T1 and in need of some help

[sd29]

Firstly, apologies for moaning. At 29, I feel very old.

I was diagnosed as t1 in May last year and since then, my GP, consultant and DN feel I have been in complete denial. I am trying hard, but live alone, no family, have a very stressful and demanding job (often clocking up 60+ hours per week). My last HBA1c was 16.3% (really!) and I have been told today that with a BMI of 15, I am now dangerously underweight. The advice? Prescribed fortisip and told to switch to full fat milk! I asked for help and was sent away feeling humiliated. My hair is falling out, and I feel terrible, so tired.

I don't even know where to start to begin to fix this, as sometimes I need over 120 units per day to get blood sugars to the low teens, and other days I am ridiculously insulin sensitive. My GP thinks I am omitting insulin when I am not, I can't get into a routine though which causes a ketone build up and as I am so run down, I pick up every bug, which causes the resistance, more ketones then more weight loss. A vicious circle. Also, keep kinking infusion set as so thin, I now have no fat which makes it worse. HBA1c so high as had untreated systemic infection for a month and DKA.

I'm feeling so down with it all, (even with my friendly meter that says 'Hi!') and feel like giving up on it. My boyfriend broke up with me as the diabetes and pump bothered him and I went too skinny, and I'm worried that as I keep on getting sick, I might lose my job too, even though I go in no matter what, unless I am in hospital.

Why is it so hard? Please, any words of wisdom would be gratefully received! Sorry for whining.

 

[weeezer]

you poor ol thing! sounds like you're feeling very lost & un-supported at the mo. i'm T1 and so is my mum - she is currently using over 200u and STILL can't get a grip on her levels. i'm doin ok, but feel for you & my mum, it must be completely soul destroying when you're shoving the insulin in and still get high readings.

what makes you take 120u some days but not others? if you're producing ketones does that suggest you need more insulin...could your pump be not working properly at the mo? if this is a possibility could you try MDI for a bit to get back on track without 'kinking' (know nothing about pumps...)

gather you're on a pump which i have no experience of, could you outline what regime/units you take and hopefully some pump users will be able to comment?

 

[Anonymous]

I'm not on pump either so I can't advice you on that.
I think you need to start putting yourself first and realize that you're more important than any job! Is there any chance that you can cut down on your hours? It sounds like you're really run down at the moment and you really need to focus on your health at this point. At least somewhat regular hours to get your sleep and meals in order is a good start. I also suggest that you test a lot and keep a record of the numbers, bring these to your doc or the DN and get them to help you with your insulin dosage. Start with the basal dose, if that one is right everything else becomes easier. Getting your bs down will also help you with your other issues: appetite, mood, energy.
I hope that there'll be a pump user along to advice you further, please take care!

 

[Flossiealexis]

Hi

My goodness poor you I totally understand. I have been through all of this too its like a parallel and I promise it does get easier. Don't get me wrong it is not easy and as for the denial thing I am 28 now about to turn 29 and I was in denial for 10 years! Trouble is now that I am not I have started to see how bad that was for me. I also, during my worst years, went down to be really skinny and tired and picked up lots of infections, I was in and out of hospital and living in london at the time and also doing a 60 hour week. Before they gave me a pump though they insisted on me going on a DAFNE course. I went thinking it would be the biggest waste of time as up until then I just thought I was the only diabetic in the world basically because I hadn't come across alot of other people who were diabetic and I felt alone and then I went on the course.

It was quite honestly the turning point for me a total shock. There was a man there with no legs really lovely chap and he had a couple of kidneys from his brothers and sisters. There was another lady there who had a kidney from her husband as well. Each of us was there because in one way or another we were mismanaging our diabetes. Some of us had had it three years some of us had had it longer I am now 27 years in. My point really here is it was such a shock and such a wake up call to realise I firstly couldn't carry on that way and also to realise that I wasn't alone with this, there are lots of other diabetic people out there and it shocked me into really focussing on this.

You are not alone in your struggle, and yes it does take alot of time to manage but once you do take this time and you start to get better, maybe not straight away but over time even after a week you can feel better quite quickly. Diabetes for me has become more like a constant friend I do have to look after it all the time but its easier to think of it like that than think of it as an enemy. I think having the pump is a good physical reminder to me that it is there. My best advice for you would be to book a week off work as soon as you can. You have to have a starting point so if you have the time off and do some of the DAFNE principles I think that soon enough your blood sugar will start to fall.

When my blood was that high I started off by committing to two hourly blood tests even through the night and yes I know when you are exhausted this is awful but it helps it will also show if the basal rate in your pump is ok. To be honest, with the pump the best thing you could do is not eat carbs for twenty four hours. This will give you the info on your basal that you will need. I don't mean not eat at all but try and go carb free. The trick with the pump I think is getting the basal rate right. I found once I had done this it made the rest alot easier. I would also say that if you are on the pill make sure if you are happy on it that you go with a progesterone only pill diabetes wise this is the best one and also this will help you to regulate your sugars as well as your cycle can be problematic with your sugars. Lastly write everything down at the moment. If you can establish a pattern this will help you. Right I don't want to overwhelm you but if in this week you do add carbs in then for now just go with one unit of insulin for every ten carbs and see how this works. If you can stick to these rules and see what you find out and give yourself the time to just concentrate on this for a short while it will make you better prepared for moving forward. I am sorry if this is really long and everything but I hope you find you can move on from where you are because it really will make you feel better.

Lastly if a man can not accept your diabetes then he is not right for you because that is who you are now I know it is hard and if you are heart broken then it is really not easy to swallow but there are men out there who will accept it because I have found someone so there is hope. Keep your chin up and come back if you want anything else I am more than happy to help you along and I would be really delighted to hear from you if you get better as well. Persevere you will get there!

SJ