Type 1 for 6 weeks..... tell me there is light at the end of the tunnel???

[Ginnie]

Hey,
Im 22 and was in for a shock (as im sure everyone is) when after being very poorly for a few months but due to many professionals letting me down I started to rapidly lose weight dropping to under 7 stone. One friday after being exhausted from work my boyfriend bought a home testing kit for your sugar levels after us having suspecting I could have diabetes anyway many hours later sat in ane my levels were at 45! I spent 4 days in hospital which had its complications with more let downs. Im now trying to start work again and get back to normal but feel I take one step forward and three back. My emotions are all over the place the doctors seem to be a joke and every time I try and cometo terms with it I crumble....... All I hear is I will get use to it and its new but even the small easy tasks seem impossible on some days! On a good note im at a healthy weight and have never had such a healthy diet 🙂

 

[Northerner]

Hi Ginnie, welcome to the forum 🙂 But sorry you have joined the club

Good to hear you have regained your weight. What insulin regime are you on? I would highly recommend having a look at our Useful links thread, in particular the book Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas. It will explain everything you need to know about living with Type 1. Well, maybe not everything, but for those things it doesn't, you have us!

It will take time for things to settle down, so try to be patient and not overwhelm yourself feeling you ought to be on top of things by now. You will continue to learn, both from reading and asking questions, but also from your own personal experiences. It's very important to make sure you record everything so that you have information at hand to help spot patterns and inform future decisions. Keep a food diary with the carbohydrate amounts in your meals recorded so that you can build a picture about how different meals affect you, and how your levels behave at different times of the day and night.

I was diagnosed over 4 years ago and am still learning But after those first few months I started getting a handle on things and from then it has been f.ine-tuning and dealing with new things in a more informed way 🙂

This is often described as a marathon, not a sprint, so take things a step at a time. If you have any questions, please ask. Nothing is considered 'silly', and there are lots of lovely, friendly people here who will try their best to help you out 🙂

 

[Ginnie]

Thank you for the reply and reassurance. Im on novo rapid with every meal 12 units and lantus at night. 10 units?? Yeah iv got a few books not that one though so ill have a look 🙂. My main problem over the past few nights have been lack of sleep, headaches, hypos, itchy skin,itchy eyes and being very irritable...... I have a food diary and have started carb counting iv noticed some patterns but unexplained hypos are something that I struggle with more than anything im surprised at how angry I get im usually very patient and strong willed.

 

[Northerner]

Thank you for the reply and reassurance. Im on novo rapid with every meal 12 units and lantus at night. 10 units?? Yeah iv got a few books not that one though so ill have a look 🙂. My main problem over the past few nights have been lack of sleep, headaches, hypos, itchy skin,itchy eyes and being very irritable...... I have a food diary and have started carb counting iv noticed some patterns but unexplained hypos are something that I struggle with more than anything im surprised at how angry I get im usually very patient and strong willed.

You're on a good insulin regime there, and will be able to learn how to match your doses to what you wish to eat and hopefully your levels will begin to settle and those symptoms will diminish. Are you on any other medication (for anything) or just the insulin? Does your lifestyle allow for regular meals you can make yourself? This can help as you can be sure of exactly what is going into your meals and that will help you to relate your levels to your food with confidence. It can also help to be fairly consistent (boring!) with what you eat so you are not giving yourself too many variables to work with. How are your healthcare team? Do you have a good consultant and DSN? Have they mentioned any diabetes education courses for you in the near future? You might find the online carb-counting course useful at http://www.bdec-e-learning.com/ .

 

[Ginnie]

Im just on the insulin no other medication. I work shifts at work with a cook who prepares the meals but work have been great and they are willing to cook separate foods for me while im at home im eating similar foods if I eat out its a nightmare. My health care team are not great at one point I was told 'i slipped through the net' after talking to my consultant a few weeks ago I cant get hold of my dsn the doctors keep telling me they dont know much about it my dietitian I met with once then she was a no show! Yeah the dafne course but not for another 6-12 months. My levels on average are between 5-9 but when I get to 4 I feel like im in a hypo!!!

