to people about my diabetes i either end up depressed, stressed or lying that im doing ok. (although i dont lie to health care people).
It just feels like I have a huge black shadow behind me all the time and I want to change this and do right for me! and my family who have had to put up with a lot.
Has anyone else struggled like this? is there light at the end of this very long dark tunnel?

I used to see a diabetic psychologist when I was living in Scotland, but the waiting list here is huge!

My diet is poor but I just cant say no to sweets, although I tell myself "not today Lauren"... I find myself eating them and then feel guilty after.

Has anyone out there gone through this madness... cause thats what it feels like.... I am going mad.

Please share.
 
Hi Lauren, just read your post and feel like I ought to write something but just not sure what ! I'm usually full of advice but I'm not sure that's what you need ! I think you know what to do ! I hope you find your motivation from somewhere, someone to talk with or something. In the meantime, just wanted to say take care !
Mo
 
Hi Lauren.

I'm about your age, but have only been diabetic about 16 years and yes it has been a struggle. It has taken me years to accept the condition fully. My late teens / early 20s were the worst time with very erratic control, although fortunately I have never ended up with DKA.

I think a lot of people feel overwhelmed as we simple can't take a break from being diabetic.

At times I've just wanted to hide under the covers and give up but managed to pick myself up and continue.

I definitely relate to the "tomorrow I will be good and avoid all bad food" and the eating it and then feeling guilty and low.

I found that learning to count carbs was very helpful (I only learnt to do this after about 13years of diabetes!) and I also decided to get a pump to see if this would help. It did help to control my sugars but didn't solve the whole problem. I still found my sugars would swing between high and low (although there were some improvements compared to MDI) causing me to be irritable and extremely tired. I also found I binged a lot - especially on sweet food and chocolate.

I decided to try low carbing after reading Dr Bernstein's book and looking on here. I thought that I would try it, but if it wasn't for me then I could go back to eating carbs. Well, over a year later and I am still low carbing and feeling good about it. My hba1c has dropped to the 5s (before it was between 7-8 ) and everything else seems to be fine too. Best of all not swinging between high and low has made me a much more stable, less grumpy person. I feel more positive about living with diabetes and I don't binge anymore.

Feel free to PM if you have any questions / want a chat.

I hope you're feeling more positive and find your motivation soon!





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Reading this I could have written it myself, I am a similar age, and did the multiple DKA episodes, long periods without testing etc. and had a very nasty DKA where I really scared my parents and I still feel tremendously guilty about that. I would be really good and try really hard for a while then just stop again. I have tried to make longer lasting changes, instead of suddenly being good and testing loads and recording for a short period I have gradually increased the amount of testing I do, and feel like changes are now more sustainable and longer lasting and sustainable. My main problem now is that I have never been able to get good control even when trying hard so I would get disheartened and then that put me off, and hearing people who have such tight ranges etc on groups just made me feel worse. I can do everything by the book but not get anywhere near what I would like to see and then I would just blame myself and I think the biggest change now is me starting to acknowledge that I am doing it 'right' and maybe everyone is different and my diabetes is not as easy to predict as perhaps some peoples. I think I blamed myself too much for not getting the results I expected/wanted from following books like pumping insulin. I am looking at getting a cgm soon and though control is still not great I feel like I am getting there in a more positive way now. So I think I'm trying to say never give up!
 
Hi Lauren, I don't think you are alone in this at all. There are lots of cases where people who have been diabetic for many years suddenly hit a brick wall, go into denial, lose confidence in everything diabetes-related, feel awful, stop testing because you are afraid of how high you are, start eating all the wrong foods etc etc etc. Been there, done that, got some help. I too see a team in Bristol (who are fantastic), and I was referred to a psychologist as an urgent case - I was seen within a couple of weeks I think. It turned my life around but more importantly my sudden inability to look after my diabetes (which I'd had nearly 30 years at the time) didn't surprise my consultant at all. I had loads of support and know where to go if I see myself heading that way again. Which clinic do you go to?

Best of luck!
 
Hi Lauren,
I have had Type 1 for about 13 years and am struggling at the moment too. I have not had the horrendous highs/lows that you have experienced but it does sometimes just get too much. Sometimes all you want is just to have a break from it, eat what you want and when you want, just for a week or even a day! I only started carb counting about 18 months ago and altho HbA1C is lower, it is still not as low as they (who must be obeyed) want it to be. If only it was that easy... :-( I don't have any constructive advice for you (sorry) but there are plenty of us who sympathise with you. Keep persevering and wishing you good luck. Hope you find something that helps/inspires you. EJ
 
Thank you so much for your response. All I ever get from the Drs and Nurses is "yes its hard" ... I find this somewhat patronizing and not very helpful too. I am not in denial with it. I have diabetes. I know I do. I am trying... its keeping the motivation that is difficult for me... Ill be great then it goes. /i just wanted to know that there are others out there in my situation.
/i am not going to give up... I wouldnt be running around bristol trying to get help from every angle if i was giving up...
I work hard, I am studying, I am skint and I know I am trying...
All I really hope is, is that its not too late.

I just really wanted to see if anyone else was spiraling into madness with this and its reasurring that some are, or have been and are on the route to balance.

thanks again!
 
Lucie75 said:
Hi Lauren, I don't think you are alone in this at all. There are lots of cases where people who have been diabetic for many years suddenly hit a brick wall, go into denial, lose confidence in everything diabetes-related, feel awful, stop testing because you are afraid of how high you are, start eating all the wrong foods etc etc etc. Been there, done that, got some help. I too see a team in Bristol (who are fantastic), and I was referred to a psychologist as an urgent case - I was seen within a couple of weeks I think. It turned my life around but more importantly my sudden inability to look after my diabetes (which I'd had nearly 30 years at the time) didn't surprise my consultant at all. I had loads of support and know where to go if I see myself heading that way again. Which clinic do you go to?

Best of luck!
Click to expand...

///i have been to my Dr at St Martins surgery in knowle. I have also seen the Surgery Nurse, who is not a specialist herself.... she just has a keen interest in Diabetes... She has reffered me to a specialist but I am yet to gt an appointment... the joys of waiting around huh?
 
It's a shame you're in South Bristol because the team at Southmead hospital are one of the best in the region. It doesn't sound like you go to a hospital clinic though - you really need to get yourself into one of these. It's widely known that clinics held at gp surgeries leave a lot to be desired. If you can't get into Southmead I think clinics are also run at the BRI in central Bristol. Hospital clinics are much much better as everyone you see there will be a specialist in their area. Get yourself signed up!!
 
Thanks for the info Lucie! Much appreciated Ill get on it nest week. Can I just go in and get myself signed up? Ill research it if you dont know.

thanks again
 
Not sure, might b worth phoning and seeing what they say. Good luck!

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