 

[Northerner]

Im just on the insulin no other medication. I work shifts at work with a cook who prepares the meals but work have been great and they are willing to cook separate foods for me while im at home im eating similar foods if I eat out its a nightmare. My health care team are not great at one point I was told 'i slipped through the net' after talking to my consultant a few weeks ago I cant get hold of my dsn the doctors keep telling me they dont know much about it my dietitian I met with once then she was a no show! Yeah the dafne course but not for another 6-12 months. My levels on average are between 5-9 but when I get to 4 I feel like im in a hypo!!!

Sorry to hear you don't have good back-up, it's pretty poor that you can't get hold of your DSN, and as for the dietician!! Grr! Your levels sounds quite good generally, but you are probably feeling hypo in the 4s because your brain and body will have got used to much higher levels prior to diagnosis - especially since your diagnosis took a while coming. As you get used to more normal levels you should only feel hypo symptoms at lower levels. Make sure you always carry your hypo treatment of choice around with you - mine are jelly babies! 🙂

GPs tend not to see many Type1s as it is a relatively rare condition, so they are often unfamiliar with the treatment regimes. Hopefully, they are not whingeing about your prescription items like needles and test strips!

 

[Ginnie]

My dsn has always been difficult to get hold of when I first came out of hospital my levels were still in the 20's it took the dsn a week to answer my phone calls... Yeah mine a jelly babies pretty good silver lining if you ask me 🙂 iv got stashes of food everywhere just incase. Gp have been good with prescriptions apart from a broke sharps box and its been near impossible to get my flu jab.

 

[Robster65]

Hi Ginnie. Welcome 🙂

When most people are first diagnosed, they go through a period of mourning, which can last for days to many years. After your experiences of being let down by the professionals, I would imagine you're feeling angry, alone, confused, etc, etc.

All that and the body that was ticking along nicely is suddenly not so reliable!🙄

Hopefully, the forum can fill in some of the gaps and give you a few strategies to cope with day to day living. The book by Ragnar Hanas really is worth getting hold of.

The one thing that is true, is that it does become 'normal' after a while but doesn't ever become easy. It's something you have to work at, much the same as keeping fit or doing crosswords. Your levels sounds fantastic at the moment and many of us would kill for those figures. Your boyfriend sounds very supportive, which is brilliant. If he can learn along with you, it'll ease the burden.

Keep checking in and asking questions, and reading other posts. I hope you find someone in your team who you can rely on. They're all very stretched these days, sadly.

Rob

 

[Ginnie]

Yeah iv heard about the delightful stages the problem is im still not willing to except it all yet but I know me being stubborn is not helping or going to change anything I think its the lack of control I have now I want to eat out, just jump in my car or run around with having to plan it all. This forum looks great and very helpful I think just hearing from people who have actually experienced it all is more reassuring than any professional well in my experience so far 🙂. im happy with my levels I seem to have pretty good control most day but iv learnt what my body likes and doesnt. My boyfriend is great he knows more about it than me well apart from eating a lovely plate of chips the other night compared to my bowl of veg 🙂

 

[Steff]

Ginnie hi and a warm welcome to the forum,sorry you have to be here but now you are you will find like you already have people in here are amazingly helpful and supportive

 

[pgcity]

Hiya
Sorry you've had to join us all. It will get better and you will come to terms with it all. Honest.
It sounds like you have already done a lot to help yourself but do try and push to get a decent dsn as they can be such a support.

 

[trophywench]

Hi Ginnie

Snap! - I was 22 too! It is hard - I can remember it very well and I didn't like it. I felt 'lost, alone and unloved' and the more nice people were to me the worse I felt. Lots of crying. Usually on my own.

But actually you know - this IS 'normal'. has anyone mentioned 'The Five Stages of Grief' to you? - see

http://www.diabetes-support.org.uk/info/?page_id=50

Can you identify with anything Tiger Lily or Elizabeth Kubler Ross is saying? I never read her words of wisdom till I'd had D for 35 years and it helped me even then. It put it all into perspective. I kept saying to myself, I shouldn't feel like that. People told me I would get used to it and I never believed em either. It's too soon. It shouldn't happen to me. I don't deserve it, I must have been really bad in a former life. And especially - Nobody else can possibly understand no matter who they are ............

Well, the people we already know don't and can't ever.

Elizabeth told me that it was perfectly OK that I would feel as I did, it was correct and acceptable to do it.

I think families and friends should also read that and you can turn it into a joke if you like - that's my defence mechanism for all sheet that happens to me - try and find a funny side. (Hey guys, I realised last night I've moved on from Stage One now. Apparently in Stage Two I'm going to make your life Hell (or whatever it happens to be in Stage Two) - so you can be sure I'll do my best to do that so you won't be disappointed in me!)

But the people we don't know to begin with - and there are millions of them worldwide! - are other diabetics, and every man jack of us knows EXACTLY what you are going through because every single one of us has gone through it ourselves.

The truth is Ginnie, it DOES get better. PITA really that 'they' should be right and another diabetic should tell you that, when I know you can't see that and you might right now think I'm being horrible to you by even agreeing with 'them' in the first place. Sorry.

In the finish anyway, not only did I end up accepting my D, I actually quite like it. That's potty isn't it? Well no it isn't because I have met some really utterly lovely, interesting people just by having diabetes and us both saying 'Hello' and some of em now I class as 'proper' friends. ie if they found a cure, we'd still be mates.

You'll get there. Take your own time and take 'baby steps' - just like walking up a hill, you'll get to the top a lot easier by taking smaller paces.

Good luck! and {{{Hugs}}}

 

[Ginnie]

Thank you everyone and I cant believe its took me this long to finally get involved in a forum! I think a great thing about forums are that I can believe when someone whos has had diabetes for years and is experienced with living with that it will become normal where having a unrealistic doctor iv found it frustrating... Yeah iv heard of the different stages but ill have a.look at that website im really interested in learning about it because it will help. I think like everyone I just already want it to be normal just skip past all the hard bits, would be nice!! I do need a better team around me im thinking about moving hospitals see if it will be easier iv rang the dsn every day since monday iv been experiencing new symptoms and had a hypo without realising but again no answer... Im so pleased with all the response on here its great 🙂

 

[trophywench]

Do you attend Tameside or some other hosp?

Only asking cos Tameside appears to be a "DAFNE centre" ie they offer it - so you'd kind of assume from that, that they ought to be at least 'OK' ?

 

[Ginnie]

Yeah im under tameside and personally iv not had the best care so far unfortunately even staying in hospital when I was first diagnosed the staff werent brilliant but it was a weekend and the staff were different the after care team im still waiting to start but what can you do?? I hear manchester royal.are amazing???

 

[CBee]

Hi Ginnie,

I've been diabetic for 10 months now (diagnosed at 23) and things have (steadily) gotten better. I'm less resentful of "having" to test my blood it is becoming part of a routine, but it is still hard and you must allow yourself those moments. I think what affected me most was that whilst people told me things would get better (I know hate that phrase lol) they didn't tell me how long and this is what is hard because there is no time limit. Take each day as it comes and keep all the positives in mind (this helps - things like the boyfriends, in all their patience with our crazy mood swings!)

Keep your chin up, listen to your body and shout if you need help 🙂

 

[Dory]

Hi Ginnie. Welcome 🙂

When most people are first diagnosed, they go through a period of mourning, which can last for days to many years. After your experiences of being let down by the professionals, I would imagine you're feeling angry, alone, confused, etc, etc.

All that and the body that was ticking along nicely is suddenly not so reliable!🙄

Hopefully, the forum can fill in some of the gaps and give you a few strategies to cope with day to day living. The book by Ragnar Hanas really is worth getting hold of.

The one thing that is true, is that it does become 'normal' after a while but doesn't ever become easy. It's something you have to work at, much the same as keeping fit or doing crosswords. Your levels sounds fantastic at the moment and many of us would kill for those figures. Your boyfriend sounds very supportive, which is brilliant. If he can learn along with you, it'll ease the burden.

Keep checking in and asking questions, and reading other posts. I hope you find someone in your team who you can rely on. They're all very stretched these days, sadly.

Rob

All the above is so true - Hi and welcome Ginnie. I've had diabetes for 23 years now (diagnosed aged 8) and my one bit of advice would be: no matter how much you read up, make notes etc, there will be days where something happens (you'll go high or low) for no reason. The important thing is to accept that sometimes this happens and move on. the body is a weird thing and minute things that we don't even acknowledge will have our bodies reacting differnetly from one day to the next. My clinic advises new patients that it can take 1-2 years for things to settle - although I'm very jealous of your average bGs so far!! 🙂

As I've discovered, there are so many lovely people on here to offer support and advice so ask away if you want/need to!